what a difference

A visit with Dr. Dabrowski this week made Momma really happy! The second he walked in the room he said.."what a difference." He noticed that the usual open mouth in Avery and most Pompe patients, has improved dramatically. And when he lifted her under the arms he noticed more resistance than usual. She had less sway in her back(her belly is not sticking out as much to balance herself) and her legs are closer together when she walks. She used to walk like a linebacker! She also has less sway in her shoulders. He just really couldn't believe her improvement. HAPPINESS! He also noticed how tall she has grown in the past 6 month(approx) her current AFOs(braces) are way too short now. He wants to get her in a new set of AFOs as soon as possible. He made the choice to keep her in taller braces instead of going to shorter ones. One of the things he did was check her foot reflexes. He tickled her foot and where most toddlers would curl their toes into an upright position Avery dodged the tickle, moving her foot to the side and around and tried to get the foot away from him. He said that many doctors would put her right into some shorter SMOs(braces) but he thinks taller ones are best for her and any "damage" that would be caused by keeping her in tall braces would be easier to correct than damage made from putting her in shorter braces(damage to her body, legs, hips, walk etc)that makes sense to me. She has plenty of time to be in shorter braces. He wants to keep her in therapy..as much as possible and keep her swimming as much as possible. He said that we are doing an amazing job!! It is so nice to hear from an outside source. We work really hard to keep her on her toes so to speak. We will do anything and everything to get/keep her strong. If we give up..so will she..and THAT IS NOT AN OPTION! Avery will be getting casted for her new braces on Tuesday and hopefully have them in two weeks. Edgar(Wright and Filippis) added some extensions to her current braces so her toes don't hang over...that should get us through the next couple of weeks. Then it is off to shoe shop for something that will fit over the braces. THE WORST PART! Good fitting shoes seems just about impossible and are a little on the pricey side...but..whatcha gonna do!?!?! Our next appt. with Dabrowski will be in December.