Thursday, January 14, 2010

When all else fails- Get on your knees!

A New Year and a new medical plan..We have comes to terms that what was working for us last year is not in the best interest for Myah this year. She has overcome such obstacles in our eyes but in reality , and looking from outside the box, she was actually just treading water. So with the help of our doctors we have put a plan in place and we are going to tackle them head on.

I spent the last few weeks going from doctor to doctor appointments just for them to collect my co-pays and then deny her as a patient..Every doctor here has told me the same scenario..That this is Florida and although they are a pediatric physician that they are really a 1 man show and we dont have the facilities or knowledge. That in Myah's best interest we should take her to a Childrens hospital in a major city/state. Ok, so I put some calls in and come to find out that the hospitals in Florida have done away with some of the advanced machinery/testing that Myah is in need of. Why? They weren't making enough money with them and the machinery is expensive..So back to the drawing board..and in the back of my mind, which I am trying not to think about, Cincinatti !

Cincinatti Childrens hospital is and was a wonderful place for Myah to get her medical needs met but it also was a handicap for us too. For one, I was alone out there with no support or family to shoot decisions and course of treatment with. Its not the same placing a phone call and lugging my computer from hotel to hospital to research what was being told to me. My local doctors were not in proximity to assist me. And when I panic, I PANIC !

We have some surgeries, programs and testing to go through to get her to the next step or phase..will it be the last...NO ! It will be a long road, in which I shouldnt bitch about because its her going through it, not me.

and the hardest thing of all is she still is not talking...she talks jibber and I understand everything she says but to others, its just jargon. Its hard to rationalize with a toddler that cant say "mom it hurts" or "mom will it hurt"..she has to just place her trust in me and I fail her everytime. We had a few doctor appointments this week and she continuously kept saying "ga ga"....which translates to "Good girl".....She pleads with me that she is a good girl and she wants to leave the office..as if I was taking her there because she was bad...Kills me..

I hope for peace and answers along with the finances needed to fly out of state( hotels, food, copays) to find my daughter the medical treatment needed to help her live a normal life..whatever normal might be !

6 comments:

Chad and Kristy said...

I just adore you all so much and I will certainly be lifting you up in prayer.

Shirlee McCoy said...

I will be praying for Myah.

Vicki said...

Just read your blog...Sunday night. Mom told me this posting was here.
I'd like to chat w/you personally....at one of those times your travel mates know about.
:)
We're here. Let's talk.
Love,
Vicki

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Karrie said...

Rina,
I live in Louisville, KY (actually in a suburb of Louisville in Clarksville, IN). We have Kosair's Children's Hospital. They have a great reputation, but I don't know if they have the expertise to help Myah. Just throwing it out there.

Sending you good wishes in making this decision,
Karrie in Southern Indiana

dthoff3 said...

Know that if you decide on Cinci, this time around things will be calmer on my end and we will be there for you. Praying for your decision. T.

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