The Williams Family Times

Buddy Walk 2012 Team Natalie's Ninjas 'Ignite a New Way of Thinking'

2012-08-04T10:46:00.001-07:00

Update: For Buddy Walk 2016, we have created a new website! Visit https://NataliesNinjas.com to see our fundraising page.

Eighteen months ago, God surprised us with our third pregnancy. We already had two children and though, at one time I had wanted a third, I was content. God wasn’t done with us yet.
Fast forward 7 months and the doctor discovered I had a lot more amniotic fluid than I should. Natalie had a blockage of her intestine that was not allowing her to process all the amniotic fluid. They said it was a soft marker for Down Syndrome. I remember coming home and sobbing the news to my parents who happened to be visiting. I pushed it to the back of my mind thinking everything would be fine. The doctor decided to prepare for her coming early in the event that the excess fluid caused me difficulty breathing. On New Year’s Eve and New Year’s Day, I got a steroid shot to prepare her lungs. Three weeks later, I mentioned to the doctor that I was having a little trouble breathing while laying down and they decided the next day would be Natalie’s birthday.
Natalie arrived on January 18^th. Since it was a c-section, I was unaware of what went on in the operating room but David knew as soon as he saw her that she did have Downs. I only got to glance at her before they took her to the NICU. I saw her that night after some recovery time but was still hopeful that she did not have Down Syndrome. The next day, when David was home with the big kids, the geneticist came to tell me that, though the tests were not back yet, she was pretty sure that Natalie had Down Syndrome. I still hoped for a miracle. “She didn’t even have the test back yet, how could she say such a thing?” I thought. Though it was not the miracle I hoped for, God still gave me one in our Natalie Grace just exactly how she is.
At 3 days old, she had surgery to connect her stomach and intestines and then she stayed in the NICU 25 more long days to learn to eat. I decided to sing “I Stand Amazed in the Presence” to her when I visited so she would start recognizing my voice. We were amazed with how many people were there to help us. We had meals coming to the house, people shuttling me to and from the hospital, people picking up the kids from school, friends babysitting the kids so David and I could go to the hospital together, gracious teachers loving our Zach and Julia when I had so little left to give them. Life seemed a blur for the first few weeks. As much as I panicked when I sat at home worrying about her future, as soon as I was with her again, the peace of just loving my new baby was with me.
Now, 18 months later, I’ve learned more about Down Syndrome than I ever wanted to and I still have a long way to go. Natalie was the first person with Down Syndrome that I had ever met. I tell people that being so blind to disabilities made Natalie’s diagnosis a lot scarier for me than it had to be. I think this is a reason why the Buddy Walk is so important. Sure, it’s a fundraiser for the national and local down syndrome association. Since Down Syndrome receives a very small percentage of federal research dollars, the fundraising IS very important. In addition to fundraising, however, the Buddy Walk is also meant to “ignite a new way of thinking about people who have Down syndrome. Over the past decade, the Buddy Walk has served as a national portal for disseminating positive messages and inspirational stories within the Down syndrome community to the general public.” (from Buddy Walk website). I feel one of the best ways I can help my sweet girl is to let people get to know her as a person, not as a ‘Down’s kid.’ I once read that one of the worst things for a child with Down Syndrome is for parents to have low expectations. We should treat her no different than our other kids. She WILL do almost all the same things they do but IN HER OWN TIME. I’ve come to realize that, though it might take her longer to reach typical milestones, I appreciate all the small steps that she takes so much more.
For all our children, I pray that they would become what their names mean. Natalie Grace means ‘birth of blessings, favor, and elegance.’ I pray for Natalie that her presence in the lives of others would be a great blessing. Even in such a short time, we can already see God answering that prayer. Thank you to all our friends and family that are so supportive of Natalie!

Our Charlotte Buddy Walk is October 6^th, 2012 in Freedom Park. If you’d like to support Natalie and others with Down Syndrome, come walk with us on Team Natalie's Ninjas! Please see our team page web page to join or contribute.
If you are not close enough to make it to the Charlotte Walk, there are Buddy Walks all over. Here is a list of Buddy Walks in the United States.

A Collection of our favorite Photos from Natalie’s 1st 18 months

Meeting Milestones

2012-08-04T10:36:00.001-07:00

Natalie’s been surprising us so much lately. I can hardly believe all she’s started doing in the past few weeks. She’s really on the move! We had our 18 month IFSP review this week and it was so fun to be able to check off some outcomes.

So, here’s her current status:

She turned 18 months old! We decided to do a cake smash shoot since she wasn’t that interested at a year and I had seen some cute photography ideas since her birthday. It was lots of fun even if Julia did think we were ‘wasting’ all the cupcakes!

A few days after, I got pretty concerned that she might not be able to stay in a room with her peers when she goes to preschool this fall. She was still not feeding herself at all. She had really started eating lots of variety of foods with no problems as long as I put it in her mouth. She just would not do it on her own. So, I got out the book Fine motor skills for Children with Down Syndrome and tried some ideas for ‘helping your child develop sensory awareness and discrimination skills in her hands.” They suggested playing in things like playdough, touchabubbles , sand and doing hand massages. So, we first got out the playdough. The big kids were creating things on the kitchen table and I handed Natalie a big ball of blue playdough while she was sitting on the floor. I turned from her to the big kids and then looked back and it was in her mouth! I did not expect that as she hardly ever puts things in her mouth. I grabbed one of her straw cups with handles that she’s been able to drink smoothie from and put water in it, holding it for her. She wasn’t very interested but at least she got her mouth rinsed out. I left it on the floor. Later on that day, she was in the kitchen again. She picked up the cup and drank from it! So amazing! God again confirmed to us that she CAN do the things that Zach and Julia did but n her own time. She also has been able to drink from her own bottle using the Ba Baby Bottle holder. We lay her on the floor to drink, though, because she hasn’t been able to hold the bottle up in the air yet.

A few days later she amazed us again by picking up a veggie stick and eating it! We had been trying a lot of small things like puffs. When I put them on the tray she would push them all around quickly and then onto the floor. I read that if her pincher grasp was not developed, long skinny food might be easier to start with. It worked!

Gross motor skills are coming along too. Our PT suggested that Natalie might benefit from SMO’s (Supra-Malleolar Orthosis). Natalie’s low muscle tone was causing her ankles to bend in a little while standing. The SMO’s will help the bone to grown correctly. She has to wear them 4-5 hours a day but they are small enough that they only stick up above her shoe a little. We tried some of the shoes that are designed to fit the SMO but they were so bulky, Natalie stopped crawling. Our PT figured out some of Natalie’s own shoes would work so now Natalie’s much happier with the SMO’s. Even without the help the SMO’s give her, though, Natalie is really cruising on furniture a lot. We’ve been teaching her to climb on the couch to help strengthen her arms and to ‘turn around and slide down.’ She thinks accomplishing the climb to the top of the c

Natalie gets on the Couch.

ouch is hysterical and laughs through the whole process! Her crawling is now a combination of army and traditional hands and knees. Army is still faster, though, so when she sees that Zach and Julia’s ‘forbidden’ room door is open, army still is her first choice. She wants to get in that room!

With speech, we are starting to move out of just feeding help and into some language skills. I made a family flash card book and she seems to be able to pick out Zach and Julia with her eyes when asked. Going to keep working with flash cards of come first words. Repetition has always helped her learn so we try to do it every day.

I also started the growth component of Nutrivene after her 18 month checkup. We really feel the daily supplement and digestive enzyme have been helping a lot. I just can’t seem to remember to do the growth formula since it has to be before bed and 1 hour after eating protein. She’s still making it on the normal growth chart but on the low side. We are hoping the ‘grow juice’ will help her with sleeping, short term memory (comes with more efficient REM sleep) as well as growth. That’s the idea, anyway, so we’ll see. Along with her pediatrician visit for 18 months, we also saw the eye doctor. Her eyes have most likely gotten worse in the last 6 months but she fought the doctor pretty hard so we can’t be sure. He thought we’d check it again in 6 months but that she will probably need glasses sometime around 2.

Helmet Graduation

2012-08-04T10:11:00.001-07:00

Ok, this is EXTREMELY late but that seems to be my favorite phrase anymore. As most of you may know, Natalie graduated from her cranial band on June 4^th. She wore it for a total of 28 weeks! Because we started a little older with her and because of Down Syndrome, her growth was a little slower and she needed to wear it quite a bit longer than average. The last 5 weeks, she wore it only at bed time which was perfect timing for the beginning of our sweaty summer! Her last appointment showed very little growth and though she could have still improved in her anterior numbers, her overall shape was within normal ranges so she was deemed a graduate.

Here’s her final scan.

Thank you SO MUCH to Alexandra’s P.H.A.T.E. and Blake Norquist at Orthomerica for providing Natalie with the helmet.

Amy

6 More Weeks of Helmet

2012-03-19T07:26:00.001-07:00

As Natalie is starting the 18th week of wearing her star band, I’m a little disappointed to be told today at our appointment that she will be wearing it for at least 6 more. It’s not unexpected, though. She’s growing very slowly now but not without progress in the star band so we’ll keep doing it. Several of her numbers at today’s checkup were within normal limits but her anterior symmetry(front of the face) number could still come up a little more.

I usually see the cross section of the head that just shows the shape in general so didn’t realize that her ears were pretty far off from symmetrical. This scan shows where her ears were on day 1 in red and where they are today in blue. Pretty cool to see the progress over the last 4 1/2 months.

For those that are interested, here’s the section I usually come home with. It shows Day 1 in red and today in blue.

And here’s a nice round baby head shot! Keep on growing, Natalie!

Happy Late First Birthday, Natalie!

2012-01-29T19:39:00.001-08:00

Last summer, we were surprised with the plus sign on a pregnancy test. My first thought was, “Oh, it’s Natalie Grace.” Strange thing to say since we weren’t thinking of having any more children and, to be honest, it was a bit of a shock. I had had a dream about her not too long before. My dreams are often a little strange, though, so I didn’t really take it as a message that we were going to be blessed with another child. But, blessed we have been. It has been a crazy year but she has already changed our family. Our eyes have been opened to disabilities around us, showing me Down’s Syndrome is not something to fear. Yes, I know she’s behind other children her age, but it doesn’t make me love her any less. She’s doing exactly what God planned for her to be doing in the time he set aside. And, because she does things differently than what is ‘normal,’ we treasure those milestones all the more.

In one year, Natalie has gone from a fragile, quiet, preemie that couldn’t hold her head up to a plump baby whose eyes sparkle when someone is smiling at her and whose voice can hardly be contained when she sees dinner! I find myself grinning at her throughout the day just to see that face light up. Zach has discovered the easiest way to make her laugh is to burp many times in a row. I’m embarrassed to say that I’ve called upon his services when she’s bumped her head sometimes to calm her down quickly! He has also told me he often prays for Natalie with his class even a year later. Our sweet Julia has recently started helping out with reading the 10 books a day. It’s just so amazing to see both my girls sitting on the floor together reading a book!

There are still plenty of unknowns for Natalie’s future but there is also peace that she is right where she needs to be. Thank you to everyone who has shown Natalie so much love in this first year of her life. We are so blessed to have family and friends who have loved her and us without question!

Amy

Time Flies- 11 months old!

2011-12-18T14:36:00.001-08:00

Wow, time has really gotten away from me these past few weeks. It got me thinking that time with Natalie is a unique gift. Most parents will say that kids grow up so fast. The first year is especially quick as they change from a small sleeping-all-the-time infant to a jabbering-into-everything toddler. Because Natalie’s low muscle tone has caused her gross motor development to lag behind, it’s hard for me to think of her as almost being a year old. It’s as if her delayed development forces me to pay attention more and definitely causes us to celebrate small victories that might have been missed for a typically developing 3rd child. Time for her goes a little slower and therefore allows us to enjoy her as a baby longer.

Here’s what’s been going on with us. The day before our first check up for her star band progress, David had a car accident. The car was not totaled but it was not drivable for 2 1/2 weeks while being repaired. I had to postpone our first star band appointment to get some errands taken care of for the car. We went the next week and Christina said she could already tell the cranial band was helping. We won’t get Natalie scanned until the next appointment, though. Tomorrow starts her 5th week of wearing the star band. Natalie has completely adjusted with only some small redness and extreme smelliness when we take it off of her for the one hour a day. We had a stomach bug go through the house last week so she had to take a small break from wearing it but we are all back to normal now.

I did end up painting the helmet again so got some pictures of the original pattern. This second time seems to be working better, though, with very few scrapes in the paint job. I used a spray primer and then the pink spray paint the first day. The second day, I brush painted on a varnish. The third day, I painted the butterflies and another coat of varnish. I’m still having some trouble at the strap with paint peeling but, for the most part, it’s staying on this time. I just love seeing her little pink helmet head to match her smiling pink cheeks!

The big kids are out of school for Christmas vacation and anxiously counting down to Christmas. I think they tell us several times daily how many more days are left. David and I will both be working this week so it’ll be a challenge to find ways to entertain them before the big day. I’m hoping to get some Christmas cookie decorating in and then of course visits from two of their out of town aunts will help.

Below is an impromtu shoot in front of our Jesse tree. We add a new ornament every night to show how the old testament stories pointed to the coming of Jesus. So far we have a globe, apple, rainbow, sky full of stars, ram, jacob’s ladder, coat of many colors, burning bush, trumpet for Jericho. We seem to keep falling behind so will probably end up skipping a few to get to the end.

Star Band Week One

2011-11-16T20:09:00.001-08:00

Natalie started wearing her star band on November 15th! My first try at putting it on her made her cry but I’ve gotten better as we’ve gone along and we’ve had no tears since. She’s been handling the change pretty well. We started with one hour on, one hour off and today two hours on, one off. The first day, she cried a little bit when she was on her back with the helmet on. Today, she fell asleep on the floor while playing with it on. Tomorrow she’ll wear it 4 hours on, 1 hour off and during naps and night time sleep. Feels like a big jump but I think she’s already getting used to it so hopefully it won’t disturb her sleep.

Putting on Natalie’s Helmet

She’s also rolling all over the room now. She just started rolling last week so I was a little worried the extra weight of the helmet would slow her progress. It doesn’t seem to be bothering her a bit. The pink helmet is easier for me to see pop up off the floor from the other side of the room so now I’m actually catching her rolling more often!

I couldn’t resist painting the helmet so we had a wild day once we got the star band. I needed to get it painted and dry as fast as I could. I like the way it turned out but am not sure if the paint will stick the whole time she has to wear it. So far so good. I taped it all up and spray painted the whole outside with a pink paint that said would stick to ‘most’ plastics. Then I used acrylic paint for the butterflies and flowers and finished up with varnish to hopefully keep it from chipping. We’ll see how it goes.

So, we’ve officially started the process. In two weeks, we have an appointment in two weeks to check on her progress. Though I’ll miss seeing that little head of hair, I think the cheeks make up for it!

Amy

Scan Day

2011-11-02T11:54:00.001-07:00

We just got back from Natalie’s new scan for her cranial remolding helmet. It was very quick. We’ll go back in a week and a half to get the star band fitted and she’ll be wearing it from then on. I did ask if it would hinder her progress with physical therapy. It might take some getting used to but since it weighs only weighs 1 1/2 oz hopefully it won’t bother her that much

Natalie in the waiting room before and this after missing her morning nap!The back of her head on 11/2.

Laying in the scanner.

Natalie with Julia after the scan. We picked the band with ‘sweet hearts’ instead of camouflage and soccer balls so Zach was not willing to be photographed!

The Helmet Journey Starts Tomorrow!

2011-11-01T19:16:00.001-07:00

I am writing now as an amazed and stunned woman. Some of you know this story but I’m starting from the beginning for any who might be reading from links at Alexandra’s P.H.A.T.E. What I find so cool about this story is that we really thought it wasn’t possible at all but God had different things in mind for us.

Last Monday, I took Natalie to Level 4 Orthotics to discuss whether she needed a cranial remolding helmet or not. We’ve been noticing a flat spot for awhile but had hoped it would get better with her learning to sit up more. Since she is not sitting up yet at 9 months due to some delay in gross motor skills from Down’s Syndrome, it seemed to David and I that the flat spot was getting worse. Natalie has also loved to look right from the day she was born. Our physical therapist is always checking to see if she has torticollis and it seems Natalie just likes that side better. After being scanned, I was told that her head shape was a Level 3 out of 5 in terms of severity. Below is an image of her head shape currently. When we started talking about cost, it became clear that it was not something we could afford. Our insurance has a very high deductible so we would have to pay 100% of the cost. Natalie needs physical therapy right now to help with her low muscle tone that comes with Down’s syndrome so that had to be our top priority in terms of finances.

I decided to look for help on the internet. I happened to post on Facebook about it and my sister-in-law suggested looking for a used helmet. Not sure that it was even possible, I started searching anyway. I found a group called Alexandra's P.H.A.T.E., a group that, through a partnership with Orthomerica, is able to provide 12 helmets a year. I e-mailed Gary Tate Natalie’s information. One week later, I received a call from Level 4 saying that through Blake Norquist, Orthomerica had agreed to provide Natalie with a star band. We are so thankful and stunned at how quickly this all was orchestrated! We have an appointment tomorrow to have her scanned again since babies head shape grows so fast. Can’t wait to take lots of pictures of the process!

Amy

Walk for Natalie

2011-09-20T06:14:00.001-07:00

Update: To keep Google from being confused, we are removing references to last years fundraiser and team name. Please view the 2012 blog entry (http://bit.ly/Mis8tF) and the 2012 team page (http://bit.ly/MirYSZ)

We just decided to start a ‘team’ for the 2011 [fundraiser] in Freedom Park, albeit a little late in the game. Lots of people came up with cute names so I had to go with the alliteration route too. We decided to go with Natalie's [N---]. We are still new at figuring things out but thought this would be a great way to meet some other families and help raise a little money for Down’s Syndrome. If you are in Charlotte and would like to walk with us, we’d be glad to have you on our team. The walk is October 1st in Freedom Park. There will be kid-friendly events starting at 2. The walk starts at 4:30 and there is a hot dog supper at 5:30.
From the [fundraiser] website: ‘The goal of the Buddy Walk is to promote acceptance and inclusion of people with Down syndrome. Your support will help all people and families living with Down syndrome to enjoy a more successful future.’ More information on the walk can be found HERE.
Here’s a link to our fundraising page if you’d like to donate: [Natalie's N---]
Thanks for all the love and support we have received with Natalie. Though we have a long way to go, I can definitely say things are so much brighter today than 8 months ago.
Amy

Good news- the Prunes worked!

2011-09-08T06:08:00.001-07:00

Bad news is the prunes worked…

After about one month of minor skirmishes in Natalie’s ongoing battle of constipation, we were back at war this past week. She started spoon feeding one month ago and was fine for the first 3 weeks. Everyone told me the constipation would get much worse when she added other foods into her diet and it eventually did. Thankfully, it has not yet been as bad as a few months ago but we did have a time this weekend that she started screaming when drinking her bottle that reminded me a little of her worst bouts. So, naturally, I’ve been trying to solve it quick. I’ve been feeding her prunes for breakfast for almost a week now. In the beginning, she was actually smacking her lips while eating them. Now, she’s screwing up her face a bit. Today, I was at school for a meeting about Zach’s first grade year. The meeting was over and I could have stayed for lunch with him when I noticed Natalie had exploded. Zach was disappointed but I had to bolt and get her cleaned up. Later, after I had picked up Julia, I realized it happened again. That turned out to be it but I was on eggshells all day thinking I had created a monster! We are getting an appointment with a gastroenterologist hopefully in the next week or so. I feel like I’m exhausting all possibilities.

In other news, we had a speech evaluation last week. Natalie came out as in her age group and in some cases ahead! Her spoon feeding as really improved and the tongue thrusting is almost gone. I can hardly tell any difference in her learning to eat from her brother and sister. Her physical therapist also did an evaluation just to see how her development is rating. She is now officially behind normally developing children. We are still working on rolling and she seems to be a ways off from sitting up. I’m trying to be very rigid about scheduling time to work with her every day in hopes that it will help. We know have a Zach, Julia, and Natalie homework time to every day!

I also have officially ordered my first T21 supplement. It’s in the mail so hopefully I’ll have something to report on it the next time I get around to blogging. I’m trying very hard to work only when the big kids are in school so if I get behind, I have to make it up at night. Which means, blog gets put on the back burner. Except when I have appointments, its been getting better so, hopefully, one day I’ll be organized again and have time for extra activities!

Amy

Ahhhh-va-cahh-do!

2011-08-08T08:39:00.001-07:00

We started baby food today! So, what do you say to get a baby to open her mouth? Since we are starting with mashed avacado, Ahhh-va-cahh-do, naturally! Natalie thought it was pretty funny so not only did she do a fantastic job keeping the food in, she got a chuckle out my sound effects as well! They told us early on that she would probably be difficult to spoon feed because of the typical T21 (my new name for Down’s- sounds more positive to me) low muscle tone and strong tongue thrust reflex. Don’t know if it’ll continue but today she did great. Hardly thrust her tongue out at all and seemed genuinely pleased to be eating from a spoon. I had thought of waiting until next week at the earliest since she’ll be 6 months corrected then but she’s started waking up earlier and earlier. At first, I was thinking it was the T21 sleep problems starting. Last week, the naturopathic doctor told me that the oxidative stress that the extra chromosome causes can disrupt sleep. Today, though, I remembered that waking up early can be a sign of readiness for table food so I jumped in with it. Hopefully, it will help.

It’s been awhile since I’ve written. I had spent a lot of the early summer months preparing questions for our 6 month geneticist visit. The visit was extremely disappointing and I’ve been pretty depressed about it for the last few weeks. As David says, it comes in waves. Well, I’ve been in a flood here for awhile, I think. The geneticist doesn’t really support any nutritional intervention because there are not enough studies on it. The genetic counselor was basically offended that I even suggest such a thing. So, after that I scheduled an appointment with a naturopathic doctor to see if he could help. That one wasn’t so encouraging either. He didn’t want to do anything until she is a year or older. I thought that since the first year of brain development is so important sooner would be better. Of course, the naturopathic doctor is not on our insurance so I’m just sick that I wasted money that I could have used on something else that would of actually help her. Urggh!

Some good news. The flax seed oil is working! Natalie has been able to poop about every other day for a few weeks now. Once I use up the pills I’m taking for her, I think I’ll go ahead and buy the oil to put straight into her milk. We see her atresia surgeon this week and, I’m praying with her improvement in being able to go, that Hirschsprung’s is now out of the picture. I also posted on facebook that she seems to have passed her hearing test from last week. The ear that failed before passed completely. They still want us to keep watching her, though, and possibly do tests in the sound booth when she’s old enough. Unfortunately, if she can hear, she will lose her speech therapist. Our current speech therapist comes with the Early Intervention for the deaf. She said she will transition to another therapist for us. The closest speech therapist on our insurance is in Durham so not sure what we are going to do yet.

Working on sitting up with her physical therapist. She’s getting stronger every day. Lately, the improvements have been slower but she’s not regressed any. at least. She’s sitting beside me now as I type bouncing her infant seat so hard, I think she’s trying to fly! Also, she’s saying ma-ma a lot. Julia thinks it’s because Natalie loves me but I’m thinking it sounds more like “why don’t you come pick me up?".

Amy

Videos of Recent Development

2011-08-05T06:32:00.001-07:00

6 months old

2011-07-19T19:49:00.001-07:00

Half a year already? Hard to believe. What a huge difference life is now from when Natalie first arrived in January. She has such a personality already. I love to make her smile enough to see her tiny dimple. We did an exercise in ‘what do I love about my brother or sister’ a few weeks ago mostly to help Zach and Julia. Zach said right away he loved how Natalie was so happy all the time. Course, when they were watching her shots get fired in yesterday, he knew to hold his ears in preparation for the “I’m in pain cry.”

Saw the pediatrician on Monday and will see the geneticist tomorrow. I came armed with all my research with my main goals being some sort of help for Natalie’s constipation and clearance for her to take Nutrivene-D. For the constipation issue, the doctor doesn’t’ think it has a connection to dairy products because it would be more of the diarrhea variety rather than constipation. I’m stilling limiting dairy just in case but not being so strict. The doctor gave me a dosage for Miralax and said to try Prune juice daily for awhile. I mentioned that gotten a checklist from the National Down Syndrome Society for things to check in the first year. It mentioned screening for Hirschsprung disease. I thought it would have been discovered at birth but the doctor said no and Natalie’s problems would fit that. It’s when nerves don’t form at the end of the rectum making it difficult to feel when to go to the bathroom. The surgeon would remove the portion of the intestines without nerves and sew it back together. It requires a biopsy to tell for sure. I’m supposed to ask the geneticist if that’s really something they need to check for tomorrow and then have her stomach surgeon do the biopsy. The pediatrician said if she does improve using the Miralax and prune juice, it’s a good sign she doesn’t have Hirschsprung disease. I gave her Miralax when we got home yesterday and she went in about 10 minutes so I’m hopeful. I’m also continuing to take flaxseed oil in hopes that it will help her as well.

For the Nutritional Intervention, I explained I’d read that the extra chromosome causes and overabundance of the SOD gene. Too much SOD causes there to be too much hydrogen peroxide in the body, which, in turn, damages cells (just like it damages bacteria cells when you pour some on a cut). The most susceptible to H₂O₂ damage seem to be brain cells. At first, the doctor was hesitant but when I showed her the research and the ingredients, she said she didn’t see anything in it that would hurt Natalie. The doctor did suggest I bring it up with the geneticist too.

As for normal baby stuff, she grew a lot from her 4 month checkup. She’s now 14 lbs 4 oz (20% on the normal development chart!) and 24 3/4” (20% on the normal development chart). I’ve been told it’s good to even make the chart so 20% is great. So, looks like her thyroid is functioning since she’s growing well. The doctor said the smiling and alertness is a good sign the thyroid is fine too. We are supposed to get it tested at 6 months so will probably do that at the geneticist office Wednesday. Low thyroid during developmental years can lead to mental retardation and since Down’s kids can often have low thyroid, it’s very important to keep a close eye on it. Oh, yeah- and she can grab her toes now! :)

Starting Nutritional Research

2011-07-14T19:41:00.001-07:00

So, I’m gathering lots of information lately on nutritional supplements. Natalie has her 6 month checkups with the pediatrician and the geneticist next week so I’m hoping to ask a lot of questions. I found a group called the Trisomy 21 Research Foundation that recommend the following supplements for Trisomy 21 patients:

1.NutriVene-D: to deal with the metabolic errors that occur in Down syndrome and does help decrease the incidence of infection and improve growth; secondarily, it helps improve muscle tone and the level of alertness
2. Vitamin D

3. DHA/EPA: Low DHA levels are associated with behavior problems in children. Specific behavioral (Attention Deficit Hyperactivity Disorder or ADHD) and learning problems have been shown to correlate significantly with low DHA levels. DHA is correlated with improved mental and visual function in infants. Studies show that children who were breast-fed perform better on cognitive function tests later in life (by 5-9 IQ points) than those who were formula-fed

4. Ginkgo Biloba – to combat the overabundance of GABA, the neurotransmitter that tells the brain to stop

5. Longvida Circumin: containing the natural antioxidant curcumin ; Longvida may significantly support cognition, memory, and general health
6. Probiotics- I’m assuming for Digestion- still researching

7. Piracetam (by prescription)- enhances cognition under conditions of hypoxia (lack of oxygen), enhances memory and some kinds of learning in non-disabled persons, makes oxidative stress less severe, returns fluidity to brain membranes that have undergone hardening from lipid peroxidation and allows for increased communication between the hemispheres of the brain
So, that’s what I’m starting with. I was currently taking DHA and Ginkgo Biloba myself in hopes that she’ll get a little bit of it through my milk. Ginkgo B does have some warnings about febrile seizures in children under 3 so I’ve quit taking that for now. Hope to ask the doctors at least about the Nutrivene-D. It is specifically formulated for Down’s Syndrome and seems a good place to start.

Also, the constipation pain is still on-going for Natalie. Last Saturday was her most recent screaming session. It was horrible. 30 minutes inconsolable crying until she got so worn out she fell asleep. I had quiet a bit of milk products for David’s birthday dinner and thought I could just dump the milk that night. After that night, I’ve stopped eating all dairy and am watching ingredients in packaged foods as well. I just keep seeing her little face in pain when I look at cheese and it’s kept me faithful. No dairy seemed to be helping but as of today, it’s been since Monday that she was able to go last. I did read that Serotonin can be low in Down’s Syndrome patients. Serotonin produces peristalisis (rhythmic squeezing that moves food through the gut- sorry so graphic!). So, I started researching natural sources of serotonin. Apparently, tryptophan has something to do with the body’s production of serotonin. Turkey is number one on the list! We found a great turkey roast crockpot recipe this week. Other items include: tuna, salmon, cheese and bananas, walnuts, sunflower seeds, pumpkin seeds, flaxseed, flaxseed oil. So, I’m trying to eat some of these foods too in the hope that it will help her. A friend of my mother also recommended flaxseed oil so might go try and find that next. We tried talking to the pediatricians’ nurse on call last night to see if we could give her Miralax before the pain started. They told us no, we’d have to see the doctor first. Will see how tomorrow goes and then call back again.

The broken AC is now running great so hopefuly I’m off to a good night’s sleep!

Amy

On my love of cheese

2011-07-05T18:49:00.001-07:00

Cheese is on the top of the list of my favorite foods. Last Wednesday, I gave up dairy products to see if it would help Natalie. I’m not being rigid about it and searching for hidden dairy content yet but have quit all milk, yogurt, cheese, ice cream, cottage cheese- basically all obvious dairy foods. Sunday, the 26th, Natalie had a 20 minute screaming session where she woke up from a nap inconsolable. She was in obvious pain. We eventually were able to help her poop with a suppository and then a bath finally helped her calm down more. I’d been wondering about dairy but since her only symptoms have been constipation and foul gas, I wasn’t sure if I needed to. After that episode, though, I was willing to try anything. For the last 2 months, she has only been able to poop 2 times a week at the most. I stopped dairy Wednesday, June 29th, and she went Friday, Saturday and Monday all on her own! Tomorrow is David’s birthday and he has requested a cream sauce pasta for the main course and ice cream cake for dessert. I might just pump and dump since it’s his birthday but it does make me realize, we might need to change eating habits for the long term. Though it’s not a choice I would make for myself, I’m ecstatic that it might be helping Natalie.

In my internet search for something to help Natalie’s constipation, I stumbled upon a web site called Einstein Syndrome. It’s a site started by a mother of a 17 year old Down’s Syndrome daughter. It has a TON of information. For the little bit of time I’ve been able to search her articles, it seems she and many others have used the site to collect information of different therapies over the years. The premise of the name ‘Einstein Syndrome’ comes from an article of the same name written by the web site developer, Miriam Kauk. She states that “I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.” There’s so much to look at but, right now, I’m most interested in something called Targeted Nutritional Intervention. It seems to say that Natalie’s extra chromosome causes several chemical processes to go haywire. Different vitamins, enzymes, and antioxidants can help improve growth, and even keep brain cells from dying. I’m hoping to have a list of questions ready to ask our pediatrician and geneticist at our appointments next week. When I first found this information, I was upset that my lack of time to research the information was shortening my daughter’s life. I’m constantly reminded that I AM NOT THAT POWERFUL (Mary Ann Nelson- you probably never knew how that advice you gave me about a problem Julia had many years ago, would help me so many years later)! God is the author of all Natalie’s days and is in control of her life.

I just finished filling a shadow box that a friend gave me for Natalie’s baptism. I decided to make a quilling picture defining what her name means. I’d looked it up before but I think this version is so much more in depth. We thought ‘Natalie’ meant ‘born on Christmas Day.’ This week I found it meant ‘birth’ or ‘birthday'. I also looked up the Webster version of ‘Grace.’ On her picture I put….

Natalie Grace

a birth of blessing,

favor, elegance, & beauty

I’m praying that every day for her…..

Amy

Trying to make her laugh

2011-06-29T10:01:00.001-07:00

Natalie and Julia

Holding Her Head High

2011-06-22T17:58:00.001-07:00

I said last week how Natalie has been holding her head up so much better lately so thought I’d show some pictures of her progress.

The blanket over the head shot- couldn’t decide which I like best….

Natalie loving the snail crawl toy that the Kersteins got her- Thank you so much! It’s been a huge motivator for her to lift her head up during tummy time.

Her first try in the Bumbo seat! We decided to go ahead and get one since Natalie’s been doing so much better with her head control and sitting up is our next goal. She was cautious then happy though falling over. She can hold her head steady for just a few seconds for me to snap a quick picture. Natalie looks so grown up in it!

Ok- back to work. Summer is a challenge to get the hours in and my office is actually very busy right now!

Amy

5 months old

2011-06-18T16:47:00.001-07:00

It’s hard to believe January 18th was 5 months ago but here we are. Life has changed a lot in 5 months!

We went to our first Down’s Syndrome Association of Charlotte (DSAC) meeting this week. They had childcare so Zach and Julia went with us. There was a two hour presentation on oral motor therapy. It’s something I would never have thought of before but extremely interesting now that we have a child with possible speech challenges. The presenter, Lori Overland, started with telling us the following are myths of people with Down’s Syndrome- open mouth, large tongue, high palate, and inter-dental tongue posture (protruding tongue). Her work is in strengthening the muscles of the mouth and cheek and tongue to correct those issues. Almost all Down’s syndrome children have low muscle tone and that low tone also includes the tongue and face. The tongue protrusion can occur because the tongue muscle needs a workout. Since the tongue is not as strong, it doesn’t form the palate as is should when the child is an infant. Apparently, the palate is still formable until 9 months, just like the skull. She showed us how to do a palatal massage on Natalie before every feeding to keep the shape of it from getting high. She also showed the group several examples of therapy tools for lip closure, lip rounding, tongue tip elevation, jaw strength. All a little overwhelming but encouraging at the same time. We see our speech therapist on Monday and I’m hoping to ask her if she will do oral motor planning work on Natalie. Our speech therapist is with Early Intervention for the deaf so her main focus seems to be hearing as it effects Natalie’s speech. After listening to Ms. Overland’s presentation, though, it sounds like we should be starting now on methods to improve mouth muscle strength as spoon feeding quickly approaches.

Friday, I went in to the early intervention office for financial reassessment. Until now, we had only had to pay 40% of the physical therapy bill. Due to budget cuts we are now going to start paying 100% of the bills. Ugh! They will give us a cap per month, though. Our current PT is not on our insurance so we have to meet a out of network deductible. David’s new job will have the same insurance carrier. I looked up to see what PT, OT and speech therapists were in network. All the speech therapists were in Durham or Raleigh and the PT and OT’s were not very close to us either, though in Charlotte. We are now thinking we might need to go on private insurance for the kids and I and keep David with the company’s group insurance. Much more expensive per month but possibly the only way we can get Natalie’s therapy covered for now.

We were at the beach last week with the Stuckey’s. Great break. Natalie had her biggest improvement this week in therapy I think because she had so much extra help from everyone at the beach. Her head is WAY up whenever she is on the floor. We’ve also started working on supported sitting- she ‘sits up’ between my legs. This week, David has been home so we tackled the backyard again. He got a lot of the hill leveled down. Though still not flat, it looks much better. Today, he finished up the mulch. Now, hopefully we can save for a swing set soon.

Amy

Answered Prayer

2011-06-03T19:57:00.001-07:00

So, I think a lot of you know by now that David accepted an offer to work for Bank of America on Thursday. Last Thursday, when we found out his original contract was going to fall through, I told the kids that we needed to pray for Daddy to find a job in the next week so he could still go on vacation with us. I told them that God could do that (even though I wasn’t really sure I believed He would). As the week got closer to the end, David was getting more and more depressed that we were going to have to leave him behind. Thursday morning, I worked with a recruiter over e-mail to allow David to be able to come with us for a few days and we were so excited. But God wanted something even better for us. Funny how many times I’ve tried to ‘help’ God out and what He has planned is always better. That evening, David got the offer at BOA. My first reaction was “Are you sure?”. I mean, I was just starting to prepare for a long haul of unemployment. We’ve been through it before and know so many people who are out of work. Why would God do this for us? Do we deserve to be saved hardship? Well, the truth is, I know we don’t, nor do we deserve anything He gives us. So, to me, it’s just a little reminder of how His love for us is so great that He gave us what we don’t deserve, His son, so we can be with Him forever.

So we’re off for a much needed vacation. Usually, there are LOTS of pictures taken at the beach so hopefully the next post will have some of them in it.

Amy

More Crazy Times in the Williams World

2011-05-31T10:50:00.001-07:00

First, let me say that David has 3 job interviews today tomorrow and Thursday. Praise God! Unfortunately, (you knew it was coming, right?) it seems Natalie and I have been hit with a stomach virus. Natalie is pretty happy with some occasional wimpering but she’s also going number 2 LOTS! I’ve been in bed all day except to feed her and just ‘lost my lunch’ so to speak. I’m feeling better so hopefully it will be short. I would just ask for prayer that David would NOT get sick so he can go to his interviews. We are also hopeful that his job search will be quick. He’s pretty bummed about the possibility of missing our vacation to stay home and continue searching.

Back to bed I go.

Amy

I know the plans I have for you….

2011-05-25T17:33:00.001-07:00

‘For I know the plans that I have for you,'

declares the LORD,

'plans for welfare and not for calamity

to give you a future and ahope.

When Natalie was born, that was the verse that helped me through all the lonely middle of the night pumping sessions while she was still in the hospital. I wrote it on her wall so I could see it while in her rocking chair. God still has those same plans for us. Even though we had some bad news today, those plans are for our welfare. David was to finish his last day at Muzak tomorrow and start a new contract position on Tuesday. The contracting company called today to say the bank lost it’s funding and they no longer need him. He has had lots of calls throughout his job search process and is optimistic that something will come soon. Such timing can only be God’s perfect plan. We earnestly covet your prayer for us as we live in this stressful season that God will show us where David should go quickly.

Amy

Lego Mania!

2011-05-25T16:32:00.001-07:00

Zach’s birthday party was fun though crazy as usual. I got the cake done on Friday night, thankfully, because Natalie woke up late that night with a croup-like cough so we had to let her sleep in the pack-n-play in our room. Needless to say, we didn’t get much sleep so it was good most everything was done before we went to bed.

We started out with ‘I Spy the Lego Guy.’ 8 Lego men cutouts were hidden in our living room and the boys had to find them. Zach and Julia played the night before and thought it was a lot of fun until Zach started hiding the Lego men under pillows! Next was a Lego relay race and then on to the piñata. I made a piñata out of a diaper box and 6 tin cans. I covered it with green crepe paper and watered down glue. The whole process gave me very green thumbs but still not much is growing in our yard!

After we finally had to rip it open by hand, we moved on to pizza and cake.

Zach patiently waited for pictures of the Lego cake.

I took a 9x13 chocolate cake and cut a sliver off the end. I cut the rest in half and stacked the two pieces on top of each other. Natalie’s bottle tops served as the Lego bump pattern. Then, the whole thing got covered in green icing- the birthday boy’s favorite color! We decorated it with people to add some interest and hide some of the icing imperfections.

Make a wish, Zach!

Natalie was in and out of sleep in her infant seat the whole time. Thought she looked a little like the Lego Man plate I made.

After lunch, David got the boys building with Legos in what supposed to be a ‘creative collaboration’ but they just wanted to all do their own thing and it was still fun.

The Lego pinata is in the background of this picture. Most of the close up pictures of it had me in it too that I’d rather not see again ever. Also, the lego man plates are on the table. I took square yellow plates, cut out some rectangles for the Lego head bump, and drew some faces on them. Zach’s plate was ‘Clutch Powers’ (a lego hero) and I had to make a special ‘girl’ face for Julia.

Zach had fun so it was a success. I’m glad I only do one party a year, though!

Amy

10 Books a Day

2011-05-24T06:29:00.001-07:00

Natalie had her first speech therapy session yesterday and we have lots of homework! We are to talk and sing as much as possible, go on listening walks, and read 10 books a day. The speech therapist suggested we have a stack of 10 and anyone who comes in the house is required to read one book to her. I looked after the speech teacher left and we have 8 picture books left from Zach and Julia that I could read daily. I’m not one to save things and since storage is low around here as soon as Julia grew out of some things, I gave them away. So, I’m on the lookout for some board books that will be good for Natalie but not drive me crazy. I just went through Honey for a Child’s Heart and ordered a few of their recommendations from Amazon but if anyone has suggestions, send them my way!

Yesterday, Natalie was irritable but mildly so. She wouldn’t smile much. I thought it was strange so since she had a cough and a low fever too, I ask the doctor to look at her while we were there for Zach’s birthday checkup. Sure enough, she has her first ear infection. They’ve told us it could happen a lot. I gave her some Tylenol in the afternoon and by the time David got home she was all smiles again. When the Tylenol wears off, though, I can tell she’s not feeling well. I also think she’s having a hard time going #2 still. She had a small amount on Saturday but before that, it was last Wednesday. She keeps grunting and crying and passing gas. We’ll see the surgeon Thursday that repaired her duodenal atresia so hopefully he’ll agree that it’s just one of those things like the other doctors have been saying.

Will post later about Zach’s Lego party. Our friend, Melanie, took lots of great pictures so thought it should be a separate post.

Amy

7 years, 4 months and where can we get health insurance?

2011-05-18T20:31:00.001-07:00

Ok, since I’m often told, “wow, that was a long post” I thought I’d just go ahead and group all this stuff together and make it another long one.

First- Happy Birthday Zach! Zach is 7 years old today. Unfortunately, this is his 6 year old portrait because we rarely get a picture of him anymore. Natalie and I took a cookie cake to school and we celebrated with his favorite mac and cheese for dinner. Of course, presents had to wait til after Daddy got home so Zach tried to squeeze in some new Lego building before bedtime. I can’t believe how fast 7 years have gone. It’s been amazing to think how much he’s learned since he first arrived. He still can be very sweet and cuddly. Today, all three of them rocked with me while I sang Natalie to sleep.

Next- Natalie is 4 months old today. She did great at her checkup but we have to go back later for her shots. I was running late to get to Zach at school for his birthday treat so had to cut the visit short. She’s up to 11 lbs 8 oz and 23 1/2” long and is in the 75% for Trisomy 21 kids in height. She even registers on the regular grow charts though in a low percentile. The doctor said she looked great. She had 2 poopy diapers today so hopefully I was just being a worried mommy last week. Natalie was baptized on Sunday so Nana and Papa, Grandma and Grandpa and Aunt Jill were here to help us celebrate. I started crying during service thinking of how far she’s come in the last 16 weeks. When we got up on stage, I just kept looking at her. She kept grinning back while we were waiting so I forgot to be sad. Still want to try and get some better shots of the dress but don’t think it’ll happen this week. Got to keep working on Zach’s birthday party stuff and every day counts!

Third- David accepted a new contract position at Wells Fargo last week. Huge praise! Unfortunately, we are having a hard time finding affordable health insurance. With epilepsy for him, thyroid cancer for me and Down’s syndrome for Natalie, we are an expensive family to cover! He can get insurance through the contracting company but they have a yearly cap per person. If we were healthy, that wouldn’t be a problem but Natalie’s hospital bills from this year already make us think it’s risky. We are waiting to hear from another private company and a third he tried wouldn’t cover him at all. We don’t exactly know why and they wouldn’t tell us for 21 days so that’s not going to work since we need to get this figured out by next week. If anybody has any ideas, we’d love to hear them and we especially need prayer that something will work out.

Again, I’m up too late so better cut this short and get to sleep.

Amy