I found myself yesterday sitting in our neurologist waiting room for 2 hours yesterday. Ok so I didn't "find" myself there. I scheduled myself there like four months ago so you would think that a 2 hour wait might be a bit unnecessary. Thank heavens for iPads. This neurologist is always worth the wait. From the first time we started seeing her last year she noted Sadie's ups and downs with weakness and started searching for more answers. "I just don't feel good about calling this Cerebral Palsy and Autism as all the other specialists have. It's something else." From that day on I liked her and vowed to wait up to two hours for evermore. So yesterday I brought Sadie in her wheelchair, she was supper unstable that day. I explained how Sadie miraculously cruised around independently for two days straight and then went back to Miss Little Wobbly Legs who tuckers out after 5 steps in her walker. The Doctor stated again that this is why her condition isn't what everyone is saying it is. She went into her chart to review everything. We haven't seen our neurologist since before the surgery ,during which she ordered a muscle sample to be sent out and tested. The three times I called about the test I was told if there was something abnormal I would be called so after no news I assumed nothing was found. As our Doctor scanned the computer screen her eyes bulged. Apparently something was found in her muscle tissue indicating SOMETHING is going on in her muscles.Oh and only one out of many tests were actually done on the sample and so lets call and see if they have enough tissue to do the rest 4 months later! She kind of shot me an apologetic look but I think she was more excited that we were on to something. She referred us to "the best" neuro muscular doctor. His schedule isn't clear until August AUGUST! Am I the only one who feels like everyone should stop what they are doing and try to figure out my kid! Can we hold a Sadie Conference with slide shows and coffee. EVERYONE NEEDS TO WORK ON MY KID RIGHT NOW!!!! (thats me shouting on top of a building or something). I know I have been waiting a really long time for answers so whats another couple months or more. And even then I may only just get another piece of the puzzle. Reading about muscular disorders is a little scary. Reading about metabolic disorders is both scary and hopeful. I can't take this waiting! I'm waiting to go to more specialists, waiting for lab results, waiting to see if The Elks Club was able to help with Sadie's bike, waiting for a service dog, waiting to see if tomorrow will be a walking day or a crawling day. I can hardly sleep sometimes!
Most people would just call it a day and crawl under some sheets, but no, (I did that later) we had to drive an hour and a half back for PT. I was very eager to bounce all the neurologists theories onto Sadie's Physical Therapist and Sadie was so giddy about not getting any shots she was happy to go anywhere. PT reiterated my thoughts on waiting for results. We can't expect there to be a magic bullet so really waiting about 6 more months for all testing and what not to be done isn't going to kill us but sure as heck will boost anxiety levels. PT then prompted Sadie to get in her floor to standing pose. When ever we do this Sadie yells "don't help me or I don't get a Leapster!". Last year she coveted her friends leapster over summer vacation and I told her I would buy one for her if she could get from floor to standing all on her own. Really at the time I would have promised her a BMW I was so desperate for her to obtain this skill but she settled for a Leapster. A year later try as she might, getting up from the ground has been the most difficult task for her. Yesterday Sadie could barely walk with assistance but for some reason she shot up from her crouched position stood for a half a second and then threw her arms around PT exclaiming "I get a LEAPSTER!!!!!!" Sadie repeated this performance again and again. She showed off to the whole office. Sadie was cheering. Bro was cheering. PT and I were in tears. So even though things seem to take forever, things are happening.