Friday Update

So far we have been able to deduce that there are only two remaining areas that Simon still needs assistance in. One is his eating, they did some tests yesterday that showed that he is aspirating when he eats from a bottle. This means that he is having problems closing off his lungs when he drinks which means it could get into his lungs and cause many things including pnumonia. This was a big discouragment to Summer because it means he will need to keep his NG tube in for 6 more weeks at which point we will test him again to see if he is ready to eat on his own. A NG tube is a tube that goes from his nose into his stomache to make sure he gets the nutrients he needs. If at the end of the 6 weeks he is still having problems they might need to put in a G tube which is surgically installed and goes into his stomache from outside his belly. We are praying that his eating mechanisms will grow stong and heal before the 6 weeks come so that he can begin eating on his own.

The 2nd issue is the seizures he was having before. They have him on a med that is preventing the seizures but they would like to wean him off of them. They did an EEG today and it showed some activity that if he were off the med would probably be a seizure. As they said before, some of the cavities in this brain (some have bigger cavities than normal;) have some hemoraging, nothing big but enough to irritate his brain and cause seizures. They are confident that in time it will absorb back into his system but till then he will remain on the med. They are saying that he will stay on it for something like a year and they will do another MRI in 6 months to see how much the hemoraging has been absorbed into his system.

They said that we could probably take him home sometime soon, possibly this weekend. We have decided to do the muscle biopsy this week and wont take him home till after that is completed and he has recovered (from what I hear it is a minimly invasive surgery).

Summer and I had a great time on the town last night and she spent most of this morning in a spa. By the time I picked her up she seemed to melt into the car seat. I could tell that it was a much needed massage and time to relax.

The kids are on their way down right now and we hope to have some fun tonight as a family. Summers mom is on her way down too and I have begun stacking the tissue boxes in Simons room already.

I think that is everything but I am sure I will be quickly notified by Summer if I have missed anything.

Thanks,
Dean