Monday, June 18, 2012

Vanity & Botox In The Disability World

I have a certain amount of vanity for my daughter. Okay, a tremendous amount! She’s got a beautiful face, gorgeous hair and a skin tone that the New Jersey Tan Mom would commit second degree murder for. She’s bright and funny and loves her family. People at her school, people in the mall, people at the doctor’s office tell her all the time that she is so pretty and mommy dresses her so nice. And you know what? They’re right!

Forgive me for feeling an extraordinary amount of jubilation when people tell her how beautiful she is. Pardon me for having a bit of a cockiness about me when we’re at the mall and people walking up behind us pass us, then look back to see what the girl in the wheelchair looks like and they see that she looks like any other kid, but with extraordinary beauty.

Medically speaking, I would say she’s needed a minimal amount of intervention considering the trauma she sustained when she landed on this planet via C-section. Yes, she needs physical, occupational and speech therapy. Yes, she’s non-verbal and non-ambulatory. Yes, she needs hand-over-hand assistance with everything including playing. But she doesn’t have any heart problems; her hearing and eyesight are perfect; lungs, kidneys, intestines, bladder – all good in these departments, too. Her hips needed a little surgery in 2007 but are perfect now. So forgive me if I am a little conceited about the fact that she’s never needed any other special type of therapy or intervention for her well-being. It feels great going in to the doctor’s office (any doctor) and responding with, “She’s doing great!” when asked, “So how IS Miss Brianna doing these days?”

And you really must forgive me for being sad and finding it almost impossible to not cry when the doctor tells me that I should think about starting botox injections in her hamstrings and ankles. You see, her muscles are getting very tight and currently, she can’t straighten out her legs completely. And if we don’t address this now, it will only get worse. It will get to the point where she is in a permanent crouching position. Of course we don’t want that! And I know that there can always come a time where we have to do something new because she is getting older, bigger, heavier.

KNOWING she has CP and a myriad of secondary conditions that can (and most likely will) worsen does not make it any easier to hear it confirmed out loud.

10 comments:

  1. Girl feel like u left me hanging...so what are the pros n cons of botox? Did I miss the point?

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    1. Sorry about that! For me, the point of this particular post was just to talk about what her general health has been like and how even though I know things can and will change, it is still like a slap in the face when a doctor says it out loud. It's the confirmation of bad news that you know can always come but that you still always hope you never hear.

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  2. Happened here by chance, great blog! We have dealt with issues of spasticity and contracture for 15 years with my son, a near drown who presents many cp characteristics.
    Botox was minimally helpful and given numerous injections required was painful...also needs to be repeated every 3-4 months and is essentially a poison which can migrate to other muscles.
    We have found ABR (Advanced Biomechanical Rehabilitation) the most useful (www.blyum.com), also ABM (Anat Baniel) holds promise. Despite severe spasticity we have avoided all surgery and meds...wishing you the best!

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    1. Thanks for your kind words, Phil. I have actually tried ABROAD in the past but didn't see much results. Perhaps it was the practitioner so I've been considering starting her up with that again. In case you didn't know, ABR has been approved by the government so perhaps your son can be covered through insurance. Here's a link to the article:
      http://www.disabilityscoop.com/2012/06/04/feds-aba-medical-benefit/15771/

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    2. Hi, I am unfamiliar with ABROAD; ABR is a parent as therapist approach to cp and re-sculpting the myofascia which is impacted by a brain assault. ABA in the link is Applied Behavioral Analysis which an approach to shaping behaviors in autistic children. ABR and ABM are structural approaches to spasticity and mobility in CP.

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  3. Sorry about that Phil. I was trying to respond using my cell and the the auto-correct turned ABR into ABROAD. I caught the second one but missed the first one! And yes, I am familiar with each of those types of therapies. Again, I was trying to respond on a small screen (because I knew I would not be able to get on to my laptop till today & didn't want to leave you hanging) and it backfired on me. But thanks for the clarification for readers who may not know what these things are!

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  4. Melissa, I hope you can find another means for your Brianna to stay flexible rather than botox. I have heard that botox can cause many other issues as well. As a matter of fact, the disease that I had can be caused by high doses of botox! I surely wouldn't want that to happen if I could help someone avoid it. Do a lot of research when docs tell you what you should do for her. They will always recommend something "medical" when another option that may be "non-medical" could work as well. God bless you both!
    Wendy

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  5. Hi Wendy, I still haven't decided if I will do it for her. We have the evaluation coming up soon. But I will be sure to measure both sides before I decide. Thanks for the insight!

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  6. Hi Melissa

    It was very nice to meet you this evening. I am happy that we connected well, just sorry it had to be over the heart ache we each commonly share for our children.
    I have done Botox with Carl and I have seen some good results although short lived. Hippotherapy is great for the tone in his leg. but that is short lived as well.
    Going to go check out more of your blog. Looks good so far :)

    Natalie

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  7. Hi Natalie
    Yes it was very nice meeting you too. Thanks for stopping by and commenting. I hope your journey will show you the wonderful things in life even though there is a lot to muddle through. As I said, it took me a very long time to get to this mindset. I wrote about it here: http://theseed9811.blogspot.com/2012/07/keeping-my-joy.html
    I don't know what your stance is on religion but I hope you will read it and get something from it.

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