Simon Updates

This is copied and pasted from Simon's carepages:


1st Simon’s sleep study came back with him in the severe sleep apnea category. Both Central and Obstructive. Primarily central but he does have a slight obstruction. The question is what. So, he will be going in Jan 4th for a scope of his tongue, skull, voicebox and just his whole airway; if they find something obstructing it will be removed (except for the skull and tongue) and if they DON’T find anything else obstructing then his tonsil’s and upper adenoids will be removed; though at this time they do not appear to be the problem. This will not cure the sleep apnea, it will hopefully just remove the obstructive variable; his brain is still not telling him to breath. But removing the obstruction may improve it enough that we will only have to watch the central issue; if it doesn’t improve then we will be looking at cpap or bipap. We’re really hoping for neither of those. He will be staying overnight.

2nd thing. We had a physiatrist appt this past week and Simon’s small feet were brought up by us as a possible deterrent to him walking in the future. His feel will not prevent him from walking. Right now it’s his strength and desire. There is a strong possibility that Simon won’t walk. The rule is sitting up unassisted by 2 means you'll walk assisted by 5; he's not quite sitting up on his own yet. We are not surprised nor devastated at this news so we are not in need of support over this issue, it just is what it is. We do have some tools we’ll be using to help strengthen his legs and trunk. Simon may walk, no one knows really, but he has absolutely no desire to try and a huge part of that may be security due to a lack of strength; then again he may like being carted around. So we are going to help him get stronger through additional use of his stander, and do what Simon wants on Simon’s timeline.

3rd and oldest thing. Simon was having a lot of trouble with increased seizures and starting to get into those scary ones. He has started lamictial and has been on it about a month. It seems to be doing the trick. Once we get his sleeping more productive I’m hoping that should make a big difference overall in health and development.
We are extremely blessed that he has been healthy in so many ways. All of these things are just a normal part of a child with challenges like Simon’s and we are very grateful to have him with us and healthy. I am knocking on wood right now…..

He is so much fun and such a joy, he’s worth every hiccup and worry we have to go through on these occasions. Though we have asked him to stop after these.... ; P