Wednesday, September 1, 2010

Sweet Madie.

Oh My little Angel.
Hard to controll seizures are just so hard to predict. WHEN will she be hit...will today be a good day? a bad day? was she grumpy this morning because she had a seizure before I saw her for the first time? Its sad that any sort of "off" behavior I think to myself that maybe it was a seizure.
i think those of you who read my blog know that we never did find a reason for madies seizures and never have found a reason for why she is so delayed. No offical diagnosis. tests continue to come back relativly normal.
Seizures these days have been VERY good...LOW numbers for sure. But they always let us know that they are still yesterday when I was feeding her and she had one in her highchair..oh poor baby made a mess with her food when she did not mean too and I was wiping food from her eyes and hair..
There are good things happening too.....

She been so interactive! I mean in good ways! While seizures seem at bay for the most part she is such a joy when she is happy and eating and pooing and napping...(all the essentals to a happy madie)

Was playing with her last night and she was laaaaughing and laughing as I was giving her raspberries on any part of her that I could catch...her arms her tummy her legs...Oh she was so funny...knowing it was going to tickle..and at 915 when I am ready to put her in bed how can I
She loves to be pulled to a stand...cannot hold herself up but lifts those arms up to be pulled up..and laughs and laughs..then bends her knees up and down and "dances" but THAT is not going to hold the silly girl up..but its hilarious!
I try to focus on these things...the things that show me that madie is with me..she is lovin life and mama and just being silly. the more laughs the better in our house!

Took Madie to the inlaws beach house on Monday and tuesday and she was an ANGEL! A bad bad heatwave was heading in on Tuesday and I did not pack enough clothes for us..or I woulda stayed longer!
I just missed the gang and needed a dose of some family. Made everyone my Roasted Chicken I got from barefoot contessa and some cheesy potatoes too :) YUM.Madie being in such a great mood was SO NICE. She was a joy with whomever would give her the attention.
This weekend we head back for some Labor Day fun my brother and sister in law will be home from DC and Mass and we will be BBQing and hangin out. Just hoping that madie keeps up her good moood and doesnt give me a hard time. Planning on a couple nights to take full advantage of the weekend. Supposed to be in the 70's too...hard to believe when its nearly 100 now...
Pictures are from this morning on top we have been in our jammys all day. and the second one from our walk to the top of hill....took a break and saw her in this pose cracked me up.
Lets just keep hopes that seizures will stay "better" (knock on every kind of wood product or anything that may look like wood)
Preschool begins next wed!!! WOO HOO!!!

PS I will NOT go into the fight for the KetoCal right now....its an added stress i wish not to think about right now.

1 comment:

Reagan Leigh said...

I still can't believe you never got the Ketocal! Crazy. Well, maybe you didn't need it. Things sound like the are going well for Madie right now. Not so much here (Reagan's screaming at her nurse in the other room as I type this). And just so you know, we don't have a pink Kimba, we have a Leckey Squiggles on a Kimba base!