A lot of exciting things going on this week.
Physical therapy is going well. In fact, we got to scale down therapy from five days a week to three days a week (plus one day of therapy provided by the school). It’s a moment of “aaaaaaah!” when I get Drew off of the bus and we come inside, not to rush and get both boys loaded in the truck for the dash to the hospital, but to just chill out with my boys in the comfort of our home. Drew’s knees continue to gain more range of motion. His right leg has exceeded 100 degrees (our ranges are about 120 degrees by comparison) and his left leg, which has always been Drew’s kryptonite, is almost 90 (by a visual estimate – wasn’t officially measured with a knee-bend-measurement-doo-hickey-thingy). It is so exciting for me to see Drew at this level of performance because there were times during our ordeal that I wasn’t sure we’d be this close to the goal.
I’ve always tried to fight back doubt and remain confident in the process, but knowing where Drew came from, from hopping on his butt, and seeing the trauma and labor Drew was going through, I thought our dreams were too high…our expectations unattainable. I feared that we’d have done all of these stressful and painful surgeries and the end result would be a “loose-definition-of-a-walk”. I was afraid that Drew’s ability to “walk” would only be a technicality…he could physically stand and put one foot in front of the other, but for the purposes of living a normal life, hobbling a few feet for the sake of walking would not be what I considered a success. However, Drew has continued to amaze us and his strength continues to grow and I am breathing a sigh of relief that Dr. Paley’s confidence and aggressiveness was justified.
Drew has been walking for a while now and he’s gotten so sturdy and confident that his new ambition is to walk without any nearby adult to catch him if he falls. He has removed the proverbial “safety net.” We’ve always closely followed behind him with hands at the ready because, while Drew could walk without any assistance, he would tire quickly and his balance, though sufficient to allow walking, was shaky. But, the other day at therapy, Drew was insistent that we stay away from him and he was adamant he was going to walk from one end of the therapy gym to the other with no one behind him. This is a huge step for him (pun intended) because he’s let go of his nervousness and fear of falling. Maybe the few times he’s fallen and avoided injury has given him the comfort of knowing he’s skilled enough to protect himself. And, he looks so cute too waddling like a penguin!!
Our next big step will be to convince him to walk with his left knee unlocked. He’s always resistant to unlocking his left knee. I don’t know whether it’s just fear of change or lack of confidence, I don’t think it causes him pain, but he quickly breaks down emotionally at the prospect of walking with his knee unlocked.
He is now walking so well that we now are in the process of retiring his gait trainer! He has retired many assistive devices since his surgeries: he only brings his wheelchair to school as a backup if he were to be too exhausted to continue), we’ve stored away his Radio Flyer wagon we used to tote him around, and now his gait trainer will soon be given the hero’s salute as we upgrade to just-your-typical walker. The walker may be more for our comfort than his as it is hard to “let go”. We’re looking at a special walker with adjustable handles to accommodate his arms. I can’t wait to see if it works out.
This week, I spent a lot of time making preparations for our next trip to Florida for a follow-up with Dr. Paley. I was pleased to determine that Drew’s standing appointment happened to have been scheduled the week of Spring Break. And, seemingly, the “powers that be” were working in my favor as well. A close friend of mine introduced me to a charitable organization called Random Acts and she had made contact with some of the staff and together they have granted us a sum of money to help finance our trip as our own funds raised through Drew Walking Tall have diminished. It’s a huge relief to have this support system, including a close friend with us on her mind as well as this organization to swoop in and help since we are tightly budgeting our money to try to grow into being a one-income family. (be sure to go visit their Facebook page and give them a “like”.)
During this process, I came across something that seemed too good to be true. One day, while browsing a TAR Syndrome support group on Facebook, a fellow TAR family shared information about a camp for kids with upper limb deficiencies. I was so excited to read about this weekend camp for kids and families with kids/adults with upper arm differences. And, with Drew’s new curiosity in his arms and “when they’ll grow”, it couldn’t come at a better time to blend him in with others like him. This camp, in Florida, has special guests such as para-olympians and professional sports teams that have come to speak with the group in the past. It’s a weekend camp with specially adapted activities for the attendees and their families. Excitedly looking for the dates for this year’s event, I couldn’t believe it when I finally discovered that 2014’s camp is scheduled during the week we are already scheduled to be in Florida. How perfect is that?!? I’m so excited for Drew. I’ve pre-registered him so hopefully we’ll hear back from them soon.
On a separate subject, for the lack of a good transition, I have taken on a new large project to organize and properly display family photos. I’ve always regretted not having more evidence of my own childhood and normal “mommy fears” have motivated me to putting these photos in order for ease of evacuation in case of an emergency such as a house fire. Losing photos of Drew (and Holden) would be the equivalent, to me, of losing a child. I wouldn’t shed (as many) tears for the house as I would losing those precious family memorabilia. After the members of my family, I would run into a burning house to rescue. So, I scoured hundreds and hundreds of photos imported from every digital camera in my possession, including my phone and, of course, the recent files contain mostly photos
of Drew during the midst of his corrective surgeries. I always paused when viewing them, carefully studying Drew’s face and leg recalling the story behind this captured moment…recalling our feelings, emotions. I analyze every pin drilled into his skin and bones vividly remembering the blood and sores…the inconvenience and weight of the apparatus, the anxiety in pre-op or in the waiting room. It’s very surreal to look at these moments. Even though we experienced them first hand, I look at them and it feels like I’m looking at some other family. It’s hard to believe that we actually went through that…that we came through. Looking back at it I wonder how we were able to hold it together the whole time. It all looks so difficult and inhumane. What Drew must have gone through…the pain, the fear. At the center of it all, was this young boy being subjected to things that he didn’t understand or even volunteer for. It’s a strange feeling remembering this time in our lives. It’s a great feeling to know it’s in the past!