Monday, May 14, 2012

Two thumbs up in IC!

Blakers and I headed to Iowa City last Thursday for his monthly check-up.  He got two very big thumbs up from everybody!  Yay!

They all continue to be impressed with his growth over the past two months. He is right at about 21 lbs.  Dr. Jetton even mentioned the "t" word.  Yep, transplant.  We talked very briefly about if we wanted to try to find a match that was a living donor.  We absolutely do!  We will start with testing for Aaron and myself and go from there.  I will keep you all posted on that.  No dates or anything yet. 

Anyway, we are pretty much status quo for the month.  They adjusted one med.  They tweaked his formula recipe to get him some more calories.  

One thing people have inquired about is how much he eats by mouth.  These days, it's pretty much nothing. :(  Sad, I know.  If he eats three bites of baby food we consider that a success.  Blake isn't interested in a bottle either.  That means he gets a lot through his g-tube.  We were actually pretty lucky that he took as much by mouth for as long as he did.

Dr. Jetton did mention setting him up with Early Access through the AEA for some occupational therapy to work on his oral skills so he will be better off after transplant.  I'm sure it wouldn't hurt.

It was Nurses Week last week and I have to give a big shout out to all the amazing nurses we had in the NICU at UIHC and also the awesome nurses in pediatric nephrology.  Our primary nurse, Jen, has been called after an emergency disconnect at 4 am and when we had machine issues at 10:30 pm.  She always acts like it's no inconvenience whatsoever.  A great nurse can make life so much better, so THANK YOU!  You all have made a positive impact on our family and we will always be grateful for that! :)

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