It's been a little crazy getting the older boys' ready for school and the first few days of school. Travis starts Pre-K the Tuesday after Labor Day. When Nolan and Barrett started on Wednesday, T said he didn't want to go to Pre-K yet. After we dropped them off, he wanted to go to Pre-K was bummed that he has a few weeks to wait.
His big news is that he started walking again!!! Praise God! He took a few steps a week ago today (Thurs) and then walking lots more at the boys' Scout Pack BBQ on Friday. He kept asking to do "laps" around the picnic tables. We said "Sure, do as many as you want". :) He's not quite back to walking the amount like he did before his fractures, but he's walking. He'll even try to walk around the house with his fish boot on (no shoe) and can go a little way. The floor's a little slippery, so he doesn't do that too much.
I talked with his Orthopedic PA today and he's happy that T decided he could walk again. He thinks we dodged a big bullet. Travis is outgrowing his fish boot, so we go back to Shriners on Wednesday for them to start the process of making him another boot. That could be interesting since the process of making the mold of his foot is the same as a cast. ;) Maybe not since he'll be in a different room. I wonder what he will pick this time.
Travis had an appointment / initial evaluation with an Occupational Therapist on Wed, after we dropped off Nolan and Barrett at school. The OT is very nice and I think she'll be able to help figure out a way to help Travis and toilet training. She has some ideas and is helping out in other areas. He's not the "traditional" OT case and she's conferring with colleagues to see what is the best way we approach his situation. Travis is scheduled for a PT evaluation in a few weeks.
Last Friday was the end of course 10 of the Rapamycin trial. It took 3 pokes to finally get the blood, he's a hard stick despite holding still for the draws. It had to be hard for the coordinator to do the draw since he kept saying "All done (her name)?" He got his donut and when Scott asked him about the blood draw when he got home from work, Travis told him about the donuts (nothing about the pokes). Great for all those that care for him on a regular basis that he doesn't hold grudges. We haven't heard anything about the Volumetric MRI analysis nor if his blood level was in range.
A week ago Travis was saying his tongue hurt again. I checked in his mouth, and sure enough, he has 2 mouth sores. Another email to the research coordinator and she was able to check in his mouth and get pictures for the study. Dr. Viskochil called the prescription for Magic Mouthwash in to the pharmacy and that is helping heal the sores. We're trying to figure out what's changed since they usually see the mouth sores appear at the beginning of the trial.
We've been volunteering getting things ready for the NF Walk here in Salt Lake City on October 1st. This will be the first NF Walk in SLC. We had lots of fun at the NF Walk in Denver last year. NF Walks are a fundraiser for the Children's Tumor Foundation. If you're interested in joining our team, click on the following...Team Travis - NF Walk .
As always, thank you for your prayers and support for Travis and our family.
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