Dec 3, 2011
"It's not like you have to tell people that she has CP"
But why not tell others? What is there to be ashamed of? This is who my daughter is, and I will always be proud of her.
Addison has always had muscle tightness, spasticity and low tone. From birth, her doctor said "just rotate her head side to side every now and then". At 1 month of age, she was diagnosed with Torticollis and sent to Children's Mercy for physical therapy (PT). This must have been a glimpse into hell. For months, I was told to crank my daughter's head in ways her muscles wouldn't allow it to move. She was already in constant pain, and I am being told to hurt her more, more frequently with more strength. I couldn't. It wasn't helping, and it was my time to be mommy. Not a torturer.
Unhappy with the lack of progress, growing amount of bills and still no relief for my baby, I sought actual answers and real help. The first sign of a happy child was at 4 months of age when she began seeing her chiropractor/AO- Dr. Curt Brennan. Not only was he a kind man, but he helped Addison to feel some relief from the pain that kept her awake, kept her from moving, kept her crying...this man was our savior 3 times a week.
I consulted a friend who works in pediatric occupational therapy (OT). She suggested Missouri First Steps. We got a PT who came to our home. I asked for more, Addison had multiple delays, we received an OT as well.
We were also put in touch with Dr. Gupta, a pediatric orthopedic surgeon. From him, we learned about her muscles and how Botox works to retrain the communication between them and her brain, while deadening them so they will respond to therapy easier. With less pain. She will receive her third (aggressive) Botox procedure in June.
Everyone wants what is best for their children...sometimes we have to fight for it. I learned that through Addison's first year of life. In my heart, I knew there was more...more to her needs, more answers and more solutions. The more I fought, the more I got, the better Addison's life improved. I will continue this fight, never giving up.
Never hiding. Addison has been diagnosed with Cerebral Palsy. He doctor I quoted at the start of this blog was correct, I don't HAVE to tell people...I want to.
