Today marks two weeks since returning to Florida after Christmas. Micah came back with us for the first week. It was so nice to have him with us - we’ve been really missing him. He helped entertain Dylann for a few days so I could get some work in. They got to swim in the pool and we have the best shops and activities to walk to!
Therapy went pretty well that first week. She had 4 days of active sessions really focusing on strengthening her quad muscle in her right leg. By end of the week she started getting frustrated. She’s trying so hard to move her knee and do things she’s just not able to at this point. We see a few different therapists and one of them started questioning if she has enough quad muscle to progress. There was some confusing notes in her discharge summary that says she has no distal quad (above the knee) so they were questioning if she’s going to be able to gain enough to walk without braces. So we ended that week pretty sad and discouraged. I was wondering if any of this was even worth it.
Jeremy came Thursday night before New Years so we were able to have a little fun that weekend. We went to the beach and hung in the pool, shopped, and saw some New Years fireworks.
New Years Day Jeremy and Micah went home but grandma came the night before for two weeks! She’s been so helpful to keep me sane :). Monday we had no work and therapy so we relaxed. Dylann started complaining of “heart burn” that day on and off a handful of times. By Tuesday she kept saying it and as we talked more about what heart burn felt like for her, she was having some sharp pains near her heart and lower ribs. She’s been having some GI/constipation stuff for the last year so my initial gut was it’s that and started her on a “clean out” Monday afternoon. That evening she was getting pretty worked up and scared thinking something was happening to her heart. Dylann is a very reliable person surrounding her medical needs so when she asked to go to the doctor at 9pm that night, we did. Not a fun situation when you’re far from all your doctors.
Luckily urgent care was quiet and they were so great. They did an exam and watched her vitals for a bit as well as took an X-ray of her lungs and stomach. Overall she looked great other then her tummy getting backed up again (as I suspected :) ). She calmed a little after the MD told her that her heart and lungs looked and sounded great - but the pain continued Wed and Thursday so she didn’t want to do much. It seemed to worsen with activity.
Last Thursday we saw her orthopedist again- some good and bad news :/. I asked about her quad and what’s realistic especially since she’s not ever used it being in KAFOs her whole life. He looked at her muscle function and told me that he feels confident she can gain strength there! He confirmed it’s going to take months of hard work beyond what is done while in Florida, which we will do and wasn’t an issue- just wanted to confirm we have realistic goals. He seemed very happy with her leg progress.
When he heard the update on her chest/rib pain, things took a left. He said he wanted to check her spinal cord. He had asked me to send her MRI disc she had done when she was 1 so he could make sure there is no tethering or other nerve etc issues. I tried for weeks and they still hadn’t received it. So after he heard about the new pain he says he wanted an updated MRI of her spine asap. This also didn’t move us to discussing when we can leave which I was hoping to make a plan for in next week or two. :(
So Friday our plans shifted to getting her a MRI. We had to cancel therapy to get there and then sat and waited two hours. We did it unsedated so wasn’t Dylanns favorite hour. They let me stay in there but she was pretty nervous and scared. She was able to stay calm enough to lay there perfectly still for 70 minutes. She said she kept thinking of shopping, the beach, and ice cream :). So….. we did all three of those over this last weekend. I’m amazed every day at home amazingly strong she is.
Friday she didn’t have any more pain. Saturday she did for a bit in the evening but it was lower in her belly. She didn’t have it yesterday or today. Yeah!!! She finished her “clean out” so I’m still feeling pretty confident that was the issue but sure resulted in a ton of extra medical visits, time, and costs. Thank goodness Grandma was here to help with the crazy last week. Hopefully she isn’t too traumatized by our crazy life.
We haven’t heard the outcome of the MRI as of yet from the doctor but I read the report in her online chart and it reads all normal. Hoping he feels the same. PT went well today - they spent a lot of time walking and stepping with her KAFO on (and sometimes unlocked). We see the MD on Thursday again and we’re really hoping we can leave on Friday. Dylann and I are both over it and not functioning at our best. Since the PT/rehab is going to need to continue for significant time we’d rather do at home if an extra week or two here isn’t going to move her significantly farther. Send warm thoughts that we get to start the drive home on Friday! We’re ready.
