kitchens and doctors

Another moose meat culinary adventure. I paid homage to the time we spent in Georgia by making some chicken-fried moose steak. It was sooooo good. I learned from the best. It always seems that Jim calls Brad every time I make chicken-fried steak. Maybe the next time Jim calls he'll ask, "What was for dinner? CFS?"

Speaking of culinary delights, one of Eve's Christmas presents was a cookie press with decorating tips. I put some frosting in it and she "helped" me frost the cupcakes.

Here are some super cute shots of Eve snuggling with Jim:



Let's see...other things. We went to see the physiatrist before Christmas. He made several recommendations - some of which we will wait on. He recommended hand braces to keep her thumbs from tucking in and to keep her wrists from bending down. Those are ordered. He also recommended she sleep with knee immobilizers on to prevent (further) contracture of her hamstrings. We are going to wait on this. It's my feeling (and that of other people who work with her) that the knee immobilizers will interfere with sleep. Right now I need to look at the big picture. If she ends up with muscle contractures, we will worry about it then. If she is not sleeping, I think we will see a very sick little girl and might see regressions. So for now, I feel we are making the right decision. Finally, he recommended a Rx for Baclofen which is a cousin of Valium and would be given to relax the tone in Eve's muscles. Although she is hypotonic in her trunk and other muscles, she has moments of intense tone that can make it tough to dress her. But, she uses that tone to support herself and to do things. Because the baclofen is oral and systemic, it could reduce tone in her trunk and might also affect her head control. So, on this we will also wait. It is reversible, but I think we are still gun shy from our g-tube experience. Right now we just don't think she *needs* it. I prefer to wait until she does. This kid has a tough road ahead of her and I don't want to get bogged down in treatments and procedures that might help something small. I really don't want her life to be full of medical crap (it will be at one point anyhow), I want her to enjoy her life while she can.

One other note- we took Eve to the pediatrician on Friday because she's been spitting up and having many wet burps lately. Also, she's had a stuffy nose again and we are watching that. It's been about a week, but isn't as bad as it was before Christmas. I did notice some coughing today. Will also keep an eye on that.