Friday, January 11, 2008

Ears and more....

This morning we met with the Ear/Nose & Throat (ENT) doctor for Josie's tubes. They looked good. Her last infection is cleared up and the right one appears that it may come out on it's own. This would be awesome because the alternative is another surgery for Josie to take the tubes out. Right now we'll leave them alone for cold/flu season and revisit in April. She was a champ being super still for the doc to check her ears.

I asked the ENT doc about Marie's "snorty" breathing. She's been breathing as though her nose is stuffed for the last month to month and a half. He listened two seconds and announced she's loosing control of her palate. For those of you (like me) not completely sure what a palate does check here: Basically, it's a muscle and as I'm learning with Leigh's Disease, the basal ganglia (part of the brain that's affected) pretty much controls all the muscle movements both intentional and unintentional in your body. The ENT doc said it's likely going to get worse, sleep apnea and snoring are concerns. She could have tracheal tube placed if it gets bad enough to help her breath. I'm glad I know, but hell, I sort of wish I'd never asked.

Long story short, hooray for me when I ignored the metabolic doctors lack of concern. It is important that she breaths snorty, and now I know why.

We also today had lunch with a new friend of mine. Her little boy is 7 months and has Leigh's also. The disease affects him a bit differently, but it's just as devastating. If you all would, include little baby "L" in your prayers. They are wonderful people, Luke and I are so glad to have met them. It's good to have someone who is going through this as well.

Marie actually slept most of the way to Ft Collins in the car, but she had a rough ride home. We continue are love/hate relationship with the car seat. Towards the end she was pretty uncomfortable, she seems to have some pain almost every afternoon now. I teared up in the car, no worries, Luke was driving.

That done, I am going to go and play with my girls. Everyone have a good night... we have not been sleeping well in, actually, I can't remember when we last slept well. Hopefully tonight is restful if nothing else... much love- Shan

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