We loaded up all our therapy equipment in the back of the truck and left early Sunday morning to start our 1-week intensive therapy schedule starting Monday at 745am. The drive took about 9 hours with the traffic, even on a Sunday. Once we arrived, we unpacked and went out to our favorite Chinese restaurant. Azalya loves the crab Rangoon’s and sweet and sour chicken there.
Monday morning, we started with MRI’s and then headed over to the clinic to begin therapies. There were 4 stations, and she would be doing each 2-3 times a day until Friday.
During our first 3 months we did our best to focus on all her therapies while building brace time. We couldn’t get more than 4-5 hours a day, and Azalya was still not sleeping through the night in the brace. The goal at this point was 20 hours a day in the brace, plus all the therapies.
So, our focus this trip was to get the brace fine tuned to be more comfortable for her. There were some hot spots that created discomfort and made her arms go to sleep. Some of the concerns were designed to be uncomfortable to correct her curvature, and some weren’t. So this took some back and forth to get her fitted properly. It’s pretty normal for kids to not be able to articulate what feels okay and what doesn’t during the first 3 months.
After we began to review the MRI images, we soon found out that her curve reduction hadn’t improved at the rate everyone expected. Which was a challenge mentally being we had put so much work into the last 3 months. But we knew why, and what we needed to focus on moving forward.
As the days went on, we met lots of amazing families, and Azalya met some really amazing friends. We were invited to pool parties, dinners, and even local baseball games. It’s truly a tribe of kids and families that are all going through the same journey that can be motivated by each other.
Every day after therapy we had something to do. BBQ, get in the hotel pool, and have a s’mores party with other families in the same hotel. This made the week go by very fast.
Friday after our therapies, we loaded all the equipment and prepared for the long drive home on Saturday. On the way home, we stopped at our favorite burger place right off the freeway. Azalya likes BLT’s, and they had no idea what that was until we told them.
Once we got home and unpacked, there was a sigh of relief knowing that we have a game plan moving forward over the next 3 months. Focus on brace time. Getting that time up to 16 hours a day minimum.
Until next time!
