Thursday, March 05, 2009


Sorry I am SO slow at updating the blog! The MRI showed little change from his last MRI which means no brain tumor! (yeah!!!!) He does have hippocampus sclerosis but so do 65% of epilepsy patients, some damage to the nerves in his white matter, inflamation in his paranasal sinus and mastoids and NO 4th cranial nerve palsy.

We saw Cardiology in February - everything looks great! A little more narrowing to his conduit and valve and the valve no longer works but he is tolerating all of that very well and won't need surgery this year! We will see Dr. Justino again next year :)

We followed up with the eye doctor to get his take on the MRI. With no nerve palsy - what the heck is causing his eyes to do that thing? Well, Dr. Lai didn't have any answers for us except that he thinks Myasthenia Gravis is a long shot (thank God!) becasue the symptoms are severe from what he says. He has been the first to say that but he said that Miles' respiratory system would tire out during the night and he would wake up gasping for breath and that he would have extreme fatigue, and his eyes would droop. We don't have any of that so I feel a little better about the possibility of MG. The neurologist is next on the 19th - he was the one that said MG in the first place so lets see where he is on it. Miles had his thymus gland removed during his open heart surgery - which is one of the treatments of MG. I asked that if he has already had it removed could it be possible that he is already being 'treated' for it and that is why we don't have severe symptoms? (Sounded logical to me) He looked at me like I was speaking in another language so maybe I didn't come across. I will ask the neuro the same thing. Anyway, concensus from the eye doc is that we don't know why his eye does this. It isn't muscular, it isn't nerve palsy, it isn't a tumor, he doesn't think it is MG. His head tilt is only about 5 degrees so far and he doesn't complain of seeing double very often. So we live with it for now I guess. We go back in 6 months and if it worsens to the point that his head tilt is about 10 degrees then we can do surgery. My question there is - surgery on WHAT? His eye I know but if it isn't muscular would that do any good to cut and reattach the muscle? (no!) Who knows...I sure don't.

Riley is doing great! Just finishing up his TAKS testing this week (for those of you from KY - that is like the KEST testing we used to do...a baloo is a bear, wuzzle means to mix, a yonker is a young man - you know you remember that!) He is so smart, and so fun and silly (sometimes too silly!) and he and Miles love each other a ton! He is the best big brother and has gone through so much with Miles - often times not getting the attention he deserves. God picks very special children to be the siblings of chronically ill children! He has such a loving heart - we are very blessed!

I will try not to say away for too long...

1 comment:

Crystal said...

I just wanted to leave you a quick note. I came across you on the yahoo TOF group. I searched Dr. Fraser on the board and came across one of your post. Did he perform your son's surgery? He will be doing my duaghters repair. The times we have met and spoke to him, he was so wonderful! And I have read so many amazing things about him.