Welcome home!!

We welcomed Ryan home today! So exciting!

This has been a huge relief. We have had a very busy week of various doctors appointments.

Feeding Team-
Want us to continue fortifying his food in hopes of encouraging more weight gain.

GI-
Nolen had a Barium Suck Swallow test and it was perfectly normal! YAY. That means that his choking is probably due to fatigue, poor tone and reflux. We will know more after he spends two weeks on his new medication (which according to Ryan tastes AWFUL! We will definitely do our best to make sure to ask for it to be flavored next time considering the LARGE amount he takes each day.). Nolen is still having blood in his stool, so we will be waiting to wean (ughhh) for at least another 4 weeks. I don't want to introduce formula to him (or spend days very uncomfortable to having to stop weaning quickly) until the blood has stopped. During the next 4 weeks, I will have to eliminate soy and dairy.

Neurology-
Concerned about his seizure like movement so we will be going to CHOP for an overnight EEG, possibly over two night frames. We will be waiting to do an additional MRI until he is older unless his development stalls or deteriorates. Encephalitis can become degenerative, and brain damage can be extensive and we won't know until his brain is fully mylienated. Neurology was very hopeful given his development that things looked positive regarding his brain damage. IF he is having seizures we will end up undergoing further test to find out where they are located and how best to treat them (drugs/surgery).

Now, I'm back to snuggling with my husband and I will do my best to try and post our AWESOME developments in our homeschool as well as some yummy recipes!