Traumatic Brain Injury

Kristy - posted on 01/21/2009

Wow! Michele must be one strong young lady! She's gone through a lot. I can certainly understand that, even years later, every day brings new challenges. But, with it, the opportunity for more progress!
JoLee was 3 when the counter tops slid off and pinned her on a cement floor. She had 2 surgeries immediately on the Cerebellum portion of her brain (which they did end up removing some of). Then a few days later on her frontal lobe (which they also had to remove some of). She has L facial palsy (cranial-facial nerves 7 & 8 were cut during the 1st surgery), no hearing in her L ear, and her L side is weaker. She, also, had to learn everything again. But she was very young, so she doesn't remember a "before".
Balance is a HUGE issue for her (from the cerebellum removal). For me, her biggest issues are from the frontal lobe. she has a lot of emotional lability. Fits, crying, intense anger... Her processing is quite a bit slower, but if you give her time, she tries very hard to understand.
Currently, Jo receives all her therapies through school. We are fighting for OMRDD eligibility as well as SSD so we can get her more. What a fight :-( The lady from OMRDD told me "when she's 18 she'll be automatically eligible" I wanted to shake her!!! Apparently she's never heard of early intervention! Grrr!
Here in CNY we have the BIANYS (Brain Injury Association of NYState) that has support groups monthly. The problem is, they are for adults. I cant exactly show up with 5 little ones in tow. I've been talking to the facilitator about forming a group for the kids and families affected by TBI. She (the facilitator) has been amazing...she has done trainings for JoLee's school to prepare them, a puppet show for the kids in her class to explain to them more on their level what a TBI is, she got me classes on IEP's and how to help make them work for Jo, as well as lay advocacy classes.
JoLee has a twin sister. This has been brutal on her. Most of JoLee's anger is geared toward Elena. Elena doesn't understand it, but she does her best.
Oh geez. I guess I've written about a book, too!
I hope to talk to you more!!

Iris - posted on 01/19/2009

Quoting Kristy:

I'm here!!! I have 6 kids. My 6 yr old has a TBI.
When she was 3, she had a heavy object (we were remodeling our home and the counters for the kitchen) pin her. She had numerous surgeries, including one removing a section of her brain.
I have been looking for years for someone who is continuing through the things I am!! Hope to talk to you soon!
Kristy

Hi Kristy! Thanks for the reply. First I am sorry to hear about what happened to your little girl. But aren't we blessed to still have them around?

Sounds like you and your family have been thru a lot as well as we have. Michele had 3 surgery's on her open brain, and 2 reconstructive one's on her scull/face. She lost about 25% of her brain and her speech center was really damaged, as well as her memory. She also has to live with a "schand" and a wheelchair for longer distances and her right side is not really function, anymore. We spend a great deal in rehab after 6 month of coma and she had to learn everything new. (walking, talking, eating...)

She has a hart time getting social active, again. So less kids like her that could handle her ways, around. She is 15 and at the age level of a 5 year old. She can't read anymore (was reading before the accident already) and only simple math makes sense to her.

What are you guy's doing as far as extra therapie goes? Do you have resources that I maybe have not heart about, yet?

I am writing away, I know. But I am very excited to finally hear from somebody else with a simular situation.

You have a beautiful family, by the way. Very blessed.

Tell me more about what has happened to your little one and how you guy's handle daily life...

Looking forward hearing from you

Iris

Kristy - posted on 01/19/2009

I'm here!!! I have 6 kids. My 6 yr old has a TBI.
When she was 3, she had a heavy object (we were remodeling our home and the counters for the kitchen) pin her. She had numerous surgeries, including one removing a section of her brain.
I have been looking for years for someone who is continuing through the things I am!! Hope to talk to you soon!
Kristy