I am going to break the trip up into a couple of posts. That way if I ever look back on this, it won’t be so overwhelming.
The trip up went very well. Logan did a great job in the car. We only had to stop for 30 min both ways for him to eat and do a diaper change! I posted about the sleep study online already. Not much to report from that front. Fingers crossed we hear the final results next week.
We met first thing this morning with Dr. Connolly and her assistant from the neuromuscular division. They were extremely nice and prompt. They asked a lot of background questions on us. I suppose to add to the collection of data. We talked about her experience and how she has dealt with each possible route of care (palliative, noninvasive, invasive).
Dr. Connolly said Logan is for sure type 1. He is not a stronger type 1 like we personally thought. I remember her saying his chest is only 24 inches around which is newborn size, but I’m thinking I heard that wrong. I need to measure him soon to check that out. He also has scoliosis, which makes sense after we sat and thought about it. Dr. Connolly says if he doesn’t develop a repository illness he could live another 6-12 months.
There was a study we were hoping to be a part of. It was ground breaking research for future studies and trials. However, the cut off was six months old and it won’t be ready for a few more weeks so we missed it. There are currently no clinical trials for Logan’s type/age. If a trial does come up that Logan is eligible for, she will be one of the first to hear about it and will contact us immediately.
After Dr. Connolly and her assistant left we met with Therese from the MDA clinic. She was so incredibly nice. We spoke about how the MDA can help us here and at the Springfield clinic. She also told us about a family who went through the tragedy of SMA a few years ago and was a spokesfamily for them. I am excited to get into contact with them to hear about their experience. We would love the opportunity to represent SMA through the MDA here at home one day too.
While Therese was there, the physical therapist Betsy came in. She worked with Logan for a bit. She thought water therapy/floating was a great idea but not to go above 15/20 min. That way he won’t be too exhausted. Brett and I decided to let him float 2-3 times a week because he loves it so much. She also showed us some new stretches to do with him so we are fully stretching his arms and back as well.
All of this took place in 2.5 hours. We weren’t sure how long we would be so we were glad we could go back to the hotel room and get some lunch. We stayed at the Parkway Hotel even though it was a bit higher than other hotels in the area. Their third floor has a bridge connecting to Barnes/Children’s Research Hospital. Children’s Miracle Network helped us with some traveling costs. I almost didn’t apply to them because we had to fill out Medicaid paperwork and I already knew we would be denied. I finally broke down and went through the process though and it was worth it. Kassie has been a great to us and all our questions. Only thing that sucks is if we have a G-tube surgery in STL, CMN won’t be able to help with that. But that is why we are holding on to all our donations and extra funds at this point.