sleepy floppy

I just wanted to note that Eve has been sleeping a lot lately. She slept until 8am on Sunday, took a 2 hour nap, then slept for another 12 hours that night. Yesterday (Monday) she did not take a nap, but slept from 7-7 without waking up. This is a welcome change and I think mostly she is getting tired from school. I just want to mention it because it is a change. Also, school said she was more floppy than usual yesterday. I'll be keeping an eye on this.

Rocking a little JT

Jim surprised me with a new Flip video this weekend. We had some fun with it tonight after dinner.

Looking back: Pictures before the blog

I was looking at Eve today and thinking how much she's grown. She's got a little kid face now. Sometimes I look at her baby pictures and she looks like a totally different baby. So I thought I'd post a retrospective in pictures.

ride 'em monkey!

Jim set up a monkey rodeo in Eve's room. Hilarity ensued.

new pediatric Neurologist

We went to the new pediatric neurologist in Springfield yesterday. It was a good visit. He's a young guy - I think maybe about my age. He has worked with Mito kids before (with another doc in Boston), but was quick to state that he is no expert on mito at all (which I appreciate). He asked a lot of questions about Eve's past and present. He thinks that the 2 episodes that I described were indeed seizures (these happened when she was 2) and that a normal EEG doesn't mean they weren't. He thinks it is very possible that she will end up having seizures one day (again).

He wants to put her on a mito cocktail (a mix of medicines and vitamins that sometimes help functioning of mito patients). I am hesitant because when she was on CoQ10, carnatine and riboflaven we didn't notice any improvement and the CoQ10 is very expensive. He said he has had luck getting it approved by insurance. Jim is very interested in getting her back on meds to see if they really were working, so we will definitely try it.

The neuro also wants Eve to see 2 other specialists. First, a mito doctor in Boston (just to see if she wants to tweak the cocktail formula), but he understands that a 3 hour trip is not something we want to do all the time unless we have to. I think he is looking at this as a one time deal. Second, he wants her to see a doctor in Northampton. I can't remember the type of specialist, but I think it was a physiologist or something. Basically, the kind of doctor that would inject her with botox if her muscles got to be too rigid and stiff. He also said that there are oral medications that would relax the muscles, but they sometimes have a sedative effect on the child. Right now we are holding off on the meds (her stiff tense muscles are not interfering with diaper changes or dressing), but will establish a relationship with this doctor for the future. Apparently this doc can help with braces and equipment (in terms of letter writing, etc).

The neuro wants to see her again in 6 months, but sooner if she has a seizure, a major regression, or has a body jerk or startles when there was no noise to startle her.

I really wish that Jim could have come with me because I feel like I am forgetting so much. Also, there are questions that he has and things that he notices that I don't remember to address by myself. Next time he'll come.

Last night was open house at school for Eve. We met some of her classmates. Marquesa is enamoured with Eve and I think it is mutual. Also, we saw Krish and his mom. She told us that from down the hall he pointed at Eve and said, "That's my best friend, Eve." I am totally tearing up as I write this. This is why she's in school. This is what I can't give her. I am so happy that she is doing so well in school. We love her teacher. She asked for us to bring Eve's wheelchair tray in to school. She explained that when they are in circle, they use a button to speaks for Eve. They were presenting it when it was time to use it and Fern (the teacher) didn't want Eve to just press it because it was being presented. She wanted Eve to understand when to press it. So they use the tray and put the button in reach and she presses it when appropriate. I'm just so glad that Eve is in this classroom.

Car seats, new school and dogs

The new car seat came! It is great. We tease Eve and tell her that she looks like a mama bird in her nest. It's like we took our Lazy Boy from our house and stuck it in our car! Thanks to those that shifted their Kiddie Pool donations!!

Eve started school this past week and did great! She spends the whole day there and comes home TIRED. No tears, and she even napped on Friday. She has slept better this week than she has in months. She also "laughed with glee" at her classmates dancing. Jim and I are interpreting that as her trademark squeal of happiness. She has charmed the pants off everyone of course. I was even in the grocery store with her today and a woman came up to me, "Is that Eve?" Her twins are in Eve's class. Too funny. We are very very happy with her school and apparently so is she.

Today we were evaluated for a PCA (Personal care assistant). A nurse and a therapist came over to find out about Eve's care and abilities. They are going to recommend 22 hours a week for a PCA. Now we wait to see if MA approves this. We can start looking for people to hire, but we need to wait to see how many hours a week they can work. Pretty neat. We might be able to stop paying for daycare and have someone help us out in our home.

Let's see...what else? I'm still trying to figure out equipment. I called Shriner's hospital, but they won't see her just for equipment. She has to be a patient there for medical care first. Hmmmm....so I don't know what to do. Does she need an orthopaedist? I'll have to email her physical therapist.

By the way, this is how I am trying to type right now. Oh, and it was super hard to get this shot with my left hand. My right hand was trapped.

Enjoy your weekend!

observations

We're wondering about possible cognitive slip with Eve. She seems to say no when we know she means yes. One other thing I want to put here (more for my purposes than yours) is that I have noticed she has less control of her hands. She is dropping her toothbrush in the tub a lot. She never used to drop it.
Oh, I plan to call Shriner's hospital in Springfield tomorrow. I want to see if I can get her into a seating clinic because she is outgrowing her wheelchair.

4 year well visit

We had Eve's 4 year well visit today. I really like this new doctor. She spent about an hour with us. Amazing. Anyhow, here are the stats on Eve:
Weight: 28.8lbs (4th percentile)
Height: 36 inches (1st percentile) she grew!
BMI: 15 (60th percentile)
So, she's tiny, but not too skinny or fat.

Just for fun