I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, August 1, 2016

Wow, Where Has The Time Gone?

I cannot believe it's been months since I've had the chance to blog.  I have heard from quite a few people who follow Alex's blog asking how she is and I can't begin to tell you how much I appreciate all of the love and prayers for her...and us.

I have SO much to catch up since my last post.  Life has been crazy since Alex got out of the hospital and we've had to adjust to a new norm and there's lots to catch up on, but I think I'll start with the latest and try and work my way backwards!

Last week we took a quick (if you consider a 7 hour trip quick!) road trip to Shriner's Hospital in Philadelphia for a second opinion on Alex's spine.  We were scheduled for a full spinal fusion at the end of August and my gut was just telling me to get a second opinion.  We were told that the doctor's at that hospital were the best of the best when it came to the spine so we arranged to meet with their spine doctors, their cerebral palsy team and their pain management and rehab team.

For weeks I had been trying to get a hotel room for us with no luck.  I finally put an application in for the local Ronald McDonald House.  When they called to say they received my application I mentioned that I had tried to make multiple hotel reservations but couldn't find a hotel and she responded - "...and you're not going to find one...it's the National Democratic Convention, everything that can be booked has been."...AHHH, story of my life - OF COURSE our appointment would be scheduled in Philadelphia at the same exact time of the convention!  If you ever have to book a room at a Ronald McDonald House, they don't know what their schedule is ahead of time, they don't know if families will actually check out when they are scheduled to, they don't know if emergencies will come in, so they cannot tell you if you have a room until the day of your arrival - and that time can be between 10AM and 1PM.  Under normal conditions that would be fine because I could have had a hotel as a back up but under these conditions it was just another major stress factor. Thankfully as we were packing the car up we got a call that they did in fact have a room for us at the Ronald McDonald House - Whew!

I have to add that I have the best friends in my life, I honestly do.  The night before my friend Sarah had given us this "go-go" bag for the car that had snacks, wipes, tissues, mints, and gum:

...and the morning of our friends Bob and Kate delivered this cute backpack to her with snacks, books and magazines. My friends also know me SO well that each bag contained a little travel wine bottle :) 

Tuesday morning we had to be at the hospital at 8:45AM - I explained to Alex what was going on, who we were meeting with and why - explained there would be "no ouchies" only talking - but she wasn't having it and was pretty grumpy when we got to the hospital - Aaron had to keep walking her just to keep her content - if he stopped, she threw a little fit.

When we got into the room she was all smiles so I thought we were good!

...WRONG!  As soon as the doctors came in she had an absolute melt down - she screamed and cried so loud I could barely make out what the doctor was saying.  He was so understanding and compassionate and said he understood how scary it could be and continued to talk over her screaming until Aaron had to finally take her out of the room to calm her down.  PTSD at it's finest :(

In short, it was a great appointment - the staff at the hospital could not have been more friendly and accommodating, the pain management team thought she looked great, the CP team gave us their thoughts on her orthotics and braces and then we have an appointment in 6 months to go back to Philadelphia to meet with the spine team again.  

Once we got in the car to head home Alex was back to her happy, smiling self.   Eye of The Tiger was playing on the radio when we got in the car - Alex loves music and she was happily tapping her feet to the song - which I thought was a pretty appropriate song for the day!

Once we got home the trip had taken it's toll on her and she passed right out and slept the entire night.

So, the best news of all is that the spinal fusion for August has been CANCELLED!!!!  When Alex had her x-rays done in April, her curves were at 44 and 45 degrees.  The x-rays in Philly measured her curves at 32 and 34 degrees!!!  THAT IS HUGE!!!  The doctor said that he was pretty sure once she was out of the brace for a bit she could be closer to 40 degrees, but even in her in-brace x-rays in April she was still in the 40 degree range so I am SUPER ENCOURAGED by the progress we are making!  It still pains me to look at the x-rays and see how curvy she is and how off her hips are, but we're making progress and the curve is not progressing at this point!!!

The doctor did say that he was pretty sure Alex was going to have to have the surgery at some point down the road but it was not as imminent as the surgeon's were telling us it had to be.  I needed to hear that.  I needed to hear that I wasn't comfortable with her having the surgery because I was making an emotional decision.  The Philly doctor said the same thing I have been saying all along and that is she is still too thin, she's had a tough year and needs time to recoup her strength and energy.  I needed to know that her lungs weren't in danger and that my emotions were not making the decisions for me.  So our marching orders were to keep doing what we're doing and we'll regroup in February.  So we'll keep wearing the brace every day:

And she'll sleep every night in her DMO (another form of a brace), which she clearly doesn't mind:

I know so many people have been thinking about Alex and praying for her.  Please continue to keep the prayers for her spine coming!  I feel like a HUGE burden has been lifted off my shoulders now that we don't have the surgery looming over us and we're looking forward to enjoying the rest of the summer!