Wednesday, August 26, 2009

taking small leaps

This little guy was on my sliding glass doors..hee hee I love love froggies. he was so tiney maybe a little bigger than my thumbnail :) In Japan they say that frogs are good luck an old friend told me..I think we ALL need some luck right now huh??

Doctors and therapists tell me that I need and should work on so many things with Madie..."try feeding her this and that" "use this tool and rub her cheeks and roll NUK in her mouth" "have you tried this exercise? have you been using the stander? Have you encouraged madie to use her arms to stop herself?" OH and what is the deal with her weight? How much food does she eat in a day?? Are you adding the DUOCAL to every bottle cause she should be gaining weight fast...GIVE HER SOME TIME! she will!
The Doctors and therapist have by all means studied children with disabilities and can tell you by the book and things they have tried what may or may not work for your child. But they dont know.

When doctors would ask me why madie was not doing something that they had asked me to work on with her I just wanted to shout THAN YOU FREAKIN DO IT!! YOU TRY! Oh magical wizard wave your wand and make madie drink from that "more age appropriate sippy cup" or not gag on any foods that are not pure'...YOU DO IT.
I really am sitting here typing and my brain feels like it will explode with the things that I feel rest on MY shoulders! Too much on my plate that I just cant eat! And Ohhh I love to eat!
for almost a year we delt with brain damaging IS and then just when we thought that was gone Horrible Tonic Clonic seizures for another year..THEN when we thought those were gone we have these Mystery "jerks" never a break...
The poisons we put into our little one just to try to help them..causing sleepyness, lack of coordination..tummy issues..druggy eyes..or even in some cases more seizures! oh and that good ol vital organ overworking...liver etc..the gals at the lab know us!!
Come fall HOPEFULLY SOON we are going to wein madie off her Zonegran!! WOO HOO! down to one drug for the first time EVER!! Ill keep ya posted on that!

Madies EEG is for Monday...its always trying to get up so early to be in Hartford by 8am trying to get her fed etc etc and get myself ready as well..
I suppose today I kinda feel like venting "blogzilly style" but by "F" key seems to be sticking....;)
Now please please keep Bennet in your prayers...he is having surgery...and I cannot even imagine the fears going thru that...TODAY! I am at a loss...only to say that I am thinking about his family and hoping that all is going smoothly. "as can be expected"

The picture above from a year ago...leaps and bounds my madie has taken..soo cute! :)
A busy first couple of weeks of Sept comming ahead..a couple family memebers comming to visit..Madies Great Grandma Oma..a 5ft dutch woman..(insert jaws theme)I have a hilarious story about her from a couple summers ago involving a buzzing hearing aid...LOL! and the week after Madies Aunt Brenda who is always great for dinner parties and good chit chats and card games :)
I guess thats all I got...Im ready for the cooler temps commimg our way the rest of the week ahead. I have vowed NOT to go back to the beach cottage till it cools off!

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