I promised an update on Lauren...(sorry, this is long - feel free to skip it - it has only a little to do with Disney)
I was hoping to have a surgery date or something like to report - but no such luck yet.
We met with two different surgeons. Without going in to a ton of detail, they basically said that they thought Lauren's problems with her neck would continue to get progressively worse if we opt to not do the surgery at all. Wheelchair modifications have not worked despite multiple attempts and they don't believe they will work in the future to control her neck curvature.
Lauren is not in a lot of pain, but she is never comfortable in her wheelchair. And the way she sits pushes against her lung and is causing a further diminished lung capacity. She can't really sit through a whole day of school without being really worn out. Fatigue is a major issue for her.
So...status quo really isn't working. For Lauren to continue going to school - including college next year - she will need to have some sort of relief from this.
But the surgery is a big surgery. They would go in from the front of her neck and the back of her neck and break some bones, straighten her spinal cord, add rods and screws to her neck up to C4. C1 is right under the skull and C4 is below that, but not much.
This surgeon has a great reputation and has done countless neck surgeries over the past 30 plus years. He is well known for being conservative in his approach and being a surgeon that takes on tough cases where he basically has to "make it up as he goes along" - But he has never done a case like Lauren's. In fact, he is not sure anyone had done a case quite like Lauren's. Evidently most curves are forward or spondylitic?? heck, something else I can't remember. Lauren is quite unique.
From the people I have talked to - both at this meeting and just contacts in the medical field - it seems like this surgery is normally not attempted for children, because most of those children are very low functioning or have co-morbid conditions that would make surgery like this impossible. Lauren is unique in that she has the potential to go to college and is really in fairly good health. That seems strange to say - but aside from the fact that she can't sit up, has low lung capacity, etc - she really is pretty healthy. She takes very little daily medication, doesn't have any type of seizures or anything like that. She also bounced back well from her last back surgery when they put rods and screws in her back (after the initial complications).
Anyway...the main risk for the surgery is that there is chance that moving the spinal cord back into a straight line will cause a spinal cord injury during the surgery. She would possibly be paralyzed from the neck down. Lauren has very little function in her arms - but she is able to drive herself in her wheelchair with a joystick, type with her thumb, text with her thumb, etc. So obviously this would be something that we would want to avoid. He said the "percent chance" of her having a paralyzing event in surgery was anywhere from 6-12%.
It seems hard to know since they really don't have a good handle on what her disease process is, I guess.
My gut is that the risk would be a bit higher than that - but I am not a doctor - so take that with a grain of salt.
I have faith in a good God that has a plan for Lauren's life and I think that His plans will prevail, no matter what the stats say. We trust that He will work this out for His glory - and frankly He could use anything from her death to a complete and lasting recovery. We trust Him to do that.
They have not decided whether to do the surgery or not. Lauren has a weeks worth of exams, a major paper due Monday and an AWESOME Disney trip (6 more days!!!!!). Lauren decided to put this "in the box" and not think about until she gets home from that trip.
In the meantime - I am hoping I can solicit some specific prayers from anyone inclined to pray for Lauren -
1. That they would make a good, informed decision regarding whether to even attempt the surgery at all. I want them to have a peace about it.
2. That they would either have a peace about NOT seeking a second opinion or that it would be possible to quickly seek a second opinion.
3. Timing - Lauren is graduating this year, has her senior church trip at the end of May and wants to start college in the fall. This surgery has a 2-3 month recovery time assuming no complications - so the timing of the surgery is important. We are hoping she can do all of those thing - graduate with her class, go on her last Chi Alpha trip AND start college with her class in the fall - but that may not be possible. So we are praying for the timing to work out the way it is supposed to.
4. To start praying now for her surgery - that there will be no complications or anything that will cause her further difficulty. This would include her platelet count - because that was the main complication last time that was quite life threatening.
5. For their family - too much to type here, but that her family will be able to cope with another stressor. I have never met a family that has as many stressors as this family.
I appreciate you guys allowing me to share all of this. I am re-starting her Caring Bridge in the next few days and will be providing more information in the days and weeks to come through that. I wont hijack this thread too much for major updates from here on.
Once I restart her Caring Bridge, I will post it here and put it in my siggie so you guys can follow along.
GKTW only serves breakfast and dinner in the Gingerbread house, however, you can have Boston Market food from Katie's Kitchen at any time of day. You can either stop in to pick it up or call for it to be delivered. You can also order a pizza anytime up until 10:30pm. 
YAY!!!
