Well, one minor correction that Jeni pointed out to me...is that I guess Jude had been vomitting almost 2 months, rather than weeks as I had stated. I did not realize it had been an ongoing thing that long.
Jeni sent me an update from yesterday's mentally and emotionally exhausting day of testing. She says she does not know how Jude does it....and honestly I do not know how THEY do it as parents either!!!!! She said a particularly difficult thing was when the central IV line was surgically put into his little chest. Rough stuff for a mommy!!!! She is a trooper. I told her how much everyone appreciates hearing about him and several are following this blog to keep up to date. She was very glad. Here's her update...and I will post the other pics she sent me after this post.......
"Jude's bone scan was clear, and his hearing is perfect. They want to check it first, because radiation can damage hearing. Tomorrow he is getting an MRI of the brain and spine, and I think a spinal tap. He will be asleep for all of it, thank goodness. He is really holding up good so far. I don't know how he does it. All that strong will he has is coming in handy. He was playing a game with us tonite by wiggling his fingers for us while we clapped and cheered him on. A huge improvement since this syndrome started. He is also practicing saying the MMMMMM sound. He can still say uh huh, and yeah but only sometimes. He has speech therepy in the morning, and they are confident that he will regain his speech soon. Meanwhile he is eating like a horse and constantly has a Buddha belly.!!! Radiation won't start until mid next week, and today the doc told us about all the side effects. Ugggh........ They had to mark his head and spine with all these x's for when they start. Talk to you all soon, and miss everyone soooo much!! Thank you again so very much for your love and concern. It means so much!"
