mito cocktail

Just wanted to mention that Eve started the Mito cocktail on Saturday night. She gets 2 tsp twice a day. She wanted to take it by mouth at first, but didn't like the taste and spit it out. So we have been putting it in her feeding tube. I have to say this was the very first time that I was glad we had gotten that damn tube. Up until now it has been WAAAAY more trouble than it's worth. At least now we will be using it reliably. Hopefully that will translate into Eve being less protective of the site and of people handling it. I'm not saying she won't scream bloody murder next time we go to the GI doc, but maybe she won't scream as long. heh. heh. I hope.
Anyhow, the cocktail has a whole host of ingredients including: CoQ10, carnatine, riboflavin, and other vitamins. We'll see how it goes. I am not optimistic because she was on three of these meds before with no change in functioning.

H1N1

Some folks have been asking me what I will do about the H1N1 vaccine for Eve. I have been hesitant, and really thought I wasn't going to do it. However, Eve's pediatrician wants her to get it. Also, there was a letter posted yesterday on the UMDF site from Dr. Cohen regarding H1N1 vaccine and mito patients. You can read it here. So, I just need to talk to Jim and then I think we'll take her in for the shot (and it is the shot and not the mist that the ped's office has).

wheelchair clinic and AFOs

I forgot to mention that last week Eve had appointments for a wheelchair clinic and to get fitted for new AFOs (ankle foot orthotics). She is still incredibly fearful of medical settings. The wheelchair clinic was not too bad, though she did freak out when they measured her for the chair. We're ordering a Zippy Iris with lots of accessories (tray, stroller handlebar, etc.). It's a really nice chair with lots of room for growth. With a click it will tilt back while she's in it so that it can relieve pressure on her rear and generally be more comfortable for her. It will take a while to get through insurance. The DME rep said that maybe in January we'd get the new chair. The positioning chair that we ordered from Eve's kiddie pool is supposed to arrive on Wednesday. I will post lots of pictures!
The appointment for the AFOs was a NIGHTMARE. She screamed bloody murder the entire time. She really was scared and didn't calm down until her coat was on and we were ready to leave. The orthotist simply did a casting of her feet/ankles/calves. Simple and painless and I held her and comforted her the whole time. But you would have thought he threatened to rip her legs off and beat her with them. We go back in a few weeks to pick them up. I think Jim might be taking Eve for that appointment.

Josie is cold

pictures from school

Here are some pictures that Eve's teacher took at school. She really really loves school. Also, apparently one of her classmates saw her feeding tube button and asked if that was where we blew her up with air. Too funny!

Eve's been gagging a lot lately if her head goes back or sometimes if she lays on her back. This morning she actually threw up a little after gagging so hard. Jim doesn't think it's the saliva pooling in the back of her mouth - he thinks it's her tongue. He said he has seen it go way back and that maybe she doesn't have the muscle strength/control to keep it from going back. Good thing she sleeps on her stomach.

Fall Foliage Parade

This weekend my parents came up for a visit. The town where I work was having a fall foliage parade. The Budweiser Clydesdales were in the parade. We were able to visit them the day before the parade. Wow. Wow. They sure are huge. Much bigger than the Belgians that Jim and I used to work with. Eve was not a fan.

The next day we went to the parade. It was a lot for Eve (and me). It rained a little, it was crowded and it was loud. I think each year, we'll probably stay a little longer. We really didn't stay too long. But, thanks to some warning from Eve's speech therapist, we were ready for all the sirens.


Unfortunately, the clydes were at the end of the parade so we didn't see them march. Next time perhaps. At least we were able to see them up close.

Thank you!!!!

Thank you thank you thank you!!!! Our friends and family are truly very amazing and generous people. I am stunned by your outpouring of support for Eve. I have great news. This week we reached (and exceeded) our goal for Eve's kiddie pool. I just got off the phone with the folks at Adaptive Mall and we were able to order the positioning chair for Eve. Not only that, but we were also able to get 4 very important accessories (2 of which we had not budgeted for): An adjustable tray, fixed lateral supports (to keep her from slumping to the side), a head rest (to help with head control and for comfort when she is tilted back in the chair), and a cross vest (for more chest support so she won't slump sideways or forward). So now we wait for her tricked-out chair to be shipped!
I am seriously overwhelmed at your kindness and generosity. I hate that life has dealt us this shitty position, but it has shown me how much we are loved and I can't thank you enough. I promise to take lots of pictures when the new chair arrives. Thank you!