Preemie Clinic Update

We went to the Clinic at Children's on Friday and things went really really well. We were very pleased with everything. For one, we were there for 2 and a half hours...no, not waiting (we only waited about 10 minutes) we were with the Dr. that long. We started out with a Child Development specialist who did a few tests and then the Dr. came in. Both the CDS and the Dr. were so nice and helpful. It was a long ordeal so it is kind of hard to recap, but I'll do the best I can. It has taken me a few days because I've kind of had to process it all myself.

1). He is developmentally delayed, but they felt like he was doing about what they would expect him to do. They said we could take 3 weeks off his age per surgery to get a more accurate picture of what we could expect. He had 3 (4 if you count his eye surgery) so if you take that off of his adjusted at (July 7) then he's about 2-3 months behind that (Sept./Oct). SOOO...based on that little math trick he's doing things about like they would expect. His tone is lowest (weakest) in his trunk, but his legs and arms and head/neck looked pretty good. Thankfully we have great PT here so they're already on top of these things and I know that is why he go such a good "gross motor" report. They are careful not to promise anything in the future, because "you never know" but we are pleased right now.

2.) They were very very pleased with his "expressive language" meaning how much he interacts and "talks". The CDS particularly said that is a major thing that she looks for..how well babies interact and respond to their environment which is kind of an indication of his ability to soak things up and learn. This area was what he scored the highest in on his "test"

3.) His eyes are obviously a problem. He doesn't track well and doesn't always look at things when you're trying to get his attention. They suggested their eye Dr. that sees all their preemies. SOOO add that Dr. to our roster. We'll be heading to see him sometime in the near future. He just wants someone to see him that sees preemies who had the ROP surgery they're so different from "normal". We are seeing improvements in this area, but it is definitely behind and not normal, and they're still crossing so we're wanting to get on top of it. The things he scored the lowest on were the things that had to do with his eyes. We're praying they're just behind..not anything permanent. In connection with this they want us to have another hearing test just to make sure he can hear. We feel like that is not going to be a problem, but they just want to make sure.

4.) They LISTENED TO ME ABOUT HIS EATING!!!!!!!!! The referred us for a feeding evaluation there to check and make sure there is nothing mechanical and if it is just an aversion, they have a specialist to help with that. Not sure when we'll go, but I'm hoping this will help us!!!

5.) He is a little on the lean side so we're still trying to gain weight a little faster. He's still in the normal range, but we need to start packing on the pounds (hopefully we can get help with that with the feeding people).

6.) They talked to us about his CT scans he's had so far and without getting to medical-y we felt like there were obvious things that he said that pointed to GOD's hand in this situation. Thank you. With all of this comes a new request. I am saying this with limited knowledge myself, so work with me here. His head measured a little bit small (ironic since always before we were afraid it was too big). That doesn't necessarily mean anything since all he as to go on is this one measurement, but he said we want to see that grow over time so insure that the brain is growing the way it should. If this measurement were to stay like this over a period of time it would indicate no brain growth, but he couldn't say that sine he only has one measurement. SOOO if you still have Kanyon on your prayer list, this gives us something specific to pray for.... His brain to grow! :) All the head stuff is scary to me, but we feel confident (and have evidence already) that GOD is healing him and will continue to do that.

7.) He looked at his foot and didn't know right then and there what the cause was. He had a few guesses, but basically said the MRI is a good idea (we'll do that in a couple of months) and we'll just go from there. He's pretty confident (as is everyone else that looks at it) that it is not a positional thing...its either a nerve, muscle, or neurological thing. We'll wait and see.

Overall we felt like it was really positive and we were thrilled with the Dr. and the resources they made available to us. On top of our great Dr.s and therapists we already have, we just added a few more! Soo..i hope that wasn't too much (I feel like I didn't even tell you the half of it) information, but I wanted to give y'all an update. Thanks for hanging in there with us through all of this.

Now to reward you for making it this far...some pictures of us playing with Kanyon the other night.


This makes him giggle..he only giggles if its Kory doing it...not me! Thanks a lot Kanyon!

He was making sweet cooing sounds when I took this..I wish the picture had sound!

Giving mommy dirty looks for taking too many pictures
Little smiley boy
Have a great day!!