Monday, May 4, 2015

Cora's Update

The appointments finally slowed down a bit, only one in addition to therapy last week and thank goodness because I definitely needed a break from all that. It was getting to be too much and I wasn't handling life very well. I was tired, impatient with the kids, grumpy and snappy toward Lance, the house was a mess, and dinner was never cooked. The next two weeks however we see the neurosurgeon, neurologist, two scopes, a swallow study, and surgery all in addition to her therapies. Oh boy......I can do this, I can do this, I can do this.......

I should get Cora's reevaluation results this week and I'm anxious to see how she's doing. She actually made a sound in therapy - twice! - so we're making very slow progress there. Her physical therapy has really plateaued and hasn't made any progress in about five months. Ginette has worked really hard to get her ready to walk into the neurologist's office this week since he's the one who said she would never walk. She won't be walking in there but she's close and has been close for five months. One day she'll get it!

I've been giving diluted juice or koolaid instead of her water and she drinks it up instantly! I don't have to do water boluses anymore through the g tube and she's never been this hydrated before so she's doing great! We had a follow up appointment with the allergist and I have to continue doing the wheat, dairy, egg, and beef free diet for at least another three months. Pulmonology changed her lung medicine although I'm not sure she needs it. Ophthalmology is doing a tear duct probe surgery next week to fix her tear ducts. Finally! I'm so tired of all the comments about her eyes. Her vision is good although when she's looking at distances, her left eye does wander a bit. If it continues to get worse they will also do surgery on that in about a year or so. That's all I can remember, the rest of her appointments are a big blur. Too many last minute/not scheduled appointments to the pediatrician or urgent care. A lot of chest x rays, steroids, and antibiotics for both kids......I'm so tired of this! 

Oh, and MOM IS COMING NEXT WEEK!!!!!!!!!

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