Thursday, June 14, 2012

Things are happening.

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.






11 comments:

  1. I can totally relate to the roller coaster of emotions you are feeling with the doctors. I am feeling the same way at times with my own care as well as my sister's. As frustrating as it is, I can say that the road is worth it because you still have everyday with your little angels who adore you. As I am new to this site as of last week, I can tell you from reading all your posts that those victories become so much sweeter because you have traveled those long roads. And when she puts those arms around you and hugs you so tight because she is so proud of herself for crossing that bridge, PRICELESS! It's why we do what we do!!!

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    1. I'm so happy you found my blog! I have really enjoyed your comments. Your right her victories are priceless and because they come with so much time and effort we can never take them for granted:)

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    2. I am addicted to your blog! I check it everyday now and love the stuff you post: sweet, funny, tearful, frustrating, and all. I would like to email you some articles if you can post an email address. I come across many that remind me of Sadie. By the way, I adore your honesty on the blog because you are not afraid to be real about your emotions. It all comes down to understanding human emotions to drive what we do in life. Therefore, the things you do are working for you because you can recognize those emotions and deal with them appropriately. It's a great lesson for all of us to follow...thanks great leader!

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  2. Hi Nicki,
    I am so loving reading all about Sadie. I am also growing very jealous of her first grade teacher. I want to keep her, she's mine :).
    I directed my sister, a genetic counselor, to your blog to see if she had any ideas about Sadie. She had a couple of questions. She wanted to know if her corneas are misshapen and has she had a karyotype done or a microdeletion analysis? She thinks you should see a geneticist, if you haven't already. The two at Children's are Marilyn Jones and Lynn Bird. She doesn't know if you would need a referral to see them or not. She was also curious about the tests on her muscle tissue. Good luck, waiting is so hard. I've been thinking about setting up a meet at the Harveston lake park for the class later this summer. I haven't done that before, but this was such a special group of kids and moms. What a lucky teacher I am!
    Karen

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    1. Hi there! I'm so glad you found our blog! We just started seeing Dr. Kenneth Jones at Children's (he's Marilyn Jones husband). He ordered the microdeletion analysis and we are going down to do that this thursday. I don't think we have had a karyotype and we go to the ophthalmologist next month so I will ask about her corneas. Thanks for talking to your sister about it. Does she work at Children's? I feel like the more eyes looking for clues the better! It would be soooo fun to get together at Harveston this summer! I know Sadie would love it! She keeps talking about you. Today it was "Mrs. Garner said I have the most adorable little thumbs!" Ahh the things they remember:)

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    2. She does have the cutest thumbs! I'll pass that on to my sister. She works at UCSD. Give Sadie a big hug for me! I'll definitely plan a park day. I think I can still email everyone through the class site.

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    3. My sister was so glad you're seeing Dr. Jones. She said he is the doctor people call when they are stuck and if she has something diagnosable, he will find it. That's good!

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  3. I'm so excited for Sadie!!!! Tis literally made me cry. I feel so out of the loop... So glad to be able to check your blog. As far as waiting goes, I've found that daily calls to check for cancellations seem to find a way to get things moving a little quicker.

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  4. I have tears and a smile as I read this. Remember I'm on that rooftop by your side shouting along with you.

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