Friday, June 29, 2012

Sam and Early Intervention

Over the past year I have received lots of e-mails about Sam and his motor delay. Most emails come from people I don't know who have children who are behind in some areas and just want to know more about our progress. I've had intentions of posting about this but have never gotten around to it because of this or that. I thought it would be helpful if I wrote a post about little Sambo so that it might help answer some questions or just help someone in the same situation.

One of the main questions I've been asked is "Does Sam have a certain diagnosis that caused his motor delay?" so I'll start by saying that Sam had/has benign hypotonia of infancy; in other words, he does not have a diagnosis, but was born with muscle weakness for no apparent reason, so they give him the "diagnosis" of 'benign hypotonia.' We did not know this right when he was born because, well, he wasn't necessarily a 'floppy' baby; he held his head up pretty much on time and generally didn't show the muscle weakness until around 3-4 months; I noticed he would not put weight on his legs and seemed to hate tummy time; not for the reasons that every baby hates tummy time, but because he literally did not have the core strength to even attempt it for more than a few seconds. Around 6 months he was still not putting weight on his legs and could not really sit in an exersaucer for longer than a few minutes without flopping over to one side, even with support (like blankets, etc) around him. And by 6 months babies should definitely have the core strength to do those things.



Now, backing up, when Sam was born he did have a few 'markers,' for lack of a better word,  that would cause doctors to take a second glance at him. For instance, the cranial sutures (or the openings in the bones of his head; the soft spots) were wider than normal. In fact, the main soft spot on the top of his head was not just at the top of his head but came down onto his forehead... hard to explain and hard to see really, but you could feel it and you could see his little pulse just beating away if you looked closely enough. He was also born with undescended testicles; it is fairly common to be born with one testicle that is undescended, but having two that were undescended was a little less common. He had surgery at 6 months and again at one year old to pull them down to where they are supposed to be, and luckily did very well with surgery and has had no complications from that. But the combination of his wide cranial sutures, his undescended testes and later his muscle weakness led doctors to be concerned; any of those things, in and of themselves, would not be of great concern to doctors. But since he had a combination of 3 different things, they made plans for us to see a few specialists just in case.

(Sam learned to sit up at 8.5 months)
The first year of his life was difficult in so many ways for me because of these specialists appointments; it seemed like I was always in a worried state, waiting for the next appointment or waiting for a particular test result to come back. We saw a urologist, neurologist, neurosurgeon, had tons of x-rays and blood work done, and even went to an outpatient physical therapist at first. It was constant, it seemed, and I began to dread Sam's well visits at our pediatrician just because it would always remind me that he wasn't meeting his physical milestones on time, like sitting up or getting on all fours, etc. Finally at his 6 month checkup I asked Dr. A if he would mind if I called Early Intervention Services of Alabama.

I had heard about Early Intervention Services through my good friend Jackie who worked for them at the time and I am so thankful I knew about this service because my pediatrician did not think to tell me about them (he is wonderful by the way and fully agreed to my calling them when I suggested it.) I am so, so thankful for the EI Services of Alabama. You can find out more about it here, but for those that do not know, it is a service provided for kids 3 and under, it's FREE, and the people are nothing short of amazing. Another advantage is that their services are performed in your own home, so your kids get to stay in their environment. They offer everything - physical, occupational, speech therapy, even help with nutrition, behavior, help for kids with learning disabilities or anything like that. You can read about them on the site and if you think your child might need to be evaluated, you just call their number and they will set up a time to meet with you.



We were evaluated in December of 2010 when Sam was 6 months old; to qualify for their services, your child must have a 25% delay in one of 5 areas, one of which is physical. Sam of course met this requirement and so we began physical therapy with Chantel every other week in January. At this point, Sam was still not sitting up and could not tolerate the exersaucer for longer than a couple minutes. And from age 6 months to one year we did not have any specialist appointments. Dr. A decided we'd wait until the one year point to go any further with testing and such. He said sometimes the best medicine is just giving them time - time to meet milestones at their own pace. So that is what we did. 

Sam did make lots of progress, but at the one year point, when he still was not crawling or even getting on all fours all that much, we were asked to see a geneticist. This was probably the worst of all the appointments because you learn of what all could be wrong, basically every worst case scenario in the books, and you also have to sit and watch your child be picked apart from his hair down to his toenails on what looks normal and what might be indicative of something abnormal; it was crazy stuff like "Welll his forehead is prominent... welllll his upper lip turns slightly upwards.... wellll his nipples are 1 millimeter too far apart..." and all you can do as a parent is just sit there and try to hold it together while he gives you the list of diseases that could possibly take your child's life away. (In hindsight, I know he was just doing his job, but it was still a bit traumatizing for me as a mom.) After that appointment we went straight to have blood work done as well as some other tests. They took about 12 tubes of blood (which means Sam was stuck about 4 times total.) They were testing for everything from thyroid disease to muscular dystrophy, and the geneticist made it seem like the latter of the two was a true possibility. I tried not to look at the lab order the geneticist had written because I didn't really even want to know what the possibilities were. After that point I just asked people to pray for the tests to come back normal; that is all I knew to do. And sure enough, they did. I waited 8 long days and cried myself to sleep almost every night thinking of losing my child to a muscle-wasting disease. Then finally the geneticist called me back and said everything was normal. I have never felt so much relief in my life.


Thankfully, as you have been able to see on the blog, God has done a great work in my sweet little Sambo and has given him strength (in His own timing) and the endurance to reach his milestones, little by little, one by one. And for each new milestone he meets, we thank God; we do not take for granted one single step, or even something as simple as sitting up or pulling up to stand or taking a side step while holding on to our hands. We even smile when he misses a step and falls flat on his face, because, hey, at least he is taking steps, right?

(This is a verse I have been praying over Sam since he was born.)


Photo by Volree Wade
That is why I have posted all his progress videos and have talked constantly (or more so than I did with Mary Ella) about the new tricks he is doing; because I am so proud of him and because I am so thankful that he is improving; there are so many children who are not as fortunate as we have been. Children who do not progress, whose blood workups do not give happy results; children who will not be able to meet milestones like Sam has done; I am and will be forever mindful of these precious kids and for their families, and will also be thankful that I know a little bit of how it feels to go through those periods of worry and frustration and not knowing. I am thankful that I can empathize with people going through that and hopefully I will be able to provide some encouragement for them. I hope I've shed some light on little Sambo and maybe helped someone who might be going through the same thing! I'd be happy to talk to anyone about any of this. Feel free to e-mail me or find me on FaceBook, although email is usually better. (And keep in mind, I know there are people who have gone through and are going through far worse, with far more worrying and testing and even more severe diagnoses; I do not intend for this post to sound like, "Poor me, look what I went through with my child" because I know that this was no trial at all compared to what some go through. I was a nurse in Pediatric Intensive Care, so I've seen it. But I think any time you are faced with this sort of thing and it's your baby, it is an extremely difficult burden to bear, and when that burden is lifted, as it has been in our situation in a lot of ways, you realize how much it weighed on your heart and how stressful it truly was at the time.)

I am sorry I did not post this on the blog sooner; I guess this blog was sort of my 'escape' from the reality of knowing what could be wrong during that first year, and then after that I've had my hands full and have never gotten around to writing about it. Thanks to everyone who has prayed for him though and for those of you who have asked about him through email and messages.

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