Life with Three Special Needs Children

Neuropsych Testing

2012-01-26T16:58:00.003-06:00

Today I took Cassidy for her second and final day of neuropsych testing. We turned in all of the documents that doctor wanted us and her teacher to fill out so that he could write his report, which we will go get on February 7th.

He did give me some "first thoughts" after the first session on Tuesday. So we'll see if he was "spot on" just like with Caleb two years ago or if his testing takes him in another direction.

Back in September we had a horrible experience trying to get Cassidy to do some homework and had one of our worst meltdowns with her. I ended up videotaping it. I'm so glad I did, because we were able to give it to the doctor to review to help him!

Praying for answers and guidance!

Caleb (20 months) - Steven (23 months) - Rocking, Rocking on the Airplane

2012-01-25T21:17:00.000-06:00

My dad has been a pilot since I was five years old. When Caleb was little I found a cute little airplane rocker at Wal-Mart and just had to buy it. In fact, I bought two of them so I could send one to my newphew. I think it cost me double what I paid for the airplane to ship it from NC to UT. We sure have gotten the money out of ours, because we moved it with us from NC to KS and have kept it.

The first time Cassidy came to our house for a visit when we were doing the pre-placement visits, we have a picture of Caleb and Cassidy riding the airplane together. I just can't seem to find that picture right now!

We pulled the rocking airplane out of storage not too long ago and Steven had completely enjoyed it. In fact, he enjoyed pulling the propeller off so much, that I got tired of putting it back on, so have stuck it in a drawer.

Here is a picture of Caleb at 20 months on the airplane and Steven at 23 months, wearing the same outfit!

Congrats ....

2012-01-22T19:24:00.003-06:00

to the winner of "7" by Jen Hatmaker goes to

Donna Archer

I will get the book to you the next time I see you!

Cassandra

"7: A Mutiny Against Excess" - Book Review and a Giveway

2012-01-14T21:15:00.001-06:00

I was thrilled to be given an opportunity to receive a digital copy of “7: An Experimental Mutiny Against Excess” written by Jen Hatmaker and write a review on my blog. I had read one of Jen’s books (“Girl Talk: Getting Past the Chit Chat”) previously with my BLT group at Church, and ordered a number of her other books, but have not had a chance to read them. Life as a special needs mom seems to get in the way sometimes! However, when I heard about “7” I knew I was going to have to read it!!

If you have not heard of Jen Hatmaker, here is a little information about her: Jen Hatmaker and her family live in Austin, Texas, where the city motto is “Keep Austin Weird,” and they work hard to do their part. Jen’s eight previous books include Interrupted and A Modern Girl’s Guide to Bible Study. She and her husband planted Austin New Church in an economically and ethnically diverse, socially unique, urban area of the city in 2008. They are in the greatest adventure of their lives, (thrilled to find out where they have planted is known as the “church planters graveyard”) and have made some incredible new partnerships in ministry. They’ve seen their world turned upside down as they’ve considered what it means to ask God how to live and not just what to do. But it’s a good upside down, as part of that discovery will be the addition of two children from Ethiopia set to join the three they already have. Together they will keep Austin weird and seek to glorify God as they do. – Jen’s family has been blessed by the miracle of adoption with the two of the cutest little ones from Ethiopia.

If you ever get the chance to go hear Jen Hatmaker speak, RUN do not walk!! You will truly be blessed!!!!!!!

Now let’s get started on to the book.

As Tony and I have talked about implementing this into our lives, we definitely know that there are things that we definitely need to change. We are going to definitely implement some things, but we may not go to the extreme that Jen did in the book. But we are definitely going to use this book as a guide to help us in our mutiny against excess! Jen even wrote at the end of the book,

Whatever God has done or is doing in our family is certainly not a template, and I don’t want it to be. We live in a certain city with a certain task, we have specific gifts and we’re horribly deficient in others. Our life looks like it does because we are the Hatmakers, and God is dealing with us the way he’s dealing with us. We have history and sin issues and circumstances and geography that God takes into account as he stakes our place in His kingdom. You have an entirely different set of factors. I have no idea what this might look like in your life, nor do I want that job. Your story is God’s to write, not mine.”

To start, one thing that I love about this book is how Jen writes it. She writes it basically as a diary of her thoughts and experiences through each month as she works through each category. She did state that her seven categories took approximately 10 months because she spent four weeks on each section but then took two weeks before starting the next to work through the writing of the previous category.

Another thing I really liked about this book was the fact that Jen did not water anything down! She talked through her struggles throughout the book. She was REAL with us in this book!

Jen’s first category she focused on was food. Jen and her husband, Brandon, only ate seven foods for the month. Those foods were chicken, eggs, whole wheat bread, sweet potatoes, spinach, avocados and apples. This is one of the categories that Jen and her husband did not require their children to participate in.

As I read through the first chapter on food, I kept thinking about all the times that we have just run out and gotten fast food either because I didn’t feel like going to the grocery store or just didn’t want to cook. Having three special needs children and as many appointments that are on the calendar there are a lot of days that I feel like that. But, you know what, eating out costs a lot of money!!!! Even going to McDonald’s for our family of five, we could easily spend over $20, which totally adds up and can quickly drain the budget.

I have recently started looking for recipes for homemade mixes (like taco seasoning, onion soup mix, cream of whatever soup, ranch dressing mix) and am looking at not buying the pre-packaged stuff at the grocery store to help our food budget. I am also determined to eliminate the waste from our food. There are so many weeks that I throw away so much leftovers that it literally makes me sick. I think about all of the people in the world that would go to the garbage dumps to search for food and here I am throwing food away, just because it’s been in our refrigerator so long that it’s starting to grow mold. That has to change and is going to change!

I loved how Jen had a “Council” going through “7” with her to give her accountability and to help her along the way. While they didn’t eat just seven foods they had a wonderful concept of studying about seven different counties and eating how those counties ate for three days. While they were focusing on the country, they would pray for the country and its people. I want to implement something very similar to this with our family. It will probably end up being a once weekly thing so our kids, but especially our daughter, can hopefully realize how fortunate and blessed we are!

On Day 7, Jen talks about the “spiritual thaw” that she is feeling from this very first week. She also listed three questions that were provided by a pastor at their church that I will be praying about and answering and think that it’s worth everyone’s thoughts on. Those questions are: 1) What in my life, if taken away, would alter my value or identity? 2) What causes an unhealthy change of attitude, personality, or focus when “it” becomes threatened? 3) What is the thing outside of God that you put everything else on hold for?

The second month Jen focused on clothes. Starting out the chapter on clothes, Jen said she counted all of the clothes that she had and had 327 items from which she could choose from on a given day. She consulted her Council to help her decide how she would handle her clothing choices, especially in light of her speaking engagements she had that month. This is what they came up with:

Under-clothing would not count.

Her shoes counted as one item – tennis shoes and cowboy boots, which she said left, “twenty-one pairs untouched.”

One pair of jeans, dark wash, kind of plain.

One long-sleeved shirt black “Haiti relief” T-shirt with white print.

One short-sleeved gray “Mellow Johnny’s Bike Shop” T-shirt with yellow print.

One pair of gray drawstring knit Capri pants.

One long silk dark brown dress shirt.

And a second T-shirt was added when one Council member told Jen that she was “losing sleep over the scar; that it wasn’t substantial enough.”

The Council did variations of the clothing month, which I really liked and will probably implement in our family. (Now, you want to know what those are, don’t you? You’ll just have to read “7” to find out, now won’t you?)

Notice there is no coat on Jen’s list. Jen took the month so seriously that when it snowed in February and her Council members gave her the go ahead to wear a coat so she could play in the snow with her children, she put her capri pants on her arms and a t-shirt over her head.

I love what Jen wrote here and pray that I feel this way always,

I’m going to bed tonight grateful for warmth, an advantage so expected it barely registers. May my privileges continue to drive me downward to my brothers and sisters without. Greater yet, I’m tired of calling the suffering of “brothers and sisters” when I’d never allow my biological siblings to suffer likewise. That’s just hypocrisy veiled in altruism. I won’t defile my blessings by imagining that I deserve them. Until every human receives the dignity I casually enjoy, I pray my heart aches with tension and my belly rumbles for injustice.

The third month Jen and her family focused on possessions. This is one of the months that her children participated in as well. They were to give away seven things that they one, every day, to the total tune of 210 items in a month! Jen didn’t just donate all of the items to Goodwill or other charities in her area. She states that she was “looking for the perfect recipient.” Since as she put it, “Donating everything through a third party removes the relational magic when one human being connects with another.” Jen shared a quote from Shane Claiborne that she said changed her life and I believe can change the lives of many:

I had come to see that the great tragedy in the church is not that rich Christians do not care about the poor but that rich Christians do not know the poor . . . I long for the Calcutta slums to meet the Chicago suburbs, for lepers to meet landowners and for each to see God’s image in the other . . . I truly believe that when the poor meet the rich, riches will have no meaning. And when the rich meet the poor, we will see poverty come to an end.

Jen told of Easter Sunday where her church went to feed the homeless instead of having a fancy service in their rented space. She used the opportunity to get rid of seven of her purses, including a small pink purse, which she said she debated about even bringing. No one took that purse, until a six year old girl came up and was thrilled to have the purse.

Jen also stated that a number of her friends had gotten involved in 7 this month and they were able to fully stock and furnish an apartment in four days for a single mom and her two daughters that had nothing.

In month five Jen and her entire family turned off seven different types of media. In month six they limited waste by recycling, starting a compost pile, gardening, conserving energy and water, driving one car, shopping thrift and second hand stores, and only buying local. I love the fact that Jen’s family was able to have a backyard garden with the help of the Karpophoreō Project. I wish that was available near us, as that’s probably the only way I will have a garden, since I do NOT have a green thumb, no matter how much I try!

Month six was only spent spending money on their family only at seven places. Jen states that, “Giving, however, floats down a separate river.” And, “This is Jesus-approved spending, people. The recipients are not just my belly, my feet, or my indulged life but the ones Jesus told us to care for. Like ten thousand times. If you don’t like us spending on the poor this month, take it up with Jesus Christ and his dad, God.”

Month seven was all about stress and it’s elimination by implementing observing the Sabbath as a family. Jen used the “Seven Sacred Pauses” written by Macrina Wiederkeher as her guide. Jen also stated that her family would be observing Sabbath from sundown on Saturday to sundown on Sunday. You just have to read the chapter to get the fullness of it!

I am definitely going to be re-reading “7” and praying about how God would want us to “mutiny against the excess” in our family! Will you join me? If you would like to receive a copy of “7,” the publisher has graciously provided me with a copy to give away on my blog. I will be doing a drawing on January 22^nd to one lucky reader who does any of the following (leave a separate comment for each item):

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10 Years Ago (Beginning of Caleb's Adoption)

2012-01-05T13:20:00.001-06:00

Ten years ago Tony and I lived in Raleigh, North Carolina.

Ten years ago we had a major snowstorm in Raleigh that closed down the city and we were stuck in our house.

Ten years ago we had dial-up Internet.

Ten years ago we were still waiting "for the call" that told us we were going to be parents through the miracle of adoption.

Ten years ago we learned of a small church where we met many wonderful people, some of whom helped us and supported us during our waiting and after Caleb's adoption.

Earlier today I was thinking back to how ten years ago from now (give or take a couple of days) we were at our house due to the snow storm and needing to do something on the internet (dial-up!). It was a Friday night. We were on for quite a while and when we got off I noticed that we had a voicemail. I checked the message and it happened to be a counselor from our adoption agency in their California office wanting us to call her back. However, by the time we got the message their office was already closed. We had to wait the entire weekend, which for me seemed to drag on - especially after being cooped up due to the snow storm!

Then I had to wait the three hour time difference before I could even call them. I did try to call our local office that morning but, of course, they had no idea what was going on. So I still had to wait!

When I was finally able to get a hold of the counselor, she told me about a birthmother who was wanting to place her child for adoption, was due in eight weeks, just went through a match disruption and asked if we were interested. I called Tony, explained everything to him and we said we were interested. I was told by the counselor that the agency was going to send this birthmother via overnight service our profile and one other family's profile for her to choose from. All we could at that point was wait! (I really do NOT like waiting!!!)

The next day Tony and I both went to work and when we got home we went about our normal routine of dinner and relaxing! Our phone rang and I answered it. On the other end of the phone was a lady named Nova and she said that the had chosen us to be the parents of her unborn child.

We were ecstatic that it appeared our waiting was finally over. There was so much we needed to do to get ready. Thankfully we had a lot of clothes, a crib and baby stuff. We told Nova that we would get in touch with the agency and would be making arrangements to fly out to meet her in a couple of weeks.

Less than two weeks later we flew out to Sacramento for a long weekend and had our "match" meeting with Nova and our adoption counselor. Then we had to "wait" again for about six weeks! (Do you remember how I said I do NOT like waiting?!?!?!?!?!?!?!?!)

We visited the Capitol Building while in Sacramento on our "match" weekend!

There were many ups and downs during that six weeks, but we survived and have a precious son to show for it!!!!

Steven's Physical & Speech Therapy Appointments Today

2012-01-04T18:39:00.000-06:00

Today we had a physical therapy appointment for Steven. We hadn't been for a month, as the therapist said that his gross motor developmental skills were only about a month delayed at the our last appointment and she wanted to let him practice, practice, PRACTICE and see how he does.

At today's appointment, Steven's therapist was THRILLED to see how well he was working. I told her that he's been doing some toe-walking, but that we can't really pinpoint why he's doing it. I told her I've been putting his braces back on him, which she said he was fine and just to go with what he needs, in that if he needs them put them on and if he doesn't, don't!

Today she said he has pretty much caught up developmentally to his chronological age, to which I am thrilled. God made Steven such a fighter! To look back at the last 23 months and how far Steven has come, I am just amazed!!!!! To God be all the glory!!!!!!

Steven's therapist said that she wants to see him back in a month since he's still toe-walking. If it wasn't for the toe-walking she would have said to wait longer than a month, but she wants to keep a close eye on him!

It looks like we may be able to remove physical therapy from our list of services!

Next we met with Steven's speech therapist. She had a cookie monster toy with cookies to feed it. Steven did NOT like the noise of the toy, but it sounded like he tried to say "cookie," which he had never tried to say before! He also started saying, "uh-oh" today! He's getting there slowly, but surely!!!!

Merry Christmas (a little late, I know) and Happy New Year

2011-12-29T07:33:00.000-06:00

Dear Friends and Family,

Yes, I am just now starting to work on our Christmas letter, which is going to end up being a Happy New Year letter at the rate I’ve been going!

We have so much to be thankful for in 2011. Everyone has been healthy, which is a huge blessing, seeing as how we had two children in the hospital two different times last year! It’s never fun when your children are in the hospital.

2011 has been a year of challenges and excitement.

Tony continues to work for the government and is constantly getting new duties added to his job description. He also continues to do some adjunct faculty teaching.

I continue to stay home and take care of Tony and the kids. I manage the kids’ services and run them to all their doctor’s appointments and therapies. I had more than 220 doctors and therapy appointments for the kids last year! So to say I’m constantly on the go would be an understatement!

Caleb is now nine years old and in the fourth grade and continues to puzzle Tony and I, his teachers and the doctors. While he doesn’t seem to be drastically regressing like we’ve seen in the past, he has been exhibiting problems with his short-term memory, to which the doctors are puzzled. His teacher expresses concerns about his lack of focus, but no one really knows what to do about that issue. Caleb continues to receive his in-home support through the State of Kansas, for which we are very thankful! It is a huge help to us to have someone be able to come in and spend about three hours with him in the evening.

Cassidy is now eight years old and in the third grade. She is a puzzle as well, only from the fact that she likes to defy all authority and thinks that rules do not apply to her! But she’s a huge help when she wants to be!

In July, Caleb and Cassidy spent a week at sleep away camp. It’s a camp for special needs children and both kids had one-on-one counselors. It was a much needed vacation for Tony and I as we were able to go with Steven to Eureka Springs, Arkansas and do a lot of relaxing! When you have special needs children, it’s hard to get a break. We love Camp Barnabas and the kids are already signed up to go again in June!

September 8, 2011 - Finalization Day with the Judge

Steven will be 23 months old on the 30^th. We were very excited when we learned in May that we would be allowed to adopt him, which we were able to finalize on September 8^th. Last January 1^st, at 11 months old, Steven crawled for the first time after weekly physical therapy. We were all so excited when he started crawling. We continued with his physical therapy to work on walking. Steven’s hard work (as well as the hard work of his psychical therapists!) paid off when he started walking at 20 months! We now can’t keep him still.

As some of you may not know, Steven was born not breathing due to labor complications. From what we learned upon his placement with us, the doctors were not sure that he was going to survive. When it appeared that he was going to survive and was breathing on his own, they did not know what type of developmental delays that he would endure. We are so grateful to God for the progress that Steven has made! He is still not talking, but has started signing some words. We have added speech therapy to his weekly schedule! I just know that he will continue to do well!!!!

Steven did give us a huge scare this October/November/December. Because of his medical history, when he started exhibiting some symptoms of muscle weakness we notified his neurologist. They wanted to see him, but didn’t really see much that they were concerned about at that time and just wanted to monitor him. About six weeks later he started waking multiple times a night and banging his head on his crib. We went to the pediatrician who ultimately called his neurologist. We were then sent back to the neurologist and they ordered that an MRI be done to determine what might be going on. Some things that they were looking for were tumors or neurodegenerative conditions. Thankfully, we were pleased to hear that all looked clear! While he still is exhibiting the muscle weakness and still occasionally banging his head at night, we know that it’s nothing neurological and will just continue with his therapies and do what we have been doing to help him.

So that is a quick review of what’s been going on in the Sines household! We pray that this letter finds all of you doing well. We’d love to hear how things are going with you.

Merry Christmas!!!!

Steven's MRI - The Results

2011-12-17T12:38:00.000-06:00

We made it out of the hospital in time to go to Steven's neurologist to get the results.

Thankfully, we learned that there are NO tumors in his sweet little head or anything that would be signs of a neurodegenerative condition! Praise GOD!!!!!!!

I was told that they do not know why he has weakness on his right side, if it is going to a long-term condition or whether it's going to go away. Also, they do not know why he is waking up in the middle of the night and banging his head on the crib. We were told to have a Merry Christmas and they'd see us in three months!

While I am very grateful that there is not a serious issue, we would still like to know something more, because obviously there's something going on, everyone agrees on that! But for now we will just continue keep on keeping on!!!!

Last night we decided to have Steven sleep in the pack 'n play. We actually have one that is square that's actually considered a play yard, so I put that up in the living room and slept on the couch so I could be close to Steven. I was on the couch and asleep before 9:30 and slept until about 5:00 when heard Steven start rocking back and forth and hitting the mesh on the side of the pack 'n play. At least he wasn't hurting his little head!!!!

So I am praising God for the great news!!!! And we will just continue to take things day-by-day, just like always and watch him and see how things go. If he still seems to have the weakness at his 2 year check-up, I'll talk to his pediatrician about it then, but will also talk to his physical therapist at our next appointment.

Steven's MRI - December 16, 2011

2011-12-16T14:03:00.000-06:00

Well, Steven's MRI has completed. Now, I sit in the hospital room waiting for him to wake up. I have to admit that, even though I have tried very, VERY hard not to worry, I am scared what we are going to learn based on this MRI. I keep praying to God to give me peace, and I know that there are a lot of people praying for us, which I am very grateful for, but I have to be honest and say I'm still worried.

As I was getting out of the shower this morning and getting dressed, the line of a song kept running through my head, "I will praise the name of the Lord." And yes, I will praise the name of our Lord no matter what. It may not be easy, but I will do it. Also, the song "Strong Enough" started going through my head, as well.

I know that whatever happens, God is ultimately in control and all I can do is praise Him and go along for the ride!

This morning as soon as Caleb and Cassidy got on the bus Steven and I left the house. We went to Daddy's office and spent some time and then ran to Target. We got to the hospital a little early and the difficulties started when the registrar tried to put the arm band on Steven.

We got brought up to the sedation floor and Steven refused to stand on the scale, so we had to do where I held him on the scale and then put him down and get weighed by myself so they could determine how much he weighed. They took us to the room and tried to get vitals. You would have thought Steven was being murdered the way he cried. It broke my heart!

I sent Tony a text telling him that Steven is actually more difficult to get vitals done than Caleb. He texted back, "Unbelievable." That actually gave me a chuckle, which was very much needed at that time!

I talked to the resident on duty and then the pediatric intensivist. He wanted to know what had been going on and after I explained he said, "It's a good thing we're doing this."

So now we just wait! I am not a very good waiter!!!!!

Steven's Neurologist Appointment

2011-12-12T20:04:00.000-06:00

So today I took Steven back to the neurologist. The good news is that she doesn't see a big difference on the exam from when we were there in October. She did say that she would like to see if we can move up Steven's MRI that is currently scheduled for the 22nd. She is hopeful that there may be an earlier MRI opening, but that we were told we couldn't get in until the 22nd because there wasn't a sedation opening. She said if that's the case, she was hopeful that she could "sweet talk" the nurses to squeezing him in. It makes me very nervous that she doesn't want to wait until the 22nd. I know it's because they are being cautious, but still. I also keep going back to what she said in October, in that she didn't feel "it was tumor related," but told me to watch for things like vomiting (which hasn't happened other than when we all caught a stomach bug Thanksgiving week) and extreme fussiness. While Steven is not "extremely" fussy, he is much fussier and clingier than normal lately. We also had friends over on Saturday and they noticed that Steven is not his usual happy self.

So now we wait to hear if they will be able to move up Steven's appointment. (I really don't like waiting!) The PA also did tell me that if the MRI should come back normal, then we will schedule an EEG.

The only thing that is helping me not to break down right now is the fact that I know, 100% without a doubt, that whatever is going on with Steven, God has a plan and a purpose, even if I do not understand it!

So, in the meantime, I really hope and pray we can get some sleep because this is one tired mama!!!!!

So Very Tired!

2011-12-11T10:01:00.000-06:00

The last three weeks have been very tiring! Steven was sleeping through the night and then all of a sudden he started waking up in the middle of the night, rocking on all fours and purposefully hitting his head on the rails of his crib. I could go in and re-position him in the middle of his crib and put his blankets on him and he would go right back to sleep. Only to be awoken to the sound of head-banging again an hour or so later. Since that started he has been much fussier than normal, much clingier than normal and we're left wondering what is going on.

I had taken him the neurologist at the end of October because he started walking on his right toes and holding his right arm up across his chest when he walked or right by his side and not swinging it. We had also seen some small tremors in his hands and legs. They were not concerned about seizures and didn't think it was a tumor. I was told that we could do an MRI, but because of the results of his MRI in the hospital when he was born (which I didn't know he had had because we weren't given all of that information) and the symptoms were relatively minor in relation to everything that he had been through at birth, they didn't think it would give us enough information to put him through the sedated MRI at this time. Although, she did tell me some things to look for and said if those happened we would definitely do the MRI sooner rather than later.

Then the head-banging started at night. He wasn't doing it during the day and was taking a good nap. I thought maybe it was just a phase and he would stop. We kept our same night time routine and still the head banging continued. I took Steven to the pediatrician on Thursday to have his ears checked, even though he wasn't showing signs that his ears were bothering him.

I told his pediatrician about our visit to the neurologist, what had been going on the head-banging, the fact that we've seen him starting to hold his left arm closer to his body and chest, as well as the right, and how much fussier and clingier he has gotten, especially in the last few days prior to our visit. It was to the point, especially later in the day, I couldn't get anything done without Steven wanting to be held. Steven's pediatrician didn't find anything on the exam that would cause her any concern. She told me she would call and talk to the neurologist's PA, whom we had seen at our last appointment, and together they would determine what we needed to do next.

We had some friends over for dinner Friday night and they even commented on how different Steven seems.

I received a call from the neurologist's office on Friday. We have an appointment with them on Monday afternoon at 1:20 and an MRI is scheduled for December 22nd. Praying that we get some answers (and some sleep)!

22 Months Old and Good News at Physical Therapy

2011-12-01T16:44:00.000-06:00

Yesterday Steven turned 22 months old. He had a physical therapy and speech therapy appointment at the hospital yesterday morning. His first appointment was PT and he was doing some really good things! He walked on a balance beam (just one foot and holding both my hand and the PT's hand), he kicked a ball and was doing a fast walk. After watching him for a while, the PT said he has met his 21 month skills!!!! I am so proud of Steven! He has worked so hard at physical therapy and was downright determined to do what was asked of him!!!! I wish I had my camera at therapy today, he had a huge grin on his face at the entire appointment! The PT and I would clap every time he did something and then he'd start clapping! It was soooooo cute!!

To think of where our little guy was when he was born and how far he has come, just warms my heart and makes me thank the Lord for all he has done and will continue to do in Steven's life and allowing us to be a part of it!

I wanted to include a picture of Steven, but didn't get one yesterday. He always wants to play with the camera when I pull it out and I'm not able to get good pictures. But today, I had him in the high chair while I was frosting some muffins and gave him a spoon with a little bit of frosting on it. This is what we got:

The Past Couple of Weeks Have Been Crazy!!!!

2011-11-14T20:43:00.000-06:00

I really thought that when November hit things would slow down, but no, I've been as busy as ever. I've had a couple down days; however, for the most part I've been going, going and going!

Steven has been sick with the sinus crud for over a month. I took him to the doctor eleven days ago and she put him on an antibiotic and we've been doing allergy medicine, trying to dry up his sinuses. He got better for a couple of days and then Friday it came roaring back! We finished the antibiotic yesterday, so today we headed back to the doctor and she prescribed a second round of antibiotics. Steven is absolutely miserable. His voice is raspy and his nose keeps running, no matter how much I wipe and suction! He has not been sleeping well, so guess who else has not been sleeping well! This Momma!!!!!

Caleb's been doing fairly well. We're having minor meltdowns, but their manageable for the most part. Caleb has his last hippotherapy sessions for this 10 weeks on Wednesday. He's done really well and I'm so pleased with it. His school work though is not going as well. He is reading slower, so his comprehension is decreasing. His teacher has also started some multiplication facts with him and he came home with a sheet where the first time he did it he got all of the problems wrong. Caleb always does very well at math and loves it, so I was quite surprised, as is his teacher. But she's just going to keep working at it. He is such a puzzle and no one knows what to think. We finally heard back a couple of weeks ago that Caleb's MRI looks good, so the Geneticist is not concerned at this time about any type of neurodegenerative condition. We need to go back to the developmental pediatrician and I need to call and follow up on getting that appointment set up, as well as see if they have heard anything from our insurance about whether they'll pay from some genetics testing for Steven.

Cassidy has been a much bigger challenge lately. Tony and I are a united front, which is the most important thing, and for which I am very thankful. Just getting her to do simple things is a battle. I am very anxious for January/February to get here so we can get the comprehensive evaluation completed and the results to better know how to help her! I know we'll get there, just some days are much more draining than others!!!!

November 6 - Orphan Sunday

2011-11-05T19:42:00.000-05:00

November 6th has been designated Orphan Sunday, a day to remember all of the orphans that are in our world and pray for them.

Here are a few statistics from 147 Million Orphans:

Did you know there are hundreds of millions of children worldwide who have lost one or both parents.
Every 14 seconds an AIDS death leaves another child orphaned.
Approximately 88 million orphans live in Asia.
Approximately 45 million orphans live in Africa.
Approximately 14 million orphans live in Latin America & the Caribbean.
Approximately 1 million children live in public care in Central & Eastern Europe
More than 800,000 children pass through America’s foster care system each year.

These statistics do not even include the UNKNOWN children living orphaned both here and abroad that go uncounted, unnoticed and unloved.

James 1:27 “Pure and lasting religion in the sight of God our Father means that we must care for the orphans and widows in their troubles and refuse to let the world corrupt us.”

If you click here you can get a poster of 10 ways every Christian can care for the orphan and waiting child. If you do not want to click over there, I will list the ways below:

Pray for them.
Speak up for them.
Provide for their needs.
Support those who support them.
Protect them from harm.
Visit them where they are.
Give sacrificially to them.
Encourage them to press on.
Adopt them into your family.
Mobilize your church for them.

My church hosted a Women's event on Thursday evening. Jen Hatmaker was the speaker and she was absolutely AMAZING!!!!! I was so glad I was able to go and listen to her be real, open and honest about the work that her and her husband are doing to the least of these in Austin, Texas. They have just brought home two special children from Ethiopia. She gave a staggering statistic. If one in every seven Christians would adopt a waiting child or orphan, there would be no more waiting or orphan children in the world! Wouldn't that be absolutely AMAZING?!?!?!?!?

Could you at least commit to praying for the world's orphan and waiting children? And that God would stir in the hearts of those individuals that He is calling to adopt that desire and that they would follow that desire and welcome into their home a child who is in need of a forever earthly family!

Blog Hop - National Adoption Month

2011-11-03T13:11:00.000-05:00

I am participating in a Adoption Month Blog Hop over at Foster2Forever. Take a jump over here to read some adoption stories.

Survived the Marathon of Appointments in October!

2011-11-02T14:35:00.000-05:00

As I posted here I had a lot of doctor and therapy appointments last month. It was an INSANE month!!!! But we all survived!!!!

To top it off, my dishwasher was broke the entire month!!!! The motor was replaced in it twice, but it was finally determined that it was not repairable. We were finally able to get a brand new dishwasher through our home warranty, so seven weeks, lots of phone calls and aggravation, and $80 later ($60 service fee and $20 disposal fee to remove and discard our old dishwasher), we have a brand new dishwasher! I am so thankful for that!

I ended up having to schedule an appointment with Steven's neurologist as well this month that was totally not planned. He's been having some occasional tremors in his right arm and with his medical history we needed to get it looked at. Also, ever since he started walking he keeps his right arm either right by his side or pulled up right next to his chest and then he started walking on the toes on his right foot after we saw the tremors. So we started putting his braces back on him. At the appointment I was able to learn some more tests and things that he went through the first 10 days of his life, which was helpful. Right now the PA at the neurologist office just feels that he is very weak on his right side and we need to ramp up the physical therapy to focus specifically on strengthening his right side. She does not believe it is seizure related. We go back in two months to see if there is any change. It is possible at some in the future she may order an MRI to be done to take a closer look at his brain.

We met with the neuropsychologist with Cassidy last week. He definitely sees the need to do the extensive testing and we will be doing that in January, when he had a cancellation. He told us that he really wished he could get her in a lot sooner, but he is just that booked. I can understand that as he is very good at what he does. He's the doctor that did Caleb's evaluation almost two years ago!

We finally heard back from the genetics counselor about Caleb's MRI and SPECT scan that the geneticist was concerned about and that I blogged about previously in this post. The doctor reviewed those scans himself as well as with a radiologist. We are very pleased to hear that the scan looks good and at this time they do not believe that there is any further genetic testing or neurodegenerative testing that needs to be performed. What that does mean is that even though everyone recognizes the fact that Caleb's skills and IQ has regressed over the past few years, no one can find a cause to it. Right now it is just a mystery! We are waiting to hear back from the developmental pediatrician about following up with her.

As of right now, November is looking to be a much calmer month appointment wise, for which I am very thankful!!!!

November is National Adoption Month

2011-11-01T20:14:00.000-05:00

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Adoption is very important to me, seeing as how God built our family through the miracle of adoption times three! We're open to more, if that's where He leads!

I had hoped to be able to write much more today about adoption, but I am so tired tonight that the words just are not coming to me. So instead of typing a lot of words right now, I'm just going to post this wonderful video posted by Dave Thomas Foundation is just going to have to do. Please take a couple minutes to watch!

I plan on writing much more about adoption this month!

Sometimes It's Hard to Watch

2011-10-28T21:53:00.000-05:00

Today the kids' had their Fall parties at school today. I had planned on being there anyways, but Caleb's special ed teacher asked me the other day if I was planning on being there because the para that is usually with him had asked if she'd be able to leave a little early today. The teacher told me that she had told her it depended on what my plans were. I told her I was planning on being there, so I'd be with Caleb at the party.

I arrived at the school in plenty of time this year to get a good parking spot. (Last year I was running late due to an appointment and had to park on the street and a bus hit my van as it tired to turn into the school.)

I went back and forth between the kids' classes helping them get their costumes on and then ended up in Caleb's class for the party. The mom that planned the party had four games. As I watched Caleb try the games, my heart just broke. He just doesn't comprehend things and has so much difficulty when it comes to things like that. There were two games that involved straws - one where you had to blow through the straw and blow a plastic spider across a table and the other one where you had to suck in on the straw and carry a piece of paper from one desk to another desk and put it in a bucket (witch's cauldron). At first Caleb refused to even put the straw in his mouth for the blowing game. He would just blow with the straw out of his mouth. He eventually gave up.

The sucking game, he just could not get it. I even told him it was like he was drinking through a straw, but he didn't get it. The parent that was doing that game was really good and allowed Caleb to just pick up the paper in his hand and run it over to the cauldron. For that I was very grateful!

It's just so hard to watch your little one struggle so much with things that come so easily to other kids. Caleb can also be very competitive, so there was the potential for things going very badly, very quickly. Thank you, Lord, that it went well!

All in all, Caleb did well at the party, for which I'm glad. It really could have gone bad, especially when he couldn't have a second cookie!

Thank you, Lord, that it went well and we made it through the party without a meltdown!!!

Not Knowing

2011-10-25T07:53:00.000-05:00

I think, when you put aside the agonizing mountains of paperwork and scrutiny (background checks, classes, home studies, fingerprints) and waiting one must go through to adopt a child, the hardest and most difficult part of adoption is the fact that you truly do not know a medical history for your child. We are seeing that three times over with our children.

While we have an "open" adoption with Caleb's birthmother, we still do not truly know his biological parents' medical history. While we're pretty sure we know who his birthfather is, we do not have any medical history from him as he was not involved in the adoption process. In fact, he never responded to any communication from our attorney and the court had to terminate his paternal rights due to the lack of response.

We have called Caleb's birthmother and his maternal grandmother to try and get information, but we do not know how accurate that information is, especially in light of the fact that his birthmother has a cardiac problem that she adamantly denies is a cardiac problem.

When we saw the geneticist a week ago, he is quite concerned about Fetal Alcohol Syndrome for Caleb, even though Caleb does not have the facial features of it. However, without having concrete proof that his birthmother drank, we will never know for sure, especially since she denies alcohol or drug use.

Caleb has had every genetics test performed that is available at this time and those tests have not revealed anything to us. His geneticist is looking at some scans that were done more than a year ago and we are waiting to hear his thoughts on those. I pray for some answers for Caleb and for us and am hoping that these scans will provide some of those answers, even if that means we need to start thinking about some VERY serious things. If that is the answer that we receive, we will do what is best for Caleb and continue to probe for answers, whatever they might be. If the doctor does not see anything that concerns him, we will just continue to do what we can to help Caleb, as we have been doing. We know that whatever the answers are, God will be with us and continue to give us the strength to make it through each and every day as He has been.

Now, Cassidy! We are taking her to the same neuropsychologist that Caleb saw almost two years ago to see if we can get some better answers on how to help best her. I pray that we get some good results from this testing! We also have very limited information from Cassidy's birthmother and nothing from her birthfather. Because of the nature of Cassidy's adoption through the state, it is "closed" until she reaches 18 and she decides she wants information.

Knowing the reason she was taken into state custody and things that her birthparents were involved in, I pray that our nurturing of her and God's grace will be enough to squash out what has the potential to be there from genetic nature.

Steven's adoption is the same as Cassidy. We have very limited information from his birthmother and nothing from his birthfather. Thankfully, Steven's developmental pediatrician is going to see about having some genetics testing done to see if it will give us any insight, but we know that nothing is 100%.

So we will continue to plug along each and every day with the beautiful children that God has blessed us with and do our best with the limited knowledge that we have! Some days though I do wish we had a crystal ball to know exactly what was going on with our kiddos!

Geneticist Appointment

2011-10-17T14:03:00.000-05:00

After receiving the Childhood Disintegrative Disorder diagnosis for Caleb in January of 2010, we were encouraged to investigate a "medical" cause to his regression. After going home from that appointment with the 15 page Neuropsych evaluation, I forwarded it to Caleb's pediatrician. She reviewed the genetics tests that Caleb's neurologist had already had done when he was in the hospital the previous October and called and talked to the developmental pediatrician in town. She wanted to see us and talk about where to go next. After waiting for four months (which is a VERY short wait to get in to see this doctor!), she ordered some more tests. When those tests came back normal, we were then referred to a genetics counselor and had a consult with a Geneticist via video conference, which happened November of 2010. After that appointment he ordered some tests, including a skeleton scan. Once those tests were done and came back all normal, more tests were ordered, which we did.

Well, today we went back to talk to the Geneticist by video conference. We talked again about Caleb's biological parents and the limited amount of information that we have. We were once again, just like we have been asked by every single professional that we have seen, as to whether or not we knew of any alcohol or drug abuse by Caleb's birthmother. We told him what we had been told, "No." However, he doesn't believe that to be true. He is concerned about Fetal Alcohol Syndrome. He said even though Caleb does not have the facial effects of Fetal Alcohol, Caleb's behavior seems to indicate that. That doesn't completely explain all of the regression that Caleb has experienced; however, it could explain part of it.

We then talked about the MRI that Caleb had in August of 2010. This MRI was after a SPECT scan that he had performed a couple of weeks prior to the MRI. The results of that SPECT scan, from what we were told, showed possible hydrocephalus and that a MRI was needed to confirm. However, we learned today that the SPECT scan showed atrophy and hydrocephalus. We were told that the MRI was normal. Dr. Shaeffer wants to review the films from the MRI himself because he said it's very illogical to have a SPECT scan and a MRI be so different. The genetics counselor will be getting those scans and sending them to him for review. He hopes that she will be able to get them to him by the end of this week, so that we would have some sort of answers by the middle of next week.

The doctor told us that depending on what he sees on these scans will determine whether or not we need to dig any deeper medically to figure out a cause. If he sees something that concerns him on these scans, we will then need to discuss digging further into possible neurodegenerative diseases. If he doesn't see anything, it may be that no one will be able to tell us exactly what is causing Caleb's regression in skills. We were told in January of 2010 that that may be the case, but I was hoping and praying (and still am hoping and praying) we could find something to help Caleb!

No matter what the end results are, Tony and I know that God is in control and that He chose us to be Caleb's parents. I am very thankful to be Caleb's mom. I will fight and advocate for him as long as necessary!

Developmental Pediatrician Appointment

2011-10-12T18:20:00.000-05:00

So last Thursday I took Steven to his developmental pediatrician appointment. We're always there about two hours and this appointment was no exception. First we met with a PT from the hospital that does some OT/PT evals for the doctor before we see her. Then we waited for her to come in.

The doctor came in and saw Steven walking around. She was THRILLED! We discussed what he was doing, what he wasn't doing, the fact that the adoption is final and that we started weekly speech therapy at the hospital since we have not had consistent speech services with our early childhood provider for about 30 minutes. I gave her a copy of the speech evaluation so that she would have that as well. Since we do not have a lot of information regarding Steven's birthparents, she's going to request pre-authorization from our insurance to do some genetics testing, hoping that it might provide us some insight into things that could potentially come up in the future regarding Steven. (Our insurance is absolutely going to love us! NOT!!!!!! Especially seeing as how they have gotten a bill for almost $10,000 in genetics testing for Caleb and that was just one round of two that Caleb has gone through this year!)

She then did the physical exam and didn't feel the high muscle tone that she has felt in the past. So once again she is not ready to give a cerebral palsy diagnosis for him. She did tell me that it does not mean that it might not be a possibility in the future if things should change.

All in all, I left there feeling very good about the progress that Steven has made in the last six months since we saw her last. We can continue doing what we're doing to help him and don't have to return to her for 9 months (or until we get notice that they insurance is going to approve the testing and we have to go into the office for blood work!

So Thankful for the Medical Professionals in Our Life

2011-10-06T13:43:00.000-05:00

This morning I had to take Steven to see his developmental pediatrician for a follow-up appointment. I came away from that appointment this morning so thankful to God for the professionals that he has put in our lives.

You see, when your children have as many medical professionals handling their medical needs as our children do, there can be some not so nice doctors. We've had a couple - two in particular come to mind (but I won't name names!!!)! But for the most part, we have been very, VERY fortunate to have some wonderful doctors and therapists in our corner that have not made us feel like we are the problem and they want to do everything in their power to help and guide us along the way. And that I can only attribute to God's grace He has showered upon our family! Having a team of doctors that work with you makes things go so much more smoothly for all involved. Yes, I may have to wait in the doctor's office for appointments, even after our scheduled appointment time, but I know that with all of our doctors, I will be given the same time and attention as other patients and their families.

Thank you, Lord, for providing the knowledge and the training to the professionals in our lives! We are so blessed!

October is Sensory Awareness Month

2011-10-01T14:24:00.001-05:00

We first learned of Sensory Processing Disorder (or Sensory Integration Disorder) back when Caleb was four and he was evaluated by an occupational therapist and given that diagnosis. Once we learned more about it, the more it made sense.

At the age of 2 Caleb was very light sensitive, he did not like baths, especially getting his hair washed, getting his hands dirty, the noise of the vacuum cleaner, the hair dryer, getting his nails clipped, getting his hair cut. He would also fall hard on the floor and run into walls constantly.

Now, that we understand what sensory processing disorder is, I knew exactly what was going on with Steven when he started banging his head on the floor or on his crib, banging his legs on the floor, the time that he gave himself a rug burn from the carpet and didn't even cry, and not to forget his oral texture aversion issues!

When Caleb was first demonstrating issues, the biggest issues was his sensitivity to sunlight. We took him to the eye doctor and she could not even look in his eyes because he screamed so badly that she didn't want to traumatize him. We were referred to a pediatric eye specialist, because we were told that he would sedate Caleb for the exam. WRONG!!!! It was the first time (and not the last) doctor's appointment that I left in tears.

This doctor did not have a sensitive side to him at all and he refused to sedate Caleb for an exam. It took three of us to hold Caleb down and someone had to hold his eyes open. Caleb screamed the entire time. When I explained Caleb's diagnosis, I really think that he thought I was making things up!

Fortunately, there was nothing wrong with Caleb's eyes, it was just the sensory issues; however, that's very difficult sometimes to handle. We tried sunglasses and hats, all to no avail. Thankfully that sensitivity has diminished greatly. However, there are numerous things that are still there and we are continuing to work on them, especially during his hippotherapy sessions!

Here is some great articles on exactly what Sensory Processing Disorder is. If you have any concern about your child, please, please, PLEASE have a consult with an occupational therapist!!! It can really help you and your child!

What is SPD?

The 8 Senses

Red Flags of Sensory Processing Disorder

Go to SPD Blogger Network to find much more information from parents about SPD.

And you can go to Sensory Processing Disorder Foundation for much more information!

Looking Ahead to October

2011-09-30T15:59:00.000-05:00

As I sit here I keep thinking about how busy my October is going to be. Both Caleb and Cassidy have psychiatrist appointments, Caleb has hippotherapy every Wednesday and an appointment with the geneticist, Steven has speech therapy every Wednesday, one appointment with the physical therapist to discuss what the developmental pediatrician says and see how he's doing, an appointment with the developmental pediatrician and an evaluation for hippotherapy, Cassidy has therapy and a nueropsych appointment, I have therapy and a physical appointment. Oh, it's going to be a very busy month!

Steven's appointment with the developmental pediatrician is a big appointment. We will learn at that appointment as to whether or not she is still concerned about cerebral palsy. Steven turns 20 months old today. He has finally started walking, but he is still not talking, which is why we have started weekly speech therapy. Anything and everything we can do to help him! I am not at all worried about him getting the cerebral palsy diagnosis. However, if he does get it, I want to move forward with getting him on the necessary waiting list for future services, which we obviously will do as soon as possible.

The other big appointment is Caleb's geneticist appointment. Since our first appointment last November, Caleb has had numerous tests (I don't even truly know how many actual tests that there were or even what they all were). From our understanding all of these tests have come back negative. While that's a VERY good thing, there's also still something that is causing the fact that Caleb's IQ has dropped so dramatically and the fact that he has lost skills and is very much a 2 year old in a 9 year old, 80 pound body! I really want some answers, but am concerned about what it's going to take to get those answers (or even if there's a possibility to get answers!)

To top it off my dishwasher still is not fixed. I feel very spoiled and want to jump up and down demanding my dishwasher be fixed. I am very grateful that I have food to be able to eat and feed my family, so that I actually have dishes to do! (But I do want my dishwasher!) I found out today that our warranty company is actually trying to figure out whether it is more cost-effective to repair our dishwasher or whether they're going to replace it. I'm actually crossing my fingers for a new one! The motor is locked up and the repair place told me that the part is well over $200 and that doesn't include labor. So hopefully I will find out soon what the decision is!

Is is November yet?

Hippotherapy

2011-09-25T21:43:00.000-05:00

Two weeks ago Caleb started his second 10 week session of hippotherapy. It's amazing how different he is on the horse. The first week he had a very difficult time focusing on the tasks that his OT was asking him to. However, once he got on the horse and got going he was focused, focused, FOCUSED! It continues to amaze me the difference an animal can make in a person's life!

Here are a few pictures from week 1.

Greeting Luke!

Ms. Kori is reminding Caleb that he cannot squeeze Luke with his legs or Luke will be confused.

Time to get on.

Getting on by himself.

It's amazing the difference in Caleb. Last March when Caleb started, he would not get on the horse without help. Then when he was actually on the horse he would scream, "I'm going to die." The difference is AMAZING!!!!

Getting situated in the middle.

"Walk on, Luke."

Two of the three amazing volunteers that it takes to run each hippotherapy session along with the therapist.

Zach and his sister Anna (not pictured) were two of the volunteers that worked with Caleb last spring and over the summer as well.

I hoped to get more pictures, but Steven got fussy and wanted to be held. I am so thankful for this program! We are hoping Steven will be able to do this in March as well.