Wednesday, December 8, 2010

Noah likes to be a mystery :/

This morning, around 6am, Noah's nurse noted that she saw what looked like seizure activity. And for about a week, he has been having some crying spells that always end with him urinating. Today we had urology come and take a look at him. He doesn't have an answer as to why he is crying right before urinating but he said that he is thinking it might be that his body is seizing and the urinating is just an after effect. Noah is now on an anti-seizing medicine. We shall see how this goes. Dr MacArthur doesn't believe that, if it IS seizures, that it is NOT harmful to his brain and that it should not be a long term thing.
They are starting to wean his methadone little by little. Today they had an ultrasound done on his IVS and his SVC to check for the clots, their size, position,etc. They will need this information for Friday when they do his heart cath.
Noah is doing great with his eye focus. He is also starting to get some motor strength and coordination back... he is trying to put his binky in his mouth and also the mouth care sticks. This is AWESOME!! He knows what they are and where they go! I have been trying to get video of him trying but by the time I push recod on the camera, he has gotten tired and doesn't have anymore energy or strength to keep doing it. It is so sweet to watch him.

I feel like this update is kind of scattered! LOL!

My mom, sisters, and nephew came up to visit us today. It was the first time that Jonas got to come in to Noah's room and see him. They have not played with each other since October 15th :( Jonas had a huge smile on his face when he saw "his baby"! He did not show any signs of being scared of Noah's appearance... like it didn't even faze him, he was just so happy to see him. I wish Noah was awake during the visit... it would have been good for him to see his big cousin. Next time!

1 comments:

Anonymous said...

I stopped by the third floor today to see how Noah was doing, and didn't find out until I got home and read the latest blog updates that you guys had moved upstairs! What a blessing to finally get to hold your baby after this long journey! I hope you both get to do that more often as he continues to recover. I will keep praying for that smile to cross his face by Christmas, and also for a decrease in the pancreatic enzymes , a lessening of the withdrawal, a clearing of his mind and a safe and uneventful heart cath.

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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 :)

Dec. 6, 2010

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

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