Wednesday, May 29, 2013

It's set

Surgery for Abigail is officially set for Thursday May 30th. She will be getting a tracheoplasty - or plastic surgery of the trachea. It is an inpatient surgery so Abigail will spend at least 24hrs in the hospital pending any complications. I have very very high hopes for this surgery. I'm hoping it will allow her to breathe better which will help her eat better which will help her gain weight and give her energy, in turn allowing her to be able to properly use her muscles. Maybe I'm too hopeful-I know it won't be an immediate change-but I am still hopeful it will change quite a bit about her struggles.
However, we did have physical therapy today and she had made some major improvements from last visit to this time! She tracked a toy 3 out of 3 times and held her head up the entire time she was on her belly! During all that she was looking into a mirror and listening to sounds a toy was making. Her arms are still a bit tight but if you can get her calm then you can stretch her arms out with little struggle. But if you try to move them at all when she is angry-well, good luck! But the P.T. waa very pleased with what she saw today, and so was I!
After the P.T., Abigail and I went to Walmart for a few things and met this really nice family-together they will have 15 kids! That's crazy huh? He had 9, she had 5 and she was pregnant with their baby. She was only 31! The family was truly great though, super nice-we visited for quite a bit. They asked why Abigail "got" to be on oxygen (I thought that was a neat way to ask) so I explained her malacia and all that..I also in theconversation mentioned that she was born with epilepsy and found out that one of her boys (who was there with them) was epileptic when he was a baby! I asked how long until he grew out it and she said it was about a year for him. Towards the end of our visit she asked what medications Abigail was on and when I said topomax she rolled her eyes and said "ugh. I hate topomax-it made my son so mad". I wonder if that may be the same for Abigail and it might be a cause of some of her anger fits she sometimes randomly throws. Idk. Right now I attribute everything to the inability to breath fluidly, so maybe after the surgery if there is still something evidently bothering her we can look into a medicine shift-or maybe a GI thing...
Speaking of GI thing, I switched her formula to nutramigen by enfamil. This is the formula that is for milk protein allergies, where all the proteins are already broken down in their smallest state so the body doesn't have to do any breaking down or digesting, just absorbing. We tried similac's alimentum, but Abigail did NOT like the taste of that one AT ALL. She would latch onto it for a few seconds then scrunch her nose, pull off of the bottle and get really mad at me for trying to give her this nasty stuff! What was I thinking! Nutramigen, however, she can tolerate. I finally started it on Saturday. There were moments that she was screaming bloody murder in what seemed to be just sheer pain. She couldn't poop on her own at all either, but was very gassy, so I would do the q-tip trick on her and a tiny little amount of really sticky, yucky green poopies would come out-but just a very little bit. I figured it was enough to receive some pressure-but there was obviously more in there. After we started the nutramigen, she was able to calm down a little bit more. I mean, she still gets fussy and arches her back, but it doesn't seem to be to the extent it was before. Also she had pooped on her own everyday for the last few days! Some of them have been more than once! And the color is back to the yellow seedy that we like to see. It also has only been little amounts at a time-but it's the right color and coming out by itself, no q-tip needed! So that's great! ((Sorry for those of you who don't have kids and don't know how normal it is to get excited about them pooping!))
So things have been looking good for Abigail in the last couple of days. She did have a bit of a harder weekend but we made it through. 
When we got home last night I ended up
giving Abigail a bath-and she LOVED it! She was having the time of her life. She was just smiling away and obviously enjoying it, I didn't want to take her out! It was so fun to see her so happy! She wasn't as happy when she had to get out because then it was cold! But once out and warned up she got a bit happier again. I also think she knew we were home and she liked that as well. Too bag tomorrow we go back to salt lake again! ((Like I mentioned, we just got home last night from salt lake-now I get up and leave to go back to salt lake again!! - lots of driving!!)) good thing Abi is such a trooper!! She's honestly amazing little baby with all the AbiNormal stuff she puts up with and can still be a happy baby-even if just for a little bit at a time. Those small short moments of happy make all these struggles worth it! They almost make these struggles look minuscule also-that one day she will be all happy and no struggles! 

Anyway. I think that's all I have for now anyway!

This is AbiNormal. 

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