Saturday, March 20, 2010

Lots to talk about....

We've been busy the last month or so planning some things for Noah. We haven't said much about it yet because we were still trying to make some firm decisions.
First of all, and super exciting, Noah is starting school in the fall! He will age out of First Steps this summer when he turns 3 and because he still qualifies for services such as OT and ST, he will transition to the school system. Zane's school offers a special education preschool program 4 days a week for 3 hours a day. We went over for our first transition meeting and I was able to see the classroom and meet the teachers. This is going to be wonderful for Noah! The other children in the class are very close to his level in terms of delay and special challenges. The bus even comes to pick him up and bring him home! Not to mention he will be at the same school with Zane! This being said, we have ALOT of work to do this summer to get him ready for this. His anxiety is still a huge issue and I won't get to go with him to school, so we are going to try and participate in as many activities as we can this summer to get him ready.
Our other big news is that we have been talking with a pediatric GI specialist from Louisiana Childrens in New Orleans. He had been mentioned to us a few times while we were in feeding clinic, but we truly hoped that his issues would resolve and it wouldn't come to this. After Noah's last g-tube catastrophe along with the continued pain and retching during meals and no forward movement in this area, we made contact with Dr Hyman. He has been very open with us and we have been communicating alot through email and phone. He specializes in motility, chronic pain, and severe feeding disorders. He recommended a two-day admission to Louisiana Childrens for antroduodenal mamometry, esophageal study and gastric sensations studies. This will detect abnormalities in digestive strength and coordination, and the threshold for which he has sensation in the stomach. Basically they are going to study his complete digestive system. These studies will be completed under general anesthesia. This was alot for us to digest when we first started considering it. We began talking to other GI's in our area and neighboring states, but could not find one that used they types of studies and treatment methods that Dr Hyman was using. We did get the blessing from his surgeon at U of M, who thought it was a good approach and is curious to see the outcome. It breaks my heart to see him go through another round of procedures, but if it gets us closer to making him feel better on a daily basis, maybe it will prevent further procedures down the road.
This being said, we leave for New Orleans on the 30th of March. He will be in the hospital on the 31st and 1st, and we will fly home on the 2nd. Dr Hyman truly believes that he can help Noah and we are praying this is the answer for him!
I also wanted to thank eveyone for the awesome donations you have sent us our CDH project to Mott Children's hospital! We can't wait to deliver these! We hope to deliver after our trip to New Orleans!


Jeff Handley said...

This all sounds like great news!! How exciting that Noah is starting school; that is terrific! And you've been talking about this doctor for so long, it's great that you guys get to work with him... what wonderful developments.

As always, we keep you guys in our thoughts and prayers.

bikurgurl said...

You are such good parents - God certainly chose you to be the caretakers of Noah because you and Brian are so determined to heal him as we pray for every night.

I don't know how you're flying with Noah, but we have a flight vest that goes over the baby's head and hooks to your seat belt on the plane if you are not purchasing a seat for him. It's super comfy for baby and parent - you can hold Noah the whole time. Let us know and we'll mail it to you :)

We love you all!