Friday, April 15, 2011

14 & 15 April 2011, from dark to light

12:25am/ My last two days have been spent helping Donavan transition between need all to only needing some. When I say all, I mean all his meds, all the doctors, all the therapists, all the attention, all the room, all the prayers, all the listeners, all the space, all the kindness, all the equipment, all the consoling, all the patience, all the slack, all the hugs, all the help, all the world has had to help him coast, ever so slightly from the drastic he has been to now a slightly ore mild presence. Its been so UP and then DOWN. Bless him, no one can tell me "boys aren't as emotional as girls" ever again. They can be too! Donavan had a melt down last night that I will not soon forget because it broke my heart... He sobbed and sobbed and sobbed about so many different things that I could not keep up! I was frantic, because it was midnight and he was so loud. We are in the HP house yes, but it is still a hotel and we have families to the left and right of us.He was yelling and then crying and both together he vented what seemed like a lifetime of frustrations.... Then it was over and he slept a sleep of heavy peaceful dreams. I was still frantic replaying every single thing he said over and over again in my head analyzing like a mother does. I don't know when I got to sleep.

     Yesterday was Donavans first real day of work at physical therapy and it rocked him good. They issued us a TENNS unit to help Donavan to retrain the muscles in his left leg. So much was cut in the surgery that its going to take a ton of work from here on out. He understands this, but I believe he in a way wished it would just disappear and allow him to play it off, as he did when he was younger and a therapist would issue him exercises. Donavans been in physical therapy for years due to Perthes. When he was young, it was fun and avoidable because he had NO idea what was at stake. Not anymore. Here at Sinai they see so many children with as serious conditions as Donavans, and much more serious. I trust them with my son and we cling to these 6 therapy sessions we have been afforded before we will leave Baltimore to go home. They hopefully will enable me to get Donavan off to a solid start and arm him with the initial confidence he must have to see a light at the end of the tunnel. Yesterday he cussed and swore it was too painful and that nothing felt right and that he felt his hip sliding and burning... Today "Moshe" a very well loved and admired therapist here at Paley Institute of Advanced Orthopedics had my son up out of his wheelchair, walking with his walker, shifting his weight and making his way across a small bit of the floor! ! ! I couldn't believe my eyes. And the tears came big! I videoed it, but its 3 minutes long and I cannot seam to get it from my phone to here on my blog yet, but I will! I was amazed and so incredibly thankful...From what seemed the lowest possible, not holding down food and passing out, to walking with his walker! Praise be to God. I am feeling lighter as I write this. I am so proud to share this news and I have a more stable feeling in my heart about the progress Donavan is now making. I honestly felt that his left side had just been so surgically dissected that he'd never come back. I will be adding many more photos so you can see my boys pride and extremely hard and difficult work. I pray its only the very beginning and that the we are able to use the next 3 sessions left before we leave to help Donavan feel realistic hope. Nine days left in Baltimore, three more pt sessions until we get back to S.C. and Donavan can begin his very long way back to eventually walking on his own without the aid of wheelchairs, walkers, or crutches.Stretching PT for 4 weeks then Hydrotherapy for 4 weeks to coddle the muscles and increase flexibility with weightless resistance training and then the real therapy begins at 12 weeks ... Will take a minimum of 6 to 8 months and then another three to put the final touches in so that he has a regular routine to fall back on, if his limp gangs up on him again. Then next summer, limb lengthening of his left leg to even him out and leave behind him any scoliosis or further threats to his knees and spine. I am ready for this for my son, he deserves it. I pray he will fight for it -! I will hopefully be able to add the video tomorrow, its so heartwarming you will feel it too!  Goodnight C: