After four months of living out of hospitals, we are finally saying goodbye to inpatient life. We bid farewell to our therapists and the staff of KKI after a long day of therapy in a mostly-empty gym.
Our long-time roomies, Frances, Mike, and Matthew left a day before we did, but even one night without them felt so lonely and awkward. We have grown to know and love them as our own family, so the separation got us both. Chris drove them to the airport and when he got back, he told me Frances cried the whole way there. I don’t either of our families expected the rush of sadness we would feel by separating, especially since we were able to connect on such a deep level. It’s a special bond we share because of our kids’ diagnosis. We truly know how the other feels without ever having to say it, just like many of the AFM parents. We’re a club. Unfortunately, none of us wanted to join.
I’m not sure if I had updated the blog after Laura and Francisco left, but if I didn’t, they left on the 2nd. We were so sad to see them leave, but Francisco was overjoyed. We loved seeing the smile on his face as he made his way to the elevator. We will forever cherish the relationships we established at KKI and look forward to seeing Francisco and family whenever we head out to New Mexico.
The day before the Parks hopped a flight to St. Louis, we all took a TLOA and went over to Elicott City to eat hot pot, a type of Chinese cuisine Frances had told us about. It was an amazing experience! If you’re never heard of hot pot, try it out. You’ll love it.
We also went through Elicott City’s main street downtown and walked around to a few of the shops. We explored the B. & O. Railroad museum which is apparently the oldest train station in the U.S.
Of course, we snapped a few pics for the blog.
The last two days in the gym felt very lonely. We were one of the only families in the gym as Annadelle finished up her last sessions, but the therapists and techs especially tried to make up for the emptiness. One of the techs, Nadine, played a pretty long game of hide and seek with Annadelle while she was in the stander. Normally she complains after being in the stander for about 20 minutes, but when Nadine distracted her with the hide and seek, she was in the stander over an hour without complaining. Our PT recommended a stander for home use and has sent the prescription to our local medical supply dealer, Jeff with Coastal Medical. Once we get home, we will need to speak to him about the stander and a titanium wheelchair with power assist.
We are now at our hotel for one last night before heading into D.C. tomorrow. Dr. Moore’s office said they would let us know tomorrow whether or not they could fit us in for a consult before heading back to Alabama, so we’re going to spend the weekend in D.C. while we wait word from Dr. Moore’s office. If for some reason they cannot see us early next week, we will head home to Alabama.
Please continue to pray for our sweet girl in the upcoming months. We have a lot of work to do and are continuing to keep faith that Annadelle will be completely restored. I felt that we had taken a step back since her therapists did not feel like she has enough strength to continue with inpatient therapy, but Chris has reminded me that what we ask for in prayer, we will receive.