There really hasn't been anything to update as of late. We did get all that blood work done, and haven't had any results yet. There hasn't been any change in how she's doing really. I have to say though, that Peanut's trying to not fight us on everything. She's willing to eat things that are a little healthier for her. Yet it's so darn hard to even find stuff. It's amazing how much crap is out there. She does talk about doing things to burn off calories though.
Hubby has still been sleeping in her room too. She still dips down at times, but has gotten a lot better. And she's been off oxygen for the last 2 days now. That's good, since we were getting concerned about her being on it too long. And she doesn't like having the pulse ox on every night.
We did find something else to look in to, but we're waiting on getting more information. The one good thing is that if this turns out to be something, the best doctors who have researched this disorder are here at CMH and RMC. Peanut's pediatrician is good friends with one of the docs who has done this research, so she's been in contact with her. They're trying to work on getting Peanut in for the genetic testing that this requires. While we don't want it to be this, having an answer and somewhere to go would be a little helpful.
Right now we're getting ready to start kindergarten in a couple weeks. And as usual, our end of the summer always gets busy. We spent the entire day downtown the day after their birthday. We did the Sears Tower, went out on the ledge, took a Double-Decker tour bus around, spent time at Millennium Park, and had dinner down there too. The next day was at a local water park. We had beautiful blue skies, perfect temps, and a nice park. After that, we went back downtown to Navy Pier, to watch the practice runs for the Air and Water Show. It was another picture perfect day!
The biggest thing for them has to have been their birthday party this week. We had it at a local, indoor play-place and it was awesome! We didn't have to clean up, make food, get a cake, goodies bags, none of it! The package we chose came with all that, unlimited play, tokens for the games, and a pinata too! It wasn't a big party, which was totally fine, they all had fun.
We hope that we'll have some news, answers, or directions this coming week. But we know that this kind of work takes time. But maybe some answers from the blood work that they did.
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