Thursday, March 5, 2009

What a week.....whew. and is it spring yet?

"I don't know about this mom"
Ok been a cookey mood adding songs that I can kinda bob my head to when I hear them...LOL

Its already been a whirlwind of a week... I cannot wait till spring when I can go oustide and tend to my messy garden and take madie for walks in the neighborhood and the trails.....:( :( Wouldnt a cruise be SO fun right now?? ever been on one?? SO FUN!
I just read Austins blog and his mom tells us that Austin has days that are great and he is doing well and she goes into thinking that MAYBE this is it! then get all excited only to have a day where his poor lil body gets zapped....

I GO THRU THE SAME THING WITH MADIE NOW!! I tell ya... I was brought to tears tonight at how stinkin cute she was tonight...rolly polly all over the blanket...then at 745ish...ZAP. she is sleeping now...JUST like that..there was no reason for her to be tired so early...she took a great nap this afternoon...usually she is up till 9...and up between 630-730... I wish I knew what makes our little ones go days without seizure only to have a random day to have strong seizures...Its soooo frustrating! Like the seizures are trying to erase all the good days..making us start from square one again..."oh...just when she was rolling well" or maybe "oh just when I saw her open her mouth for her spoon" I used to cry and cry and cry..saying to myself that the seizures would "erase" madie... and that we would have a child who knew nothing of the world when her seizures finally stopped...

This week inparticular I just hate this! I just want to erase the word seizure from my vocabulary! DO you know that feeling when you just want to scream "where is my child's chance without seizures??!!" WHEN are we going to let madie grow and develop!?? And have a death in the family! AND then you have like 2 doctors appointments!!

GI appointment today went well..the doc was really nice...she said she is going to get the ball rolling with her Boost Shakes...its been over a month since we requested those things...I almost forgot to mention them!

We kinda just talked and I gave her info on madie and how we have been doing and how we are in a stuck spot with her meds...since she just is not getting enough calories! She said she is NOT leaning twards a G-tube...and wants to give Madie a chance..she is also going to hopefully get goin with her feeding therapy/OT/Speech therapy....Dunno what they call it...NOT a feeding team thing...(which have NOT been covered by our insurance!)

I dunno folks..
Yesterday we were out in Long Island for my uncles funeral...eeeeveryone was there and there were tons of tears and I gave myself credit for going to the coffin and saying a word to was scary as heck! He looked wax.
On that note....I am tired...I need some good sleep tonight...going to watch The Office and snooze!
keep those prayers goin folks.... we ALLLLL Need em!
I will keep you posted on how things go next week with EEG...we had to re-schedule due to the Ft of snow we got! eek!

1 comment:

Holli said...

Can you believe it??? It would just be so nice for one of us to get a real break from the yuck in our lives! I'm right there with ya, seizures, appointments, and family tragedy...what tha heck??! We're going to Detroit next week, Austin's got a BAD case of eczema, not to mention the seizures...and my grandfather passes away...crazy how life goes sometimes...
So sorry to hear about your uncle. You guys are definitely in my always!