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-   -   Ava's therapy coordinator (https://www.justmommies.com/forums/f50-children-special-needs/1528650-avas-therapy-coordinator.html)

Ditzzy April 20th, 2009 02:16 PM

Ava's therapy coordinator
I met Ava's therapy coordinator this morning. Ironically she's an RN that worked for years on the trach/vent floor and knows Ava's new medical team. I thought we'd do the evaluation, but as it turns out Ava does not need evaluated since she has a diagnosis (verified by more than two doctors) and has been accepted by the CMH (Children with medical handicaps).

What I like:
In home therapy
She knows exactly what is wrong with Ava and has experience with it.
If anything is denied by our insurance, CMH might cover it.

What I don't like:
She informed me that she believes Ava may have an airway put in because she is so delayed. That it's "blatently obvious" that Ava is using any extra energy on breathing when she should be using that energy on gross motor skills. (I really wanted to like her until she said this):mad:

She also said she feels Ava needs tested for cerebral palsy. :brickwall: I don't see muscle tone issues. ??

I don't know what to say about it all. I think I'd like to remain in denial for 2 more weeks! I'm counting on this new medical team to tell me Ava is 100% cured of everything. *sigh* That's just not gonna happen, is it?

stacyp April 20th, 2009 03:18 PM

Re: Ava's therapy coordinator
((HUGS)) Hopefully her opinion is wrong. Please KUP, I will be thinking of you.

As far as the CP, wouldn't someone have noticed if they thought she might?

Ditzzy April 20th, 2009 05:11 PM

Re: Ava's therapy coordinator

Originally Posted by stacyp (Post 15455040)
((HUGS)) Hopefully her opinion is wrong. Please KUP, I will be thinking of you.

As far as the CP, wouldn't someone have noticed if they thought she might?

That's what I was thinking too. Ava is behind, but her muscle tone seems fine to me. She has an mri soon, I guess that would show CP? I highly doubt she has it. I refuse to stress until a doctor tells me she has it.

stacyp April 20th, 2009 06:24 PM

Re: Ava's therapy coordinator
i totally agree. I wouldn't stress about her conversation, period, until you talk to her docs.

I think they go on assessment alone. But, I could be wrong.

iamkc April 21st, 2009 01:56 PM

Re: Ava's therapy coordinator
(((HUGS))) I wonder if most people in medicine don't understand that they can't just mention something like that off-handedly, or so nonchalantly. I'm so sorry. I hope that her opinion is wrong. Milo is technically classified as CP right now for his Early Intervention therapies, but he has some pretty impressive muscle tone issues. (They're getting better, though!)

I'd definitely wait to stress AFTER getting a true medical opinion. I wish that everyone would talk to each other before blurting stuff like that to parents. *sigh*

(((HUGS))) again. KUP on what the doctors say!

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