Tuesday, April 8, 2014

When it rains look for rainbows.

Leah continues to seize a lot! We have racked our brain to try and figure out what to do for her. We have tried everything. Sometimes inflammation causes her to have seizure so we have tried ibuprofen for a couple weeks...nothing. If she hasn't pooped she will have bad seizures...we have made her poop daily. That's another thing that's been a problem. She stopped pooping on her own. She has never pooped on her own anyway, we have always given her miralax but she isn't pooping with miralax anymore. It's been two weeks since she has pooped on her own. We always have to give her suppositories.  I have tried everything out there to help her tummy. We called her GI doctor and she recommends senna syrup. That's our next thing to try. Oh the fun!!!

I got a lot of phone calls from doctors yesterday. Dr. Hornyik called with the test results of her sleep study that she did up at PCMC a couple weeks ago. The results were not good. She desat's bad while she sleeps. She needs her tonsils out and her adenoids out. She also needs to be on a cpap machine. We are going to see a ENT doctor in two weeks. Dr. Hornyik upped her oxygen at night. Just a quick note: Leah's pediatrician is amazing!!! She works so hard for us and takes such great care of Leah. I don't know what I would've done without her. Also, our insurance has denied Leah's formula...many times!!! It's a specialty formula that's made out of real food like chicken, peas, peaches etc. It's the only formula that Leah doesn't throw up on. She is thriving on the formula, she has gained lots of weight. Dr. Hornyik fought for her to stay on the formula. I just love her. By the way, insurance finally approved it.
Dr. Swoboda's genetic counselor also called. All of Leah's test results have come back normal. The last resort is a full genetic mapping and of course our insurance denied it! They are trying to appeal it.

All that news was really hard on me. I held the tears in all day!!! Leah had a horrible day yesterday and I got all that news while Chad was out of town. My heart is broken for my little girl! I wanted to just cry for her. Instead, I grabbed my kids and we went to get some dinner and came home and watched  Uchtdorf's talk on gratitude from Sunday's conference and made cookies together. Watch this small clip when you have a moment. https://t.co/K8fuUNmAOv

I decided to turn my day around. No matter the bad news, I get to chose how I respond to it. I am learning this every day!

Bad days!

Tyler put sunglasses on Leah.

Becca and Leah. Chad let Leah suck on a sweet tart...yummy....she loved it!

 Best brothers ever!

We got a partial smile!

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