Salt Lake City Trip #3

Apologies again for the long wait between posts! The nights and weekends have been busy busy the past few weeks.

First I wanted to let everyone know that after Maya came back from the hospital on April 15th, she continued to be yucky for that next week too. We learned that her ear infection hadn't quite cleared up that great, so again she went on another antibiotic. Bactrim. This time the doc thought it could be staph (still not sure about that) but we went with it. She was all cleared to fly to SLC. No fevers this time!

By the time we were ready to fly to SLC to see Dr. Swoboda and team, Maya was MUCH better. Night and day difference and she was sleeping nicely with her oxygen levels at 97 to 99! Whew! We still took all the resp meds and equipment with us on the trip. All those things really add up in your luggage! And so heavy too! We still did a resp treatment that night in SLC but she didn't need any after that.

Clinic Day-
We got in to see the team at 9 am. We did the usual history and questions with nurse Abby and then Dr Swoboda arrived. Maya was in a great mood until the doc wiped Maya's hand clean with an alcohol wipe. it only took Dr Swoboda about 5 seconds to decide that we needed to sedate Maya for her test. Its the test we go up there for. Not sure of the name but its a motor neuron estimator and the only test of its kind to monitor the progression of the disease. Anyway, so we got instruction to have Maya fast until 2 and be back to the office. It was 11 so we went straight to Maya's DEXA scan. It shows that her bones are doing better than 1 year ago. She gained some lean mass but also gained fat mass so overall we just need to watch her weight. Yes, she is already petite, but we have to keep her thin (don't worry no dieting going on here, just can't let her get too chunky). As we waited for 2 pm to come around, we drove around and let Maya catch a nap. It SNOWED the entire time. Yes, almost May and a blizzard like storm in SLC. At the 2 pm appointment, they gave Maya some verset to help sedate her and started the test. We are happy to report that Maya's numbers have come up. A year ago, she was 1.17. 6 months ago she dropped to .8 and now she is 1.1. We just knew the medicine was working and now we have the evidence! We will keep Maya on the same dosage and continue to pray and work with her to make the most out of those remaining motor neurons! We also learned from Dr Swoboda about a few new trials in the pipeline. Hopefully by the end of next year, an even better drug will be available for SMA. Overall, today's results gave us all something to celebrate!

Therapy Day-
Friday morning we met with Donata the physical therapist Maya sees in SLC. Donata uses the same test everytime to show whether Maya's numbers have increased (whether she can or cannot do the task). We are still waiting on that score. A year ago she was a 6. Six months ago an 8. Hope we continue that pattern! One of most exciting part of this visit is when Donata put Maya in a walker. She put knee braces around her knees (so they didn't buckle) and we held her butt and slightly supported her chest. Maya cannot stand there by herself, nor can she move her feet but Donata thinks she is fully capable of doing so with time and increased upper body strength. I am still in denial! I never imagines that a walker was in Maya's future. I'm not running out this second to get one but at least we are talking about it. We have a lot of work to do but I wouldn't be surprised if in a year Maya can make it happen. She was so happy in it too! Donata also let Maya test this other gait trainer out. Its a harnessing and lift system that goes over a treadmill. She was having all sorts of fun on it, but still no movement of those feet. She did however swing herself back and forth which shows some strength. Donata is trying to get one of these shipped to us so Maya can start using it at home. I posted the pictures and videos to our family album (link here). Click to the end of April Various pics for the SLC pics.

Now if only it weren't snowing and Gayla and I weren't sick and had migraines the entire time, this trip would have been perfect! Hopefully next time we will be able to leave the hotel room!