Matthew Update

Ok, so Matthew had an Opthamology appointment this morning to check his eyes because of prolonged steroid use. Good news is that there is no sign of glaucoma or cataract; which we really didn't expect; however, we did find out that he needs glasses (I guess I should be ok with that, but it's just one more thing to have to add to his already stressful life...

Secondly, we met Dr. Kahl (GI doc). He is wonderful by the way! Matthew hasn't gained any weight since the last time we were in Cincinnati (still at 23 lb.s for a 28 month old)...like way way way off the chart. Anyway, Matthew has DGE so his food does not pass quickly through his body, which gives him a full feeling. So, our main concern was that they were going to recommend the G tube and then we'd have problems because of too much stuff in his tummy unable to pass. Well our concern was valid. They are now doing a new procedure which involves opening the lower valve with a balloon and then injecting botox to relax the muscle; the balloon comes out but the opening remains relaxed enough to let food pass better through the system. It's done as an endoscopy procedure. In and out...supposedly no side effects. It lasts about 4 months, but their hope is that it gets these kids on the chart and pass the hump so that they don't need to rely on GJ tubes. No gaurantees obviously, but so far 9 out of the 10 kids have had good results. We are encouraged by this option.