Still feeling yucky

Arianna had a really rough night but surprisingly she woke up in a good mood. I knew she wasn’t feeling totally herself because she laid in bed watching cartoons for about 45 minutes. I didn’t mind the extra rest but I hate seeing her like this. Then as she started moving around more you could just see it in her eyes that she still was under the weather. I gave her a nice bath then we went out to watch Daddy fly his radio controlled airplane. Arianna had a good time and really enjoyed being outside but after an hour she started feeling warm and sure enough her temperature was rising so we headed home. She does not want to be put down again so I ended up laying in bed with her for an hour to make sure she got some good rest. Right now she is laying on my chest and still has a temperature of 100.1. Looks like I need to give her some motrin.

Tomorrow Arianna is getting her second hearing test. She had one while in the NICU which she passed but because of the DiGeorge Syndrome and delayed speech they want another one done after 1 years of age. This is an early morning appointment and all the way across town so hopefully she will be feeling better to tolerate the long car ride. She cried the entire time we were in the car today. This is so hard for me to hear because we never let her cry as a baby. I still notice her lips getting blue when crying and that really freaks me out. The docs say all babies get like this when crying but when you’ve seen your childs entire body look like that it brings back some not-so-good memories.

While I was laying down with Arianna I was just watching the show, “Mystery Diagnosis” on discovery health…I’m addicted to that show! And it was about a child born with a CHD (narrowing of the aorta). She was having trouble gaining weight and didn’t have any weight gain from the age of 1 to 2. They started naming all these signs and symptoms this little girl had and all of it sounded like DiGeorge Syndrome and I was almost 100% sure they would diagnose her with it when they started talking chromosone disorders….but instead she was diagnosed with Turner Syndrome. I was watching this show and listening to the parents talk and I swear it could have been me on the television. It’s amazing to think how you can have so many of the same emotions as someone you have never met before. Even though this is a different syndrome it is still very important to me. Before Arianna I never knew how important genetics was…I’ll be honest I didn’t even know what a chromosone was. It is very important to get awareness out about all types of genetic disorders not just DiGeorge Syndrome. As the logo says on the VCFS website “Knowledge is Hope”.