Sunday, August 21, 2016

Cramming in the Normal

I realized I didn't post on here our updated surgery date.  If you don't follow me on Facebook, Abby's date was moved up to September 8th.  We were really happy about this because her kyphosis is getting worse and the concern for spinal cord injury is real.

I'm so thankful that Abby gets to start school on time, even if it's just for a week.  She needs that little bit of normalcy and it's a "first" that should be celebrated!

Speaking of normalcy, Matt and I talked the other night about our constant need to cram in as much normalcy as possible while we can.  Crafts, trips to the zoo, pool time...so much fun, so little time.  In my urgency to give them so much normalcy, I'm reluctant to just hang out and rest at home.  The rain today forced us to have a day at home.  After church, we got some things done around the house, the kids played Disney Infinity together, they went over to our neighbor's house for a little while, I made dinner, and we watched a movie.  It was nice to just take a breath and chill.

The next two weeks will be busy.  Tomorrow is my first day back to work, the kids start school next week, and Abby has PT twice this week.  Of course, I'm still trying to cram in the normal!  :)

Friday, August 12, 2016

CHOP Visit

We met with Dr. Campbell and Dr. Cahill today.  Turns out, they've been talking about Abby a lot--just not filling us in!  So at least we know that the decision was thoughtfully made.  Dr. Cahill will do the surgery with Dr. Campbell assisting, since he is the one familiar with Abby's "interesting" anatomy.

She has a complicated kyphosis and there's no perfect answer.  They will use a Shilla procedure, which is a new special cover that kind of expands itself as her spine grows.  This allows them to not have to fuse as much, therefore allowing for more spinal growth.  They will fuse T1-T6 (not in the c-spine as once thought).  Even with this procedure to limit the fusion, she'll be pretty little and the fuse could constrict lung development.  But the kyphosis already is anyway, so it's a toss-up.

Not doing it would mean her kyphosis could sever her spinal cord, since it's progressed so rapidly.  That statement freaked me out a bit, so we are definitely getting this fixed!

Dr. Cahill has only done 3 Shillas because this is so new.  (It was approved in 2014).  The unknowns about long-term effects makes me nervous, but they both think this is our best shot.  You kind of have to give up the unknowns when you have a medically complex kiddo!

There's no plan B at this point, but they will come up with something else if it doesn't work.  That's the thing about Dr. Campbell. He's not going to give up on a kid!

She will wear a neck/thoracic brace for 3-6 months with no PE or physical activities for 6 months. It's going to be a tough surgery and recovery, but if all of this will keep my girl walking, we will do it!

We are thankful for answers and are really glad we went up there.  Surgery still hasn't been scheduled because they are now trying to coordinate TWO very busy surgeons' schedules.  They promised to let me know by the end of the week.

We appreciate your continued prayers.  It's a lot to digest and we are also trying to support Abby as she shares her fears.  


Friday Funny



Wednesday, August 10, 2016

Answers....sort of...

We heard back from Dr. C that he wants to do a limited spinal fusion with instrumentation to correct Abby's cervical kyphosis caused by the last veptr surgery.  It was a 2-sentence email that left us with a million questions, so now we are going to CHOP on Friday (2 days from now) to have a sit-down and iron all of this out.  I think driving 8 hours in one day will be worth it if we get some real answers.  We emailed all our questions, but we are sure that those answers will bring about more questions...it's just easier to talk face to face and the nurse practitioner agreed.

Abby is understandably sad and downhearted, but her cousins and I went to Five-Below while she was at PT.  They each picked out something to cheer her up, and it worked. :)

We would appreciate your prayers for clarity and communication as we meet with the team on Friday!

Wednesday, August 3, 2016

Waiting


I haven't updated about Abby in a while, because there's not much to update.  She's still in pain and unable to walk for more than a few minutes at a time.  Thank goodness for the tiny kid carts at Trader Joe's that allow her to walk while acting as a walker!  Holding her head up is very painful when she is standing.  Her ENT, who knows Abby very well, was shocked to see the changes in her ability.  He said she had better be doing jumping jacks the next time he sees her!

We are still waiting for Dr. C to figure out what to do.  I emailed on Monday and he is on vacation this week.  I will be emailing again next week in hopes that we can finally get some answers.  

The researching I have done has shown me that whatever he decides to do will be complicated, painful, and challenging. It could require a lengthy hospital stay.  Right now, we are just praying that this can be repaired.  We realize that she may very well be out of school for a good chunk of time.  It's not what we want, but this has to be repaired.  It's getting worse and she is in more pain.

The other issue is that her ribs haven't been expanded since January.  It's been 7 months now, but I was told he would do it with this neck surgery.  The nurse practitioner finally told me in Monday to go ahead and schedule.  I called and the next available is November 1st....10 months since her last expansion.  That's obviously not ok, when it's supposed to be every 4-6.  So we are praying that something opens up, or it can be done during the neck surgery.  (Although, my thought is that this surgery will be pretty traumatic and Dr. C doesn't usually like to cause extra trauma in these situations).  

It is frustrating, to say the least.  We are trying to be patient, but we need answers.  Please pray they we get them soon so that Abby's neck can be corrected and she can begin to improve.


Wordless Wednesday


Monday, August 1, 2016

Gatlinburg: The Only Un-Fun Part

Go to the National Park, they said.  You can't miss that, they said.  It will be fun, they said.  

We really didn't plan on going to the National Park, mostly because we really can't do any hiking with Abby...but at the demanding urging of many people, we decided to go.  

Lesson learned.  Our kids don't like nature.  They complained the entire time and were so bored.  We drove an 8 mile loop going 10 miles an hour, thanks to the driver of a truck in front of us who really, really liked nature.  So yeah...not the highlight of the trip!

But I did get a few pictures that make it kind of look like it was fun.  :)  






This was pretty cool though--our friend's ancestors immigrated here and this was their cabin.  :)

20 hours later, we emerged from the National Park and redeemed the day with a yummy dinner.  :)