Phew. The past two weeks have really kicked my trash. CA, on the other hand, has handled things just fine.
So fine, in fact, that she is now 100% oxygen free. Who knew that all she needed was a nice sea breeze and high taxes?
Charlotte’s echo looked great, and the cardiologist is confident that her heart will remain fine without the oxygen. We’ve also gotten the go-ahead to only monitor her sat’s while sleeping. This means that during her “down” time from her tube feeding, she is completely tube and wire free. For three whole hours a day. It’s rather strange. I carried her around the house for the first time today. She’s 16 months old. I carried my baby. It’s rather surreal.
In other news, Charlotte is attempting to crawl as well. So far, I’ve seen her take about 3.5 crawls toward an item. That wore her out, though, and she has refused to perform since then. We’ll get her going though.
We meet with the San Diego Regional Center and a Special Education Teacher today to map out a therapy plan for the little one. We have a follow up appointment with her primary care doctor on Friday, and hopefully then we can know who we still need to see and who we can say “chao” to without looking back.
Of course, all good news has it’s counterpoint and Charlotte’s stay was full of that. It appears that her central apnea is pretty significant. To make things difficult, we can’t quiet figure out why she has central apnea. She’s too “old” for apnea of prematurity to still be a problem, and her MRI revealed that she does not have a malformation of the brain stem, which often causes central apnea. Which leaves CA as a bit of a mystery. Neurology also noted that she has hypotonic CP, although, at this point at least, the diagnosis is more to qualify her for services than it is an actual forecast of her abilities. And finally, her eye doctor told us today that while her eye sight looks great, her field of vision is reduced by about 50%. It’s the question I have avoided asking, but there it is. She has about 80 degrees of vision, and beyond that, her peripheral vision is non-existent. But hey! That’s 80 degrees she in all sense should not have. We’ll take it!
Currently, my two little munchkins are laying on the floor, watching some Go, Diego, Go! It’s been amazing to watch them interact like two “normal” siblings. You know, like Caleb shouting, “Momma, she’s bothering me!”
Sigh. I love it.