Water a Flower, Watch it Grow

I am thankful for the triumph I see in Addison. Because of her life path, experiences and challenges, I hope she has a different perception of life. 

She has a serious diagnosis, but thanks to her early and aggressive intervention (and her smart, determined little self) she has been given a head start. She's made great strides, leaps and bounds really, no matter what has been said she may or not be or do (at 6 months of age I was told that Addison showed signs of autism and CP). But, she still is a part of the great cerebral palsy community. I hope she uses all she goes through and all she gets to experience (not only personally, but the wonderful people she meets) as a growing tool and to make a difference. For herself, and for others. 

I should add- I have met some wonderful people through this journey as well. The online family, as well as support system through family, friends, therapists, doctors, etc...it's a whole new world, someplace I never expected. No mom does. We all picture the perfect child and perfect world. I embrace the one we have been dropped into and am thankful for the good people in it with us! Thank you.

The Wonder Drug?

Ahhh Botox...hailed as the wonder drug by hopeful parents (such as myself) and orthopedic surgeons, frowned upon by the more natural types and therapists...what's best?

My answer? Whatever helps Addison. This is her third round of Botox treatments. And while she has had her life filled with PT, OT, and a chiropractor to aid along side the Botox, I have to look at the results. Her last 2 evaluation shows that gross motor is now her strongest developmental aspect. I have to believe that our concoction is working.

How it works (in a nut shell) is she is put under anesthesia and the Botox is inserted deep into certain muscles her doctor has chosen during appointments pre-op. he chooses a variety of muscles due to tightness and how they are effecting her comfort, body and movement. Today, he is focusing on her shoulder areas, a high dose in her lower back, her finger flexers in her arm, and low doses for a few muscles in parts of her upper and lower legs.

 The Botox deadens the muscles to help retrain the thinking to the brain, as well as help stretch the tightness without pain. The goal is to not loose muscle function. This is where therapists dislike the treatment...they hate going backwards, I hate the frustration. Addison lost function in her thighs last round, January, when she had just learned to pull up and start to cruise along the furniture. Hopefully this dosage is just right to make her feel great!

I appreciate everyone's thoughts for Addison...as I sit in this waiting room for the third time, I feel like its the first time, for I am alone. Matt was unable to get off of work. I feel like I have more worries, I guess I need to be concerned for 2. I know he is thinking of her and wishes he could be here for us both. 

Never Stop

In the past, I have typically been an easy go with the flow kinda girl...never wanting to rock the boat. I wouldn't send food back at a restaurant, speak my thoughts to a friend. As I grow older, I find myself being more up front, but I never knew what fighting was until I had a child to fight for. I was lucky, a close family friend is an OT and walked me through every step, always encouraging me to "tell your coordinator you don't like your OT" or "leave that office" "tell them you want more" "make them fix it". And I have had to do all of those things, plus more. My most recent battle has been Addison's braces, or AFOs.
Addison's muscles are backwards...as with CP, her muscles are very tight and spastic. However, her tone is very low (especially when Botox changes the way her body functions, which will be an upcoming post). Because of this low tone, her ankles fall to the inside. So her muscles don't form incorrectly while adapting to this different form, as I was told it takes 1,000 good steps to make up for one bad step, she has been prescribed to wear AFOs. The first set came to the top of her little calf, encompassed her entire leg and foot, making it too hard for her to even walk (a feat we just conquered a mere two months ago). Instead of letting her struggle, I immediately requested change, irregardless of the $1,800 price tag. The AFOs have now been shortened to just covering her ankles, less material on her foot, a more natural feel. She is walking with more ease, and doesn't bat an eye when these hard plastic braces with straps upon straps come out. She's such a trooper, an inspiration.
Without growing my new found backbone, Addison would not have the amazing OT she has, she wouldn't be receiving as much therapy time as she is, and she wouldn't be able to walk independently without ruining her muscular structure. I no longer need that friend in my ear, pushing me to speak up. The more I fight, the better things are for my daughter.

The Truth Will Set You Free

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.