Therapies and "Inch"stones

Having the conditions that Ryan has (low vision, low muscle tone, developmental delay) leads to having numerous doctors and therapists in our lives. He has an endocrinologist, an ophthalmologist, a neurologist, a regular GP and a pediatrician all who are seen fairly regularly. On his non-doctor and hospital visit days he has a physiotherapist, an occupational therapist, a speech therapist and a vision therapist (through the CNIB). When we don’t have therapy appointments he still has to work and that means Momma’s got some pretty strong arms these days. Handling Ryan (picking him up, holding him, moving him around, bathing him, doing his physio and basically teaching him how to play and be a baby etc…) are a wee bit tricky. He’s pretty much like a 24lb newborn a lot of the time due to his low muscle tone. He has however gained a lot of strength through therapy and it’s been so amazing working with him every day (except on the days that I make him cry with new or difficult exercises). Feeling his muscles “kick in” and figure things out honestly lifts me up so high that I can’t imagine any drug out there giving the same results. It truly is a rush!

In the special needs world the term "meeting milestones" becomes "making 'inch'stones". These little ones go at their own pace and do things their own way. I am not known for being a patient person but being a parent in general teaches you to be pretty patient. Being a special needs parents REALLY teaches you the meaning of the word! Ryan has taught me that I'm capable of a lot more than I ever thought I would be...patience being one of the big ones! He has a lot holding him back...I read somewhere that vision is 85% of a baby's development. When you wipe out the vision aspect you really have your work cut out for you and Ryan has been working is butt off to get his revenge for what was taken from him before he was even born. For example, not only can he not see where the ground is (to judge how and when to get his hands out to protect himself from falling)...but he doesn't have the upper body muscle tone to get his hands and arms out in time (or to hold him up for that matter). Neurologically he's even more held back as a lot of the time he just can't figure out how to make what part of his body do a specific task. He has been learning though and in a way I understand how "SN" (special needs) parents say that these kids truly are a blessing as you really cherish the little things in life so much more.

Here are some of the 'inch'stones Ryan has made through all the amazing and supportive therapists he has in his life.

March 8, 2011 (4.5 months old): Held his head up (on tummy time) for 3 seconds!!! Yes, I cried...haha!
March 10, 2011 (4.5 months old): Focused on sparkly tissue paper (first time ever)...it was INCREDIBLE!!!
March 20, 2011 (5 months old): Rolled onto his tummy!
April 12, 2011 (almost 6 months): Giggled a short tiny quiet little giggle! One of the most beautiful sounds I'd ever heard!
June 6, 2011 (7.5 months): Tracked an object for the first time! A "light box" (thank you CNIB)! I nearly died right there!
June 17, 2011 (8 months): Really and truly looked at me for the first time and followed me with his eyes. Words still can not describe what I felt!
July 31, 2011 (9.5 months): He found his toes - yeah Ryan!!!! Sooooo exciting!
September 21, 2011 (11 months): Rolled from his tummy to his back!!!
October 22, 2011 (1 year old): Began pushing and rocking on his arms with his knees tucked under him..WOW!
January 9, 2012 (almost 15 months): Sat unassisted for 4 seconds!!!

By the end of July I had hit a level of acceptance of Ryan's SOD diagnosis and was full steam ahead with positive thoughts. Seeing the work he puts in with his therapists and feeling it in him myself when I work with him .. I was feeling very encouraged for his future. Then...