For a short brief back story. Fally was born with a rare genetic disorder called Ehlers Danlos Syndrome. Without going into too much detail, it's a connective tissue disorder affecting the collagen production in her body which deeply affects her joints and blood vessels. (for more info feel free to check out her awareness page www.facebook.com/FootstepsforFally ). It's been a long long road fighting to find someone, anyone who could treat her. We have traveled all across the country only to end up leaving Upstate NY and moving to southern Texas to a place where she is getting the most AMAZING therapy services a person could possibly get! We had a set back in her progress the day after thanksgiving last year (2012) when we were out for the lighting of the Christmas lights on the Riverwalk in San Antonio when she suffered a minor stroke at the very tender age of barely 3 years old. However, she fought back and has kicked ass along the way. I digress because that's not what I'm writing about today. She is severely motor skill delayed due to her disease. In fact we were told when she was an infant that she would never walk, never run, never jump, never dance and just never really do most things that the average healthy child/person would be able to do. She had been dealt a life of leg braces (AFOs) and wheelchairs. We had to carry her everywhere even at 3 years old because walking was hard, after a few too many steps she was exhausted and in pain. It was just so hard to watch her struggle.
My anxiety from all of this comes because 6 months ago she had another standard physical therapy evaluation where they measure and score her motor skills (we will go through this same process again for occupational therapy, speech and feeding therapy). 6 months ago my little girl was in a wheelchair, leg braces barely moving much other than toddling around the house or wherever we were for a few steps. She was scored by the medical community at the age of 3 and a half years old as having the gross motor skills (walking jumping etc) of 14 month old baby. The taller she got, the heavier she got, the harder for her it was to get around and the more pain it caused her joints. Her development pediatrician and genetics physician as well as her regular pediatrician didn't seem too optimistic that she would really ever progress very well as most children with EDS tend to digress as their joints deteriorate or have chronic pain. Well her new Physicial therapist (fally's 3rd) saw something in fally that made her think, no this isn't it for her. She is one determined and motivated little child. She has so much more in her. So we set a long hard schedule of therapy every single day, some days twice a day plus working with her at home. It was a lot of tantrums, a lot of tears, a lot of days where fally just wanted to go to sleep she was so tired. An adult would buckle under her work out schedule. The goal was to build muscle! yeah you heard that right BUILD MUSCLE in a 3 year old child who has hypotonia (severe low muscle tone very loose and floppy). Well tomorrow is the end of 6 months. Tomorrow is Fally's re-evaluation and scoring to see where she is today. I'm so anxious to see where they put her on the age charts for motor skills. She still is behind other 4 year olds. Very behind in fact. However, fally is no longer in a wheelchair, she has graduated from leg braces to SMOs (just ankle brace which she will always need) and........................... that little girl that all of those doctors told us would never dance..... takes a dance class both tap and ballet every Tuesday!! In fact she had a dance recital on fathers day weekend. Yes she was much more behind than the other girls, she couldn't do most of the leg work but she went through the motions, gave it her all and was so very proud of herself. That is all I could ask for. So here I sit, anxious to see how far my little warrior has come in the last 6 months.