Two years post accident and still kicking (literally)!!!

July 25, 2007 | Updates

The past 10 days have been a whirlwind. It’s crazy to think how much can happen in just 10 days. Of course, we celebrated Samuel’s birthday. Samuel started the day with preschool and then came home for a nap. Later that afternoon, we took him to see Ratatouille. He seemed to really enjoy it and didn’t move a muscle through the whole movie. That night, we had a little family get-together with ice cream, cake and presents. It all went really well except that Samuel seemed so tired and sleepy. But he did seem to enjoy himself and now he is an AMAZING 4 years old. I really can’t believe it.

That day, we also had Samuel’s IEP at school. I really should have scheduled it for a different day, instead of his birthday. Prior to the meeting, I was already really worried about Samuel. He has been so different the last few months. We have been battling his seizures and that has worried me. But he has also seemed to get progressively less and less responsive and more and more lethargic. The last month has been bad enough that there are many days that he sleeps until noon and then is still so groggy all day. And I couldn’t figure out what was causing it. It didn’t seem to be his medications, even though we have changed them some. And I was really worried the seizures were affecting his cognition. But I also thought it could be that he just wasn’t sleeping well at night. But, honestly, I just didn’t know.

I think the IEP just confirmed my worries. All of his therapists and teachers said the same thing. Something is just not the same with Samuel. He has fallen back on all of his goals. He doesn’t seem interested in things or nearly as responsive. He is just lethargic and tired all the time. It was hard to hear, but it needed to be said. I think I just kept telling myself that it was just me worrying and that it was really nothing. But to have everyone else voice the same concerns, I knew I needed to do something.

The next day, I spent the day on the phone making doctor appointments. I made one to have Samuel’s eyes checked because he didn’t seem to be tracking as well as usual and his eyes were watering a lot and it seemed impossible for him to open them in the sunlight. I also made an appointment to have his pediatrician check him and, hopefully, do some blood work to see if anything unusual showed up. And, I put in a call to his neurologist.

The next day, the eye appointment showed that all looked well with his eyes, which was good, but confusing. The blood work showed that all looked good there also, which was good, but even more confusing. And lo and behold, his neurologist called me right back and spent a good 20 minutes on the phone with me. We discussed the fact that the neurontin probably isn’t helping his seizures at all, so we decided to get rid of it (slowly). We also discussed that we can go up on his Keppra and decided to do that also. And then we discussed getting a 24 hour EEG if those two ideas don’t work so that we have a better idea of exactly what is going on seizure wise. So, we decided to wait the weekend and try these few changes and see what came of them.

Then I spent about 3 hours analyzing Samuel’s diet. He used to be on pediatric compleat. Now, I make his food, mostly from goat’s milk. I had been very careful when I came up with this new diet to ensure he was getting enough fat, calories, fluid and protein each day. But this time, I analyzed every last detail of his diet to make sure he wasn’t missing anything that he had been getting on the pediatric compleat. And what I found was that he wasn’t getting as much iron and as many carbohydrates. So, I tried just giving him some pediatric compleat a few times a day. But he started spitting up a tremendous amount of food again and I’m not ready to go back to that nightmare just yet. So, I started adding a few more things to the diet I make him. I also started feeding him pediatric compleat overnight because he seems to tolerate that well. And I started giving him a liquid vitamin each day.

Well, I started all that on Friday and by Sunday, he seemed so much better. And on Monday, his teacher was excited because, “Samuel was back!” And boy, oh, boy, is he back! He is wiggly and smiley and, well, I call him my little “crazy man” because he just NEVER holds still! Sometimes - actually a lot of the time - it is frustrating to have him be so wiggly. But it is much worse to have him be lethargic. So, we are glad to have our wiggly, determined, crazy man back in the house! And I am so glad he is feeling better. It is so strange what a difference small things (that don’t show up in blood work) can make. My only hope is that he settles down just a bit. Hopefully, he is making up for lost time. But actually, I think the change in medications takes him a little while to get used to and he will calm down a bit in a week or so.

So, that’s about it. I didn’t even realize it was July 19th (the 2 year mark of Samuel’s accident) until about 3 pm that day when we were sitting at the eye doctor’s. I started to get teary eyed when I realized it, but pushed the tears back and by the time we left, I had forgotten. I don’t think I thought of it again that day. (Thank heavens my memory is so bad!) So, the day didn’t turn out to be too emotional.

Also, we FINALLY got all the info in and the approval for his bath chair. Sadly enough, I put off giving him a bath sometimes because it is such an impossible chore. He wiggles so much, I can barely keep him from drowning. So I am pretty excited for the chair. We also have a prescription for new leg and foot braces so we can get a walker - FINALLY! Otherwise, we’re just enjoying the summer. Tomorrow is the last day of summer school so the next few weeks will be interesting. But I think we’ll have a good time!

And here are the pictures from our reunion. The first one is Samuel & mom running the sack race and the second one is Samuel and dad watching the kids play on the slippery slide. It was lots of fun.

One last thing. I am rethinking the whole going to China for stem cell treatments (they are stem cells from umbilical cords or bone marrow, so no ethical issues). If you get a chance, read Shonia’s blog at the link below. She is an eight year old girl in China right now who reminds me so much of Samuel. And she is seeing some great results from her treatments.

Click here for Shonia’s blog.

Keep praying!

Love,

The Jewkes

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