dr updates

Last week we went to Boston to the Mito doc. We spent about 2.5 hours there and did a lot of talking and updating. She took a lot of blood samples for testing. Some routine, some not. We are going to do the full mtDNA sequencing. Apparently, Dr. Shoffner only did a focused mtDNA sequencing. The hope is that finding where a mutation is will help with treatment. If nothing turns up on the mtDNA, then we will do a focused nuclear DNA search based on her presenting symptoms. We won't be able to do a full nDNA sequencing because it would take too long and cost too much (there is so much nDNA that would need to be searched). So, that's in the works. Also recommended is an eye exam (already scheduled for August), a possible visit with a urologist (Jim and I still have some urinary concerns), and a call to the neuro because of her increased floppiness. Ever since Eve threw up in the beginning of the month she has been extra hypotonic. I talked to the neuro twice on Thursday. He contacted the mito doc to see what blood testing had been done (he wanted certain things like a blood cell count). Some of what he was looking for was done (and was normal) and something (I can't remember what) was not done. He's going to mail me an order for a blood draw that I can do at the local hospital. After that, we will just wait to see him in September for our semi-annual followup.

Strep is floating around Eve's summer program. We are crossing our fingers.

Happy Birthday, Eve!

About a week ago, Jim, Eve, and I went to NJ for a family wedding. Here's a shot of Eve chillin' in the bean bag chair at my parents'. What's really funny is that when Eve is not sitting in it, Josie is.

Jim's mom got an ice-cream cake for Eve the day after the wedding. Even though Eve's birthday wasn't until this past Friday, she wanted her family to help Eve celebrate. Of course Eve loved it.


Here's Eve chewing on her magic finger.

And here is her birthday breakfast (on her actual birthday) with Jim and I. I just can't believe my baby is 5 years old!!!!! She is really growing up.

kiddie pool is over

So thank you so much to the quick acting folks (you know who you are) who helped us get Eve's new soft touch sitter in record time. It has been ordered and should ship in about 2 weeks. We are very excited.

Eve had a wonderful birthday. The celebration seemed to stretch out for a week. I'll post birthday pictures soon.

My kid the heart-breaker

Eve started her summer school yesterday. She loved it. She came home so happy and chatty. She also made a friend. The class walked to a play at the theater festival on campus (her summer school is on the local college campus), and a little boy in her class insisted on sitting next to Eve. At one point during the play, Bonnie (Eve's aid) looked over and saw them holding hands.
Little heart-breaker!

hot

Eve seems to be doing much better today. Her appetite is back and she is in good spirits. However, she's been really floppy today. I am not sure if this is because she got sick yesterday or if it's because it is so brutally hot today. Her bedroom is the only room with AC, so she is spending most of her time in there. Tomorrow she will start her summer school program, so at least she'll get to spend the day in AC then. I'm looking at the thermometer in the living room and it's reading 87 degrees. Inside. Fortunately, her room is 75 degrees. :) Maybe I'll sleep on her floor tonight!

ick

This post is really just for documentation purposes. I find that lately I just can't remember what happened which day of which week when we're talking about symptoms with Eve.

We were going to drive to a lake in VT with a friend this afternoon. Eve was up late last night (1.5-2 hours past bedtime) because of a party, so we put her down early for nap (at noon) after a light lunch. She went right to sleep. At 1pm we woke her up and stuck her right in the car. We drove for a half hour when she started smacking her lips and gagging. She spit up a bit of the bread she ate from lunch. Then about 3 minutes later, threw up the rest. We turned around and came right home. She seems to be in pretty good spirits. It's very hot today, but she had been sleeping in an air-conditioned room and the car had the AC on. I am hoping this was just motion sickness because we woke her up from a nap that she really needed and stuck her in a car. She does not have a fever, although her trunk seemed warm to the touch. I'm not sure if her lethargy is because she's sick or because she was up late last night. We're just going to watch her and give extra cuddles. I'll also slowly start giving her water (a tsp at a time every 15 minutes or so) soon (it's been about 90 minutes since she vomited).