After dinner laughs

new mito doc

Yesterday we drove to Boston to meet Eve's new Mito doc. Her name is Dr. J and she is very young (younger than me, I think!). The specialty of this clinic is metabolics and genetics (as opposed to Dr. K in Atlanta who was neurology and the other Dr. K who was genetics). The Dr. spent a lot of time with us, and most of the visit was us giving background information on Eve. They measured her height (roughly 33 1/2 inches - she was screaming) and weight (30lbs 8 oz), and took a urine and blood sample. It was not very exciting nor impressive. What I mean by that is that we didn't learn anything, but rather established a relationship and baseline of sorts. The doctor was nice, but hesitant. I think she was afraid to upset Eve. She's going to write up a detailed letter about our visit and send it out to us and the other doctors caring for Eve. She wants to check the levels of B2 in Eve's mito cocktail with Dr. Korson (also at this clinic). He is more experienced I believe. She's also recommending a vision, hearing, and heart exam in the next year.
It was a long, but necessary, day. Eve was well behaved for 90% of it and even slept for portions of the car ride. We go back to this doctor in 6 months. Next up is Neuro and GI in March.

mother and daughter

back to normal

Eve seems to be doing fine. The reports from school on Tuesday were that she was back to her usual self. She seemed fine this morning. Still has a stuffy nose, but it's not too bad.

seizure

So, it looks as though Eve may have had a seizure in school today. The nurse called me to tell me and I asked that I get a detailed account of what happened so I could bring it to the neurologist. Here's the note that her teacher sent home:

"She may have had a seizure around 10:20 this morning. She was in her wheelchair and her head tilted back a little and was turned to her left. Eyes slightly closed, mouth opened a bit. Her color changed slightly and she didn't seem aware of her surroundings. It lasted about 10 seconds. When Sarah released the brake of the wheelchair, Eve began to move her head again, started [sic]. Her name was not called nor was she touched before she was startled by brake. When she was first in the classroom this morning she didn't seem her usual self, less responsive. Becky thought her color was a little off."

We're seeing the new mito doc this week and will mention this. I talked to the pediatrician today (about adding another dose of prevacid) and told her. I'll also tell the neurologist when we see him again. I don't think this is anything to freak out over just yet. We'll keep an eye on her. If this happens again, I'll call the neuro. Until then, we'll just wait and see.

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.

bowling

Here are the videos that I promised of Eve's new bowling set.

Christmas kisses

Here's a cute Christmas video of the cousins: