Tuesday, October 12, 2010

CP ~ It's what she has not who she is


There's something I've been wanting to share with you all but just didn't have the right words to say it...until today.

I sat down this morning and read a story in our local paper about a fellow preemie born with a brain hemorrhage. His name is Landon and I have actually had the honor of meeting his mom, Michelle when she supported our March of Dimes Team, Fight Club.

The article shares that a few Tampa Bay Rays players are wearing bracelets in honor of Landon aka Mr. Strong. In the article Michelle states, "He's had a lot of diagnoses, but that's what he has, it's not who he is. He's the greatest. He's awesome." And that's when it hit me....that's exactly how I feel!

Tessa was "officially" diagnosed with Cerebral Palsy 2 months ago. This is something I've actually been hoping for for over a year now....I'll get to why in a second. Since being discharged from the NICU we (Tony and I, our family and our team of therapist and doctors) have noticed that Tessa doesn't use her left limbs like she does her right ones. While in the NICU Tessa suffered a right Germinal Matrix Hemorrhage. This was something not noticed in scans until AFTER she was on life support. We think the increase of oxygen, nitrous oxide and meds may have caused it. We knew then there was a chance she would be diagnosed with CP.

I hate telling people that she has Cerebral Palsy NOT because I am ashamed but because of the reaction received. I DON'T want sympathy or pity. You see, most people don't know that CP has a broad spectrum of  severity. And most would never know Tessa has CP. Luckily, Tessa's case is mild and limited to her left side. She will never be in a wheelchair, she can talk (even does sign language), her cognition is not effected, she can crawl and hopefully soon will be able to walk! This is our life...this is our normal!



For those that don't know, CP is not a progressive disorder (meaning the brain damage will never improve nor worsen). Children can improve with early intervention of therapy.

It was explained to me once like this:

There are MANY neurons in your brain....some of Tessa's are damaged. That damage won't change but other neurons can pick up the slack and do the job of the damaged ones.

We have 6 therapy appointments a week....2 for physical, 2 for occupational and 2 for speech. Because Tessa was born weighing less than 1100 grams....she was 850 grams...she qualifies for various forms of therapy that if not covered by our insurance (which does have a SMALL cap for therapy) is then paid by various state funded agencies. The reason I was so anxious to get her diagnosed is because I knew once diagnosed she would get all the therapy she needs. Since the CP diagnosis she's gotten an increase in occupational and speech therapy. These therapies are CRUCIAL to her thriving and developing and without the diagnosis we were limited with the amount we could do. On top of this some of our therapies may change once she turns three. At 3 she will start getting help thru the school system. Having her officially diagnosed now means HOPEFULLY we will never have a lapse when we have to start applying with different systems. 

I'm so glad that I read the article about Landon this morning. I already knew his story from being a friend of Michelle but seeing it in writing, right there in front of me, helped me with the RIGHT words on how to share it with you all.

There is not a day that goes by I don't thank the Lord for Tessa. We almost lost her on a handful of occasions and we are honored he picked us to be her parents.

Cerebral Palsy is what she has.....not who she is.






If you'd like to read about Landon click HERE!

7 comments:

  1. Tiffany - thank you for sharing and explaining everything - she is perfect! I thank the Lord for her too and that I am her grannie! She has the most precious sweetness about her -we are all lucky to have her! She is such a blessing! It must be a mild case, anyway it is good she will be able to get what she needs.

    Anna

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  2. Tiffany you and Michelle are amazing mothers with beautiful, wonderful children. Its so true that a diagnosis doesn't define who someone is. Sadly, not everyone realizes that. Thanks to you and Michelle sharing your stories people can see that children can grow up happy, loved, filled with joy and laughter and still live life to the fullist no matter what "diagnosis" they might have. Thanks for all you do. xo

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  3. Very well said Tiffany! I'm glad reading Landon's story helped you verbalize your feelings. Tessa is a little miracle and I know she will continue to thrive. So glad she is getting the therapy that she needs.

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  4. Tiffany,

    Every time I read your blog I start to cry your story is very moving and such an inspriation. You are amazing for what you do for your little Tessa...Thank you for sharing your story about your Miracle

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  5. Thank you Jesus, and your wonderful prayer Anna, I'll never forget it.....

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  6. Tiffany:

    Your words are beautiful. Hugs - Suzi

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  7. Hey Girl! I'm BACK!!! Been over a yr. since I've had time to BLOG... Not that I have any time, but I am thinking of it as free therapy since my husband left. I have some catching up to do on Tessa, since this is so much more info then our FB life...
    I wanted you to know that Evan's PT recommended we see a neurologist due to his low tone on one side of his body. I was so scared to make the appt but Like Tessa, I know E is doing well with everything else and it's going to be ok! I am upset that noone ever mentioned going to a neurologist to us before now!! I mean these guys were SO small! Why weren't we told back in the NICU world??
    Anyway, I finally updated my BLOG. The last time was when E turned 8 mo. HA!!!

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