Bad Hair+New Chairs+Cool Wheels=Crazy Week

Celia went with Daddy today to have an EEG. There is a chance that she is having seizures because of some tremors we have seen, so we should get the results in 7 days. On the way home, I asked Daddy to stop at the store for something. Now here in the South, people KNOW us at our store. I had no idea what Celia's hair would look like post-EEG or I would have NEVER, EVER let Daddy stop at the store.
Being the good Daddy he is, he slicked it down the best he could. However, despite his best efforts, she had some pretty WILD hair. Haha! I can only imagine what everyone thought of my wild child:
"Did Mommy go on strike?"
"Is she out of town this week?"
"Is that girl getting electric therapy?"
"Are they homeless?"

"Does that baby have dreadlocks?"
Jaws will be jabbering about this one for sure!!

In good news, Babies Can't Wait (our local GA home therapy option) is loaning us this uber-comfy chair for Celia until she turns 3. Seating is ALWAYS an issue with her, and many times we have no safe solutions, so we lay her on the floor. This nifty seat detaches from the base, and can be strapped to any chair. Easy to take to friends houses, or to a restaurant. It buys us a few months to see if we can find one on ebay. Love, love that hair! Hee-hee!

And in more exciting news, Celia is the proud owner of a brand new wheelchair.

I have to admit, it makes me a bit sad. It could be me, but being in a wheelchair has a stigma attached to it. I'm so afraid people will not see "adorable twins" anymore, and only see a special needs kid- "How sad." With lots of "poor you" looks.

And why should I care what people think? Well, anything that makes her "less of a person" in other people's eyes just hurts my Momma heart.
It. just. does.

She is SO MUCH more than a kid in a wheelchair. I say it often, but I really and truly think that everyone needs a Celia in their lives. Dare I even say that I think people are missing out without a Gianna or Celia in their lives. She is AMAZING and HAPPY and WONDERFUL most all of the time. She is a JOY and a MIRACLE and we adore her. Too many people miss out on the real meaning of life- Celia keeps me grounded on what really matters.

Here is the side-view. It has the ability to recline fully so if she is having a rough day holding her head up, we can recline her as much as she needs. On good days, she can sit upright. Oh, and she glows in the dark. Aren't all the other kids gonna be jealous at Disney!

I do think however that you can purchase a CAR in a shorter amount of time than a wheelchair. We left the house at 1:30 PM to get this lovely little diddy and got home at 6:55 PM.

Oh yeah, and speaking of cars, we bought Celia her very own wheelchair transporter a few months ago in anticipation of this:

This truck is a BEAST and guess what?!? That darn chair just B-A-R-E-L-Y fits in the back.
On it's side.
Yup, there is no way it would have fit in the back of my minivan.
Just between you and me, I am now pretty smitten with the heated seats, so I'm totally relieved that even though it's a tight fit....IT FITS!!
No 15 passenger van for me!
Yet.

She has now achieved "coolest kid in the house" status. She has so many fun seats, gait trainers and now this cool chair, that the girls are fighting over who gets to push her/sit with her/ chase her/ etc.

We actually aren't going to use the wheelchair in the house. We have gotten her to roll end over end in the house to get where she needs to go, and we also have two gait trainers (one is work to help her walk, and one is fun and she can scoot after her sisters easily) so we don't want her to get lazy and think she can use her chair and be pushed around all the time.

It is primarily for school in the fall, but it will also give us time to get her totally comfortable in it. We plan to use it out and about only.

And since we are in full Celia Update mode, here goes:

Celia had some freaky blood results as I have mentioned before. Her paperwork was sent to a Geneticist who specializes in Mitochondrial diseases.

Many, many mito diseases are.....are..... terminal.

He reviewed her paperwork and agrees that she needs to be seen and tested.
I was secretly hoping that he would review her stuff and say she's fine.
Since he didn't, we are waiting for an appointment.
Unfortunately, he is out of network for our insurance.
He is hoping we will pay for his new Porche, so he requires a LARGE deposit before he will even see us.
Makes me not like him too much, and I haven't met the guy.
"Hey, these people have a special needs kid, let's gouge their eyes out and leave them penniless And lets do it before they even come in."

Being that the genetic testing she needs may be $20k or more, and may take 5 months to get the results of the sequencing, we are going to see if Emory has a Mito Guy that is in network. We obviously cannot wait long to get this ball rolling- we need to get her started on any meds that might help her longevity.
Did I just use the word longevity in reference to my two year old daughter???
How did we get here?!?!?
Honestly, I am praying this is all just a bad dream. I will wake up and she will have CP and the tests find nothing.
Head is going back in the sand now. I can't think/talk/type about this anymore.
Thanks. Bye.

Everyone wants to be cool like Celia.