Tuesday, April 19, 2011

CHOWDA clinic update

Noah had a long day up at Childrens for clinic visits. He was seen by ENT, GI, Pulmonary, and Speech... in other words, CHOWDA (Childrens Hospital Of Wisconsin Digestive and Airway clinic). For ENT he had a scope done to look at his vocal cords. Compared to his last scope done when he was inpatient, his vocal cords have greatly improved and are working great with no gaps! For GI, he received a new g-tube design. Hoping this new design keeps him from leaking so bad. It is also more flush with his belly so it does not stick out so far... MUCH nicer! He is also being started on a new med that triggers the nerves in his stomach to expand the size of his stomach. This is being started to help with the vomiting pattern that he seems to have but also to kick start his appetite. For pulmonary, we discussed his breathing and about his O2 use. She told us that she wants us to wait till June before we start giving him breaks from it during the day. She said that as he gets trunk strength back that his breathing will get better, lessening his need for additional O2. So I am thinking about a year more of him being on oxygen. He will be getting an airway study done within the next 2 to 3 weeks as well as a swallow study for Speech. What a LONG day it was. All in all, it was a good clinical visit.
Friday, April 8, 2011

Waiting on the sunshine....


I am totally ready for the weather to warm and the sun to come out. It will sure help Noah and I feel better. We are both sick with some kind of cold/sinus infection. We are miserable. Noah is on a 10 day antibiotic. Pray that Aaron stays healthy.
Noah has been home for a month and a half now. His strength is slowly starting to come back. He can sit up unassisted again, but gets tired after about 30 minutes and then starts to lay down again. He is so silly too. He loves music and loves to dance to it. It is so fun to watch him "dance".
He is still on a continuous drip for feeds. We are working on adjusting it so he can have breaks throughout the day so he can have a little more freedom to roll around.
The Diazapam is almost half done with its ween. He is doing good with it coming off. Next month we go in to have Noah's botox and serial casting started on his right foot. Praying that it will help him.

I can't believe that I will have a TWO YEAR OLD in 2 1/2 months! I need to start planing his party :)

Please continue to pray for our health to return quickly. Thank you.

About Me

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

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