Monday, March 14, 2011

Thankfull for Madie.


October 20th 2006. You threw up on me that first feeding and when you pooped "tomato seeds" I paniced.....lol Ohhhhh How times have changed...

Feb 2007...how compleatly Captivated I was with my beautyfull baby girl with no idea what the future held for us.
Hello World.
Went to get MY bloodwork done on Sat..remind me NOT to go to the lab on Sat.. I waited about 45 min..
There was a young boy in the waiting room with his parents and he was very disabled..smiled a little at his toy that his mom gave him and smiled when she kissed his little cheek..I was touched by this little soul as he was in a chair and was not mobile. His Chair was really...a pice of junk. I thought of my Madie and her fancy Otto Bock chair that she uses for school and how blessed we were to get it and that Birth to Three paid for 1000 dollars twards the cost! AND insurance paid for the rest! This bad boy was almost 5000 dollars! AND to top it off the kids name was Lorenzo...GOD>..ever see Lorenzos Oil?? TEAR JERKER!
I wanted to say something to the parents but kept quiet...dunno. Maybe they have shotty insurance or none at all..I wanted to say "My madie wont need hers next year since she will be in Kindergarten..Id LOVE to give you her Otto Bock Chair...But I cant say that.
We were going to meet with the Nutritionist tomorrow in Hartford but last time we went we got a bill for almost 400 dollars pretty much confirming that insurance will not cover the appointments..unless madie is Diabetic.
Breaks me into two pretty good pieces that it has taken so long for Insurance to cover madies possibly life changing diet shakes..(we are now at about 6.50 a can which is affordable) and now they will not cover her appointments so we can monitor her on the diet..Not Giving up yet...
We still have to go to Hartford to get her bloodwork done and a weigh in and height check...make sure she is gaining weight. and lookin good..etc etc. Wish we could just re-schedule and do it all in one visit or just at least do the blood work at the local lab...Bugger.
Oh My Madie love. The things we fight for you. How much I would love to give some sweet deserving soul your adaptive stroller and get you off your meds and have you seizure free. Oh how much do I want that for you.

On the Lighter side...Hubster and I got out on Sunday night to a small local(kinda historical) theater to see Bill Engvall do comedy show.. I have not laughed so hard in a long time.it was so fun. There was even some crazy lady who got kicked out by the security it was hilarious as she screamed for her glasses that supposedly she was wearing on her face the whole time..Drunk? who knows!! Bill Engvall played it well as she was being led out...errr dragged out..Hilarious! We went to a restaurant after for some appetizers while all the traffic left the town it was so nice. Sad to get back to the real world knowing it was back to the grind come Monday..lol
Kinda did not want the night to end. Sad.
When you can get Adult time out and forget the stress even for a short time.

Well the time change has thrown madie off terribly...going to bed an hour later..(like 9 is not late enough)...and waking an hour later...at 9am. Tomorrow I will have to wake her up for school which is at 9am..sigh. just hope that goes well. One thing I have learned as a mom when the kid wants to sleep...LET them sleep. take advantage of the time you can collect your thoughts or read a chapter of the book that is collecting dust on the shelf.
Well I can hear her making noises in her bed now so I guess that is my "Q" to go get her. I am thankfull for you Madie. Mommy Loves you with all her being. Your just tricky to understand sometimes...I wish you would give me a glimse of what is to come....tricky beautyfull Girl.

1 comment:

Holli said...

Aahh, nights out and couple time is the biggest treat. It's not so much out of sight out of mind, but it does help to get a break. So glad you guys got some time out together. I think that's the #1 secret to dealing with this on a daily basis. Have a night, lose the day to day routine for a change.

It's baffling why the insurance won't cooperate on covering her appointments. Makes me wonder what they are considering the treatment to be and maybe how they're billing. Billing codes can be tricky. Hope you get that sorted out so Madie can continue on and be monitored as necessary. That diet can take a toll on the body.

((hugs from me and the Austin Man))