Sue Mayer - Special Needs Mom

Sighing...But Surviving!

2012-01-14T23:29:00.003-06:00

I've been putting off this post. I was so touched by all the wonderful prayers and reassuring messages I've received in the last couple of weeks and they allowed me to feel so positive going into Sam's doctor appointment on Friday. But on the ride in, the radio announcer brought to my attention that it was Friday the 13th.

It's funny how something so insignificant can throw you off balance. I thought about it and then shook it off but that little shred of doubt/worry seemed to take root. I began to get nervous. Sam was his usual bundle of joy talking to everyone he saw, smiling and of course calling for Mom at least 100 times in the waiting room. I never feel ignored or neglected around Sam.

They called us in for the x-ray. Sam began to complain...okay it was more like staging a battle but we finally worked through it, got him on the table and got an x-ray. I prayed a little more as we went back to the waiting room.

They finally called us in for our appointment. Sam's x-ray was up on the screen and although I'm not a doctor or radiologist I desperately scanned the x-ray for white fluffy stuff which would signify new bone growth...but there didn't seem to be any. My mind began to reason that I'm not really sure what I'm looking for...I'm not a doctor...and yet my eyes continued to go back to the x-ray searching for some type of change, something that looked different. For the next half hour I went from talking to Sam to searching the x-ray.

The resident came in to ask the standard questions and to check Sam's range of motion and his gait. I felt a tinge of hope when I found out his name was Ben...could this be a sign God??? The resident having the same name as Sam's brother. I was grasping at straws.

Sam's range of motion had improved...that was great news. His walk/gait is still compensating for the lack of bone in the hip...that remained about the same. I finally could not stand it any longer I simply asked "Is there any new bone growth indicated on the x-ray?" Dr. Ben searched and compared and searched and compared and said "No, that doesn't seem to have changed." He said it so matter of factly, like he was replying to my inquiry on if the weather still predicted more snow. My shoulders dropped, my expression was as lifeless as the long sigh that escaped me. No bone growth...it has been over a year and we still have no new bone growth.

Dr. Thometz came in and seconded Ben's opinion but his expression resembled mine. He, like I, wanted to see that white fluffy stuff...but then his expression became even more pained as he explained that he could still see the subcondral ridge which is the first thing that starts to become less apparent as the healing process begins.

I took a deep breath, gathered my strength and asked, "So what do we do?" He again reviewed with me that his colleagues had not come up with any suggestions at the conference that Sam's case study was presented at. He assured me that Sam's surgery was very successful in containing the femur and he was happy about that but he pointed out that Sam's healing rate is slow. He would want to continue to wait and see. My mind is thinking...wait and see??...Sam is 11 years old and we are running out of time.

I asked, so if we wait and see and in a year or two Sam still doesn't have adequate bone growth what happens then. He said we would be looking at a total hip replacement and with Sam's low tone and lax joints that would come with it's own set of problems. The Friday the 13th doubt and worry had just blossomed into a nuclear bomb.

I asked if we are in agreement that the best possible scenario for Sam would be to try to save the existing hip. He agreed. I asked if he would be willing to confer with Dr. Dror Paley and go over Sam's case with him. He sighed and said "Yes, I would do that for Sam." I went on to explain, while trying to keep my composure, that I want to do everything possible for Sam to give him the best chance at mobility and pain free mobility. He's my child and I have never been the type of parent to agree that another deficit would be okay because Sam already has other issues. I want him to hear the best he can, see the best he can, breathe the best he can, feel the best he can, speak the best he can, learn the best he can....and walk the best he can. I have had to focus on aspects of Sam's health and life that most parents will never have to think twice about.

I look over at Sam, he turns and smiles and says "Hi Mommy" "Go home?" I say "Yeah Buddy, it's time to go home". He thanks Dr. Thometz, jumps in his wheelchair and continues to smile and say "Hi Lady" or "Hi Man" to everyone we pass. I pray for continued strength and the positive outlook that Sam naturally exudes.

We head to Children's Hospital for the dreaded blood draw. When they call Sam's name he happily sits in his wheelchair as I wheel him into the room. He even gets out of his chair to sit in the blood draw chair but the happiness ends when he sees the blue bands and he realizes a needle is soon to follow. As usual reinforcements are called in and they work their hardest to try to comfort Sam but Sam is beyond comforting. I begin to pray and say out loud let's just make this as quick and accurate as possible. I wish I could say that the screaming no longer bothers me...that I have learned to shut it out but I would be lying. It kills me every time my child screams like that and I will never get used to it. When they finish Sam immediately stops screaming and crying, he smiles, thanks them and says "Okay Mommy, go home?" "All done".

I load him into the wheelchair and as he happily meets and greets everyone we pass I try to put myself back together piece by piece. I load him and his wheelchair into the car and I put my head on the steering wheel and again pray for strength, courage and a whole lot of stamina. I start the car as Sam begins to sing with the song on the radio "It's 5:00 o'clock somewhere"...and I couldn't agree more. As I listen to Sam's sweet little voice trying to articulate the song I grab on to the life raft he's offering and begin to sing along.

This next week will be filled with getting Sam's records, x-rays and CT scan to Dr. Paley and setting up a conference between Dr. Paley and Dr. Thometz. I will then wait for Dr. Paley's recommendations, pray on them, discuss them with my family and make some more very difficult decisions. And I know that when ever I begin to feel overwhelmed a certain little boy will come and give me a hug or tell me he loves me or put his shirt over his face to make me laugh and I will carry on.

Looking For Some Extra....!!

2012-01-12T19:04:00.002-06:00

I received so many wonderful email responses from my last post. I want to thank everyone for reading, for listening and for your encouragement. I have the best friends and followers.

In the last month I have been mainly concentrating on Sam's diet, supplements and getting him back into his home program. I cleaned up my house like a maniac because of the holidays and because it really needed it. But honestly...I knew I was using cleaning, Sam's new regiment and the holidays as a wonderful distraction.

In a continuing effort to live in the present and not stew over the past or worry about the future...I was concentrating on each day. For the worries that wanted to take me over...I wrote them down and put them into my prayer box. I began each day praying for guidance, praying for the people and concerns in my life and then I prayed for a little extra...

Patience to allow me to work with Sam and be a good listener to my friends and family. Courage to face whatever life might throw me next. Strength to be a good friend, good wife, good mom, good person and to be there for those that need me. Faith to my God, my husband and my family. Love for my husband, my children, my family, my friends and my community.

Tonight I need to ask for a little something extra from all of you...extra prayers.

Tomorrow Sam will go in for the x-ray on his hip. This appointment will determine if we stay in Wisconsin or if we head to Miami, Florida to see Dr. Dror Paley, a specialist in the field of Perthes. If the x-ray shows that his hip has stopped breaking down and re-growth is occurring we can wait a little longer and just schedule the hardware removal surgery from his hip and thigh bone. If the x-ray shows that the hip is continuing to break down from Perthes or there is no re-growth we need to move on to a different surgery option. We are running out of time to help Sam grow a new hip bone and Sam's mobility is at stake.

No matter what happens we are thrilled to see improvement in other areas due to his new diet and supplements but regrowing the hip is one of our main goals.

As I go to sleep tonight I am trying to shut off my brain, to concentrate on positive and good thoughts and I keep praying. And as I look at Sam drifting off to sleep without a care in the world...I again thank God. Good Night Everyone!!

Praying, Thinking and Reflecting!!

2012-01-10T21:21:00.004-06:00

I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.

Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.

When Sam became more stable my health took a downward spiral...and yet I found strength.

I went on an amazing road trip...and I knew I was blessed.

Ben almost lost his life in a truck accident...and I am thankful that he is still with me.

Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.

My father-in-law was diagnosed with colon cancer...and I continue to pray.

I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.

Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.

But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.

Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.

And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.

I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.

I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.

The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.

I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.

Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.

Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.

Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! Good night everyone!

Our Journey With Diet and Supplements

2011-12-30T08:59:00.016-06:00

Sam came into the world a whopping 10 lbs., 2 oz. and I originally took that as a sign that he was not going to be like the typical child with Down syndrome because from my reading most were born early and they were small. He was only a day early and that was because I was induced and he looked like a toddler when he was born. It should have been my first clue that Sam was not going to go by the book, Sam's journey was going to be his own and he didn't want me to get comfortable with anything written or pictured in a book. Now looking back, how could I have possibly thought that there was a typical child with Down syndrome?? They are all so very unique.

As I researched Down syndrome and tried to understand our new reality I quickly became side tracked as Sam decided to keep me focused on him. He had feeding issues, he seemed to struggle with breathing while he slept. His feet and hands were often so blue or purple that I would hide them in his pajamas so people wouldn't stare. Wow, it was fun finding these pictures again, but take a look at Sam's hands in our Christmas photo. They are perfectly purple. I have really cute kids...don't I??? Okay...so I'm a little biased.

Sam's first year was a rough one with numerous hospitalizations for illness and respiratory issues. He was on antibiotics so many times I lost count. It seemed so hard to keep Sam healthy and breathing correctly not to mention trying to get food in him. Sam loved to eat, but he had swallowing and breathing issues...those two bodily functions didn't seem to work together for him. We had to thicken any and all thin liquids to keep Sam from aspirating. I was awake more than I slept in that first year as I continually needed to monitor Sam's breathing and re-position him as needed to maintain a good airway. My first year I was overwhelmed by trying to understand if what we were experiencing was a result of Down syndrome or something else. This was my first experience with a medically involved child and I was trying to learn as fast as I could. I often got discouraged when I saw other children with Down syndrome who seemed to eat and breathe fine, who seemed to be progressing and meeting their developmental goals.

Our first big set back occurred on the day Sam was baptized. Sam was 1 month old and he seemed lethargic that day and it was more difficult than most to keep his airway stable. Looking back I now know I should have had a pulse ox and oxygen available in Sam's first year but no one seemed to know the extent of his breathing issues. Sam began to have some severe apnea issues where he would have to be physically startled to take a breath. During these times he would turn a bluish gray color and we rushed him to Children's Hospital. The doctor's seemed to be skeptical because Sam arrived awake and pink in color but they quickly took a look at his heart, considered reflux and did a chest x-ray. Sam was admitted for observation and it was when he fell asleep that the episodes returned but now he was hooked up to a monitor and I could see what was happening. Sam would drift asleep and suddenly all of his stats just dropped off and he did not return unless I physically startled him. I called the nurse in and it happened again and this time everyone came running. We were transferred to the ICU and a tube was put into Sam's nose to send a message to the brain that he needed to use this airway. Sam was originally a mouth breather but after many medical tests we found out that the combination of his tonsils and adnoids taking up 70% of his airway uninfected, his floppy airway and extra esophageal fold put him at a huge risk for apnea. It was at this time that we were given a very bleak picture that because of Sam's severe apnea issues that he most likely had suffered a brain injury from oxygen deprivation and his right side was showing a significant weakness. Here is Sam after he returned home.

We did notice that his right side did not move as much as the left and if he rolled over he often lost track of his right arm or leg and they could end up in strange positions. Sam did not belly crawl until he was 19 months old and he did not walk until he was 3 years old and these events only occurred through a lot of work and with the help of NACD. But even through the set backs it was this face and smile that kept me going.

Although Sam's life was filled with medical appointments and evaluations, Ben and Danielle just kept loving him and they were both very protective of him.

After his ICU experience we now had more cardiac appointments as they monitored Sam's ASD. We were scheduled for a swallow study but interestingly the sleep study didn't come about until he was 10 months old. It also is interesting to me that an apnea monitor and oxygen didn't come home with us. Hindsight is a wonderful thing but not much help when you are going through the experience. The swallow study diagnosed Sam with dysphagia or a late swallow. Sam failed the sleep study in spades. The ENT point blank told me that unless Sam had his tonsils and adenoids removed immediately he would become a pulmonary cripple. At 11 months Sam had his tonsils and adenoids removed and I was pleasantly surprised by how much better he and I could breathe and sleep. I know you are all loving the baby pictures, so here are a few more.

Sam at 3 months, already looking forward to his employment at J&H.

Sam at 4 months old, monkeying around.

Sam at 10 months old. Yep, he has always been adorable.

And his 2 favorite people in the world, brother Ben and Danielle.

We had a huge birthday celebration for Sam. I think I was thrilled that he and I made it through the first year.

The next photograph is one of my absolute favorites of Sam and Danielle together.

So, in all honestly, in Sam's first year I was not overly concerned with diet and supplements because I was focused on swallowing, eating and a little thing called breathing. We began with NACD when Sam was 18 months old and it was the first time I had heard about Nutrivene and Ellen Doman had requested that we remove dairy from Sam's diet. In all honesty...I thought Ellen was way off about dairy...I mean we live in Wisconsin...the dairy state?? But as I was soon to learn, she was usually spot on and I had some learning to do. We removed dairy and Sam's congestion went away. I thought congestion was just part of Sam, I couldn't remember when he wasn't congested. The change to raw goat milk, almond milk and rice milk was one of the easiest changes and because we saw an immediate result it was easy to stick to. I had so much to learn and my next dive was into the world of supplementation. I checked out Nutrivene and loved the testimonials. I thought this may be an answer to my prayers and I ordered the powder. At first Sam would happily take it in his applesauce but that ended after about 2 weeks. The other problem I had was that Sam seemed less focused, more stimmy and I hadn't even gotten up to the full dose yet. His skin looked worse with some added rashes and his temperment changed. I quickly figured out that my experience with Nutrivene was not going to make it in the positive testimonial section. I began to realize that once again Sam's journey was going to challenge me further. I still felt in my gut that Nutrivene was a good supplement and I still recommend it to parents that ask me about supplements.

After talking with a fellow NACD mom we switched Sam to Brain Link and Cod Liver Oil and his body seemed to like it. His focus improved and the stimming reduced down to his typical amount...Sam has never completely given up on stimming. It's a dream I have. When Sam was little his stimming was rocking, playing with images out of the corner of his eyes, getting too close to the TV screen and a little bit of flapping or finger play next to the eyes. The stims have changed over the years and he is always very creative with his stimming. He could start out with good play and turn it into a stim.

It was nice to see that in Sam's 2nd Christmas photo, his color was so much better and his hands were nice and pink.

When Sam went in for his 2nd year cardiac appointment we were disappointed to hear that his ASD had not closed on it's own and he would be scheduled for surgery on his 3rd birthday. I jumped into research mode again and found Willis Langford. Willis was a wealth of information and plunged me into the world of nutrition and supplementation. He was the first to talk with me about Leaky Gut. He answered my gazillion questions and tried to desperately teach me about the body's metabolic systems. It seemed very over whelming to me and I felt like I would need a bio-chemist to assist me. We began to give Sam Mannatech supplements. This was our only addition to his supplements and amazingly when Sam went into his 3 year cardiac appointment his ASD had closed and his surgery was cancelled. My mind began to wrap around the idea of helping Sam's body through supplementation.

I joined the Einstein list and I spent a lot of time reading through the archives. I'm not going to go into lengthy explanation on the metabolic cycles regarding Down syndrome because others have done it so much better than I could. Please see: Basic Cell Biology for Parents of Children with Down syndrome, Down syndrome is a Treatable Condition, and my all time favorite...A Hole in the Bucket. I began to piece together things I had heard from doctors, nutritionists, holistic doctors and other parents. Sam continued to have issues with respiratory illnesses, pneumonia and croup. I tried a lot of different supplements but they didn't seem to address these issues. I got excited when I read about a supplement that helped a child on the listserve but I was quickly discouraged when Sam would have the opposite result or even worse side effects. Sam also had skin reactions, behavior breakdown, temper tantrums and side effects to medications that were not expected. I often felt like I was fighting a losing battle.

NACD began to talk with me about changing Sam's diet. Leaky gut came up again and I jumped into my research mode again. So much of what I read pretty much described Sam. I began to wrap my mind around the fact that Sam's diet needed to be addressed. The nutritional supplements would be lost on a system that couldn't digest and use them. I added supplements to address yeast to our protocol (a probiotic, grapefruit seed extract, garlic & oregano oil) and I began to slowly break down Sam's diet. Something Ellen Doman said to me really helped. She told me about the SCD diet but she told me to think of Sam's diet in the terms of fruit, vegetables and meat...as organic and natural as possible. Shop on the edges of the store and skip everything processed in the middle. I remembered hearing that vegetables that grew close to the ground were the healthiest and should always be organic.

I would love to tell you that I jumped in head first and all our problems were resolved. Instead...I struggled...I listened to those around me that said that having something special or off diet once in a while can't hurt....birthday cake...ice cream...a McDonald's Happy Meal. I mean, shouldn't every child experience a Happy Meal once in their life? I thought that if I watched his diet most of the time...I was doing great. Well, I quickly learned that my lack of commitment to the diet wasn't helping Sam in any way. I was still feeding his yeast issues and with the yeast came lack of focus, increased stimming, temper tantrums, hissy fits, bad bowel movements and his bodies inability to absorb and process nutritional supplements or medication. We were still in a bad place and Sam's immune system was still suffering.

I would often jump back on the diet but I learned that dietary changes do not necessarily show immediate outcomes. If I followed the diet for six weeks the changes were often so gradual that having not done this numerous times I could have missed them. I had to begin to realize that this was not a diet but instead a life change. Sam needed me to jump in head first and keep swimming. If I was going to help him heal his gut and improve his immune system I had to be committed to changing his food choices. I needed to let go of the idea that Sam could eat whatever we ate and I needed to really pay attention to giving Sam's body what it needed. It is now easy for me to tell when Sam's system is off. He recently was hospitalized for double pneumonia and a secondary infection and was on 4 different IV antibiotics before they determined which one was best. Sam had an allergic reaction to one of them and minor reactions to the others but most notable was the change in his behavior. He was hyper, stimmy and the gluten free choices in the hospital had too much rice for his system. We needed to get back home and work with the food choices that I knew his system could handle. Being gluten free was not enough for Sam, his system didn't handle a lot of rice well, corn was out, sugar was out. He couldn't handle enzymes but he needed them. His yeast was resistant and one course of supplements wasn't going to do much.

I had figured out that Sam's system did well with fermented vegetables and we love Little Red Hen and Company products. He eats a scoop of these before each meal and this helps him digest his food better. Sam also has a scoop or two of coconut kefir made by Slow Pokes a local store in Grafton, Wisconsin. The kefir can be mixed into a liquid or Sam and I can both eat the flavored kefir straight. Another wonderful find was a bread that Sam could tolerate. Most gluten free breads are made with rice or tapioca starch which didn't seem to work well in Sam's system. Slow Poke's brings in a bread from Deland Bakery which is a vegetable (zucchini) bread with millet.

I didn't really know what to supplement anymore. I would hear about new protocols and give it a try but Sam would quickly show me that he couldn't handle the supplements. Putting Sam on gingko or body bio oil resulted in increased stimming, lack of focus and inattention the exact opposite of what it was promised to do. We tried the Speak supplement for speech with some great initial results but increased stimming and a drop in speech after being on it for a month. His pulmonologist was hoping for the magic pill for Sam that would keep him from going into respiratory distress but everything we tried Sam reacted poorly to. He would become manic on inhalers or steroids. He would break out in rashes from antibiotics. Sam's bottom has had a rash on it for the last 4 years and every time we tried to treat it we made it worse. I noticed other changes too...Sam's eyes are always dilated, his pupils do not seem to react to light appropriately. So think about trying to read when you have been at the eye doctor and they have dilated your eyes. Hmmm....that could be a problem. We also have the added diagnosis of Perthes which in Sam's case is a late stage and has continued to break down his hip even after corrective surgery. So even with the advances and positive things we have seen with his food choices we still were not giving his body what it needed to function properly.

I wanted someone to test Sam and help me figure out what to supplement. I wanted to know why Sam couldn't take supplements that should help him. I wanted to move forward instead of feeling like we are always falling behind or waiting for the next diagnosis to hit. Although this journey with Sam has taken me to more doctors and specialists than I ever hoped to meet in my life I was willing to try one more. In my research on Perthes or AVN I had read about some patients seeing good results with oxygen chamber therapy. Considering Sam had issues with maintaining a healthy oxygen level this naturally caught my attention. A friend of mine told me about a local doctor that worked with a lot of children with Autism. What interested me was the fact that this doctor did extensive metabolic testing, understood the results, understood metabolic systems and disturbances and I hoped that maybe he could help me with Sam. He also knew and used hyperbaric oxygen therapy treatment with his patients.

I met with Dr. Norman Schwartz and he asked me what my concerns were about Sam. I explained everything I have covered here and showed him each of the supplements I was giving Sam and explained some of the ones I wish I could. He asked me to complete an extensive round of blood tests, urine tests and a stool sample. After we did we set up an appointment to review the test results. I was pleasantly surprised that Sam's pediatrician Dr. Dirk Steinert also wanted to attend this appointment. Although I am no longer a fan of collecting labels or diagnosis for Sam I was happy to see that someone could finally show that Sam did indeed have an autoimmune issue. All of Sam's Ig numbers were low with his IgA and Igm being the lowest. In my research it showed me the possibilities of celiac, respiratory/immune issues...pretty much describing some of Sam's issues. Sam also showed an abnormal thyroid range. Hyper instead of hypo.

The urine test used to complete the Organic Acids Test-Nutritional and Metabolic Profile gave us some more information. Sam has a high yeast or fungal overgrowth (see I told you Ellen is normally spot on). His low HVA levels indicate a lower production of the neurotransmitter dopamine which may be due to a deficiency in magnesium and B6. Low dopamine levels lead to loss of motor control, cravings, poor attention and focus, low drive or energy, cold hands and feet, putting weight on too easily, craving diet soda. Hmmm....pretty much describes Sam. Sam had low VMA levels which can manifest itself with sleep issues and fatigue and are also helped with magnesium and B6. Sam also had a low HIAA level which indicates lower production of serotonin. Low serotonin levels are often attributed to anxiety, panic attacks, obesity, insomnia and fibromyalgia.

One of the areas that kinda startled me was the high level of quinolinic acid in Sam's brain. The range for the Quinolinic test is .48-8.8, Sam's was at 9.1. The range for the Quinolinic/5-HIAA Ratio is less than 2.5 and Sam's level was 12. This high level may be a sign of inflammation or neural excitotoxicity. Quinolinic acid is derived from the amino acid tryptophan and is neurotoxic at high levels. As an excitotoxic stimulant of certain brain cells that hve NMDA-type receptors, high quinolinic acid may cause nerve cell death with continuous stimulation. Brain toxicity due to quinolinic acid has been implicated in Alzheimer's disease, autism, Huntington's disease, stroke, dementia of old age, depression, HIV-associated dementia, and schizophrenia. High levels of quinolinic acid may inhibit heart contractions, cause lipid peroxidation in the brain, and increase apoptosis (programmed cell death) of astrocytes in the human brain. The level of quinolinic acid is also highly correlated with the degree of arthritis impairment. (Yikes, that won't help the Perthes issue)

Treatment of excessive levels can be achieved by multiple approaches: reducing tryptophan supplements, preventing repeated infections and immune over stimulation, reducing the number of vaccines given at one time or increasing interval between vaccinations. (Already doing that) In addition, the drug deprenyl or the dietary supplements carnitine, melatonin, capsaicin, turmeric (curcumin) and garlic may reduce brain damage caused by quinolinic acid. Supplementation with 5-HTP may increase serotonin levels, but 5-HTP is not metabolized to quinolinic acid.

Sam had high ethylmalonic, methylsuccininc, adipic, suberic, or sebacic acids may be due to fatty acid oxidation disorders, carnitine deficiency, fasting, or to increased intake of the medium-chain triglycerides found in coconut oil, MCT oil and some infant formulas. The fatty acid oxidation defects are associated with hypoglycemia, apnea episodes, lethargy, and coma. Regardless of cause, supplementation with L-carnitine or acetyl-L-carnitine (500-100 mg per day) may be beneficial.

Sam's pyridoxic acid (B6) levels were low which may be associated with less than optimum health conditions (low intake, malabsorption, or dysbiosis). Sam's B5 and C level was also low.

In the Doctor's Data urine tests we learned that Sam's calcium was low and needs to be supplemented (Hmmm...could be very important for bone growth, don't you think). Sam's molybdenum was also low which can be linked to an increased allergic reaction to sulfite food additives.

In the Doctor's Data metal toxicity test Sam showed a high level of Barium.

Sam's stool sample show a low predominance of bacteria which is an indication of dysbiosis or the term that originally described Sam, leaky gut.

It felt good to finally put all the pieces together and come up with a plan. So what is Sam's plan???

PH Diet - We will try to daily test his first urination of the morning and check his PH level. Sam has slowly been working his way to the 6.4 - 6.6 range but we will continue to work on getting him to 7.0. Why the need to check his PH. Here are 5 reasons to do so from the Alkaline Diet website. You can also get a simple chart to see alkaline/acid foods.

Improved Energy Levels

Proper cell functioning is very important to a person’s overall energy level. If the cells are not healthy, they are not as effective at holding and transferring oxygen within the body. This can result in overall fatigue and a lack of energy. The body’s pH level can also affect a cell’s ability to produce adenosine triphosphate (ATP), which is important to the body’s energy level. This process normally takes place within a cell’s mitochondria. If the body’s pH level is too acidic, this process does not take place as effectively.

Healthier Teeth and Gums

When the pH level of the body is too acidic, it stands to reason that the mouth will also be quite acidic. Unfortunately, when the level of acid in the mouth is too high, it can cause bacteria to grow at a much faster rate. Bacteria can cause a number of different problems in the mouth, such as gum disease and bad breath. A high level of acid and bacteria in the mouth will also increase a person’s chances for tooth decay. Many people note an improvement in their overall level of oral health after switching to a diet program that promotes an alkaline pH level in the body.

Improved Immune Function

When cells are healthy, they are effectively able to absorb the nutrients they require. Healthy cells are also efficient at eliminating waste products. If cells become weakened in any way, they are not nearly as effective at these kinds of functions. As a result, infectious organisms have a better chance of affecting these cells. When the body’s pH is too acidic, cells cannot function at their optimal level. This is why a person is more likely to become ill, develop infections, or even develop cancer when their diet is acidic as compared to alkaline.

Reduced Pain and Inflammation

Magnesium is one of the minerals the body uses to help control excessive acidity. If you eat a diet that has an acidic effect, the body is forced to use more magnesium to help neutralize it. However, magnesium is also a useful nutrient in the body that helps to support joint and tissue functions. By eating a diet that has an alkaline effect on the body instead of an acidic effect, your body will have more magnesium available to help reduce tissue and joint pain and inflammation.

Slower Aging

When cells are subjected to an acidic environment, they function much less efficiently. This reduction in functionality can impair a cell’s ability to repair itself, thus resulting in premature aging. Premature aging can also occur when cells are not able to get enough oxygen, and when they are not able to rid themselves of toxins. An alkaline diet can help prevent all of these scenarios. Better functioning cells means a younger appearance for you. Plus, as an added benefit, an alkaline diet program will also help you maintain a healthy weight.

All good stuff and what are we doing for supplements:

B12-Sam receives a shot every third day of 12 units (and no he does not like these)

Nutrivene D-Sam is now able to take the full dose of 15 capsules a day divided in two doses.

Curcumin-4,000 mg

B6-275 mg

Vitamin D3-5,000 IU

Vitamin C-1,000 mg

Megasorb CoQ10-100 mg

Probiotic 55 billion-476 mg

Butter Oil Fermented Cod Liver Oil-1500 mg

5-htp-200 mg

Magnesium-440 mg

Zinc-75 mg

Calcium-300 mg

Garlic, Oregano Oil and grapefruit seed extract for yeast

Colostrum-480 mg

That's a total of 43 capsules a day, 5 drops and orange juice enhanced with a liquid calcium supplement along with a shot in the butt every third night. Sam with encouragement will swallow all the capsules with apple sauce to help them slide down.

I keep track of Sam's PH and all his supplements on the Ipad with a app called Ibiomed which allows me to create Sam's profile, list his allergies, supplements, therapies and journal any issues, concerns or improvements.

So what have we seen since we started. Well we slowly ramped up to the full protocol. Dr. Schwartz did warn me that we would see some yeast die out and behavior issues at the beginning but they would mellow with time and they have. In the first week or so Sam was hyper, stimmy, demanding and a wee bit overbearing but we kept on. Just Sam being able to take the full dose of Nutrivene without side effects was an improvement. Sam's eyes are now working correctly, they dilate and shrink to the light in the room. The rash on Sam's bottom is finally going away. Sam is sleeping well. He is pulling out more words and doesn't seem to struggle as much when asked a question. We still have to work on listening but he is easier to work with. He has good focus, he still says "no" when asked anything but he doesn't perseverate on it.

He is losing weight, hallelujah!!! He started at 128 lbs. and is now weighing in at 123. He is walking more and has less behavior due to reduced pain issues. Does he have any bone growth in the hip??? We will check that out at his next x-ray in a couple of weeks.

But overall...we are making progress. He seems happier and more in tune with his world. For his birthday and Christmas Sam received KidKraft sets. One is a fire station, another is a construction site and the third is a garage.

Previously we would have had to show Sam how to play with these or he would have had little to no interest. I like the KidKraft sets because they are well built, encourage imaginative play, work on communication skills and utilize fine motor skills to crank up the elevator, or hook on the wrecking ball. What I wasn't prepared for was Sam's appropriate reaction and play. He had the fireman sliding down the pole, going to bed, climbing the ladder and steps and he even had them talking to each other. To most parents that would seem really normal and what he should be doing but they haven't seem Sam do the same thing like drop the guy from the top floor 32 times in a row. Sam is curious about the sets and what you can all do with them. He watches me and then copies me...please keep in mind we used to have to do hand over hand to make this happen. So many things that other parents take for granted just did not happen with Sam...but now they are.

Sam has an interest in coloring and writing letters and words. Sam always liked the TV Teacher.com DVD's but he didn't transfer what he was learning to other areas. The other day he wrote Sam and Dad with his finger on the carpet. Yes, the S was backward but the effort and initiative is what excited me.

Sam decorated the tree I drew. So right now...it's fun...and exciting...and I hope and pray it continues.

We will recheck Sam's blood work in January and tweak as necessary. I am often asked if all this is necessary?? If Sam was healthy and functioning at a good level...I might not have jumped into as much although I would still want to address the extra chromosome and how it causes "overexpression" of genes that change metabolism and function of antioxidants, amino acids, digestive enzymes and other essential nutrients in his body. But Sam was struggling to stay healthy and out of the hospital, his hip was breaking down, his happiness and behavior showed signs of stress, pain and struggle. There was so much about Sam that I was piecing together but I didn't know how to address it. Through the combination of Dr. Steinert and Dr. Schwartz I think we are making progress.

Now I know a question that will come up is cost. Yep, Sam is a kinda expensive kid...although he is worth it. The extensive blood work was run through our insurance by Dr. Steinert. The urine and stool samples and two appointments with Dr. Schwartz brought us up to $1,204.00. I will submit this to our insurance and whatever they don't pick up I will use our HRA account to reimburse. On average a container of each supplement listed would come to a total cost of around $285.00 - $300.00 which would last a little over a month. So a yearly cost of over $3,000.00 in supplements. Add in Sam's NACD program, his organic grocery costs and the dollars begin to add up quickly. We are fortunate that some of our supplements can be put through our Family Support and Waiver programs. We are fortunate to have good insurance and a HRA account. We are fortunate that I can be home with Sam to do his program and keep him on his healthy plan. We are fortunate for so many reasons and Sam continues to make sure I don't take anything for granted.

I went through the holidays feeling empowered that we were doing something. Only time will tell what we will continue to see. I am encouraged but still tentative because I am used to seeing changes and then have them go away or see new side effects that are not expected or wanted. I want Sam to regain full mobility, I want him to ride his bike and enjoy his life. I want him to be healthy and happy.

My intention of this post is to simply share our journey....the positives, the negatives, the struggles and the gains.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me'.
Erma Bombeck

Happy 11th Birthday Sammy!!!

2011-12-06T21:28:00.005-06:00

Happy Birthday to you!!! Just look at that face...this is one boy who enjoys birthdays...actually looks forward to anyone's birthday so he can sing the "Happy Birthday" song.

It was so much fun to watch him rock back and forth, smiling from ear to ear.

We always have a beautiful birthday cake for the candles and then swap out the cake with Sam's gluten free cupcakes and Rice Dream ice cream.

As you can see it doesn't seem to phase him much!!

He just keeps digging in!!

I thought I would grab a few photos of the rest of the family too!!

The infamous brother Ben!

The lovely sister Danielle!

Sam's bestest buddy, also known as Daddy!

And his Mommy, teacher, therapist, nurse and short order cook...

It is a family tradition that you get to choose your birthday meal and the immediate family celebrates with you the day of your birthday. We enjoyed a wonderful dinner of...yeah...Taco Bell. Sam's extended family birthday party will be on Sunday, so more "Birthday Song" and presents to come.

It is hard for me to believe that 11 years have gone by...even with them not being the easiest 11 years. But today I focus on the Happy part of his birthday...his smile, his laughter, his love of his family, his determination, his strength and persistence. This little boy has gone through more in his 11 years than we will ever go through in our entire lives. But what really makes him different is how he goes through life. He doesn't complain, get depressed or give up. He faces each day, each challenge and every moment with God given grace. He is teaching me more than I could ever teach him.

I wanted to get a great photo for this birthday post and as I downloaded all the images from the camera I smiled at each and every one. Here are a few more including one from Halloween that just makes me chuckle. Please keep in mind that Sam has always had sensory issues, so costumes were never a favorite but he handled this one beautifully.

Here were the pictures I got as I tried to catch a good expression.

You can almost hear him saying "Mom, enough already...are you done".

Nope, she just keeps on taking more and more pictures. The next one was my favorite pick.

And this is what I got when I asked for just one more.

Sam, I love you more than you will ever know. I look forward to spending each and every day with you. You amaze me, challenge me and make me a better person.

Happy Birthday, my little man!!!

Thankful...but in need of some writing therapy!

2011-11-26T10:56:00.003-06:00

This Thanksgiving I am thankful for so many things. A wonderful and delicious Thanksgiving dinner prepared by my brother-in-law Rick and his wife Debbie...oh and I can't forget Katie (our bride to be). I am thankful for my husband, my children, my extended family, restored health for Sam, my friends, my "always available to pet" dog, my blog and listserve friends and so many more things that it would take my whole post to list them all. I know I am living a very blessed life.

And yet...I find myself needing some blog writing therapy. My last couple of weeks have been filled with Sam's medical issues. We spent four days in Children's Hospital with pneumonia and another illness, we had follow up doctor appointments and an appointment to go over Sam's lab tests (that will be a whole different post). I've spent hours on the computer researching Perthes, Perthes treatments, doctors and a whole host of metabolic issues.

In between, I have tried to restart Sam's home program, jump back into his homeschooling, spend some much needed one on one time with my other two children, watching movies or going out to lunch, going out with my husband, trying to stay connected with friends, attack yet another house cleaning and clearing project (something that happens regularly to anyone who homeschools). I know many of you are under the false perception that because I am home so much my house should be spotless. Ummm....NO....because we are home so much our house is in constant use...there is no down time while we are off at work or school. My work, school and therapy is all done in my house. I often feel the need to have the house vacated so I can attack the cleaning but it only takes a matter of hours for Jeff and Ben to leave a mess on the floor from their work boots, or for Ben to pile up his layers of filthy laundry (I'm thrilled he has such wonderful work ethic...I just wish it was a cleaner work ethic, but that wouldn't be Ben). Add Danielle's YMCA bag, volleyball bag, school backpack, 17 pair of shoes that seem to all have to be stored in the kitchen. I guess if she needs a much needed, last minute shoe change...she can weigh in all her options. My house feels more like a locker room or a teenager's really messy bedroom than my home.

And I'll admit I'm guilty of needing some downtime to read my book for book club. If you haven't read the Hunger Games series...you should. I'm hooked. And yes, I tend to get addicted to the Hallmark Channels Christmas movies along with wanting to work on my afghan knitting project (you know I needed that because I don't have much to do anyway). And honestly knitting relaxes my brain because I use the knifty knitter and I don't even have to keep track of my stitches, just my rows. And I am guilty of having fun with Sam, going places, playing together, snuggling and watching a movie, extended games of air hockey...I mean it can't be all work.

I consider all this my balancing act...because if my mind is not consumed with something I tend to think too much and then worry sets in, self-doubt follows shortly thereafter, second-guessing becomes my best friend and I know I need to sit down and write it out. So, what has me tied up in knots???

Deep breath.....Sam! When you are raising a child with special needs the balancing act of staying positive and dealing with all the medical, special needs stuff is one of the toughest balancing acts there is. This is my little boy, my baby, a child whose smile brightens my day but it wouldn't be right if I just told you all the great stuff about Sam. It wouldn't be honest if I told you that everyday I find the blessings. Because if I'm really truly honest...some days are much tougher than others.

An analogy that comes to mind with the upcoming winter season is snow. Sam's issues are like snow and I'm the big old snow plow. I have had a tune up (road trip vacations), I am an older model but I'm still responsible and in good working order (well, don't ask Jeff that) and I know that my responsibility is removing the snow (helping Sam reach his full potential). Well, we started with a dusting of snow (Down syndrome), but then the accumulations began to increase (brain injury, dysphagia, respiratory/immune issues) add in the blizzard conditions (bi-lateral hearing loss, homeschooling and a home program) I begin to feel the strain. But then along comes the ice storm that really challenges my stability and traction (Perthes & hip dysplasia) and this old snow plow is quickly breaking down. I know it is time to shift into a lower gear, ask for help and realize that slow and steady is often the way to go.

Now let's throw in the holidays. Argh...and the sad thing is...I love the holidays. I can do this...I know I can. I often feel like the little train that could, except on some days I'm missing a few rails from my track, on other days I'm flying over the mountains at record speed and yet on other days I can't even find the track.

My latest plunge into the dark side of raising a child with special needs came as I was doing my new research on Perthes. When Sam was diagnosed I thought I spent enough hours trying to figure everything out...I felt we were making good informed decisions about his treatment. I networked, I asked questions, I went for 2nd and 3rd opinions, I followed my gut...but I had early on opted out of one of the proposed treatments. The External-fixator. This option, frankly...scared the crap out of me. Although I listened to parents tell me about the good outcome, I couldn't get past the parents that talked openly and frankly about what it was like going through it...and they were talking about typical children...not someone like Sam. To many of them...out of state surgery was difficult...for Sam I felt it was impossible. Many of the parents felt overwhelmed by just the surgical procedure and recovery...I have to add in Sam's issues with anesthesia, his respiratory/immune system issues, his difficulties with communication, his low tone, balance, sensory and joint issues and the list goes on and on.

Okay another deep breath...but as I continue my research, since Sam's current outcome is not looking favorable, I have had to re-evaluate the External-Fixator. As I listen to Dr. Paley's video presentation at http://www.limblengtheningdoc.org/perthes_hip_distraction_treatment.html I notice he answers many of the questions I have today and have had all along and I can't help but question why I didn't listen to this before Sam's osteotomy surgeries. Yep, the second guessing is alive and well. I immediately begin the thought process of what if...and would our outcome be better and then I go into the darker, deeper areas. If we would have done this surgery first, Sam would have only had to go through one surgery, not the two to three we are now looking at. The surgical process and recovery would have been more difficult than the surgery he had....but at this point we may have to have him go through it anyway on top of an already difficult surgery and recovery from the first surgery. Yep...that's where the thoughts in the head start to cripple the heart. I could have saved Sam the challenges of the other surgery had I been able to wrap my head around this surgery.

But...maybe that's my answer...maybe I had to go through the first one to let me know that Sam and I could make it through the next one. Maybe we were building our strength and stamina, our Sam only procedures and medical knowledge, our love and trust in each other and our faith and abilities. But there is that "maybe" word...which can take a spin in either direction, depending on the day. Sometimes I feel stronger and sometimes I sink into the "Why didn't I just go there the first time and save Sam the first surgery and recovery...why didn't I do what was best for my child?" There I said it. That's what really hurts, that's what I could beat myself up all day about...feeling like I failed Sam, like I made a wrong decision, like I put him through something unnecessary.

Now go ahead and try to tell me that God only gives you what you can handle and that God gives special children to special parents. I'm not special...I'm just like you, I'm an average person put into circumstances that are above and beyond the normal and I have to make decisions and choices that I hope most people will never, ever face. I haven't been given any super powers but I was given an amazing child. A child that teaches me humility, sacrifice, unconditional love, devotion, he challenges what I think and know about myself, what I think or thought I could do and he strives to teach me patience, persistence, thinking of others before I think about myself. Some days I'm a good student and some days I would be better off skipping out.

But then I have to stop and remember that I don't have all the answers, that I ask every day that God guide me on this journey with Sam, that I rely on my gut and at the time that is what my gut was telling me.

It's time to write these worries on paper, put them in my prayer box and leave them up to God. Yes, this is another of my coping strategies. I have a wooden box and on the inside is this verse, "When your head starts to worry and your mind just can't rest, put your thoughts down on paper and let God do the rest." I feel better when I write and I feel much better when I write my worries and concern on paper, put them in the box, close it and pray that God helps me work through each one. It's my way of emailing God.

Another deep breath...but this one comes easier.

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

Helen Keller

Oh dear Helen, you definitely knew what you were talking about. Have a great weekend everyone!

It's Good To Be Home...I think!!!

2011-11-17T12:49:00.002-06:00

Now don't get me wrong...I love coming home. But when dealing with Sam there are times when it is comforting being in the hospital. Let me try to make sense of things.

At the hospital I know Sam has access to anything medically we may need...oxygen, pep treatments, medications, IV's, medical equipment, pulmonary experts, way too many lab people (sorry lab techs but it's like being a human pin cushion), doctors, nurses and so on.

And even though I know all that is available I still never rest easy in a hospital. It could be the control freak in me coming out...one of my many faults. I have had good experiences and not so good experiences in the hospital with Sam...but to me each one was another learning opportunity, another piece of the puzzle which is my Sam.

Back in 2005 we had a bad experience which landed us in the ICU. Sam was misdiagnosed with asthma and an aggressive asthma protocol was followed. Sam reacted poorly and his condition got worse instead of better. We spent a couple of days in the ICU. Now even though that was a bad experience I learned how Sam adversely reacts to Albuterol and steroids. We learned that less is more for Sam and a slow and steady path is our best route of treatment. We pursued further testing to find out what Sam's specific respiratory issue was. There was good that came from a very bad experience.

Also from that experience I took on a much more active role in Sam's medical issues. I no longer have that unconditional trust of doctor's or medical personnel. I learned that doctors are truly practicing medicine and as they practice they also make mistakes. I began to view doctors and nurses as people just like you and me but with more medical knowledge...however I'm the expert on Sam. That doesn't mean that I am going to tell a doctor or nurse how to do their job but I will advocate for Sam, I will let them know what works and what doesn't, I will read Sam's non-verbal cues and let them know how he is doing. I will try to put myself in Sam's shoes and do the best I can in addressing what his concerns and needs might be. I will ask for pulmonary, orthopedic or any other specialty consult if I don't completely agree with a doctor's orders. I will probe, I will question, I will research, I will learn and understand the medical terminology, I will get second and third opinions.

With all that said I absolutely respect the role doctors and nurses play in Sam's life. I am the first to thank or acknowledge a doctor or medical professional that has met or exceeded my expectations. I want to build strong relationships with Sam's doctors and nurses. I respect them as professionals and people and I simply ask that they respect me as Sam's mom and the person that spends the most time working with and loving him.

My unrest in the hospital comes from the necessary shift changes in personnel. While I understand that nurses and doctors can only work so many hours a day it still becomes a little unnerving when I have to meet, introduce and educate so many people on Sam. I love when I get a repeat nurse or nurses return from one shift to the next...it comforts me to get to know those people who are helping me with my child. I can't imagine how difficult their jobs are as they meet new parents and children on each and every shift. Every child, every parent, every situation is different. I utilize Sam's pediatrician as my overall medical expert on all that is Sam. If I have difficulty in the hospital, Sam's pediatrician is my go to person to help coordinate a successful outcome. I do understand that some medical personnel like to talk to other medical personnel when it comes to making decisions about my child so Sam's doctor becomes that contact in those situations. I also understand that there are policies and procedures that have to be followed in a hospital situation and I ask Sam's pediatrician to listen to my wants or concerns and coordinate with the hospital. I carry with me a signed Emergency Information Form For Children With Special Needs (a blank copy can be found here, www.aap.org/advocacy/eif.doc) and a copy of Sam's respiratory report. I don't want anyone guessing about things we have already figured out with Sam. I understand and respect the fact that Sam's hospital file is thick and a doctor does not have the time to review everything so the medical information sheet and respiratory report gives them the important information up front.

Another area of unrest for me is the grey area of care and responsibility in the hospital. Ultimately I believe that as Sam's parent he is my responsibility 100% of the time...but hospital situations cloud this area. Yes I understand how to best work with Sam in certain situations but that does not usually include taking blood, putting in an IV or making him cooperate during medical procedures...I don't have to do those things at home with him. If Sam is coming to the hospital because of an illness I have often been awake and dealing with him for days before...so there is a fatigue factor on my part. Now add to this the changing personnel and things get cloudy for me. As I walk through the hospital I can't help but notice how many children/infants/toddlers are there by themselves. I feel sorry for these children...I try to rationalize that the parents may have to work or something critical is keeping them away from being there with their child...but my heart still hurts for these children. I also realize that if a parent isn't in the room the nurses are responsible for 100% of that child's care. But with me being in the room, what % are they expecting me to do? Does that % qualify me as a good/bad parent in their minds. I have watched Sam pull his leads off and throw them on the floor. The medical equipment is quickly registering that Sam no longer has a heart beat nor is he breathing. Alarms sound but I don't see anyone rushing in to check on him and I have even had times when the staff has just called in on the speaker to ask if everything is okay. I've wondered...is this the same policy followed if a parent is not in the room? What if something happened to me? What if I left without telling my son's nurse I was leaving? How long would it take for a person to check on Sam's situation? This is one of many reasons why I stay with Sam. Add in Sam's sensory issues, limited verbal expression, hearing issues, allergy and medication issues and we could have a potential prescription for disaster. But I struggle with the percentage of care. I actually am happy being 100% involved with Sam's care but when I am dealing with lack of sleep issues that commitment becomes a challenge. I try to let the nursing staff know where I'm at but I often get a mixed reaction. Some seem to understand and help as much as they can while others seem to not care and have no problem waking me to assist my help with Sam. And then there is that question of if I don't assist are they questioning my commitment to my child and honestly thoughts like this can become much larger in a sleep deprived mind. I also wish I could just sleep when Sam sleeps but my mind doesn't shut down in the middle of a respiratory distress situation. I am still monitoring the beeping, how he looks or acts and that keeps me focused on his situation instead of sleep. Now let's add in the plastic, hard recliner with the added comfort of the crispy, plastic, sweaty pillows and it isn't exactly a prescription for restful sleep. Oh but wait, I could also stretch out on the hard, plastic, too short for the average person pull out couch that never seems to pull out flat. I think I would pay an upcharge for a down comforter to go on either of these items to make them just a wee bit more comfortable.

I also want to take a minute and talk about the nurse call button. You press the button, wait for someone to ask you what you need and then wait for a nurse to appear when she is available. I often wish there was a general call button and a 911 emergency button. A general call button is great for an IV pump that is beeping, I need a blanket or towels, can I schedule a pulmonary consult...a 911 emergency button is for Sam is choking, gasping and about to pass out, Sam has pulled out his IV and I need help now and Sam's oxygen stat is dropping fast. Each of these happened and response time was not exactly quick enough for my liking. I handled getting Sam back in bed and comfortable without nurse assistance, I had to wait for assistance with the IV which led to an IV intervention (as I like to call it) 5 people for 1 child's IV. It's like they sent the best of the best with special vein lights, well versed in working with a child with special needs, quickest IV placement ever and I wanted to say, why doesn't this happen every time...can I request this dream IV team??? I handled the low oxygen stat by turning up Sam's oxygen myself until he was at a favorable level and then letting the nurse know. I hook and unhook Sam from machines, turn them on and off to go to the bathroom or help him take a shower, I often times administer medication or a breathing treatment if the person is tentative or unsure of how to proceed with Sam. Maybe it's just me and my control issues but I think many people who have not experienced hospital stays with their children are under the misunderstanding that while your child is in the hospital the nurses and doctors do 100% of everything and you can just rest and observe. Hmmm...nice dream but certainly not my reality.

While Sam was in the hospital he received 4 different types of antibiotics as they tried to determine the other virus Sam was fighting and if his pneumonia was bacterial or viral. As a knowledgeable parent I know probiotics should be given when antibiotics are given. Hmmm...why wasn't that a suggestion at the hospital? One caused an itchy skin rash to appear on his thighs. So benadryl was administered to help with that allergic reaction. So, Sam was taking 4 different antibiotics, two types of breathing treatments and now benadryl. I'm convinced that Sam's immune system issues stem from his unhealthy gut which was destroyed by IV antibiotics in his first year of life. I can't help but wonder what further damage we have now done.

I watch all this closely because I know that Sam can sometimes get overloaded or his body will reach a point where the medications begin to become the problem and he turns a corner in the wrong direction. On Tuesday Sam began to react negatively to the pep/respiratory treatment...he sounded and felt better before than after they were administered. He wheezed after receiving the treatment and his hyperactivity or OCD type behavior was rapidly increasing. That's my cue to intervene, ask for a doctor consult which normally leads to a pulmonary consult and then we change the protocol. But that doesn't mean it's a good time to take a nap because in 15 minutes respiratory shows up ready to do a pep treatment with both of the medications. You see the orders had not come through yet to drop the pep treatment and one of the medicines and use the other medicine as a regular breathing treatment.

Now do you understand my concern for those children here at the hospital with no one to advocate for them. No one watching for changes or medication reactions.

But let's talk about going home. Some of the hospital staff were not comfortable with Sam leaving due to his oxygen levels and the sound of his lungs. But when you have a more involved child you learn to take them home earlier and how to deal with the issues. I don't ever want to jeopardize Sam's health but you have to think about that in different ways. Sam was feeling better which means he becomes more difficult to handle in a hospital situation. Sam wants to get up and move, his sensory issues kick in as he feels better, the medications make him hyper and he demonstrates stronger obsessive behaviors....like getting the IV removed, removing the pulse ox, taking off his hospital bands, pushing or yelling at medical personnel to leave him alone. Sam also is immune compromised, the longer he stays in the hospital the more potential illnesses he is exposed to. Sam in known to double up illnesses as he did this time with pneumonia and another virus. I knew we needed to think about going home when I did try to take a nap and Sam proceeded to remove his hospital bands and his pulse ox and then woke me to let me know what he had done. I attempted to sneak out and get some food while Sam was sleeping. As I came back up to the ward, the nurses were chuckling and told me Sam was feeling better. As I approached his room I noticed the pulse ox strip laying outside the door that Sam had obviously removed and thrown there. I heard him calling "Mom, Mom, Mom...Sue...come here now". When I got into the room he was happy to show me his bare toe that was now free of the pulse ox. He had also rung for the nurse to let her know he removed it. Sam was beginning to feel more like Sam and it was time to go home.

At home I have things for Sam to do in bed, games to play, favorite movies and shows, music and toys. And yes they have toys in the hospital but it takes me 15-20 minutes to clean and sterilize each one so that my child with immune system issues can play with it and I still worry if I got all the germs off. At home I can get him moving his arms and upper body to help with his breathing by playing basketball, balloon tennis or using the Wii. Sam has more food options at home since his diet is limited by being gluten and dairy free and although the hospital has a nice offering it does not include all of Sam's favorites. Sam is happier and more cooperative in his home environment. At home he has his family that can tag team his care and meet his needs letting mom get some much needed rest.

Sam was thrilled to be going home, he did great as we wheeled him through the hospital but when we hit the outside cold air and he had to be loaded into the car the coughing began. As I drove it accelerated to some gasping at times. So now I'm driving when I have not slept much in days and I have a child exhibiting respiratory distress symptoms in my back seat. I struggle with the decision to turn around and return to the hospital or continue home. As I get to the north side of Milwaukee he suddenly becomes very quiet. I quickly pull over and not wanting to introduce more cold air I crawl over the seat to check his breathing, take his pulse, look at his nail beds and make sure he is not pulling in around his rib cage. Sam has coughed himself to sleep. I pray some more and continue my drive home. Getting Sam into the house causes another coughing jag but now I have the nebulizer and can quickly administer a breathing treatment. Sam does well but struggles to get the coughing under control. I put on his oils to assist with his breathing, start up the vaporizer and oil diffuser and pray these are going to calm his coughing down. They do and he seems more comfortable but when it is time to sleep he starts up again. I reapply the oils, adjust the vaporizer and begin to pray. I crawl into bed...after 4 days of little sleep I feel like I'm crawling into a cloud. My bed has never felt so good. I explain to Jeff how tired I am and that I almost feel like I'm losing my sanity...but Sam continues to cough. Jeff begins to pray and I begin to plead with God for help and comfort allowing Sam and I to get some much needed sleep. God answers and Sam begins to settle down and falls asleep. Jeff is now feeling all the emotions and worry that comes with taking care of Sam as I begin to drift off to sleep. He knows that I need sleep and yet he's terrified on what the evening may hold. We are both thrilled that Sam continues to sleep well with an occasional cough here and there. Jeff and I take turns getting up and checking on him in the room attached to ours.

The next morning Sam wakes up coughing and gasping again. Mornings are always tough on respiratory kids. Everything settles, your respiratory systems gets dry and inflamed and you work twice as hard to work through everything. I immediately give Sam a breathing treatment and I see him relax. I talk him through slowing his breathing down and he begins to respond. I offer him some ice cold water and when he asks for ice cream I don't hesitate. Sometimes ice cream can do wonders to cool, comfort and alleviate the inflammation in Sam's airway.

Sam looks good but has some dark circles which I call his pediatrician about. The pulse ox is ordered and on the way. I will continue to monitor Sam's oxygen stats. Sam is happy, smiling, and tells me over and over "It's good to be home". I know we are not out of the woods yet. Sam's mobility is further decreased with his pneumonia and he will have to take it easy and we will take it one day at a time. Sam had a good day at home and he went to bed easily and with little coughing. I feel better about being home. I am still exhausted today but I know that I will regain my energy as I get to sleep on a more regular basis and right now that pillow,....er bed, is calling my name. Good night everyone!

Medical Update on Sam Mayer

2011-11-15T14:32:00.006-06:00

Do you feel a trend here? Sam's high tolerance for pain can only be rivaled by his obvious lack of requiring oxygen. Last weekend Sam came down with the symptoms of a cold. Kinda stuffy, sounded like he was talking through his nose...just a little congestion. Sam has had two colds this season so I thought we were just going to have the same thing again. His lungs sounded good so I headed off to a conference in Madison on Central Auditory Processing on Wednesday. Sam was excited to do a sleep over at Grandma and Grandpa's house.

Everything went well on Wednesday but in true Sam fashion he seemed a little off or worse on Thursday. That night when I talked to him on the phone, the first thing that Sam said to me was "I sick". This raised a huge red flag with me because Sam does not tell you he is sick, the same way he doesn't tell you his hip hurts. Okay...now this is where it gets interesting. Sam was at Grandma's house during this phone call using Jeff's phone and although everyone was listening to Sam and my conversation on the phone neither Jeff or my Mom heard him say he was sick. Do you have goosebumps??? On my end I heard Sam say "I sick" as clear as day, on Sam's end they claim he never said that. My conference was supposed to last until 4:00 p.m. on Friday but I quickly decided we would head back the next morning.

By the time my friend dropped me off at the house, Grandma was leaving me a voicemail to let me know that I needed to get home as soon as possible. Sam was quickly getting worse and had just thrown up. I think I could hear the sound of relief in her voice when I called her back, told her I was on my way and only 4 minutes away from her house. While driving to Grandma's I called Dr. Steinert to get an apointment for ASAP. They said they could see Sam at 1:30.

As soon as I saw Sam laying on the floor and my parents hovering close overhead I knew coming home was the right decision. My Dad was finally able to coax him off the floor, out the door and in the car. Sam slept on the drive to Germantown with me checking my rear view mirror every couple of minutes.

I woke a very unhappy Sam and loaded him into his wheelchair. We headed in and even though our wait wasn't long it seemed like an eternity. As we waited for Dr. Steinert Sam asked to climb on the table and proceeded to fall asleep, snoring and all. His fever was 102.8, he was getting more and more lethargic...I noticed his right ear was draining...nothing like going from 0 to 150 in a blink of an eye. Dr. Steinert listened and told me he heard some sounds in the right lung and Sam had an inner and outer ear infection. Amox-clav was the drug of choice along with ear drops. I felt better as we headed out that we were going to be doing something and Sam would shortly be turning around.

Boy was I wrong...Sam's fevers began to spike at 103 and 104...lethargic, unhappy, and just plain irritable seemed to be the mood of choice. But what really started to scare me was the developing breathing patterns I was seeing, fast shallow breathing along with a bluish, purplish lower lip that was slightly swollen. Sam was having coughing fits that would often times end with him throwing up. On Sunday he didn't seem to want to lay down, he didn't seem to be able to find a comfortable position...all the mommy alarms were ringing. Calls to Dr. Steinert and his office confirmed my gut feel that the Children's ER was our next destination.

Unfortunately we got a faulty pulse ox reading when we checked in. They thought Sam was at 95. They had us do an x-ray which showed two not so pretty lungs. The ER doctor asked for a pulse ox and when Sam showed he was comfortably hanging out at 61, a lot of people started to arrive. We went from us and the doctor to a staff of 5 quickly. Oxygen, IV's and consults with the ICU quickly took place but noone could believe that Sam was still functioning so well although a lot of his symptoms correlated with hypoxia. Finally around 10:30 p.m. after being in the ER for 6 hours of observation, the ICU felt he was stable enough to be on the floor. They would revisit that decision 4 more times as we tried to get Sam stabalized on the floor. We transported Sam in his wheel chair to the 11th floor we transferred him into the bed and while on oxygen Sams level dropped into the 50's. The ICU team again visited and Sam was put on 15 liters of oxygen. To transfer or not to transfer...stabalizing became more important than transfer so we stayed on the floor and waited for Sam to calm down and fall into a better breathing pattern and oxygen rate. Breathing treatments and IV medications were increased and Sam was finally beginning to need less oxygen and everyone except maybe me and Sam were now becoming more comfortable.

Sam's night was not relaxing for Sam or I. He dipped, his oxygen levels were up and down, breathing treatments were changed, pulmonary began visiting along with the ICU doctor. Sleep was not going to be the priority and this was day 3 of little sleep for me. I had been awake and dealing with Sam since 2:00 a.m. the previous morning. But as tired as I was the adrenline kept me going, my mind was programmed for the beeps and motion that was Sam's room. I couldn't take my eyes away from his face, his movements, his expressions or lack of them...observing is my life with Sam. It's how I figure him out. The change in Sam on the higher rate of oxygen was obvious to me but not so obvious to everyone else in the room who have never had the privilege of seeing a normal Sam. The degrees of change are what my gut feel goes off of to figure out which direction we are headed.

Due to Sam's drug reactions and allergies I never come to a hospital without Sam's medical emergency profile which is signed off by his doctor and his bronchialscope summary that further defines Sam's respiratory issues. I don't ever want to take the chance that someone would miss seeing a report, reaction or allergy. I know steroids are a common go to drug for respiratory and immediately give the doctors a summary of Sam's issues with steroids. I also immediately ask them to get Sam's pulmonary doctor involved in order for them to determine which drugs and what doseages should be administered. Over the years I have learned that often times less is more for Sam. Slow and steady is a good course.

After the ups and downs of the evening the next morning brought us one more onset of coughing which again caused Sam's stats to plummet to levels that made everyone nervous. However, slow and steady and by the afternoon Sam is singing "It's 5:00 o'clock somewhere" and laughing to SpongeBob. Fever was being monitored and because he was looking so good I thought I would change the bedding since he had both an accident due to the coughing fit/low tone and an IV mess. I only needed Sam to stand for a minute so I could pull off the bottom sheet unfortunately that started another coughing fit, dizzy spell and sent the stats dropping. Sam was absolutely exhausted by the time he sat back down in bed, his breathing was shallow and fast and he didn't open his eyes for the next 45 minutes. Note to self...don't push your luck and try to have a nurse in the room when you decide to get Sam up for the first time with double pneumonia. Yikes!!

Our evening began to improve until the IV in Sam's foot gave out and we had to put one in the other foot and then Sam decided to remove that one himself while he was sleeping. So we had an IV intervention at 2:00 a.m. and they put this IV in Sam's right hand. After making an IV tent and wrapping it until Sam looked like he had a club instead of a hand, we both finally drifted off to sleep. Have I ever told you how good sleep really is...it's the best.

Sam woke up obsessed with his club hand and proceeded to ask for a scissors about 500 times...I did say obsessed didn't I??? He even used beautiful sentences like "I want scissors please, Mommy Dear"or "I want scissors, cut off please, right now". So I knew getting rid of the IV was my goal for the day to make Sam's life just a little bit more pleasant.

Today Sam ate breakfast, lunch and dinner. That in itself was an accomplishment. But he also got up to use the bathroom and take a few laps around the floor. He then returned to his room and settled in for the night.

I recruited the afternoon nurse on my mission to rid Sam of the IV. She documented Sam's output as above normal and let the resident doctor know that Sam had been fever free for 24 hours and he could take the medications orally. There wasn't really a strong medical reason to continue the IV and Sam's happiness and sanity were at stake. The resident doctor didn't feel comfortable enough to make the decision so she contacted the doctor on call for Sam's pediatrician's office. That doctor felt it would be okay to keep the IV in until Sam is discharged. I asked her if she would mind contacting Sam's pedicatrician on his cell since I knew he would agree with Sam and I. She agreed and in a couple minutes she returned to let us know the good news.

It's the little things that make Sam so happy. His smile was from ear to ear as the nurse removed the last couple pieces of tape and removed the IV. We all hope we are in for a quiet night.

Of course I still have the after effects of strong antibiotics and the hyperness that follows respiratory breathing treatments to deal with. But tonight as I kiss my little man through the hole in his oxygen mask I am forever grateful for another day with him. I can handle the stress, premature aging and challenges that this perfectly imperfect, extraordinarily ordinary, unique one of a kind child challenges me to handle because he is worth it all...every single second is a blessing. Keep the prayers coming! We are hoping to be released tomorrow but pulmonary was still concerned about his need for oxygen and the crispy sound of his lungs. That's tomorrow's battle. Good night everyone!!

Let's Talk About The Myths Regarding Dyslexia!

2011-11-11T19:26:00.004-06:00

I was recently asked to include a few items on my blog regarding Dyslexia. The first article submitted to me talked about "15 Common Myths About Dyslexia". I want to address each point of this article from the standpoint of a spouse of someone with Dyslexia and a parent of two children with Dyslexia. My responses are in italics.

Most people have heard of dyslexia and might even know someone who has it, but how many really know just what kind of learning difficulties it causes? Like most learning disabilities, there are a lot of myths and bits of misinformation surrounding dyslexia, and it can sometimes be difficult to separate fact from fiction, especially for those who don’t have or don’t know much about the condition.

Whether you’re pursuing a college degree in special education, have dyslexia yourself, or know someone who does, we’ve collected some of the most common misconceptions here so you can gain a better understanding of just what it all actually means — without all the potentially damaging myths getting in the way.

I want to first address the label of Dyslexia. I have the same problem with the label of Dyslexia as I have with a lot of labels. The label Dyslexia deals with a broad spectrum of learning differences. If you are told your child is Dyslexic it doesn't necessarily tell you what your child's specific issues are and what to do about them. The label itself is an umbrella that covers many different learning issues that are commonly associated together. But just like Down syndrome, no two Dyslexic children are alike. In my own family, my two children that would be given the label Dyslexia are very different. It is much more valuable to figure out what areas of a child's neurodevelopmental profile are not functioning properly. Are they cross dominant, do they have a visual or auditory processing issue, do they have a visual convergence issue, is there a fine motor issue involved? My son Ben is cross dominant and has an integration deficit in regard to his auditory processing while Sam is cross dominant but has an auditory decoding deficit in regard to his auditory processing, fine motor issues and he has visual and convergence issues.

People with dyslexia are less intelligent
Despite the long-standing belief that if you can’t read well, you aren’t intelligent, there is no link between dyslexia and IQ. People of all intelligence levels can have the learning disability. Contrary to popular belief, there are quite a few highly intelligent, accomplished people out there who have difficulty reading due to dyslexia. Among them? William Butler Yeats, Albert Einstein, John Irving, and Charles Schwab.
I find my husband and my sons to be highly intelligent. They may struggle with reading and writing but this in no way hinders their intelligence. In fact from our personal experience I would have to say that they are gifted in the area of mechanical aptitude and problem solving, just don't ask them to write things out for you...let them show you. The second item I was asked to include in my blog is a list of famous Dyslexic people. You can find this list at Patricia Duggan's site Psychology Degree or click on the word list to go directly to her site.
Reversing letters is a definitive sign of dyslexia
Can reversing letters hint that a child may have dyslexia? Yes. But it is also a common phenomenon among children just learning how to write. They are still honing their fine motor skills, and it often takes some time for both dyslexic and non-dyslexic kids to properly form their letters. It actually may be more telling if a student has trouble naming the letters (a much stronger indicator of dyslexia), as only 10% of the diagnosed exhibit reversal symptoms.
All three of my children had letter and number reversals. Yep, that's right I said all three. However Danielle does not have Dyslexia but letter reversal was something we saw as she was learning to write. Neither Ben nor Sam had any difficulty naming letters. Sam continues to have an issue with letter sound identification but that has more to do with his hearing and processing issues.
Only a specialist can help an individual with dyslexia
Getting professional help can be great for children with dyslexia, but it isn’t the only option. Parents have a wide variety of ways to help out at home as well, particularly involving assistance with reading, writing, homework, and feeling comfortable and valued. These efforts can be just as important as the leg up sought through schools and specialists, and parents don’t need a degree in special education — just patience and love.
I absolutely agree with this statement. I have had to learn how to work with Ben and Sam and have assisted them through their educational journey. For our family I have found the most helpful information and knowledge was given to us by The National Association For Child Development (NACD), www.nacd.org. They helped to understand the underlying issues for both of our boys and gave me strategies and exercises to overcome the challenges. I encourage every parent to learn as much as they can, attend conferences, do research, have your child evaluated, join listserves, read articles and books and never ever give up.
Girls can’t have dyslexia
While dyslexia is more common in boys than girls (a phenomenon still baffling researchers), it is not exclusively male. In a 2004 study, 6% of girls ages three to 17 had a reading-related learning disability. It is notable, however, that some believe there is no discrepancy at all. Rather, they think the gap between diagnoses stems from differing societal gender expectations rather than actual lack of reading ability. Either way, it’s important to watch both male and female children for signs that he or she is struggling with reading.
In our family, the girls don't have dyslexia...but we might have some other issues.
Dyslexia can be outgrown
As children grow up, they may struggle less and less with dyslexia, as they learn new methods to improve their reading and spelling skills. The reality is, however, the learning disability will follow any child into adulthood and cannot simply be outgrown. It is a lifelong battle for many, and even those who’ve mastered these skills will still read slowly and not automatically.
Hmmmm...I agree and disagree. If you are able to work on the specific areas of the neurodevelopmental profile that are affected I think you can resolve all or most of the problems. However if you do not figure out what those areas are or a child decides they do not want to do the work involved in eliciting a change I agree that the child will learn methods and compensatory skills that will help elevate their issues but they will continue to have some challenges and struggles into adulthood.
Dyslexia cannot be diagnosed in young children
While some children aren’t found to have dyslexia until later, professionals and specialists in the field can accurately diagnose it as early as age five. Many schools will not test children for dyslexia before 3rd grade, wasting precious time and causing undue difficulties. Parents who believe their child may have a learning disability should pursue testing as early as possible, as an early diagnosis can help kids get the help they need before their difficulties become more pronounced.
Again I will reiterate that it is more important to find the underlying issues that present themselves as a learning disability or label of Dyslexia. To get your child the best help possible you have to go beyond the label. Ben and Sam have different issues and we work with each of them differently although their diagnosis would be the same. I didn't want a one size fits all approach to addressing the needs of either of my children. Pinpointing your child's specific needs is crucial to helping them succeed.
There is a cure for dyslexia
Dyslexia is not a disease, it is an educational issue. As such, there is no cure. Individuals who have the condition cannot outgrow or get rid of their reading difficulties. They can, however, learn to overcome them, and there are number of successful treatments and programs to boost competence in reading, writing, and spelling abilities — though they may continue to struggle throughout their lives.
I would answer this the same way I answered the myth about a child outgrowing Dyslexia.
Children with dyslexia simply lack in phonics instruction
There is no indication that additional phonics training will help a student with dyslexia. In fact, many children with the condition already have a pretty good grasp on phonics — they just can’t apply it. Knowing how the word should be sounded out and being able to do it are two different things, and the inability to reconcile them is a key issue that many dyslexics face. While phonics tutoring can be a big help to children (and adults) with dyslexia, do not believe claims that it will cure or eliminate any difficulties.
For both of our boys site word reading was the way to go. I will never forget sounding out the word "cat" for Ben and then asking him what word did I just sound out. He had no idea because he couldn't put the sounds together. Phonics rules were taught to Ben but he wasn't able to use them until he became more skilled in his reading.
The solution for dyslexic children is to read out loud more
Some parents and educators would like to believe that practice makes perfect, but for children with dyslexia, this method simply won’t work. Reading out loud will not teach them how to pronounce words and may push them towards other methods, like context clues, to simply guess at what the page says. Only structured tutoring and practicing phonemic awareness skills can help dyslexics improve their reading.
Again understanding and addressing the underlying issues makes reading easier. Ben did not like to read aloud, Sam likes to read aloud, Ben loved books on tape, Sam doesn't listen to books on tape. Ben does well with Kurzweil (an adaptive technology program that reads to him), Sam can not understand the voice on Kurzweil.
Dyslexia is rare
Unfortunately, dyslexia is all too common. The NIH estimates that it impacts over 20% of the U.S. population. This means one in five people will have varying degrees of difficulty writing, reading, and spelling. Often, individuals have very mild dyslexia that goes overlooked or undiagnosed and receive little assistance with their reading difficulties.
I think processing issues are often overlooked and rarely diagnosed correctly. We need to stop looking at the symptoms, ie reading/writing difficulty and instead find the underlying cause and address those issues.
It is too late to help adults with dyslexia
While it is best for those with dyslexia to get help early on, there is never a time too late for individuals to address it. There is a wide range of training and tutoring programs that can help adults with dyslexia improve their reading skills and phonological abilities. In fact, many of the same methods used to teach children can help adults with the condition as well.
I do believe that the same methods and strategies used to help children can help adults. Jeff will be using Ben's program Dragon Naturally Speaking to help him dictate emails, letters and quotes at the office.
Dyslexia only affects a person’s ability to read
One of the more noticeable effects of having dyslexia is difficulty reading, but this isn’t the only ability that may be affected. Children with the condition may also struggle with sequential memory and following directions, which can make tasks like tying shoes, doing mathematics, or typing just as challenging as reading. All of which could easily cause a wide range of other challenges in an educational setting.
I feel like I'm repeating myself a lot, but again it is more important to figure out the underlying causes. In our family we see issues with auditory and visual processing, fine motor skills, reading, writing, spelling, math and organizational skills.
If a child can read, he or she can’t have dyslexia
Being able to read isn’t a sign that a child doesn’t have dyslexia. Many kids get quite good at using reading strategies like context clues, word shapes, and guessing to give the appearance of literacy. The reality is that many have auditory processing problems preventing them from hearing a word’s individual sounds, so they cannot read by sounding out the letters. When reading progresses to higher grade levels, these alternative strategies no longer work. Many kids are diagnosed with dyslexia later on, despite appearing to read fine early in life.
My guys showed issues early on. I was sure Ben had issues when he was four and Sam came to us with many different issues and he added more along the way.
All children with dyslexia will get help from LD programs
Not all children with dyslexia meet the requirements for learning disability programs offered through school. In fact, many only accept those with the most severe reading difficulties. While over 80% of children with a learning disability have dyslexia, only 1 in 10 will qualify for special education. This means that parents, tutors, and help outside the school are a must for many students who struggle with reading, spelling, and writing.
In our situation, Ben never wanted to be in LD or special ed classes. He knew he could understand what they were teaching he just needed help to show his work on paper and he needed assistive technology help with his reading and writing. I felt Ben needed the challenge of the regular curriculum to keep him focused on school and to keep him from getting bored which would have had a negative impact on his behavior.
Children with dyslexia will never learn to read well
Will dyslexia always affect an individual’s ability to read? Yes, but it doesn’t mean they can’t learn to become good readers and writers with a little help from tutoring and school interventions. Many people with dyslexia have gone on to become successful authors, scientists, and businesspeople, so there is no reason to believe it curses one to a life without reading — it just might prove more of a challenge for them than others.
The last point is the same one I have made over and over in regards to this article. If the underlying issues are figured out and worked on great improvement can be seen.
As someone who has been on this journey for awhile I have learned that a label of Dyslexia gets me services in the school district but it didn't tell me enough about the challenges my children were facing. To help them I had to understand them. I suggest families look at neurodevelopmental programs and see if that is a possibility for their family situation. If not research, read and attend conferences and workshops but first and foremost really get to know your children. Knowing what their strengths and challenges are is very important. Facing these types of challenges can affect a child's self esteem and it is important to focus and help them pursue their strengths and those things that truly interest them. Ben's work ethic, interest in vehicles, love of making money and his natural curiosity on understanding how things work and how to make them better is his driving force. Sam's love of food, travel, swimming and being with his family is his driving force. A label of Dyslexia is not the end of the world. In my experience the label came with it's challenges but it also presented some amazing strengths. Ben's amazing memory, problem solving, mechanical aptitude, persistence and determination is going to take him far in this world. Sam's positive attitude, persistence and curiosity will continue to help him figure out what he really wants to do as he gets older.
Both of my boys are learning how to overcome challenges, how to compensate, how to problem solve and how to become the best that they can be. With their level of persistence I don't think anything can hold them back!!

Thinking, Praying, Researching!!!

2011-11-04T06:43:00.003-06:00

"The inner mechanations of my mind are an enigma." Patrick Star from SpongeBob.

Yep that's right I am quoting an animated cartoon character for my blog today. But honestly this quote works for both Sam and I at this point. I have always said I would pay any amount of money to spend just a 1/2 hour in Sam's brain. Thinking how he thinks, feeling how he feels, listening how he listens, speaking how he speaks... Just think of the valuable information that 1/2 hour would give me.

I could finally understand Sam's hearing issues, Sam's processing issues, Sam's speech issues but most of all I could understand Sam's pain issues. We are in a tough spot. Sam's CT showed further lucency and fragmentation of the bone. It showed fluid on the hip which could be a sign of infection but more likely is an indication that Sam's AVN (Avascular Necrosis of the hip) known as Perthes in children is advancing. The exact opposite of what we want to happen. Sam's surgery included a left proximal femoral varus derotation osteotomy and a pembersal pelvic osteotomy. Okay now for regular people terminology, they removed a pie shaped piece from Sam's femur, tilted the bone into the socket for better coverage, held the bone in place with hardware in hopes that this would keep the hip in the socket and re-position the head of the femur to stop the Perthes from breaking down the bone any further. Once this occurred the body would be able to re-establish the blood supply and regrow the bone. They also rebuilt the shelf of the hip to provide a better socket for the bone to regrow in.

Well, it appears the surgery was successful in taking care of Sam's hip dysplasia issue but Perthes continues to destroy his hip. Now that we know that Sam is still in the breakdown phase we can better understand the pain he is going through. Sam is asking for his wheelchair more, he is walking less, prefers to lay down and yet....Sam is still happy. Last night Sam asked to take a bath...something he hasn't done in years because he prefers showers. But I'm thinking that he was hoping the bath tub would be like the hot tub he sat in on vacation and at the YMCA. This morning when Sam woke up he asked to go see the doctor. Maybe he was just dreaming about doctors because we have had so many appointments in the last couple of weeks or maybe it's his way of letting me know that his hip hurts and yet...Sam is working with me this morning on his academics, his home program and as I write this he is watching a video on the Human Body. I wish Sam could tell me how his hip is. I wish he could let me know what to do to help him feel better. It breaks my heart to know my child is hurting and yet...I have only to look at Sam...how he smiles, how he laughs despite the pain, how he continues on and I know I need to do the same thing.

The test results are coming in and our next doctor appointment is on the 22nd to discuss all the results. I have already seen areas that have raised red flags in my mind...and this is when I fit Patrick Star's quote. If you had any idea the number of directions, the hours of research, the amount of time spent trying to put the pieces together on how AVN, Perthes, Sam's immune system and how each of these is affected by his metabolic issues...you now understand my enigma.

And yet...I put much of the worry in God's hands, I ask for guidance/direction and I am always amazed at how I can buzz around the internet grabbing at this piece of information and that piece until it all starts to come together. I am amazed at how my doctor's are working together, I am amazed at the blessings that continue to pour in...and I am thankful.

I believe our lives are what we make of them and everything in them is what we choose to believe, act and do. Apply that principle to everything in your life...it works. I am fortunate to have Sam as my guide. I have a guide that has humbled me, presented me with my faults and helped me view my life through his eyes. There are simple lessons we learn from our children with special needs and really any of our children.

I strive to learn these lessons.

Sam is always happy to see me. Sam hugs me if he thinks I need it or not. Sam smiles and laughs each and every day (unless of course he is under sedation or on massive pain medications). Sam loves the day to day motion of our lives...he wants to know where each of us is and when we will be coming back together. Sam instructs people to hug or dance together even if it makes those people uncomfortable. Sam says "Hi" to everyone and doesn't get upset when they don't respond. Sam hugs his doctors and nurses...despite of any pain or discomfort caused. Sam doesn't hold a grudge, he doesn't judge, he doesn't want what others have nor does he worry about not being able to do what others do. Sam is happy and content with his life.

The next couple of weeks will hopefully yield some much needed answers and a new path. I am hoping that by Thanksgiving we have even more reasons to be thankful. But I know my guide will make sure I see the blessings in family, support, friends, great food and strong relationships...especially the great food (I mean we are talking about Sam here).

Have a great Friday and an amazing weekend. Sam and I will too!!!

Challenges and Blessings, A Long Post To Catch Up!

2011-10-28T20:54:00.017-06:00

Tonight I am tired, I am calm, I am humbled but most of all I am blessed. In the last two weeks we have had 6 doctor's appointments, including 4 trips to Children's Hospital. Add in 8 therapy appointments, another sick child, homeschooling, a good friend of Sam's having major surgery and the day to day things that we all face, dinners, laundry, house cleaning and oh yeah...sleep...seem to be kinda neglected. I didn't have time to return calls to friends, I didn't have time to update the blog, I didn't have time to work on Sam's next fun unit study on the human body or put his books on tape, I didn't have time to read my book for book club or work on the afghan I am making for my wonderful daughter and a lot of those things are what helps me to maintain my calm and balance. I just sorta floated through these 2 weeks, trying to stay on schedule, trying to maintain some semblance of balance...but some weeks you just trudge through. What I was amazed at...was that I didn't feel out of control, I didn't feel overwhelmed...I was tired but at peace. So often people will leave comments on my blog about me being a super mom but honestly I'm just a regular person put into some challenging circumstances and doing the best I can to make it through. I am often asked how I make it through...I have only one answer...through faith alone.

If I would have sat and thought about these two weeks and all that has transpired it would be so very easy to fall into depression, bouts of anxiety or wasted time worrying or asking why?? All the stressful stuff I put in God's hands and I look for the blessings...because they are always there....sometimes you just have to look harder than others.

We began with a follow up visit to Sam's orthopedic surgeon. Sam is walking less, putting himself in traction or laying down more and we seem to be sliding backwards instead of making forward progress. His x-ray didn't seem to show any new bone growth. Sam's surgery was in December and by this time his doctor would have hoped to see some progress made in regrowing Sam's missing ball for his hip socket. He couldn't tell by the x-ray why Sam was having more pain and discomfort so he asked us to do a CT scan. I was hoping that Sam could do this without sedation...hope is good but sometimes reality wins out. Sam laid down on the CT table after yelling at it a couple of times and hitting it, letting everyone know that he wasn't happy to be there. We then attempted to get him settled but in true Sam style every time I told him to keep his feet still...he had to move them...he just had to. I tried reverse psychology and told him to move them, hoping he would stay still but that backfired too. We left with a return trip scheduled for the next day for a sedated CT.

I drove away with a heavy sigh knowing that sedation isn't always easy on Sam but we would get through this too. We returned in the morning. I really liked our anesthesiologist. He asked me if there was anything I needed to tell him about Sam. I started my speech, "Well, you should be aware that Sam has upper airway issues, pristine lower airways, so no asthma, but scaly, narrow upper airways. He has a floppy airway, an extra esophageal fold, an anatomy anomaly of 3 bronchial tubes instead of 2. He tends to overreact to medications so less is more in Sam's case, he will go into a shallow breathing pattern when sedated, steroids make him manic so if intubation is needed he will come out of sedation manic and he may come out manic without them, if Sam begins to have respiratory issues vaponephrine is the drug of choice...but other than that he is an amazing little man and the love of my life." He looked at me and said "Wow, you are an amazing medical mom." I quickly replied "Well, he needs me to be." He continued to compliment me, something I don't really handle well because I don't feel amazing or remarkable, I feel as I often say like a regular person who has been put into difficult situations and is trying to do the best I can. I have my good days but don't even think for a moment that I don't have my bad ones too.

The anesthesiologist decided to ask the "NO" boy what fragrance of anesthesia he liked. I always lets them give it a shot in case Sam decides to answer with a yes, but each one was greeted with a strong "NO". He then looked at me and said "I'm guessing I'm going to get a NO on every thing." I told him his guess was correct and Sam knows that he is going to have to ingest or breathe in one of those and he simply doesn't want to have anything to do with that. He asked me about positioning Sam, I told him it would be best to let him sit up, have him sit behind him, bring the mask around, Sam will look to me for reassurance and I will tell him to take a deep breath and that everything is okay. If he is going to be laid down, than place a rolled blanket at the base of his neck in order to fully open his airway.

Sam again yelled at the CT table and let it know that he was not happy to see it but then he climbed on. I took off his shoes, the anesthesiologist sat behind Sam and as he brought the mask around Sam immediately looked to me with wide, panicked eyes. I smiled and told him he was alright, go ahead and take a deep breath and I am right here with you, I'm always here with you. Sam quickly drifted off to sleep and I left the room to let them finish with the CT scan. They wheeled Sam to the recovery area. Most kids with a short blast would have slept for about 5-10 minutes...45 minutes later Sam woke up as the nurse began to remove the leads on his chest. He popped up like a jack in the box and said "Mom, go home, eat." I told him to relax until we brought the table down and I offered him some water to drink. Now for the real test...I asked him "Sam, have I told you lately...", he answered immediately "I love you" and I told him "I love you too". "Let's go home and get something to eat."

We also visited the dentist and Sam's pulmonologist, she looked almost giddy as I told her Sam was being homeschooled. Sam's pulmonologist is extremely supportive of Sam being homeschooled because he gets sick less often and she isn't required to find the magic pill that will keep Sam from going into respiratory distress. Believe me, we have tried many and I don't think she will ever forget when I brought Sam in to see his pediatrician after he had taken a preventative steroid and inhaled medication. Sam was fully manic, running around the office, pulling things off the wall, kicking, babbling incoherently...a completely different child. It took two of us to bring him there since he wouldn't keep his seat belt on and kept trying to escape from the car. I calmly explained to the pediatrician that if they wanted Sam to continue taking these medications I had his suitcase in the car and he could move in with him until they got this worked out. He quickly called Sam's pulmonologist as I waited to come up with a better plan.

Sam's dentist was wonderful again...see another blessing!! He got more done with Sam than he hoped and Sam gave him a hug when he left.

We finished all the home test kits but need to take Sam to the hospital for the lab work next week. Sam is obviously in pain since he won't walk far, asks for his wheelchair and puts himself into traction but Sam doesn't complain, he rarely cries and he faces each day with a smile. His frustration level is lower but with that said he continues to plug away at his NACD program and his academics. This is a blessing!! I remember a time when Sam would have been more than happy to throw a complete fit because he felt rushed or our time frames were shorter. It used to take me a long time just getting him interested in doing something. The level of intensity to teach Sam was often beyond my ability...but now he just jumped in, complained at times...but that wouldn't be Sam if he didn't complain and we completed as much as we could in between all the appointments.

So what is Sam working on??? He is writing his letters with www.thetvteacher.com and he absolutely loves this program. Sam was recently found to be cross dominant. NACD does not like to use the word dyslexic because it groups many different learning disabilities under one umbrella. I have always felt that Sam exhibited many of the same issues that Ben has so I wasn't surprised. With that said, like Ben...Sam will struggle with reading and writing. Sam is also working on his writing with his Ipad using the Pocket Phonics app and the Letter Writer app. Sam is writing notes to his Dad, brother and sister and he is writing sentences about pictures of him. Sam at this point is tracing dotted letters. He is not at the point of writing a requested letter freehand. When he tries we often see him starting in the wrong area or making the letter in the wrong direction.

I determine many of Sam's fun unit studies using www.brainpopjr.com. These are short animated videos that teach the educational elements covered in a 1st-3rd grade curriculum. If Sam is interested in the topic, he is engaged in the video. Here is Sam watching the BrainPop video Exercise. I look for eye contact, acknowledgement of auditory cues and his overall attention span.

When I see Sam is interested in a topic we go to the library for books. We look up videos on Netflix or www.cosmeo.com. We do projects related to the topic and we have fun expanding on what the BrainPop video covered. We are finishing animal classifications and habitats and will be working on the Human Body next.

Math has always been a challenge with Sam. For the longest time he didn't like to count, didn't like to identify numbers and certainly didn't want to work with numbers. I worked with a lot of manipulatives, finding math in everyday situations (like # of plates needed to set the table) (how many grapes do you want to eat?) (Give Buddy 3 treats, he only ate 2, how many are left?) You get the idea. We then used large manipulatives and magnets for beginning addition. Sam has a one to one correspondence issue. His finger moves faster than his brain. So using something large to move or the resistance of the magnet allowed his brain to catch up. We now use the Kid Calc app on the Ipad and we do what NACD refers to as modular math. Here is a sample page and a couple of videos showing Sam doing his math.

We have a lot of work to do on math yet but I'm encouraged that he is making progress. Wait...that's another blessing!

To begin working on Sam's cross dominance issue we are working on his visual processing and also eye exercises such as hitting a ball extended on a string. Sam likes to hit it forward and back but struggles when the ball goes from side to side. We also use targets for the nerf gun and have him play basketball.

I use a button schedule for Sam to help guide him through his day. I put the buttons in a container, shake them up and then have him choose it and match it to the activity. The buttons are also part of a work box system to help organize Sam's materials.

For reading I use a variety of books and approaches. Due to Sam's cross dominance he requires a larger font and fewer words on a page in order to be successful at reading. Soooo...that made finding the right books difficult. Sam likes Arthur chapter books but the font is smaller and I need to blow these up on a copier to make them work for Sam. I have found a couple series of Scholastic books that work very well for Sam. The first is Discovering My World which corresponds nicely with the BrainPop videos.

I like these books because they have a single line of text on each page in a large font. The pictures are large and well done. The topics are interesting and engaging without going overboard. The books are written at about a second-third grade level and they teach the child about 5 major points on each topic.

My next favorite is the Welcome Books. These books also have large and interesting photos. The text is large and there is only a couple of sentences on each page.

I was recently excited to find another line of books at our library that also correspond well with the BrainPop video series. These are Lightening Bolt books.

They have vivid pictures, large font and just a few sentences per page. These are great books to also work on speech/language as you talk about the pictures shown.

I also record books on tape for Sam, again I Sammy-ize it. I use Henry and Mudge books and change the characters to Sam and Buddy. This way I don't need to make up stories I can just use the Henry and Mudge stories but peak Sam's interest by bringing him into the story.

Sam's absolute favorite books continue to be...books about Sam, go figure. NACD refers to these as Experience Books. The Experience Book pictured below is part of a series of books I put together regarding Sam's road trip this summer. I also use this same format to put review books together for Sam. Right now I am working on his animal classification and habitat book, using a single page for each animal and 5 good points to know about that animal. These books require some computer savy but they are relatively inexpensive to put together. I use 65 lb. cover stock, print the pictures and text from my computer and then put the pages into 8x8 scrapbook filler sheets. You can often buy these in lots inexpensively on Ebay. I laminate the front and back cover, punch holes and secure the pages together with pipe cleaners. Sam loves to read books about himself and his adventures. These books also allow him to share with his friends and family details about his trips. He reads the text and then can talk about the pictures. It has always been difficult for Sam to share because of his delayed speech.

To check Sam's reading comprehension we often play a treasure hunt game. I use old containers and hide messages through out the house. In Sam's case the treasure hunt normally leads him to a favorite snack. We work on Sam's fine motor skills as he opens the different types of containers (jars, toothbrush holder, travel soap dish, travel shampoo bottle...). He then reads the clue and has to follow the instruction. I try not to assist with the reading beyond pointing to the words or having him read it a 2nd or 3rd time. Doing something like this makes reading go from word identification to something more functional. He needs to read, think about it, remember it and act on it. Some days our treasure hunt goes quickly and others he struggles with comprehension and memory but he always loves to play.

I tend to use a variety of grade level books to get ideas. Sam isn't a huge fan of worksheets so I try to incorporate the ideas in ways that are more Sam friendly. Here are some of the books I browse for ideas.

Here is one of the reading ideas from the book. They had a printed story and questions.

I then take this idea and Sammy-ize it. Yep, that's my technical terminology. So I take the same story but make it about Sam and Buddy, which Sam would rather read about. I write it out on a white board (much more Sam friendly than paper and it allows me to increase the text size and spacing) and I make the questions multiple choice, circle the answer and verbal. Even though Sam struggles with writing it doesn't mean he is unable to do this type of work, it just has to be modified to work for him. So here is Sam's version of the same thing.

Here is another example of working with the beginning sounds of words. The book showed this idea.

And then I Sammy-ize it by putting it on a white board and using magnets that Sam can move to complete the words. So it looks like this:

Sam loves magnets and we remove the task of writing by using the magnetic letters instead.

In spelling we work on spelling things that are important to Sam, like his name. I now use a magnetic picture holder to attach pictures of family members, our house (so Sam can do our address), and items he would like to buy at the store so he can work on a shopping list.

One of my favorite science books because of all the cool projects and the fact that I can usually Sammy-ize them is this one:

We also do fun unit study's like "From Grub to Ladybug". Sam liked watching his ladybugs go from a grub to a chrysalis to a ladybug. We have also done the same with butterflies and will work on creating and observing an ant farm next.

I picked up these kits on sale at Shopko, all of them were less than $5.00 each. The really cool part of Ladybug land was that the top was a magnifying glass so you could see the grubs and lady bugs up close and personal.

I struggled for a long time with art projects for Sam because of his sensory issues he didn't like anything that got him dirty or was sticky or required glue or a scissors. I now found a cool little device called the Crayola Cutter which allows Sam to cut much the same way he would use a pencil or marker. After much work on sensory issues Sam has now become comfortable with paint and play dough. He enjoys creating his own masterpieces, telling me what they are and then displaying them on the refrigerator. Here is Sam creating.

And here is Sam showing his wonderful creation called "Beautiful Waterfall".

Now we also do field trips. Since September we have gone to Discovery World museum in Milwaukee. Sam loved how the water entered into the aquarium area.

He also loved to watch the jellyfish and didn't seem to appreciate my asking him where SpongeBob and Patrick were?

He really liked the same exact area that Ben was always fascinated by...the pulley and lever area. He got a pretty good workout lifting himself up in this chair. Not easy with Sam's low tone.

He also liked the atomic reactor area. I was so excited to see him listen to the computer and press the button when they told him to. Listening is a skill we are still working on.

Sam's absolute favorite part was of course eating lunch at the top of the museum on the deck overlooking Milwaukee and Lake Michigan.

Through our family support program we have a membership to the Milwaukee County Zoo so Sam can see his beloved otters. Of all the animals at the zoo, Sam is fascinated by the otters. Considering how much they move, swim and dive...I can understand his fascination.

He could sit there all day if you let him...

but we had other things to see, animals to classify and habitats to check out. Another fun area for Sam was of course...the zoo train ride.

He smiled from ear to ear again on this ride.

Sam loved the seal and sea lion show.

The show is entertaining and they keep things moving which helps to keep Sam interested.

Sam took this picture, he might just be a budding photographer.

Our final stop was at the butterfly pavilion. Unfortunately by this time Sam's hip was beginning to hurt and we had to end our day, head out to the car and allow Sam about 15 minutes to stretch out in the back seat before he was able to sit upright, put on his seatbelt and head back home.

We also purchased season tickets through our homeschool group to see the theater productions put on by First Stage Children's Theater. Our first play was Seussical and Sam loved it.

So...in between the medical stuff we have been keeping busy. Another blessing that has come our way through our Family Support program is a respite provider hired through College Nannies and Tutors. A couple of weeks ago a wonderful UWM student named Makenzie began taking Sam out and about around the community to give both he and I a much needed break. The break allows me to prepare Sam's homeschool program, run errands or just relax and it allows Sam to engage and have fun with someone besides Mom. Makenzie is studying to be a school psychologist and loves spending time with children with special needs. Sam really likes Makenzie and always looks forward to when she is coming. They have gone to the playground, on a hike, bowling, playing basketball and swimming at the YMCA, to the library and enjoyed the Port Washington marina. Makenzie comes 3 days a week for about 3 hours each time. I am so thankful that our wonderful case manager arranged this for us and that College Nannies and Tutors was able to find a perfect match for Sam and our family.

Sooooo, I have to say again...yes we have challenges and more than I thought we ever would but we also have blessings and for that I am thankful. Just the fact that after so many years Sam is finally working with me and we are enjoying his journey in learning together...that is a huge blessing for both of us. For my friends with children with special needs I hope I have given you some ideas and please, please feel free to ask me questions. I enjoy hearing from everyone!!

A few years' experience will convince us that those things which at the time they happened we regarded as our greatest misfortunes have proved our greatest blessings.
George Mason

Medical Update on Sam Mayer!

2011-10-17T19:32:00.008-06:00

I'm convinced that Sam just doesn't want me to get bored or possibly God is testing me or it's a combination of the two. Sam has had an increase in hip pain and is walking less instead of more. We headed back in to see his orthopedic surgeon and the x-ray unfortunately showed that we still don't have any bone regrowth in his left hip...so basically Sam still does not have a functional hip on the left side. Along with that concern is the chance that Sam has increased inflammation in the hip. It was suggested that we give Sam Tylenol and see if that calms the possible inflammation. So we gave him Tylenol but he continues to walk less and have a worse limp. Sooooo....we are headed in on Wednesday for a CT scan of the hip.

We are also considering a trip to Baltimore to have a one on one consult with Dr. Shawn C. Standard, a Perthes Specialist. I just want to make sure we are doing everything we can to give Sam a chance at having a functional hip, less pain and more mobility. Honestly...I just wish someone could fix it.

At the same time, Sam recently had blood work that showed his Vitamin D level was again well below the average. He has had two illnesses coming into the fall season which again raises my concerns about his compromised immune system. I have wanted to find someone that could do extensive testing and could figure out what is happening with Sam metabolically. Sam has so much going on that my gut keeps telling me that we have to figure out what Sam is over expressing, what he is lacking, how much yeast is he dealing with, what heavy metals does he have in his system, what are his amino acids looking like and what is the overall status of his gut and digestive tract. Yep, these are the kind of things that keep me awake at night.

Through a friend I was told about Dr. Norman Schwartz who is conveniently located in Mequon, Wisconsin. I am hoping and praying that Dr. Schwartz is the one who will be able to connect the dots and give us a better idea of how to help Sam biomedically. I believe that if Sam's body functions better, some of the issues that plague him like his compromised immune system, metabolism issues, vitamin/mineral deficiencies and overall function could be substantially improved. Your body working and functioning appropriately allows you to feel and function at a higher level overall. I'm not interested in applying patches or bandaids...I want to fix it. But Sam has always been a complicated puzzle. What is working for other children with Down syndrome doesn't seem to work for Sam. Like his NACD program, I need an individualized approach. Someone to look at just Sam and figure out not necessarily what is typical in the Down syndrome population but what is happening with just Sam. So I am in the process of getting labwork, urine samples and stool samples. Gosh, more experiences I never really wanted to understand...but Sam and God must feel I need to brush up on my biology. The picture is of the home test kits I need to complete in the next couple of days. I guess I should feel encouraged that Sam has already trained me on the use of urinals and bedpans...that training will come in handy.

I emailed Sam's pediatrician regarding the labwork that needed to be done. I know I have read on many blogs about doctor's that are not open to such thorough testing and think it is a waste of time and money. I agree with them if you don't have someone who can put the pieces together, analyze the data, make recommendations and then retest to see if the expected changes are happening. I have always held Sam's pediatrician, Dr. Dirk Steinert in high regard, he listens, he's open to discussion, he's willing to think outside the box but even I was surprised when he said "Yes, he could do the labs and he would like to come to Sam's next doctor appointment with Dr. Schwartz." I've never had a doctor offer to come to another doctor's appointment for Sam. I was equally thrilled when Dr. Schwartz said he would be delighted to have Dr. Steinert at the next appointment. I love when everyone begins to work together...I just hope this is contagious.

Now it's time for some heavy duty medical stuff. I'm not going to say I have all this right, because I hope to learn more but this should give you the gist of things. The explanations are from various websites. Sam's blood work will consist of:

peroxidase thyroid-Thyroid peroxidase test is a test that measures the level of an antibody that is directed against thyroid peroxidase (TPO).

Autoantibodies to thyroid peroxidase (TPOAb) are produced within the body. The presence of TPOAb in the blood reflects a prior attack on the thyroid tissue by the body's immune system.

CMP-The Comprehensive Metabolic Panel (CMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. The CMP is typically a group of 14 specific tests that have been approved, named, and assigned a CPT code

25-OH vit D-The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body.

In the kidney, 25-hydroxy vitamin D changes into an active form of the vitamin. The active form of vitamin D helps control calcium and phosphate levels in the body.

TSH-The TSH test is often the test of choice for evaluating thyroid function and/or symptoms of hyperthyroidism or hypothyroidism.

Free T4-Total T4 and free T4 are two separate tests that can help a doctor evaluate thyroid function. The total T4 test has been used for many years to help diagnose hyperthyroidism and hypothyroidism. It is a useful test but can be affected by the amount of available in the blood to bind to the hormone. The free T4 test is a newer test that is not affected by protein levels. Since free T4 is the active form of thyroxine, the free T4 test is thought by many to be a more accurate reflection of thyroid hormone function and, in most cases, its use has replaced that of the total T4 test.

Free T3-A T3 test is used to assess thyroid function.

Ferritin-The ferritin test is ordered to assess a person's iron stores in the body. The test is sometimes ordered along with an iron test and a TIBC to detect the presence and evaluate the severity of an iron deficiency or overload.

Serum Copper-If a doctor suspects copper toxicity, copper deficiency, or a disorder that is inhibiting copper metabolism, then he may order blood and/or urine copper tests along with ceruloplasmin to help evaluate the person's condition.

Plasma Zinc-Plasma zinc levels have been found to be dependent upon vitamins A and D. This suggests that a Vitamin A or D deficiency could cause a secondary zinc deficiency and that for treatment of zinc deficiency one should ensure adequate vitamin A and D intake.

Carnitine-free, total, esters-The primary function of carnitine in the body is to regulate fat burning and to help the body use stored fat as fuel. L-Carnitine is responsible for transporting fat to the powerhouse of our cells called mitochondria. Unless fat makes it to the mitochondria, it cannot be burned, no matter how much you exercise or diet! Carnitine works best with a diet low in carbohydrates and adequate amounts of protein, omega 3 fatty acids, and CoQ10.

Ammonia-The ammonia test is primarily used to help investigate the cause of changes in behavior and consciousness.

IgM, IgA, IgG titers-total-IgA, IgG, and IgM are frequently measured simultaneously. Evaluated together, they can give doctors important information about immune system functioning, especially relating to infection or autoimmune disease.

Homocysteine-A physician may order a homocysteine test to determine if a person has B12 or folate deficiency. The homocysteine concentration may be elevated before B12 and folate tests are abnormal. Some doctors may recommend homocysteine testing in malnourished patients, the elderly, who often absorb less vitamin B12 from their diets, and those with drug or alcohol addictions.

Hgb A1C-The HbA1c blood test — also called glycosylated hemoglobin, glycohemoglobin or A1c — estimates how well blood sugar has been controlled during the previous three to four months.

Plasma Amino Acid-This test is conducted in order to detect the content of amino acids in the blood. An elevated level of a certain amino acid is strongly indicative of a problem in the ability of the body to metabolize that particular amino acid. Improper nutrition, some medical conditions and fevers may cause a fall in the amount of amino acids in the blood. This test may also be done to detect such lowered levels.

Ionized Calcium-A blood calcium test is ordered to screen for, diagnose, and monitor a range of conditions relating to the bones, heart, nerves, kidneys, and teeth. Blood calcium levels do not directly tell how much calcium is in the bones, but rather, how much calcium is circulating in the blood.

Reverse T3-In times of stress, the body may need to conserve energy. Since thyroid hormone acts like our internal thermostat, thyroid hormones may be suppressed in times of stress. One way this is done is by converting the thyroid hormone T4 into an inactive form of the active T3 hormone called reverse T3. This lowers the amount of available active T3 which can lead to hypothyroid type symptoms.

The home tests are Urine Toxic & Essential Elements and Urine Toxic Metals from Doctor's Data. These tests: Urine toxic and essential elements analysis is an invaluable tool for the assessment of retention of toxic metals in the body and the status of essential nutrient elements. Toxic metals do not have any useful physiological function, adversely affect virtually every organ system and disrupt the homeostasis of nutrient elements.

We are also doing an Organic Acids Urine Test from The Great Plain Laboratory. This is what they say about this test: The Organic Acids Test (OAT) provides a metabolic “snapshot” based on the products the body discards through the urine. These small, discarded organic acid molecules are byproducts of human cellular activity, the digestion of foods, and the metabolism of gastrointestinal flora. At certain levels, organic acids in urine may be indicators of toxicity or “markers” of metabolic pathways. Metabolites of yeast or gastrointestinal bacteria appear against the background of normal human metabolites and provide an assessment of yeast and bacterial activity.

The new and improved OAT has increased the number of tested compounds to 70 (including Creatinine) and two new ratios have been added. The new compounds detected may result from variations in vitamin and hormone metabolism, energy level, intestinal wall integrity, neurotransmission, and muscle function.

The OAT offers the most complete and accurate evaluation of intestinal yeast and bacteria. These factors are of critical importance in neurological, gastrointestinal, and movement disorders. Abnormal toxic metabolites of these microorganisms can cause or worsen behavior disorders, hyperactivity, movement disorders, affect energy levels and immune function. Yeast can attach to the intestinal wall causing “leaky gut” syndrome, which can cause or magnify food allergies, impede absorption of vitamins and minerals, and cause intestinal disorders. Many people with chronic illness, allergic conditions, and neurological disorders often have one or more abnormal organic acids in their system. Factors which can cause or affect the intestinal yeast overgrowth include oral antibiotic use, excessive sugars in the diet, selective or combined immune deficiencies, genetic and other factors.

Once any abnormalities are detected, there is a variety of treatment options available to treat the condition. Treatments include antifungal or antibacterial products, probiotic supplementation, vitamins, antioxidants and dietary modification.

Patients and physicians have reported significant improvement upon treatment including: decreased fatigue, regular bowel movements, increased energy and alertness, increased concentration, improved verbal skills, less hyperactivity, better sleeping habits, and decreased abdominal pain.

We are also doing the Metametrix Microbial Profile. This is what they say about this test: The GI Effects Microbial Ecology Profile identifies predominate, opportunistic, and pathogenic bacteria using DNA analysis. Other analytes included are yeast/fungi, parasites, adiposity index, and microbial and fungi sensitivities. This profile helps monitor the intestinal microflora of the gut that are central to colonization resistance, which prevents colonization of the gut by pathogens.

Whew...that's a lot of information. I am fascinated to learn what this will all tell us about Sam. I am hoping that this is yet another piece of the puzzle in helping Sam be healthy, happy and reaching his full potential. Keep praying!!!

Homeschooling With Sam!!

2011-10-14T06:20:00.003-06:00

I didn't go into homeschooling because it is something I always wanted to do...it wasn't my passion. Sam had medical issues and immune system issues that made attending school very difficult. So after much pushing Ellen Doman, our NACD evaluator finally convinced me I could do it. First hurdle completed.

But then came the hurdle of Sam and I working together. This was more of a wall than a hurdle...and it was a really big wall. Sam is a great guy if you let him do what he wants to do and what he likes to do. Academics were not on Sam's top 20 list of things to do. Sam's inherent personality is pleasant but when asked to do something his response is simply "NO". Now let's take a "NO" boy and add in a mother that is not passionate about homeschooling and things can get ugly quickly.

I was comfortable going through the areas of Sam's NACD program that had to do with movement and I even quickly embraced flashcards...mainly because Sam liked them. But the academics presented so many difficulties for both Sam and I.

When I started homeschooling Sam was non-verbal. I found it really hard to continue to talk to, show, demonstrate things to a child that couldn't tell me if he understood any part of what I was saying. I had to rely on Sam's eyes, did he have that "I'm with you" look or was he somewhere far away. I had to rely on Sam's actions, was he moving toward me or away from me. Often times Sam would just move away. But that movement was communication...what you're doing doesn't interest me.

Another issue for me was when I thought about schooling I tended to refer to my public schooling experience. So I tried to create that in my home. Big mistake!!! Sam has never liked worksheets, he never has liked to sit at a table (unless he is eating) which now as I reflect back could have been an early indication of his hip issues. He is a hands on, make it fun and interesting type of guy. Oh yeah, and remember my auditory channel doesn't work all that well so I'm pretty much a visual kind of guy.

But as much as I failed in my early years of homeschooling...it really wasn't failure...because I was learning how to work with Sam. He was showing me what was going to work and what wasn't going to work.

Now add in Sam's hearing issues and the puzzle of working with Sam becomes even more complicated. Sam didn't respond to questions appropriately. Hmmm let me refer back to my school days. Teacher asks question, student responds inappropriately...teacher assumes the student doesn't know the answer. That would normally be the case...but then along comes Sam. Sam's auditory processing has been a struggle, add a hearing issue and the struggle becomes more intense. For the first 6 years of Sam's life, before he got his hearing aid, he attempted to guess at what people were saying. He maybe picked up on the last couple of words in a sentence but often his ability to hear and then understand was pretty much hit n miss. Now along with the hearing issue which affected his receptive speech abilities, Sam also struggled with expressive speech. Sam often knows an answer but can't pull out the right word or any word for that matter. I figured this out when NACD asked me to use word banks with stories and suddenly by glancing at the words Sam's ability to answer correctly went up significantly.

Now add in Sam's health and physical issues and Sam quickly becomes a very interesting child to educate. But if you have followed my blog you already know...I'm not one to back away from a challenge. We recently went to our NACD evaluation and I was thrilled that Sam's auditory processing was at a five but I also knew that it meant Ellen would check his dominance. I have always felt that Sam was cross dominant like his brother Ben since he exhibited many of the same struggles in reading and writing. Sam and Ellen quickly confirmed my suspicions. Yee Ha, another challenge. My signature for my email previously read, Sue Mayer, Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Hip Dysplasia & Perthes or as I like to say "Yada, Yada, Yada". It was my way of saying that Sam's labels do not define who Sam is...but I just couldn't add another one, so instead I changed my signature to Sue Mayer, Mom to Sam (10) who is genuine, unique and perfectly "Sam". I like that better.

My homeschooling over the years has become scheduled but not rigid. I changed out paper for white boards and magnets until Sam showed me he was ready for paper again. I have dealt with behavior issues, including complete non-compliance, hiding program items, tears, temper tantrums, choosing time out and an intentional lack of focus. I have struggled with my own demons of procrastination, lack of interest, lack of energy...just plain lacking. I am guilty of trying to find the perfect curriculum only to find that Sam will lead the pace, Sam will determine the interest and the curriculum that works for him will have to be tailored to him. I have tried the approach of "it's my way or the highway"...Sam quickly chose the highway.

And all along Sam was trying to tell me, show me, demonstrate to me that I needed to follow his lead...I needed to listen to him...I needed to understand him. If you would have asked me two years ago how Sam is doing with math, I would have told you it is non-existent and there is not enough medication in the world for me to tackle that subject with him. I bought the coolest manipulatives in the world and watched him hide them, shove them down a hole to the basement, feed them to the dog and throw them in the garbage. Sam hated numbers, he didn't want to count, he didn't want to recognize that a number was a quantity...he drew a line in the sand and dared me each and every day to cross it. But I just kept crossing that line. I tried new things, I tried old things, I used videos, sand, chalk, clay, magnets but each and every day we counted something, we tried something and gradually the light came on and Sam began to embrace this math concept. It's still slow but we are making progress...we didn't give up.

It isn't until I have a day like I did a couple of weeks ago that I finally realize the progress we have made. My love for and interaction with NACD often shows me the superstar kids. The ones that began speaking in full sentences when they were toddlers, the boys and girls that are having complete conversations by the time they are 7, the boys that are playing in Little League and competing on teams with their peers. I am happy for each of them but at the same time my heart still hurts for Sam.

And then he surprises me. The other week Sam and I were both sick. Now in the past Sam would have been happy to lay in bed and watch TV all day, he would have complained...no he would have staged a revolt if I suggested we do any program. But this time, Sam felt better before I did and as I lay in bed trying to get rid of a fever Sam pulled my blanket down and said "Mom, come here...come here now!" I just wanted to curl up in a little ball with my warm blankets around me and sleep but I've never been able to ignore Sam. We walked into our parlor where Sam now sleeps and I thought we were going to snuggle and watch a movie but Sam had different plans. Sam handed me his handwriting sheets and his DVD and said "Mom, Sam make better B's". You could have knocked me over with a feather. I put in the DVD and Sam said "Thank you Mom, Bye now". I walked out of the room thinking "Who was that child", maybe my fever is high enough that I'm hallucinating. I crawled back in bed only to be awakened a few moments later by Sam with more letters he felt he needed to work on. When he was done with his letters he called me again asking for his BrainPop movies. I was now sure my fever was getting the best of me. After his movie Sam was back in my room, pulling on my covers and demanding me to go with him. I shuffled through the front room and kitchen and followed him into the laundry room. Sam said, "Mom, Sam fold". As I got the clothes out of the dryer Sam laid out his Flip N Fold on the living room floor. I piled the laundry next to him and he told me to "Go bed, Mom". I was happy to comply.

A short time later Sam was back and wanting to do his words on PowerPoint. I began to say out loud "Who are you and what have you done with my child?" When he showed up with his math notebook I was sure my child had been abducted by aliens. At noon Sam plopped his gluten free bread and the peanut butter and jelly on to my bed. He came within inches of my face and said "Mom, sandwich please". I dragged myself out of bed yet again, shuffled to the kitchen and began to make his lunch. Sam suddenly whistled and said "Mom, listen", I said "Okay, I'm listening". Sam said "cow, dog, horse", "now you say". I began to chuckle, my little man, my dear, sweet, precious little man was now giving me sequences. I replied "cow, dog, horse". Sam smiled and said "Good job". I handed him his lunch, he smiled, said his prayer and then yelled "Everyone eating!" I walked back to my room, crawled into bed, folded my hands and thanked God for showing me just how far we have come.

"The difficulties you meet will resolve themselves as you advance. Proceed, and light will dawn, and shine with increasing clearness on your path."
Jim Rohn

Road Trip Out Takes and Highlights!

2011-10-13T22:39:00.009-06:00

I feel like it has been forever since I have posted and I apologize for being absent but life with Sam is taking some interesting turns and that put my blogging on hold. I really need to finish up the road trip and then I will expand on our homeschooling adventures, Sam's hip status, an interview and what has kept me tied up.

Soooo...this blog post will sum up another amazing road trip adventure. It may seem crazy to a lot of you, but I could head out on another one tomorrow. As difficult as all the driving and planning can be...the fun and memories are so worth it!!

I left off with Sam's adventure at the beach. But the road trips are not just about Sam. I also travel with two exceptional teenage girls, Brooke and Danielle. Our week in North Carolina was all about relaxing and chilling at the pool or ocean. Even though we didn't go many places...adventure and fun still found us.

One day we were chilling by the pool and we suddenly heard noises outside the fence that surrounded the pool. The girls of course thought we had a peeping neighbor but instead we found this guy.

Not exactly what I thought I would see in the middle of a residential area on a strip of beach land. He didn't seem in the least bothered by us and happily continued to eat and pose for pictures.

Brooke and Danielle bring books on every trip but reading doesn't hold the same intensity as...let's say....creating your own synchronized swim routine. Yep, they worked on this all week and I know you are just dying to see what they were able to create. Well I won't hold you in suspense any longer. Presenting the aquatic creation of Brooke Buser and Danielle Mayer.

Now, after Sam saw their wonderful production he decided to contribute a little aquatic creation of his own.

Sorry, but I was not as inspired as all of them and I stuck with reading the books. Brooke found it humorous that my book went everywhere with me. For example....

This is one of the reasons I buy my books instead of checking them out from the library. Brooke and Danielle also figured out how to creatively tan on very hot days. Check this out...

Yeah, those look like halos...but they're not!!!

One of our funnier moments was while we were waiting for the pizza man to arrive. I know you are thinking...how can that be funny. Well it's funny if someone decides to bust a move in the middle of the street like Danielle did. Here she is showing her best dance moves.

Now the really funny part that we didn't catch on pictures because we were laughing too hard is when a car pulled up behind Danielle and she was so caught up in her dance routine that she didn't notice them waiting...um and laughing...and when she did she ran back into the house.

As you can probably tell a great time was had by all. I look forward to the next road trip...hmmm....where should we go next????

A Dark Cloud On What Should Have Been A Bright Moment!

2011-09-19T20:54:00.013-06:00

In the last post you saw how much Sam loved the pool...but I knew we had one more surprise for him....the ocean. There is something so calming, so inviting, so refreshing about the ocean...it is another one of Sam's happy places. On the evening of day 6 and every evening thereafter I decided we would end our day relaxing by the ocean.

As I planned this vacation...my mind couldn't help but think about the possible concerns and problems walking on sand or navigating the beach would cause for Sam. Perthes has collapsed the ball on top of his femur completely, leaving Sam without a functional hip. It is difficult for anyone to walk in sand but without a functional hip the sand could prove to be more than Sam could handle. And yet...a part of my mind and heart didn't want to keep Sam from something he loved. We got him up a mountain...we can do the ocean.

We took the short 5 minute walk toward the ocean...let me clarify...me walking while pushing Sam in his wheelchair. As we got closer you could hear the waves hitting the beach. Sam turned to me and said "Mom...sound??" as he put his finger next to his ear.

I smiled, "Well, what do you hear Sam?"

"Mom, OCEAN??" as his smile grew bigger and bigger.

"Well, let's go check it out."

Sam began to clap and raised his hands up and to the sides, "I coming ocean!!"

Yep, this was the right decision. Sam was going to see his beloved ocean.

Sam continued to smile, leaning forward in his wheelchair, "Almost there, almost there!!"

He could hardly contain his excitement and as we came over the boardwalk...well...I think this picture says it all.

From his perch he could see all along the beach, to the left...

...and to the right.

Sam yelled to the kids jumping the waves and I knew that at some point he would want to do the same...but for the first couple of nights he was happy to just sit back and watch.

I loved to watch his expressions as he watched the waves.

He would often turn to me and smile and I knew that even though he couldn't express it in words he was telling me "Thank You, Mom...you know how much I love this place and how much I love you for bringing me here!"

And at those moments...when my heart would melt...I would thank God for encouraging me to take another road trip...to take the opportunity to create more moments like this. I put the worries aside, the challenges at rest for another day and I looked into those beautiful blue eyes and found all the courage I would ever need.

But..as I stepped back to take this next picture...

I couldn't help but feel that something wasn't right. As I look at Sam sitting in his wheelchair my mind reminds me how much Sam loved to play on the beach and that his most favorite thing in the world was to run along the water's edge. I begin to develop my plan for the next evening. I have to at least try. Each night we return Sam edges closer and closer to the steps that lead to the beach and I know his mind is thinking the same thoughts.

Just down those steps and I can be like those people under the umbrella and I can be like those kids jumping in the waves. I can do it.

So the next night I bring a big blanket, sand toys and a very excited little boy back to the beach. As I take off his shoes and socks he smiles and says, "Mom, Sam beach?" I smile and say, "Yep, it's time for Sam to go on the beach."

He waits at the top of the stairs as I spread out the blanket and then slowly hanging on to my hand and the rail he makes his way down the steps. Right foot always leading while leaning toward the right side. My heart breaks a little as I think of the hours spent teaching Sam to go up and down the steps in a beautiful left/right cross pattern. Sam's right foot touches the sand and he stops to wiggle his toes. I encourage him that if he takes just 10 steps, he can sit on the blanket. Sam smiles and moves forward slowly.

He rewards me with another big smile and begins to play in the sand.

And then I notice that he stops playing and he begins to look longingly toward the water...

His expression changes from happy, to sad....to determined. I hear him begin to talk himself through his next plan of action. "Sam...ocean...feet...water...do it....go". I take a deep breath and know that there is no changing this child's one track mind and determination. I'm guessing he's thinking I got this far, the water is only a few more steps away...about 40 and without a functional hip it may as well be 5 miles. The doubts I'm feeling are quickly brushed away as Sam begins to stand up and heads to the water. He takes two steps and then calls for my assistance. I ask him, "Are you sure you want to do this". He answers, "Yes, I go" and I know that we are on a mission and I just pray it turns out okay. After one more stop, Sam makes it to the water.

I see a little smile and he yells, "WE DID IT!" I begin to take a few pictures through my tear filled eyes to remember the moment.

Sam loves the feel of the ocean washing over his feet but....

As I watch him looking out over the ocean I see an expression of determination return and I know that Sam is planning to attempt the one thing he loves doing the most...running along the edge of the ocean. You can just see the wheels turning, the sand is harder, I got this far, just a little run...and in a blink of an eye he was off.

I knew he just had to do it and I also notice how far his footprints have pronated out and take a quick picture before the waves sweep his prints away.

Sam is running along the edge of the ocean, another dream fulfilled.

But then he stops as fast as he started and yells, "Mom, come here, go home" and I can hear and see the pain that this fulfilled dream has caused. The little boy who was just moments before smiling now has tears rolling down his cheeks, his body is leaning forward and to the right, he is holding his left thigh...and my heart breaks again. Damn you Perthes, why can't you just let him enjoy a simple moment on the beach??? I run to his left side and begin to provide support under his left armpit. He catches his breath and asks to sit down. In my heart I know if he sits here I won't be able to move him and the tide is not going to help the situation. The blanket which isn't that far away is my best bet for a resting place...but from here to there now seems like miles. I encourage him to take a few steps and after three he begins to yell "No, go home" and pulls away from me. Sam doesn't express pain like other children, he doesn't say "Ow, my hip hurts" he changes his position or he gets mad or frustrated...this is what pain looks like for Sam. The people on the beach begin to notice but when they see Sam has Down syndrome the looks go from concern to pity. I want to scream this has nothing to do with Down syndrome...this is a child in pain. If you saw a typical child limping and crying would you run over to assist...but instead they all continued to stare adding to Sam's volume and making me more frustrated and angry. Sam continued to walk a few steps and then broke down, leaning heavily on me and each time we stopped my heart hurt just watching the pain he was enduring. A 10 year old boy should be able to walk or run on the beach...is that too much to ask?? I wasn't sure what was stronger my need to yell at God or to ask for his assistance. When we got close to the blanket Sam collapsed on to his stomach. He lay face down, trying to catch his breath but not moving anything below his waist. I continued to rub his back as I ran through my mind a plan of how I was going to get him off this beach, in his wheelchair and home. I decided our best option is to wait it out, let him rest. I knew I could call Danielle and Brooke to bring the sling I had brought on the trip. The three of us could carry him up the steps and into his wheelchair if we had to. Sam began to breath slower and steadier, he raised his head and his flush cheeks had now paled. He asked for a sand toy. I moved the blanket and gathered them in a small circle around him and he began to play but I couldn't help but notice that he never moved anything below the waist for over 25 minutes.

His cheeks were flushed and his eyes a little swollen but my Sam was coming back.

He would yell every once in a while, mad at the sand for causing him pain.

But then he would return to playing and digging in the sand.

And after about 15 minutes...his smile returned.

As I sat waiting for Sam to recover my mind got caught once again in the trap that threatens to pull me in and swallow me whole. I have come to terms with Down syndrome, brain injury, apraxia, dysphagia, respiratory/immune issues, bi-lateral conductive hearing loss but Perthes...Perthes is a part of this journey I could do without. This diagnosis has completely changed Sam's mobility, something we worked hard to regain after the brain injury and something we all take for granted until we don't have it anymore. This diagnosis changes our every day. Sam has good days, bad days but each and every day is different. I can not determine what makes a bad day, how bad a day is and what Sam will and won't be able to do. Sam handles pain through position adjustments and listening to his body. He doesn't ask for medicine, he doesn't tell you it's a bad day, he doesn't even say his hip hurts...but as his Mom, a woman who spends 24/7 with him, I can tell you what pain looks like. I believe Sam wakes up every day and decides "this is what if feels like to be Sam Mayer today" be it with more or less pain. When Sam has a bad day his limp is worse, his behavior is worse, his attention span is low and he puts himself in traction or lays down a lot. On a good day Sam walks a little more, limps a little less and doesn't have to lay down as much. But on this road trip, doing what he loves to do, showed me just how much pain is involved and why I have chosen to homeschool him again. I can work with Sam on a good or bad day. He can change his position as needed, he can work with me even when he is in traction...but even with that said...I still hate this diagnosis.

Sam finally sat up and said "Go home". With assistance he made it to the stairs, up them and into his wheel chair. I gathered our stuff, brushed off his feet and put on his socks and shoes and we headed home. He walked slower than usual up the steps to the house and immediately put himself in traction once he got to his bed. I asked him if he would like me to put some oils on and he said "Yes". As I rubbed in his hip and thigh he would tighten his expression but would return to a smile when I was done. He drifted off to sleep, completely worn out from his experience and I prayed that he would have a restful sleep. He occasionally moaned during the night and was stiff and sore the following day but he continued to smile, he continued to laugh and he continued to amaze me.

Sam continued to want to go to the beach each night but now he preferred to stay in his wheelchair and observe from above the beach.

And he continued to call out and wave to the 3 pelicans that flew past us each night.

Sam continues to struggle with hip pain and discomfort. I hope to get a new x-ray done within the next week or so. If no bone growth is seen we will contact Dr. Standard, a Perthes specialist in Baltimore for a 2nd opinion. Sam doesn't have 4+ years to wait to grow bone, we need a lot of bone and soon. I don't know what else can be done but I won't give up, I can't...Sam is depending on me and we need to explore any and all options. Good night everyone!!!

Day 5 Road Trip: It's Time For Lounging at the Pool!

2011-09-15T21:42:00.006-06:00

Okay, I'm back and I want to thank everyone for their comments, thoughts and prayers for Ben. I am always touched by the comments people leave and I hope Ben's story has encouraged at least one teenager to wear a seatbelt and understand that curfews are put in place for a reason. I continue to be forever thankful that Ben is still with us and I am slowly beginning to control my need to hug him, for which he is grateful. I want to thank everyone who has sent cards and I want to thank Wendy Eckwielen and her family for providing us with a fantastic meal! We love all of you!

I know many of you are wondering about the rest of the road trip so it's time to get back to writing. On day 5 we decided to relax by the pool, in fact, for the remainder of our trip we did a lot of relaxing by the pool. Sam was up bright and early and in the pool by 7:30 a.m. He didn't leave the pool until after 1:30, took a rest and then returned again later. In case you haven't guessed Sam loves the water.

And what a wonderful pool we had. It was big and always seemed to be at the perfect temperature. Not too warm, not too cold....perfectly refreshing.

Sam was definitely in his happy place.

He loves to swim under water with his eyes wide open and see what everything looks like from that perspective.

Sam loved his new toy frog that skipped across the water.

It quickly became evident that Sam loved the ease of mobility he has in water. It's easier to walk, swimming stretches out the tightness in the hip and the weightlessness makes him very, very happy.

I love watching his expressions and how happy he is when he's in water.

He could have spent the entire day blissfully blowing bubbles and watching Danielle and Brooke swim under water. Goggles would be great, but so far the sensory issues have ruled them out so red eyes seemed to be the look for the week.

Now normally seeing Sam float face down in the water would cause most people to panic but Brooke, Danielle and I got used to Sam's favorite pose. I really didn't think he was ever going to come out of the pool. I loved having a pool to ourselves and watching Sam move comfortably.

Sam's absolute favorite time was when anyone would swim with him and then he would happily push your head under water and say "Mmmmm" until you resurfaced. We'll just call that speech therapy.

Danielle and Brooke practiced their breath holding abilities and began to create a synchronized swim routine...which I will share with you in a later post.

Breaks were taken to suntan and catch up on our reading. It was kinda erie how all the books we were reading mentioned areas we had been to during our road trips. I couldn't have planned that.

But what struck me and made me smile was to watch Sam. He was always smiling and he seemed so comfortable, something we don't always see since the onset of Perthes. Of course if he felt you were sunbathing for too long he yelled for you to get back in the pool.

He was truly in his happy place.

And he was not afraid to let it show!

To see him so happy, healed many of the heart aches I felt as he went through his surgery and recovery. He was happy again, he was moving again, he was as close to pain free as Sam can get.

I didn't think we could top this...but Sam still hadn't seen his other love yet...the ocean. We'll save that for Day 6...you won't want to miss his expression and my realization of how painful Perthes can be. We cooked out brats and hot dogs and enjoyed a quiet meal together. I showed Brooke and Danielle one of my favorite websites, www.reecesrainbow.org. After reading about the many special needs children awaiting adoption Brooke was convinced she should adopt them all. The girls then settled in for their favorite road trip custom of watching horror movies, after two bad ones the winner of the evening was "Train". Sam and I departed to bed and Sam was sound asleep within minutes. I stroked his hair and told him how happy I was that he got to enjoy the pool and what a good swimmer he was becoming. He smiled and said in a very soft voice, "Love you Mommy". It doesn't get much better than that. Good night everyone!

"For Our World" a poem by Mattie Stepanek

2011-09-11T08:26:00.000-06:00

“For Our World” ~ a 9/11 poem by Mattie Stepanek

For Our World

by Mattie Stepanek

We need to stop.
Just stop.
Stop for a moment…
Before anybody
Says or does anything
That may hurt anyone else.
We need to be silent.
Just silent.
Silent for a moment…
Before we forever lose
The blessing of songs
That grow in our hearts.
We need to notice.
Just notice.
Notice for a moment…
Before the future slips away
Into ashes and dust of humility.
Stop, be silent, and notice…
In so many ways, we are the same.
Our differences are unique treasures.
We have, we are, a mosaic of gifts
To nurture, to offer, to accept.
We need to be.
Just be.
Be for a moment…
Kind and gentle, innocent and trusting,
Like children and lambs,
Never judging or vengeful
Like the judging and vengeful.
And now, let us pray,
Differently, yet together,
Before there is no earth, no life,
No chance for peace.

Mattie J.T. Stepanek ©
September 11, 2001

Hope Through Heartsongs
Hyperion, 2002
Just Peace: A Message of Hope
Andrews McMeel, 2006

Mattie Stepanek was 11 years old when he wrote this poem on the day of 9-11.

During Mattie’s ‘almost 14 years’ of life, he penned seven NY Times bestselling books of Heartsongs poetry and peace essays, and served as an ambassador for many peace and disability-related organizations.

Mattie died in 2004 due to complications of a rare neuromuscular disease. You can learn more about Mattie and his foundation at The Mattie J. T. Stepanek Foundation
.

This Weekend Changed My Perspective On Life.

2011-09-08T06:34:00.002-06:00

Some of you may have noticed my absence from blogging, Facebook and email this week. I still need to finish blogging about the road trip and updating Sam's homeschool journey, but everything came to a screeching halt this weekend and in an effort to possibly help others and to help clear my mind and allow me to move on I will share our experience.

On Sunday night our phone rang at around 1:30 in the morning. As a Mom, parent or family member…we all dread the late night phone call. Your mind begins to cycle through who could be calling and why. I begin to mentally take account of my children, Sam is in bed sleeping, Danielle is in bed sleeping, Ben...oh no...I didn't hear Ben come home after I called him at 11:15. Is he home, is he safe sleeping in his bed? I remember him arguing with me about being over protective and worrying for no reason at all…he’s just working on a friend’s truck, what’s the big deal? I have explained to Ben that ADHD gives you an amazing amount of extra energy and you go and go like the Ever Ready Bunny but then all of a sudden your body runs out of energy and it shuts down. He has been staying up too late and not getting enough rest...but please, please don't let this phone call be about Ben.

I watch Jeff closely as he answers the phone and when I see him begin to rush to get dressed...I know my worst nightmare is occurring. Something really bad has happened to someone I love. I hear him say "Is he alright?" My minds says, please don't let him be talking about Ben, please. Jeff continues, "Where was the accident?" He hangs up and acknowledges my worst nightmare. "Ben was in an accident on our street, I'm going to go with him to look at the truck." I watch Jeff rush outside and in the dim shine of the garage lights I think I see Ben. My mind thinks, okay, well he's alive and he's walking so it must not have been a really bad accident...right??

I quickly get dressed as Jeff leaves with Ben and some friends. My mind is whirling, were his friends in the truck?? Are they alright...is he alright?

Ben and Jeff walk back in and the friends seem to have left. Jeff begins to fill me in on how bad the accident is and that the truck is totaled and in the woods. Ben begins to tell us what he remembers. Turning on our road and then waking up because he was being bumped around and spinning and nothing else until his friend brought him home. He's not always making sense. He searches his mind for more but then the shock and the knowledge of what has happened hits him again and he gets sick. I ask him if he had his seat belt on and he turns to me with more sadness in his eyes and says “No, Mom…I’m sorry I didn’t have it on.” How many times has Sam told Ben to put his seat belt on to be safe. If you don’t want to listen to me why wouldn’t you listen to your little brother?

After hearing how bad the truck is damaged and hearing Ben not always make sense and then get sick, I turn on all the lights.

It's then that I notice that Ben is bleeding out of his left ear, his face on the left side is red and bruised and as he turns I notice the huge bulge behind his left ear that is pushing his ear forward.

Oh no God...I jump into my medical mode, something perfected over the years by Sam and I explain to Jeff that we need to get Ben to a hospital right now. Ben has so many signs that scream to me head injury that we can't get there fast enough.

As we pass the accident scene I am thankful that it is dark and I can't see the truck. My heart is already pounding and my mind is already scrolling through the "What if's?" What if he does have a head injury? What else could be happening to Ben as he sits here in the truck with us? Was he unconscious and for how long? He doesn't look that bad, he's talking, he's making more sense now. Please, oh please, God let my baby be okay!

It's funny how your mind can take a 16 year old, 6'2" boy and suddenly reduce him to the little baby you held in your arms so very long ago. I continued to talk to Ben to make sure he was awake and coherent. He looked in pain but I think a lot of that pain was coming from his heart and not so much his body. He continued to shake and I could watch emotions cross over him, fear, pain, hurt, anger, frustration, worry and a clearing knowledge of what had happened.

Jeff pulled up in front of the ER and Ben and I rushed in. Jeff stayed outside to report the accident to the police and then joined us. The nurse immediately put Ben in a neck brace and began to assess his injuries. Ben looked so sad...so hurt and yet my heart was rejoicing that he was here...he was alive.

A head CT and chest x-ray were ordered. The police arrived and explained the extent of the accident to the doctor...more tests were ordered and a physical examination and internal injury assessment was done.

As Ben waited his emotions were all over the place. He was sorry but then angry, then sad, then worried and just plain hurting. I prayed for God to comfort his mind and heart as we determined his physical injuries. The police officer came in and looked at Ben in amazement that he was coherent, sitting up, talking and appeared to have no major injuries. He told him, "You are one lucky young man, because when I came upon your accident, had I not know you were here with your parents I would have called the rescue squad to do a body recovery because I would have assumed the driver did not survive."

It was at this point I began to cry. Having dealt with so many medical emergencies with Sam my ability to hold together in the worst situations, to think and react when my heart is trying to over ride my head, to remain calm, to stay strong for my child and not loose control is a strength I would not wish on anyone. But this wasn't Sam, this was Ben. This hit me...really blindsided me and my heart over rode my head. No parent should ever have to hear that their child should have died.

Ben was taken away for x-rays and I couldn't help but feel hopeful that he was walking to the room and not laying unconscious on a cart.

The officer continued to talk with us and explained that Ben had to have been driving at a rate in excess of 50 miles per hour upon impact. He said over and over that Ben was very lucky and I hoped that he was right. I knew that until I heard that his CT scan and x-rays were okay that we were not out of the woods yet...that statement holds a whole different meaning for me now.

The officer left and returned to the accident scene to take pictures and have the truck towed. We waited anxiously until the nurse returned letting us know that the head CT was clear...oh, thank you God...and another trauma had come in so the doctor would be with us a little later.

As we sat waiting I couldn't take my eyes off of Ben, I adjusted his ice pack and as I've done with Sam so many times, I was assessing and memorizing every feature of this child in my head. How did we end up here? Why can't you understand that your curfew is set for a reason? Do you realize how lucky you are? How much are you hurting and is there anything I can do to make it go away? Why does being a parent have to be so hard?

The doctor finally came in and clarified that the head CT scan was okay. Ben had a major concussion and would have to continue to be monitored by us, his back and chest x-ray showed no fractures. She explained to us the procedure of monitoring Ben and advised us that if he shows any signs of getting worse we are to return immediately. The blood from his ear was probably from cuts sustained when his head broke through the driver's side window. There was no damage to his ear drum. The swelling behind the ear was the impact zone and would need to be iced and monitored but thankfully there was no skull fracture or injury/bleed in the brain. For once I was thankful that Ben is so hard headed.

But the overwhelming feeling was that I was lucky enough to bring my boy home. He was leaving the hospital and coming home. He was still here with me. Over time we would sort out the details, deal with the tickets and costs...but he was alive and he was okay!

As we drove home I kept checking on Ben, waking him if he dozed for a while. I was beginning to feel more at peace and then...we came upon the accident scene and it was 6:00 a.m. so now I could see the truck in daylight. It was erie to see the tracks and how a large portion of the woods had been cleared by the impact. Jeff pulled over, Ben told me he couldn't go out there. I understood but I got out and the image of the wrecker pulling the truck onto the trailer will be with me for the rest of my life.

I began to shake and cry again as I saw the extent of the damage. The driver's side window was gone and I now knew that my son's head had broken it out. The truck did not roll, it dragged, none of the wheels turned but what made me hold my breath was when I saw the two very large indentations, one in front of the driver’s side door and one behind it. I began to pray and thank God and whatever guardian angels were out here at 1:30 a.m. that guided this truck into the woods...because just a foot in either direction would have meant that my child, my son would have died on impact. I can't even describe my feelings at that moment of realization but the sights, sounds, and smells of that particular moment are etched in my memory forever.

I went back to the truck and Ben told me he was sorry again but all I could do was thank God that he was in the truck with me. We went home and tried to sleep but that was easier said than done. I continued to wake Ben and check for coherence. Every time I have tried to go to sleep, the "what if's" and "how would I" swirl endlessly in my head and sleep eludes me. What if the door would have opened? What if Ben would have been ejected from the vehicle? What if he would have been unconscious and his Dad would have found him the next morning? How would I explain this to Danielle and Sam? How would I tell Sam that Brother Ben is in heaven? How would Jeff ever recover from losing the child that makes him proud and drives him crazy all at the same time. How would I live without Ben, he and I have been through so much together in his journey to get to this point? And then I try to shut it all off, I scream in my head "Stop It, he's here, he's okay" and I drift off to sleep.

I took Danielle to show her the accident scene and Ben's truck and the realization struck her just as it had struck me and her eyes filled with tears. As much as Ben and Danielle argue there is still an undeniable love that exists between a brother and a sister, it transcends the teenage annoyance. Sam was also with us when we looked at the truck, but he didn't make much of it and I didn't want to push the issue.

I requested Ben's x-rays and followed up with his chiropractor who informed me that Ben now had whiplash and had turned/twisted his spinal column from his neck to his upper back which could cause long term pain and other issues if not corrected through adjustments.

The next day as I drove with Sam into town I heard his tiny voice from the back seat say “Ben, naughty”, “Ben truck” “Mom, Brother Ben okay…okay?” I reassured him that his brother was okay as my eyes again filled with tears. Just when I think Sam wouldn’t understand he proves me wrong. He continued, “Brother Ben, good to be home.” I think that pretty much says it all.

I continue to struggle with sleep and I have a strong urge to hug Ben whenever I see him, not exactly what a 16 year old boy would want his mother to do. The night after the accident I had an overwhelming feeling of comfort or peace or something knowing that all 3 of my children were safe and in their beds sleeping...but my head got stuck in that mode and it became a source of anxiety and again sleep eluded me.

The Ben I talk with now has softened his attitude, has expressed being okay with spending more time at home, and is still working through the pain in his body and heart. It has been difficult for Ben to watch the reactions of his family members as they view his truck and each come to the realization of what might have been. But I hope lessons have been learned, priorities have been changed and appreciation of life has been realized.

All I can say…is I love you Ben and I am so very happy that you are here to read this and the “what if’s” and “how would I” didn’t have to become a reality. Please, please each time you leave our driveway, remember that you were spared and these bad choices are something to learn from with consequences you can't afford to test again...and please commit to making good choices. We don’t want to do this life without you. Your Dad and I love you more than words could ever express!!

Please hug your children a little tighter tonight and tell them you love them, use Ben's story to explain the importance of curfews and never driving when you are tired or impaired for any reason. Ben is an excellent driver who only lost one point in his driving test taken in a city he had never driven in before the day of the test...and yet today, tonight and every day forward I will pray that he is safe while he drives and that he remembers to appreciate his life each and every day.

Day 4 Road Trip: Goodbye Mountains...Hello Ocean!!

2011-09-03T11:38:00.010-06:00

We all woke up at around 6:00 a.m.....well....everyone except Sam. Sam decided to sleep in and since he's not the most helpful with packing we allowed it. We had packed up our bags the night before so we now needed to load the van and pack the cooler. So, what does travelling with 3 kids in a van look like, you may ask??? Well the back is always packed tight full especially with the addition of the wheelchair this year.

My rule is always to keep a good portion of the back windows viewable. Our biggest dilemma is usually getting the two teenage girls to limit their bags. I usually start by telling them they are allowed one bag and a carry on. We normally end up with 2 bags and a carry on and a great story about why they need that extra bag. They know me...I'm a push over.

The front seat is our 2nd storage area. We normally will pack all food items and the cooler into this area.

This makes it easy for me to grab a water or snack if I need one while the kids are sleeping. We then woke up, dressed, fed and loaded Mr. Crabby Pants into the van and left the beauty of the mountain cabin at 7:30 a.m. I think both the van and I were thrilled that this was the last time we would be traveling these very interesting, curvy, dangerous and often times scary roads.

Our drive to North Carolina was uneventful after Johnny led us through another interesting mountain pass to get to the highway. The kids napped, read or sang loudly to the radio. Danielle perfected her rap to Nicki Minaj's "Super Bass" while the song "Take A Back Road" by Rodney Atkins became this year's official road trip song. We arrived in the Outer Banks at 3:30 but it took until 5:00 to actually arrive at our house. Danielle had an ADHD moment (please understand we have a lot of these in our home) when she saw a chicken run across the road. We often talk about Ben, Jeff or Sam as being in one conversation one moment and then going into something completely different the next moment and we document these times by saying "Oh look, there goes a chicken!" We laughed hysterically when Danielle actually made this moment a reality by saying that particular phrase and meaning it. The traffic in the Outer Banks on the weekend is crazy as people check out and check in but we were happy to check out the beautiful properties and scenery...so very different from the mountains of Tennessee. We saw sand dunes, beach homes, beach mansions and the ocean.

I have to tell you a funny story about how we chose this particular property. I spent hours looking at houses in the Outer Banks on www.homeaway.com and www.vrbo.com trying to find a house with a large secluded private pool, close to the beach and in our price range. The pools never seemed quite right and if they did the price was way too high. As I was looking one night, Sam asked me to change the channel on his TV, so I got up and changed it and as I did he grabbed the mouse and clicked on a property. At first I was mad because he had lost my place but then I looked at the place he selected and it was perfect. A big secluded pool, a doable price and only a 5 minute walk to the beach. I next checked the calendar and unbelievably there was one week available in August. So we planned the whole trip around Sam's find. So...do you believe in divine intervention now????

We pulled up to our sandy entrance at 37 11th Avenue in Southern Shores, NC. The house was everything we had hoped for. It was perfectly secluded, no neighbors to worry about.

I loved all the decks but the parts we knew Sam would love were behind the home and 5 minutes down the street. Check out this gorgeous pool that was always at the perfect temperature.

And within a 5 minute walk was...the ocean!

We unloaded the van and moved in. The place was perfect for us, a few too many steps for Sam but most of the homes are built like this.

Sam and I had our own rooms with Danielle and Brooke sharing a room and one bedroom remained unused.

The first floor was the under house parking, outdoor shower, storage and the wonderful hammock.

The second floor was the bedrooms.

The third floor was the living room, kitchen and dining area.

When we got everyone moved in Danielle and I headed to the grocery store. Sam stayed home to watch some SpongeBob but then drifted off to sleep. Brooke unpacked her suitcases and updated our trip diary. We decided to make a favorite pasta salad which we would use for quick and easy lunches with some fruit or vegetables so we could spend as much time at the pool or beach as possible. This pasta salad is so yummy that I thought I would share the recipe with you.

Picnic Pasta Salad

1 package (12 oz) tricolor pasta

1/2 lb. fresh broccoli florets

12 oz. munster cheese cubed

12 oz. turkey ham cubed

1 medium sweet red pepper cubed

1 medium green pepper cubed

1 can sliced ripe olives

1 medium red onion chopped

Garlic powder to taste

2 envelopes Italian salad dressing prepared

Cook spiral pasta according to package directions, drain and rinse in cold water. In large bowl add the remaining ingredients.

Prepare salad dressing according to package, pour over, toss to coat and refrigerate. Enjoy!!

Brooke and Danielle love to help prepare meals so I had them cubing everything. I didn't realize this was going to become so emotional for them. The red onion had Brooke in tears within minutes, Danielle followed shortly thereafter and I laughed hysterically watching the two of them try to get through the onion cutting ordeal.

Sam and I departed for bed early since I was tired from driving and Sam's hip seemed to be stiff and sore. Danielle and Brooke took up another road trip tradition....watching horror films. The movie choice for the evening was "Dead End".

We decided not to show Sam the pool until the next day due to some rain and clouds appearing as we arrived. I couldn't wait to see his reaction!! Good night everyone!

Day 3 Road Trip, Down the Mountain and One Amazing Aquarium

2011-09-02T23:11:00.013-06:00

Sorry for the break in blogging but I needed to get two children ready for high school. Yep, 2 in high school...how did that happen? I remember taking their first day of pre-school pictures like it was yesterday. Time is going by way too fast for me!!

Okay, back to the road trip. Well, once you go up a mountain you have to come down. Coming down a mountain with a wheel chair is about as much fun as going up. Instead of pushing, you are now pulling and let me tell you, walking down a mountain holding on to a wheel chair is probably the best workout for your buttocks that you can imagine. The trail was steep enough at times that Danielle or Brooke had to get in front of the wheel chair and walk backwards while hanging on as I pulled in the back. But we made it and got a few more great pictures of the scenery.

It's just so peaceful...unless of course you hit a bump with Sam and it hurt his hip or you didn't move fast enough for him. I'm not going to tell you that Sam made the trip up and down the mountain without complaining...we are talking about Sam here. But we all complain about aches and pains when hiking so we just took it in stride. There were no tears or muscle contractions which would indicate a major pain episode so we felt he did okay.

The girls began shedding clothes to stay cool and no, I did not join them in doing that. Sam continued to smile and give them directions. Yep, he would make a great supervisor.

At one point on the trail there was a large gathering of people because a female black bear had been sighted close to the trail. As much as we would have liked to stand around and try to see it Sam had other ideas. The heat was beginning to wear on him and his comfort level of sitting in the wheel chair on a bumpy path was at about it's limit.

Going down did seem much faster and easier than going up!

I am going to look back at these pictures and envy the heat when we start getting snow storms this winter. I just love our National Parks.

When we got to the bottom I asked Sam if he had fun. He gave me his usual answer "All done". I then asked the girls if they were going to hike another trail. For some reason they also felt "All done" for hiking. So we headed back to the cabin to shower and get ready to see the Ripley's Aquarium.

When we got back the girls decided to sit in the hot tub...sore muscles perhaps??? Sam laid down for a while and I took a much needed shower. We had a snack and headed to the Aquarium. After pulling the van into a parking structure that had such a low ceiling I kept ducking we finally parked and unloaded the wheel chair. We wheeled Sam up to the entrance, paid our $90.00 entrance fee which I felt was a lot and seriously hoped this was going to be worth it and walked in.

Sam's reaction quickly assured us that this was worth it.

This place is huge and many aquariums have the walk in glass tunnel but this one was big enough that it also had a moving sidewalk to get you through it.

And of course they had a rain forest and a.....waterfall.

Sam was fascinated by and loved to watch the sharks swim by.

And these were big sharks!!

There was so much to look at that keeping Sam engaged was not a problem.

Such beautiful and colorful displays of coral!

And so many sharks, really big sharks that you saw one wherever you looked.

Some of the fish seemed very comfortable just laying on the top of the tunnel, especially this sawfish that Sam was fascinated with.

I told Sam to look at the school of fish. Sam's reply, "No school no".

Sam loved to watch the shark's move their jaws and teeth, I of course was playing the Jaws theme song in my head and thankful that there was glass between me and the sharks.

Sam kept saying "Cool" and "Mom, oh no shark coming!"

I loved the jellyfish display. Sam knew what they were as soon as he saw them.

They had the coolest exotic fishes too. Both the white and the brown stone looking creatures above are actually fish.

I loved the lionfish.

A nightmare in the making were the Japanese spider crabs. These things were huge, like monstrous...they can have a leg span of 12 feet and weigh up to 41 lbs. For comparison I found this picture on the internet.

It's like something out of a horror film. In my mind, that's a big underwater spider and I don't like it.

The aquarium also had these really cool crawl through areas so that you could be right in the middle of the exhibit. Here are Danielle and Brooke in the middle of the penguin exhibit.

They also crawled into another fish tank area and we captured this photo.

Then we decided to get one more group pictures by the huge jaws. Love Sam's expression on this one!

But the highlight of the aquarium was when Sam saw the diver.

Sam's face just lit up, he put his hand to his cheek and was in total awe of Chris the diver. Chris swam with the stingrays as another person told us all about stingrays.

Sam couldn't take his eyes off of him and his smile was from ear to ear. It seemed that we were not the only one fascinated by the look on Sam's face. Chris began to look at and wave to Sam.

Sam was thrilled and then the magic moment happened. They each put their hands up to the glass. As I looked around, everyone who was watching was smiling. Chris's interaction with Sam and Sam's glowing face and huge smile touched everyone's heart.

A mountain and a moment like this, yep...this was definitely a great day!!

After stopping at the gift shop to of course buy Sam a teddy bear diver so he could remember Chris we headed back to the cabin.

It has become a tradition on our road trips to make a celebration meal of steak with Brooke's sauted onions and some crunchy asparagus. I make the steak and the girls take care of the rest of the meal. Brooke was so delighted with our meal that she even captured it in pictures.

Of course you can see who is first to sit down and start eating. Sam never misses food!

Mmmmm, yummy was Sam's favorite line for dinner and I had to agree. We then all decided to sit on the deck and let our food digest as we looked out on the beautiful Smoky Mountains.

Again Brooke captured some beautiful shots!!

This was one of my favorites while the sun was setting!

Always one to jump on an educational moment, I decided to read to the girls some history about the Smoky Mountains from one of my favorite travel books Frommer's National Parks With Kids.

Yep, you can imagine, they were thrilled but the teacher in me persisted. I read to them about the Cherokee's who originally owned this land or at least laid claim to it. I got their interest when I read that in contrast to European culture, women among the Cherokee were equal to men in their families. Mothers owned the family home. We also talked about what the Cherokees felt they needed to do to survive, how they were pressured to leave and the Trail of Tears. We ended with how the national park was finally bought. I asked questions to see if they were paying attention and they promptly raised their hands to answer them.

We all caught up on our reading.

When it got dark out the girls decided to take a walk. Part of me was thinking, are you crazy, it's dark and we are in the mountains. But I gave them a flashlight and figured they would soon come to the same realization. It took about 5 minutes for them to return and question me on what I was thinking, allowing them out in the dark where a wild animal could have gotten them...what kind of parent was I??? According to them they heard something growl and came running back, ah another lesson learned on their own.

The only wildlife I came across was on our back deck. We had a visitor.

Obviously this raccoon was a frequent visitor. He made himself right at home and we laughed as he fit his whole body through the hole in the garbage can lid...his tail and his two back legs were all you could see as he foraged through the garbage. Yummy!

The girls ended the day with a dip in the hot tub after they scared the raccoon away! What an amazing day. Good night everyone!!

Road Trip Day 3 - Climbing A Mountain...Literally and Figuratively

2011-08-29T18:51:00.010-06:00

Day 3 will be a multi-day post because we have so much cool stuff to show you and talk about. We got up on our third day and had breakfast to give us the strength for the hike of a lifetime.

Most people who know me don't realize the battle that goes on inside my head when it comes to Sam and his multiple medical issues. Outwardly I appear calm, creative and in control...that is my goal...but the process of getting there is one that can inspire me or overwhelm me, push me to new heights or make me struggle to stay out of the depths...it really just depends on the day. Everyday I choose to love Sam for just being Sam but everyday my emotions are a whirl of thoughts of am I doing enough, am I doing too much, what else can I do, what therapies, social circumstances, outside help, further medical intervention should I look at to help Sam. These emotions are usually kept at bay with prayer and letting Sam lead the way...but that's on a good day. Sam's NACD program gives me priorities which help with the focus, his therapists work on areas we discuss and I only work with people that take the time to really get to know Sam, to understand his wants, needs, communication and behavior. On a bad day when Sam has a pain episode severe enough to make him cry I struggle between anger at what is causing my child to hurt, frustration at not knowing if we are doing everything possible to help Sam and pain, gut-wrenching pain when I know my child hurts and I can't make it go away. But these hurts are not just because of physical issues. These same emotions hit me when Sam struggles at learning, when he tries to communicate with another child or person and they turn away and decide he's not worth the effort, when I see Sam wanting something...a friend, to physically do what other kids do, to just do what I take for granted each day and never think twice about. In Sam's short life he has struggled to do the simplest of human tasks...Sam has struggled to breathe, to walk, to talk, to communicate, to think, to process, to learn but he has never struggled to love unconditionally, to inspire me with his attitude and persistence, to test me to be the best person, the best Mom I can be. It is then up to me...if I can meet the challenge.

After Sam's pain episode, I gave the worry and hurt to God. I got angry enough to make a conscience effort that no matter what...Sam will see a waterfall and he will continue to enjoy his road trips however we have to make that happen. I don't want to take anything more away. The pain...well...it was still in Sam's hip and my heart and soon to be in other parts of my body...but as Mother Theresa says: "I have found the paradox that if you love until it hurts, there can be no more hurt, only more love." I was about to prove her theory.

We entered the beautiful Smoky Mountain National Park and we were on a mission. During my research I had purchased a great book "Scavenger Hike Adventures" by Kat and John LaFevre. This book details each trail and provides nature scavenger hikes for the trails within the park. This is a great book for homeschoolers or anyone who wants to get even more out of their hike and help educate along the way. The book details why it's a great trail, where the trail is, about the trail, how long is the hike and things to hunt for. The book described the beautiful 85 foot double waterfall which is the prize at the end of the hike. The trail was paved in the 1960's and is considered easily accessible for strollers and "do-able" for wheelchairs. The trail is 1.3 miles to the waterfall and is considered a gradual ascent of only 300 feet in a mile. That all sounded as they said "doable" and the girls planned to take on another trail after we finished this one.

The book gives great information on the local plants, trees and animal habitats. We packed our backpack with water and granola bars and headed to the trail. Parking was at a premium because everyone seemed to have the same idea we did. We started up the trail and quickly realized that a gradual ascent of only 300 feet in a mile sounds great in a book but is very different when you are walking it and pushing a wheelchair...but we were determined. The trail had many potholes and patches that were not so easy to navigate with a wheelchair and we found ourselves not only pushing but lifting Sam over the tough spots.

Brooke and Danielle liked to get a running start up the steeper areas of the trail. Yep, I followed behind taking pictures...of course.

Sam would yell to Brooke, "Run, Brooke, Run!" and then he would make panting noises which Brooke would then reply, "Yep, I bet this is really tiring you out Sam."

Now it was Danielle's turn to run and push. I myself liked the slow walk and push idea, but I respected their enthusiasm and energy.

There were great places to take a break and have some water, so many cool rock structures, streams, roots, trees, plants and wildlife. We all enjoyed the rest stops.

Sam liked to look up and see the tall green trees and the blue sky and clouds peeking through!

So much beauty to admire and inspire!!

Mom's turn to push and give the girls a break.

Not the most flattering pictures of my backside, (note to self, continue exercise and weight loss program while homeschooling this year!!)

We tried to enjoy the beauty around us while catching our breath from the upward climb.

We could hear the falls and Sam began to say "Almost there, almost there." What I can't really put into words is the look on Sam's face when we got to the top of the mountain and he got to hear and see the waterfall. This picture almost captures it.

His eyes were kind of glossy and although he couldn't express it in words, his face let us all know how much he appreciated the effort it took to get him there.

The bridge led to the center point of the two falls. It was slippery on the rocks so we didn't attempt to go into the waterfall as others did. Just seeing it and hearing it was enough for Sam.

The waterfall was gorgeous and the sound was comforting.

The girls decided to continue their hike down the side of the waterfall to get pictures of the lower falls. Sam had fun yelling to them to be careful and he just kept smiling.

Brooke got some great pictures while at the bottom of the falls.

As I sat and watched Sam, I thanked God for the beauty of his creations, for this wonderful little boy that takes me to places I may have otherwise missed. I am grateful for him pushing me to go further than my comfort level, challenging my thoughts and inspiring me to always think of the possibilities instead of the limitations.

The girls enjoyed the challenge of hiking further down the waterfall and they felt the same sense of accomplishment and joy that Sam and I were experiencing.

My words don't always express the sheer beauty of the area, so I will borrow some words from some famous people.

"Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their freshness into you, and the storms their energy, while cares will drop off like falling leaves."
- John Muir

"Above all do not lose your desire to walk. Everyday I walk myself into a state of well being and walk away from every illness. I have walked myself into my best thoughts and I know of no thought so burdensome that one cannot walk away from it. But by sitting still, and the more one sits still, the closer one comes to feeling ill ... if one keeps on walking everything will be alright."
- Soren Kierkegaard.

"When man ventures into the wilderness, climbs the ridges, and sleeps in the forest, he comes in close communion with his Creator. When man pits himself against the mountain, he taps inner springs of his strength. He comes to know himself."
- William O. Douglas

"What a joy it is to feel the soft, springy earth under my feet once more, to follow grassy roads that lead to ferny brooks where I can bathe my fingers in a cataract of rippling notes, or to clamber over a stone wall into green fields that tumble and roll and climb in riotous gladness!"
- Helen Keller

"Those who contemplate the beauty of the earth find resources of strength that will endure as long as life lasts."
- Rachel Carson

"Do not feed children on a maudlin sentimentalism or dogmatic religion; give them nature. Let their souls drink in all that is pure and sweet. Rear them, if possible, amid pleasant surroundings ... Let nature teach them the lessons of good and proper living, combined with an abundance of well-balanced nourishment. Those children will grow to be the best men and women. Put the best in them by contact with the best outside. They will absorb it as a plant absorbs the sunshine and the dew."
- Luther Burbank

"Wilderness has been characterized as barren and unproductive; little can be grown in its sand and rock. But the crops of wilderness have always been its spiritual values -- silence and solitude, a sense of awe and gratitude -- able to be harvested by any traveler who visits."
- David Douglas

" ..... to be whole and harmonious, man must also know the music of the beaches and the woods. He must find the thing of which he is only an infinitesimal part and nurture it and love it, if he is to live."
William O. Douglas

It struck me as sad that people felt they had to leave their mark on nature's perfect picture.

We got together for a group photo before we attempted the journey back down the mountain.

I was so proud of Brooke and Danielle for taking on this challenge with me. Here are two teenagers that without question understood my want and desire to allow Sam the opportunity to see the waterfall. We knew that the path was not going to be easy but then we only needed to look at Sam for our inspiration. We persisted and we overcame the obstacles and never for a moment felt like giving up. Another life lesson taught by a little boy that struggles with the spoken word but never fails to teach us so much.

In the next post I will include more pictures of our journey down the mountain and a trip to an amazing aquarium. Good night everyone!!

Road Trip Day 2 - Rest, Pain Episode and Loving Tennessee!

2011-08-26T14:10:00.015-06:00

After reading about our first day, I'm sure you are not surprised that we all slept in. When I did finally get up I walked out onto the deck and just took in the beauty of the area.

It was beautiful no matter which way you looked. The drive was worth it!

At about this time Sam woke up and unfortunately the 19+ hours spent sitting in the van made Sam's hip stiff and painful. He tried to stand up and began to cry. Please understand that Sam does not cry, so tears meant that the pain was over the top. I quickly located his Roxicet pain medication and after calming him down enough to get it in I told him to lay back down for a while. I put a pillow under his knees to put him into a traction position and I sat next to him drying his tears and talking him through the discomfort. It's times like this that just make my heart hurt. Having taken Sam on two previous road trips this was certainly something we had never dealt with before. A new twist or consideration that we now have to think about.

Sam began to feel better and we decided to venture out for some breakfast and go to the Super Walmart so we could pick up some groceries.

This was the first time I got a good look at the roads that led to our cabin and honestly maybe it was better that I didn't see them last night. They were narrow, some areas only wide enough for one vehicle to pass. Some of the roads had no shoulder, just a ditch or cliff to drop into. The incline to our cabin was like going straight up or down depending on if you were coming or going. It was a little crazy and I often wondered what did people do in the winter around here?

Our cabin was on Thissa Way and yes there was a Thata Way too!

This was the sign that I was so happy to see last night. The Misty View sign let us know that we had made it!

As we headed into Gatlinburg for breakfast Danielle became obsessed with a pancake house because she liked their sign.

Unfortunately, Danielle's pancake house with the cute sign was closed, so we went across the street. The waitresses at this restaurant had blue checkered skirts, tennis shoes and athletic socks on their arms. Hmmmm.....the girls and I began to immediately rationalize the arm socks and came to the conclusion that it was easier to carry hot plates that way...kinda like having a hot pad wrapped around your arm. Brooke the germaphobe was hoping the socks were new and washed regularly. After we got done chuckling about the arm socks our waitress came to tell us the specials in her soft, sweet southern drawl. I could see the fascination in Brooke and Danielle's eyes...the same two girls who spoke in British accents most of the way down in the van. Another accent to perfect...ooohhh great! During our short stay at the restaurant I was called, ma'am, hon, sweetheart, dear and my all time favorite...sugar. Who calls another woman sugar???

It appeared Danielle was hungry and delirious as she began to create a shirt monster using her hands under the lower part of her shirt. Kinda like the alien movies, yep this is what it is like to travel with 3 children under the age of 16. Random, goofy, crazy moments that I will remember always. Now let's not leave Brooke out, no shirt monsters but we could talk about Brooke's need to pack 40 pair of underwear for a 11 day trip???? My first question, who owns 40 pair of underwear??? Second question, why does she need so many? Danielle and I thought maybe it had something to do with the wetting incident while we were in Vermont last year. Awkward!!

We finished our delicious breakfast and headed to the Super Walmart. Sam only seems to remember when I picked up his TV at Walmart because his conversation always goes to "Mom, Walmart, TV box". Obviously the box had more of an impact on him than the actual flat screen TV. Note to self, upon return home work twice as hard on Sam's auditory processing to bring up that level of thinking before he goes to see Ellen Doman for his NACD evaluation.

Sam's pain medication had obviously kicked in because his mischief level went up. He continually tried to sneak random items into our cart, including a first aid kit, some Midol and some mouth wash. Interesting combination of items.

As we headed to the Walmart we noticed that our air conditioning in the van seemed to be working less and less. When we checked out I asked the cashier if she knew of a local place we could go to and have the air conditioning checked. In a short time we had the entire female staff trying to figure it out including one that kept holding Sam's hand. Brooke and I both felt that our question would have been answered quicker by one male than all the females in the store. I left the store with no direction in mind (go figure) but was pleasantly surprised when I came across an automotive garage in the next couple of blocks....so none of the women at Walmart knew about this place??? We had some hoses replaced, paid our bill of $10.00 and gave the technician a $5.00 tip and we were on our way happily with air conditioning again. We thought we knew our way back but quickly realized we were lost and needed Johnny our GPS. The interesting thing about travelling via GPS is that you never quite know where they will take you. When we travelled in Utah the GPS took us over a mountain to get to a Blockbuster. Shortest and most interesting route it could have taken us on.

Well this journey appeared to be going in the same direction. We began to go up a mountain. Johnny often asked us to pull off onto scary looking gravel roads and I decided he could find another route. Brooke and Danielle locked the doors so they would not be abducted by any mountain men. In an effort to discourage the girls from flirting with strangers I told them a story about mountain men coming down and grabbing young girls and then taking them to their rustic cabins to become their wives and slaves. Teenagers can be gullible but just in case they didn't buy it I found a few internet stories to prove it. Hee Hee!! You should have seen how wide their eyes got at the auto shop when the technician jumped into the van with them in it and backed it out to pull it into the garage. I couldn't help but chuckle a little!

Brooke hung out the window to catch some of the beautiful scenery.

The road twisted and turned in every direction, sometimes turning us almost completely around but always going up.

It was a beautiful drive even though I wondered if we were headed anywhere near our cabin.

The wooded areas were beautiful and then all of a sudden you would come across a tiny little hut or cabin and I of course thought about acting like the van had run out of gas and we needed to ask for help from whoever lived in that little hut but my imagination or gut feel told me to just keep on going.

Our road began to go down the other side of the mountain and suddenly it became a dirt road. Oh joy, I hope Johnny knows where he is going. I had been trying to avoid the dirt road path. Here we go!

That was a heck of a curve and it seemed like the road narrowed as we got around the curve.

You are pretty much out in the middle of nowhere.

We came across these steps and path but none of us wanted to explore because there was a random vehicle parked near and we didn't know who or what might be going on at the top of the steps. As we traveled this road we noticed a lot of random gravestones or small cemeteries with 3 to 4 stones. I started wondering if that's what happened to the people who drove these roads in winter, they died and were forever stuck on this road.

We finally got to the point where the gravel road became paved again and we felt we were headed back into civilization again. Johnny ended up taking us on a similar journey when we left Tennessee. I guess he wanted to make sure I didn't get bored. I found it really interesting that you could be on one of these backwoods roads and all of a sudden you would come across Bob's Deli or a hair salon. I'm guessing their businesses aren't booming and are only frequented by the locals. I didn't want to know what type of meat Bob's Deli carried or how long it had been there. That curious I am not but I do have to admit to wanting to interview some of the people we saw. I'm intrigued by what made them decide to move away from civilization, how do they make money, what is a typical day like for them, what interesting experiences have they had and what do they like and dislike about living in the backwoods.

We passed some more beautiful spots on our way back to the cabin.

This was one of my favorite spots.

We got back to the cabin and ordered some pizza from the only place that delivers to our mountain. It was very good and Sam enjoyed some hotdogs and cucumbers instead of pizza. Sam's hip was still sore so we encouraged him to sit in the hot tub. After complaining and yelling "No" every time his feet touched the water he finally got used to it and settled in.

Obviously this was making the hip feel better. Take a look at that smile!

After Sam was done in the hot tub I rubbed in his hip with some Birch Essential Oil. Sam rolled over and drifted off to sleep. I watched him breath, the calm steady motion of his chest rising and falling and I placed my hand on his hip and prayed. I thought about how I had considered cancelling our road trip for this year due to Sam's hip issues. But then I thought about last year and how happy I was we had taken our road trip even though Sam was diagnosed with Perthes a few months later. I didn't want this new twist in our journey to take away another thing that Sam loves. Sam loves to see the mountains and the ocean. He loves nature and is drawn to waterfalls. He absolutely enjoyed hiking on our road trip last year. It was at that moment that I made a decision to take Sam on a hike to let him experience the things he loves first hand. He obviously couldn't walk it but that wasn't going to stop us. Tune in for Day 3 and Sam's hike up to Laurel Falls and our visit to an amazing aquarium. Good night everyone!

The Adventure Begins - Road Trip to TN & NC, Day 1, Will This Day Ever End????

2011-08-25T19:16:00.007-06:00

Yes, it's that time again. Crazy Sue takes 3 children on a road trip adventure across the United States. This year we had to scale back a bit due to Sam's hip issues...so we only went to TN and NC. Okay...well maybe I didn't scale back a whole lot but I did make sure we had electricity and running water this year.

It takes me a couple of weeks to get ready for the road trip. I need to research where we are going and what I will need to bring to accommodate Sam or to keep the girls entertained. A few days before we leave I begin to stage things I will need to pack...meaning...I begin to put them out so I don't forget anything. When travelling with Sam we have medications, nutritional supplements, medical equipment, essential oils, special lotions, shampoos, body wash, special food and digestive aids and then of course the usual stuff like clothing, toys and swimming/pool stuff.

I never map out our trip before we go. I rely on God and our GPS and yes, this does make my mother worry even more about me, God Bless that woman. Speaking of our GPS, this year we got a new Garmin and I felt the voices were pretty sedate, mundane...alright BORING! I found the website www.pigtones.com and I decided to have some fun. I downloaded the equivalent of Johnny Depp as Captain Jack Sparrow to surprise the girls.

We decided to begin our road trip journey at 2:00 a.m. so that we could get through Chicago at a good hour and we could make the trip down to Tennessee in one day. Yep, this is classic Sue..flying by the seat of her pants. Now according to my GPS it would only take about 12 hours to get there. Now I know a lot of you are already thinking, are you crazy? Who would want to drive for 12 hours in one day. This leads me to a very funny story and probably one of my parents more embarrassing moments at my open house when I was in elementary school. For our open house we were asked to write about what we wanted to be when we grew up. Many of the kids in my class went to the front of the room and read how they wanted to be doctors, nurses, teachers and even a lawyer or two. Then I got up...I walked to the front of the class and I read to everyone that I wanted to be a cross country truck driver. You could just see the pride...oh wait...maybe that was embarrassment on my parent's faces. Now keep in mind that this was the era of "BJ and the Bear", do you remember that show? The actor, Greg Evigan (not exactly hard on the eyes) was a cross country truck driver, aka B.J. "Billie Joe" McKay and he had a monkey named "Bear". Yep, he was my idol and I still want a monkey. I guess that taught my parents to pay more attention to my future writing assignments.

So, being a person who loves to embrace their dreams...I began these incredibly crazy road trips with the idea that I am showing my children and my niece the beauty of our country, the beauty of God's creation....hmmm....actually I think I might just be living in my childhood fantasy...still. I mean in all honesty, I still firmly believe that I haven't figured out what I want to be when I grow up. That's my story and I'm sticking to it.

So, anywho, we actually started out at 2:30 a.m. because I forgot to wake up, but since Danielle and Brooke never went to sleep they were happy to wake me up and get us going. The van was packed, Sam was sleeping comfortably in his seat, as we had planned, by putting him in the van to fall asleep earlier in the evening with the girls. I turned on the GPS and Captain Jack Sparrow said "Steer this ship to the colored part of the map thingy". The girls cracked up and I looked forward to being led to Tennessee by the voice of Johnny Depp.

The girls settled in to sleep along with Sam and we flew through Milwaukee and headed out of Wisconsin. Illinois and Chicago were a breeze. Yep everything was going as planned. Yeah...that was until we hit Indiana.

We were flying along and then suddenly all the traffic stopped and remained that way with little to no movement for the next 4 1/2 hours. Oh, crap. We quickly figured out that our air conditioning does not work well unless we are moving...which we were not doing. Danielle decided to comment that she was hot and then proceeded to repeat this a few more times until I turned to her and said "And what exactly would you like me to do about that??" Maybe it was my look or my tone...but she didn't comment about the heat again. Even the voice of Johnny Depp coming from the GPS began to annoy me. We watched how creative people could be when put into this predicament. One man continually got out of his vehicle and paced, I would like to say he was praying...but it didn't look that way. Other drivers took this route...

Bahaing through the median strip to head back in the opposite direction. That's great if you don't have to get somewhere or if you know the area. I didn't think taking Grandpa Jay's van through the median strip was going to rank as one of my best decisions. Considering I have already replaced the brakes and alternator on the van during my previous road trips, explaining broken axles or something else going wrong was not really on my agenda.

When we finally began to move we came to the pull off and a gentleman explained that the freeway was closed due to a semi accident. Three semis had run into each other and burst into flames, one of the truckers died at the scene. I felt bad for the truckers involved, said a prayer and my frustration evaporated as we got moving again. It took us a while to get moving steadily again and unfortunately the stress had taken it's toll and my stamina was getting low so I suggested we pull off at a rest stop so I could take a power nap. I had already been driving for 12 hours by this time and according to the GPS I had 7 more hours to go. How can that be??? I know most of you reading this would say, good time to find a hotel but the cross country trucker in me wasn't ready to give up just yet. I have always been very good at listening to my body and it was screaming for a break. We pulled off and I crawled into the back. Brooke, Danielle and Sam probably got out of the van and 2 feet away and I was already asleep. While I slept for an hour, Brooke, Danielle and Sam kept themselves amused by going to the rest stop building, people watching, going for a walk, and then etching their names into a picnic table (not Mom/Aunt approved) while having a sing-along with Sam. I woke up, went into the rest stop and splashed my face with cold water. I stretched and jogged a little and then went to fetch the kids as they were singing another verse of "Mr. Golden Sun" for 7 more hours of driving. I did mention....crazy....right!

I was so thrilled when we got to the "Welcome to Kentucky" sign. I couldn't get out of Indiana fast enough. Brooke continued to take a few more pictures as we entered Kentucky.

At this point the kids drifted off to sleep again and I would just look in my rear view mirror with envy. They missed our entry into Tennessee, which was beautiful, and considering the number of hours I had been driving I didn't think I should drive and take pictures at the same time...so you'll just have to take my word for it that it was beautiful. The landscape went from flat farmland to rolling hills and then finally into the Smoky Mountains. After having seen the Grand Tetons, the Smoky Mountains were smaller beautifully green mountains, no snow covered tops but still pretty in their own way. I was counting down the hours and our destination was to the rental office...I was desperately hoping that our cabin wasn't very far away.

As we got close to Gatlinburg I woke up the kids and asked them to start helping me navigate the rest of our journey. More eyes are always helpful when you are in a new place...and you have been driving for 18 hours...and it's getting dark...and you are headed higher into the mountains...to find a cabin...somewhere on a mountain....in the dark. Praying and breathing, praying and breathing! We passed the strip and the kids were amazed by how many commercial attractions could be jammed onto a 2 mile strip. We continued on and got to the rental office at 9:45 p.m. after driving through a portion of the Smoky Mountain National Park...yep dark forest, lots of curves, and continuing to go uphill. What exactly was I thinking???

The rental office was closed, of course, but some lighting would have been helpful. I shined the van lights on the entrance and located the lock boxes. Trying to open a lock after driving 18 1/2 hours, in the dark is pretty interesting...but I got it open and pulled out what felt like a lot of paperwork and a couple of keys. I locked the box and scrambled back to the van to see what we had. I was also praying the cabin was very, very, very...okay 1 more...very close. From the directions it appeared to be just down the road....um....and up a mountain.

We went down the road, found the entrance to the golf course which was curvy but doable and then we got to the base of yet another mountain. The road began to narrow and the only light we had was our headlights. It took us 3 turn arounds to get us on the right road. Now please...take a moment to appreciate...turning around a full size van, in the middle of the night, on a mountain, on a very narrow road after driving for 19+ hours with 3 kids. Are you feeling it?? I was driving on adrenaline, prayer and Dr. Pepper. We began to figure out these crazy roads and when we got to what we thought was the incline (more like driving straight up) to our place, I gunned the engine which skipped a little causing my heart to skip and me to grip the steering wheel even tighter and praying just a wee bit harder but rejoicing when we saw the sign that said "Misty View". We had finally arrived at our first destination.

I don't think I can even describe how good it felt to put the van in park, turn off the engine and come to the realization that I was done driving. We were here, we were safe and from what we could see this cabin was a whole lot better than the one we had last year in Maine that had no running water or electricity. I looked up, said a little prayer of thanks...who am I kidding....I screamed "THANK YOU, GOD"...I've never been very good at being subtle. I have to admit I was a little miffed at Captain Jack Sparrow for promising me a 12 hour voyage and ending up on a 19+ hour adventure, but when I thought about it...wouldn't that make sense for Captain Jack Sparrow. You naughty pirate!

As we got inside and started to find the lights, our spirits began to rise.

The first room we saw looked very nice. Then we made it to the kitchen and began to turn on more lights.

Sam quickly made himself comfortable in the first bedroom he found.

Danielle checked out the welcome book and started reading the comments of previous guests.

With the lights on we quickly realized this place was perfect. Warm, inviting and well...we were here! That's all I need to say.

Brooke and Danielle saw the loft and quickly claimed the upstairs bedroom as theirs.

They even had their own seating area, Jacuzzi tub and what looked like a beautiful deck outside their room. It was too dark to see what our view would look like but so far the inside was great.

We dropped our bags, locked the doors and went to bed. Good night, everyone!!! Stay tuned for Day 2, Exploring Tennessee and Day 3, Hiking while pushing Sam up a mountain!

Headed Out For Another Road Trip

2011-08-07T23:30:00.002-06:00

Hey Everyone, I just wanted to let you know that I will not be blogging for the next couple of weeks because I will be heading out on a road trip on Thursday.

Sam, Danielle, Brooke and I will embark on yet another awesome adventure and I will be sure to blog all about it on my return. Have a great couple of weeks and I will take a lot of pictures and share the journey with you.

LET THE ADVENTURE BEGIN!!!

The Things That Keep Me Awake At Night!

2011-08-04T17:49:00.008-06:00

The other night I spent a few hours catching up on my reading...reading my favorite blogs that is. I then decided to finish my new favorite book "Heaven Is For Real".

This book is a must read and as I finished the book I found myself thinking about what I had just read. It was late and I needed to get some sleep.

I settled in but I just couldn't turn my brain off...a common problem in my world. The blogs and the book took me into a thought process that just kept building. First I was thinking about heaven and how the little boy in the book described it. Then I began to think about children with special needs in heaven and that's when I hit on what was keeping me from sleeping.

I have often read on blogs and have also heard people say to comfort grieving parents that now their child is free of cancer or is running and playing in heaven when the child that has passed had cerebral palsy or muscular dystrophy and was in a wheel chair. It is not uncommon to hear people say that an adult no longer deals with Alzheimers or the blind can see and the deaf can hear when they reach heaven.

Hmmmm...this got me thinking (Yep the opposite of sleeping). Will Sam have Down syndrome when he is in heaven???

I found myself struggling with that concept. I in no way believe that Sam is his Down syndrome but in all honesty...Sam's facial features, his personality, his demeanor, some of the things I so desperately love about this little boy are in fact related to his diagnosis. This is the Sam I know and love.

I remember when he was born and I looked into that little face and thought "he doesn't look like he has Down syndrome." And then I opened my first of many books on Down syndrome and each and every time I saw Sam's face staring back at me. His tiny little nose, his beautiful oval eyes, the space between his big toe and his other toes, the way he snuggled into my body and was never rigid or stiff, his short little neck and the delicate curve of his ears. Through my tears I began to love this little boy. I didn't know or understand how Down syndrome was going to affect him...I didn't know or understand how he was going to affect me.

As Sam grew our knowledge grew. We learned about the heart, the respiratory system, the brain, the digestive tract, oral motor, hearing, bones, and we began to meet more doctors and see more areas of Children's Hospital than I could have ever imagined. And yet, in my eyes...in my heart...Sam was still just Sam.

Over the years I have never wanted Sam to struggle, to be in pain, to feel different...and yet all of those things are part of the human experience.

Wait...maybe that's the answer to my question. Human experience versus heavenly experience.

Sam will be Sam in heaven...the difference will be everything else. Sam will no longer be viewed as a person with Down syndrome or any of the other labels he has collected here on earth...he will simply be viewed as Sam...one of God's children. I like to think that in heaven there is no need to label...all services are provided, all needs are met, everyone is worthy and loved. There is no need to identify, name, and categorize the differences.

I took a deep breath...I said a short prayer. I again thanked God for Sam...just plain Sam!!!

As I put Sam to bed tonight and we said our prayers I couldn't help but smile as he said these two lines in reverse order. "Now I lay me down to sleep, I pray the Lord my soul to take (instead of keep). If I should die before I wake, I pray the Lord my soul to keep, keep, keep (instead of take).

I then remembered when Ben was younger and at this point in the prayer he would say, "If I should die before I wake...wake me up."

The difference between Ben wanting to stay here on earth and Sam wanting the Lord to keep him near in heaven was not lost on me. I'm convinced he knows more than all of us. Good Night everyone!!