After a long week we have finished our appointments at Mayo. We feel that we've come away with some valuable information. We learned that his iron level is well within normal range and his iron stores are bordering on normal. Of course, we also learned that his vision is decreasing more rapidly than first thought. Among the many other things we learned, the most valuable part of the trip was probably physical therapy.
The therapist had him in a new walker that will have him rely on his legs more and quit using his arms and upper body as a brace. We have to get it ordered and pick it up when we get home, which could take 2-4 weeks. He will also be getting leg braces ordered.
She also had him using a compression vest, which is helpful to children with ataxia. The short, easy explanation is that it supports their upper body muscles so they don't have to concentrate on two major areas at once and it frees them up to focus on lower body muscles.
She showed me some great, easy strengthening exercises that we can do at home on the exercise ball. Our biggest challenge when we get home will be finding a facility that can do pediatric PT and OT, that has extensive knowledge with equipment and can use it with him properly.
After the hematology consult and blood pressure test we saw Dr. Brands again. He felt like we are doing all the right things with our doctors at home and, should we decide to pursue testing, we should pursue the neurological and genetic sides from home. He also felt that if nothing comes from those two areas and we decide to press on, we should return to Mayo to pursue mitochondrial issues. We are still in the discussing and deciding stages. We'll see...
And now we're off for some sight seeing. I'll post some great pictures of Mayo when we get home.
"For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me." Psalm 31:3