Sunday, October 16, 2011

Been a while ...

It has been a while since I have updated on Noah. There has been a ton of things going on that I have been taking needed breaks from computer time.

I don't remember if I mentioned just how many times Noah was admitted last month, but He had a total of 6 admissions in 2 months. Always for his cyclic vomiting. It was getting very frustrating and sad. But now, he has been home for 3 weeks and is doing great! He has been consistently gaining weight and learning lots of new words! He is so close to being 23 pounds! It took us a LOOOONNNNNNNG time to get him to 22 pounds and now he is flying through. I am thinking growth spurt!

Noah now has a Power Port. This has been a true God send. With his new port, we are able to give him fluids right away when he gets into one of his CVS episodes. No more useless pokes! We also are able to get blood work much faster and easier. He gets his port accessed once a week for flushing to prevent it from clotting.

Noah has a stander for PT now. He is actually very tolerant of the device... as long as we distract him with his favorite movie or something.

This is helping build his legs and hip strength so that he will eventually be able to stand on his own. He had his second round of Botox injections last week for his foot drop. His foot is STILL bad and I am getting nervous that they will have to do surgery to fix it.

Noah had a cardiology appointment a few days ago. His last ECHO showed that the residual VSD is actually shunting both ways. This could be part of the reason he is still requiring O2. We also found out that there is a medication that could possibly take over the O2 need. The only thing about that is it could put him into heart failure. So, in a couple weeks he is going to be evaluated by Dr Kirkpatrick to see what tests need to be done. He will most likely need a heart cath next spring to measure the pressures in his heart.

So, now that fall is here, we are going to be keeping Noah home and away from company as much as possible. He has already developed a cough but hopefully it will not become anything more.

Well... I should get off for now. Hope all is well you everyone!

Photobucket

About Me

My photo
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 :)

Grab Our Button!

Photobucket

My handsome men!

My handsome men!
Powered by Blogger.

Me and my boy :)

Me and my boy :)

Dec. 6, 2010

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

Followers

Blog Design By

Photobucket

Blog Archive