So....
We are going back!
Most of you guys "know" Lauren - former wish child from 2008. She has had a lot of challenges over the past year and should find out on Friday if she is going to be able to have a "big" - I think it is huge - surgery on her neck and hips. She is already fused (with rods and screws) from the lumbar region up through the thoracic region. But her neck is now very crooked. Normally they do not do this type of surgery on the neck - they usually do PT and the children (who are usually much younger) just grow out of it.
But so far Lauren has not really responded to anything we have tried to do to help her - PT, swimming, and two different chair modifications.
So...she is meeting with two neurosurgeons on Friday to see what they can do to help her. I will keep you posted on that.
I believe the surgery will be to put rods and screws in her neck up to the back of her head AND to fuse her spine to her hips. Which would hopefully get her straight and keep her straight. But the doctors don't want to do the surgery. Evidently it is a very difficult recovery and the surgery itself is dangerous since the upper spine is a lot smaller and she could lose all function below her neck. This would be terrible for her - but the way it is now is not working for her either.
Anyway...all that to say...Lauren needs a break (and so do her parents and little brother!)...
Lauren's little brother and her Dad are going on a church trip over Spring Break - so we planned an all girls getaway to Disney.
The CAST:
Lauren - former wish child - "unknown" diagnosis - they are
positive now that it is
not CP, it is too progressive to be called CP, but they really don't know what it is - she has been tested for mito, but we won't know those results for another few weeks. (her medical records all say CP because they don't know what else to call it)
Jessica - Lauren's best friend - also uses a wheelchair (spinal cord injury from a car accident)
Jordan - Jessica's sister - she is coming to help Jessica and be an extra set of hands and because she is just cool and we will have fun!
Lisa - Lauren's Mom - who really needs a break!
and me!
We scheduled this last year...then our church started this cool campaign called "Outlive Your Life" that focuses on missions...so Lauren caught on to that and really wanted to go to Mexico on a mission trip for Spring Break - so we canceled Disney.
But...turns out it was not safe to go to Mexico and the church eventually canceled the whole trip (and every other trip to Mexico for the near future).
So...then Lauren wanted to go with the middle school students on their mission trip - but it was just going to be too much to try to get her in all the places they were going and she can't do as much as they would like to have her listed as a chaperon (is that how you spell that??) - which I understand.
So...last week - last Thursday night - we decided that if all else fails she should just GO TO DISNEY!!
So the trip is back on!
And I have a whole three weeks to plan...which is now down to less than two weeks!
Here is our tentative schedule:
Thurs March 10 - pack and get luggage from the girls to make sure it fits in the van
Friday March 11 - right after school - head to Disney! the van will be packed - we will take care of all bathroom stops at the school before we leave town. We will try to make it half way or more.
Sat March 12 - sleep in some, drive the rest of the way, check in (we are staying at Bonnet Creek on points from Jessica's family in a 2 BR condo), go to the store for snacks, food, etc...
Sun March 13 - MK
Mon March 14 - Epcot
Tues March 15 - AK
Wed March 16 - MK and AK - depends on what we missed at either - may end up with a Park Hopper so we can do both if we need to.
Thurs March 17 - DHS!
Friday March 18 - DHS or whatever park we missed
Sat March 19 - drive back. Lisa wants to leave before Dawn to get on the road. We will drive all the way back - no overnight stop.
I say all of that here so that you guys that are going to be there can check your schedule and see if there is a way we could meet up - if you want! Or we can at least keep an eye out for you guys. We may not be hard to miss - since we will have two wheelchairs in our party.
It is going to be an interesting trip for us, because Lauren can only ride certain rides and Jess and Jordan can ride the big stuff...so we will be doing some splitting up. But we are hoping for a relatively stress free time since we have twice the amount of Disney time this trip than we did on the wish trip - and hopefully Lauren will stay WELL (and hopefully the rest of us will too!)
I have ordered T shirts for us and we have had some cool designs made by the awesome folks on the DISign board - so now I just have to plan the details, get some ADR's (ha!) and go for it!