Friday, September 16, 2011

Small Updates.

I think everyone is getting new haircuts these days! Took Miss Madison in for a couple inches off..her hair is insane thick! She screamed the whole time but the moment I got her out of that salon she was happy as clam..sigh.
Just hangin in there on the home front these days. Preschool had a rough start for her she was usually falling asleep before or during since she is in afternoon preK now..sigh..but just yesterday she made it thru the day with minimal keyword MINIMAL...
Two Seizures so far this on Wed afternoon..but we are hangin in there.
Soon we will have a meeting at the school hopefully hubster can come too and we will be talking about how madie is doing and what their goals are for her..Goals..sigh..get her butt up walking! I can help but read sweet Zoeys blog and hear that her therapist does not see Zoey ever walking..
We had ONE doctor tell us that Madie will never walk and I cried and cried and cried..he was all asking me if I was Ok..AM I OK?? Oh yea sure Im GREAT! Eat Shit Buddy! That was the end of him! Madie continues to have no balance on her little feet and low muscle tone in her arms and legs..Feels a bit stronger but the balance and the ability to hold on to whatever will hold her up does not exsist.
I still Reallllly want to get some more genetic testing done on madie but its never me who can say lets do this test or that test...alllways have to get doctor to agree. If you have been reading my story long enough you know that all the tests we have done on madie have come back normal! NORMAL! which always gave us more hope that thins would come to her..she would GET it...just give it time... after all..she is normal by the way....sigh.
I really dont know where to begin.. if I try to THINK about where to begin my anxiety gets high. I just kinda put all that on the back burner and as preschool begins I just kinda go back into the same ol routine..sick of appointments and doctors...maybe more giving myself a break than madie.. maybe I just dont want to know. Just enjoy her as she is and accept it.
I hate fears of unknown.
These days she is OK..happy whistling and rolling that tongue and full of giggles and loves to put her weight on her feet when we play standing..pushes with those lil knees and pushes and pushes...will she maybe crawl?? Scootch? Dunno Kiddos.
Will She Will She Will She.
Today we worry none about that and enjoy this awesome fall day in CT. Read my Book and maybe get a snooze in my day at some point. Just lazy wonderfulness.

PS can someone make that BIMBO bread commercial go away I have been singing that song for 2 days now!!!

1 comment:

ANewKindOfPerfect said...

Look how cute she looks! :) Getting Emily's hair cut was a nightmare too. I thought the other customers would complain, she was so unhappy.

As for the rest of the post, I feel like following you around and saying "ditto" over and over. I often feel that if we don't have a diagnosis for Emily, they cannot tell me what her future holds. Like you, we have done SO many testings and they all have come back normal, or "abnormal but with unknown significance". It's frustrating!