Unlike the pediatrician that saw Addy when she was born, this doctor had actually seen several cases of symbrachydactyly, and even went to medical school with a woman that was missing her left hand and had just recently opened her own dermatology clinic. She went on to let me know that through the state of Illinois, there was a program called Child and Family Connections. This program offers free evaluations to any child from birth to age 3, that presents with any physical or mental delays. Depending on what the evaluations find, the program offers a range of therapies ranging form physical therapy, developmental, sensory, and occupational. The pediatrician gave us the paperwork, gave me the name of a book to read about picky eating toddlers, came back and poked Addy a few times, and we went on our merry way.
I went home with the paperwork burning a proverbial hole in my pocket. Once the kids were in bed, I got online and researched the program. It all checked out, and after speaking with my husband, we agreed that a free evaluation would be a good way for us to gauge where Addy is compared to other kids her age who aren't missing a hand. I called and scheduled the appointment, and a friendly case worker was assigned to us to help us navigate the journey as well as facilitate the evaluation process. After meeting with her to fill out the appropriate paperwork and take Addy's history (yes, I had to relive her arrival in vivid details AGAIN...), she suggested that a physical therapist, occupational therapist, and a developmental therapist all evaluate Addy to see if she would benefit from any therapy.
At 9:00, all three therapists arrived eager to get started. They wanted to review Addy's history, elaborate on a few things, and then they started their evaluation. They tested Addy in several ways, and I was assured that they were taking into account her missing forearm and hand in the scoring of the tests. They explained to me that the tests don't take into consideration the loss of a limb, so if they had scored her as failing the tests simply because her missing hand wasn't doing anything, she would have scored as having a 100% delay, which is obviously not the case. The physical therapist especially scored her evaluation different. She noted that while Addy's hand is missing, she still brings both arms to midline when holding things, she still uses her little arm to hold things on it's own, and uses it to crawl. She is not disabled, she is differently abled.
After two hours of evaluations and people poking at her, Addy was fading quickly. I grabbed her blanket and laid her down for her morning nap, took a breath, and headed back into the living room to hear what the therapists recommended. They each explained how they scored her, what they found to be her problem areas, and what they suggested. Developmentally, Addy is right where she should be which was a relief to me. The physical therapist and occupational therapist both agreed that Addy would benefit greatly from weekly therapy. The physical therapist told us that Addy has low muscle tone, which is contributing to her stability issues. She also said that it could be part of the reason she took so long to crawl, and still wasn't pulling herself up to stand on her own (and I had been blaming it all on her missing hand). She said that once Addy built up some strength and muscle tone, that we could back the therapy down to two times a month instead of weekly. I told her I wanted to be as proactive as we could be, because I know that her missing forearm and hand will cause other body parts to compensate, which in turn could cause other issues like scoliosis or pain in her left shoulder. We agreed that preventative physical therapy would be important to continue. The occupational therapist had similar views, but had a great way of putting everything into perspective (I'm pretty sure I wasn't able to hide how I was feeling and that the worry and heartache was written all over my face). She told me that Addy was showing some delay on her left side, probably due to the low muscle tone, but that she was right on the bubble. Then she said this: "Addy doesn't have a right hand, so we need to make sure that her left hand is the best it can be because it's the only one she's got!"
No one wants to hear that their child is delayed in any aspect of development. I knew that when we started this process, and even before we started, that therapy would probably be recommended. After speaking with so many other families who's children have limb differences, I know that each family has their own journey, all very different even though our children are all so similar. We want to ensure that Addy has the best life she can possibly have, that she is strong, confident, able, and above all else, loved. We know that putting her through therapy will be hard on her physically, and I'm sure at some point even psychologically and emotionally, but it's what is best for her and her future. We want to give Addy all the tools she needs to be successful, and the best she can be. This isn't to say that it still didn't hurt my heart hearing that she needed therapy, because it did. I broke down after the therapists left, and buried my face in my husband's chest and cried, but I only cried for a few minutes. Then I pushed my feelings aside and looked at our beautiful little girl crawling around chasing the dogs. She's happy, she's healthy, she's able. We will do anything and everything in our power to make sure she stays that way for the rest of her life!
