I just returned home from another doctor appointment for the kids.  We met with an orthopedic doctor.  Kids with MPS tend to have issues with their hips, so we wanted to have them x-rayed.  Waverly's feet are turning inward more and more, too.  They took hip x-rays and everything looked good for Oliver.  Waverly looks pretty good, but they did show some problems...nothing that requires any treatment though.  Our doctor has referred us to a doctor of physical medicine.  They will be able to assist us in the future with braces, walkers and wheelchairs.  It is a muscular issue, not a bone/joint problem.  Wavey may need to be fitted with braces for her legs to help her keep from tripping over her own feet.  Of course there is a waiting list of 4 months to get in to see someone.  But, we do have an appointment scheduled in March for both kids.

Waverly had a better day today.  She fell asleep within 15 minutes last night and slept all night long.  She was very excited to see one of her favorite books arrive in the mail, "Elmer and the Lost Teddy".  (She destroyed our copy and I found another copy on e-Bay.)  She actually sat and looked at the book for about 10 minutes - a record in attention span terms!!

We are really looking forward to heading to PA tomorrow to be with family for Thanksgiving.  It is always stressful putting Waverly in a different environment, but she loves being with her Grandpa & Grandma and all of her cousins.  I think it is going to be a wonderful holiday for all of us.


Whitney said…
Safe travels and I hope you have a wonderful Thanksgiving!
sallie taylor said…
Hi. I am from Colorado and received a Google alert that led me to your blog. After reading about the issues your kids are having, I had to write and suggest that you find a hippotherapy program for them (physical therapy on horseback). The movement of the horse strenthens their core muscles, and the stretching that can be done on the horse helps free up those muscles around the hips. My daughter has Sanfilippo syndrome, and I cannot tell you how much it helped her coordination and strength to ride horses. Also, an Urban rebounder (individual trampoline), keeps her both busy and safe, strengthens her heart, helps her coordination and endurance, and wears her out, making sleep easier! We couldn't live without it. Just some thoughts I wanted to share with you.

Sallie Taylor

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