More appointments for Will

Will's been a trooper when it comes it traveling and different situations. We spent another 14 hours on the road going to and from Rochester last week and this week. He does great and the information we find out from such a great clinic as Mayo is worth it all.


His upper GI x-ray last week showed that that part of his system is all normal. Since he had had such violent reactions with vomiting and diarrhea to baby rice cereal the doctors wanted to look into every possibility of what could be going on. They drew blood to check for liver function, metabolic disorders and immune reactions. Those all came back good. Then this week the allergist/immune specialist talked about starting him on fruits and veg. in a set pattern with a lot of time before introducing a new food. And he is not to get any rice cereal again! It's possible he could outgrow that in a couple of years, but it's off his food list. And we'll see how the other foods go. She said that fruits and veggies are the least likely to cause problems. Now we'll see.
He also met with an occupational therapist and had a swallowing study with thin and thickened liquid and baby applesauce (all barium). He hated waiting to eat, but he was so hungry that he took the nasty stuff without hesitation. The thin liquid is a little harder for him to get down. It gets into the little pocket behind his epiglottis and then he swallows it in spurts. The thicker liquid goes down smoother, but is harder work for him to swallow. His mouth works with top and bottom pressure, but no pressure from the sides due to paralysis of those muscles and a more limited movement of his tongue. The food was harder for him to manipulate to the back of the throat, but it went down fine. The good news is that he is not aspirating anything!! And he's still a "go" for bottle feeding. It's going to be a challenge for him to eat regular baby food, but I think he'll manage. The OT said that we will need to watch him closer when he starts eating chunky food, like cheerios, that he doesn't pocket them in his cheeks without knowing it.


We will be contacting physical therapists from our area this week to see about getting exercises for his neck muscles and upper body. This will also help the internal muscles of his esophagus and throat.


At the end of next week we will be back at Mayo to meet with a pediatric neurologist....and so his adventures continue.

Can you get any cuter than this?

Its been a long time since we updated this blog. Here are a few photos for now. He is doing so well and growing like a weed. How adorable is he?!

With new puppy

Sitting so big and checking out his hands.