Honestly, I can't be upset. She hasn't been sick since school started (and this is the end of the second six weeks.) That's over twelve weeks of not even a runny nose. Pretty good for a kid who may or may not have a mitochondrial disorder :) I'd say her immune system is holding up just fine!
Another thing to celebrate is that this is the first September/October IN HER LIFE that we haven't been admitted to the hospital! I'm thrilled with that!
Today though, her oxygen saturation has been in the low 90's, she's lethargic and irritable. We began breathing treatments to help her have a more productive cough. But when you don't move around a bunch and have low tone, that gunk tends to just sit around her lungs. Pneumonia is definitely not our friend, so we'd like to nip that in the bud now.
She hasn't had a fever, but is having a hard time sleeping. That darn drainage and irritating cough keeps getting in the way.
She'll be better soon. I'm sure of it.
We go to our 3 month visit with our Epileptologist tomorrow. I'm a little frightened he's going to suggest another medication since she's still averaging one seizure a week. I don't want to add anything else that could take her personality away again. It's such a juggling act. Seizures do damage, but meds seem just as bad. Yuck. And I hate making the final decision on these things.
We saw the ophthalmologist last week. He wants to do another examination under anesthesia in February. It seems like we just had that done, but I'll follow directions. For my class I've been looking at eye reports and interpreting them. So, for kicks, I pulled out Kendall's state eye exam from her first ARD. They couldn't test her acuity at the Dr.'s office, so he reported her as legally blind....and her only vision was BTL. It took me all day before I figured out that means "blinks to light." All I can say is WOW. Just WOW. We've come such a long way.
In other news, our sweet friend Holly took pictures of the kids at the park a few weeks ago. I think this little series completely captures the strong bond my babies have. I'm grateful Kamden is such a loving brother. He would do anything for his sister. She adores him in return. Take a look :)
2 weeks ago