Thursday, January 7, 2010

GI Dr. Appt & SNOW DAY!!!

Today began with a call from Trista's ENT doctor. They finally had the results of the genetic test regarding her hearing loss. The test results came back as non-genetic - meaning she has to go through more testing to figure out what exactly has caused this hearing loss. She is now scheduled for a CT scan on February 19th. She will need to be put under anesthesia for this since she is a heart baby. UGH!

After that, we headed out in the snow to Childrens for a follow-up GI appointment. Her appointment was at 12:30...we didn't get to see the doctor until 2:30!!! We were going nuts in the waiting room. Here are some pictures of Trista while we were waiting.

Once they called us back we had to undress Trista for them to weigh her and listen to her lungs/heart. As soon as we took her clothes off we noticed a strange rash all over her legs, feet, arms and hands. There was even some weird bumps on her face. Here are a few pictures...

So, we waited....

and waited.....

Thankfully it ended up not being anything serious. Apparently, it was some sort of viral infection (yes, another one) and will go away on its own. Makes sense, though, cause she's had a fever the past 2 days.

Her GI appointment went well. They focused on weight gain and her reflux. Her reflux seems to be improving so they adjusted her medication slightly to see if that changes anything. They also decided to switch her from her current formula (Alimentum) to something called Vital Jr. Apparently, it's a lot like PediaSure and is lactose-free and gluten-free. Just a step closer to regular milk. Since Trista has what is believed to be a protein allergy to cow's milk, this is a way for us to ease in to trying something a little less broken down. The only problem - it is over $100 per case! Even more expensive than Alimentum!!! I'm telling 'ya - insurance really should be covering this stuff! I'm even in the insurance industry and cannot understand their rationale for not covering something that is a necessity for a child's growth & development (don't even get me started on the hearing aids that aren't being covered - GRRRRR!). So, we will see if she likes the new Vital Jr. and, more importantly, if she reacts to it well.

We also had about 4 inches of snow today, so we took the kids outside for some fun in the snow! You know you're a redneck when...

...You fire up the dirtbikes and ride them in the snow! :)

Since it was Trista's first snowfall, I had to let her see it! Don't worry - she was only out long enough for me to snap a couple of pictures. She really liked it - she kept looking down at it like "what in the world is this stuff??"!

In other news, Trista has been doing awesome with her hearing aids. She has only taken them out a few times and is getting great at letting us put them back in. She LOVES playing "patty cake" and has even danced to some music. It is so neat seeing her enjoying all of the sounds.

That's all for now...stay warm!!!


  1. Hi Amanda,

    I am also a heart mom and I got your blog from my friend, Stefenie Jacks. I went back and read all of your posts and I cannot believe how much we have in common! Our son, Andrew, also has Tetralogy of Fallot and also hearing aids. Trista looks so cute in her hearing aids. I know it is hard news to accept that something else could be wrong (besides the heart)- we felt that way, too. But it really eventually just becomes a part of them, like that special chest scar.

    Andrew is now almost 3, and he loves his hearing aids! He did used to pull them out, too, and we've had several scares where we thought we lost them (gasp!) so he now wears the string on them with a clip (esp to day care!) Lol. But now he is old enough that he asks for them, esp when he is watching a favorite show or wants to hear something! It is so great to see that they do make such a difference, and they have helped him so much.

    I spent the first 2 years dragging him to speech therapy, OT and PT as well, but it was all so worth it. He is still seen by the speech pathologist and a deaf & hard of hearing teacher through the local AEA. He'll start at a specialized pre school at the end of the month (once he turns 3).

    Gosh, sorry to write a book! I just wanted to offer encouragement and support if you ever have any questions. Feel free to contact me anytime you have questions about the hearing aids, or anything else. I'll look forward to following Trista's journey from now on! :)

    Heart hugs!
    Jen, Craig & Andrew Huegel

  2. I feel your pain on the formula! Ky is on Elecare and its $695 for 10 cans (a month supply) ... which is however a bargain compared to the Peptemen Jr that she WAS on that was closer to $995!!!!

    ITA that insurance should HAVE to cover it! Our babies didn't choose to be born with malfunctioning GI systems!

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