Sunday, November 30, 2008

A good Weekend.

Well Turkey Day is over and it was a great day. My mother in law forgot to send me home with leftovers so her fridge is packed! haha
We had these funny paper crowns that we all wore as we ate it was so fun...a looong standing tradition....we crack open those party crackers and inside is a prize like a whistle or a and a tissue paper crown!! hahaha
Oh good times....

Well the latest on my Madie....I can tell you that she is certainly feeling better...much more smiley and alert! LOUD with her noises and at times at 3am in the morning you hear her squealing with delight in her crib! I am however on the edge of my seat...I mean after a year of drugs and more drugs have we found the one that will actually work?? Does she have a fighting chance at seizure freedom?? I cannot say.
I remember the day I was driving to Target to get the Depakote filled for the first dose and I was so scared about this nervous to begin "another drug" knowing that if this one works that we CAN get her off her other sleepy drugs that have made her sleepy for months!
I hear the song by Hall and Oats "man eater" I know I know..nothing to do with inspiration or seizures or Madie...but I do have fond memories of my father a lover of the classic rock...I flashed back to when I was like 11 and he was going to take me to a Tiffany Concert...(lol) and it got cancelled....I was devistaed!! he then proceeded to look thru the concert listings and Hall and Oats was playing....I was telling him that was "old people music" and laughed. Needless to say we never made the concert but I did have a handfull of friends over for a slumber party instead..
BUT my point being.....When I heard that song I felt my father with me... It was surreal.
Maybe its the Depakote really working but I also like to think that Dad sent me some good Karma from heaven... He passed away when I was 16 of a major heart attack at 41....One of the worse days of my life loosing my dad...i was such a daddys girl.. I am sceptical of religious stuff.. when my family would go to church with 3 with Fragile X was tough. We alllways had to take my brother out cause he would throw fits...
We changed to every Sunday my father would get up early and go get warm rolls and muffins from the bakery and come home and make eggs and bacon and sausage and all kinds of yummy breakfast stuff and we would have Sunday breakfast instead....
IN other Madie
If I could record the noises she is making downstairs with her dad watching football....LOL...
No distinct words but very vocal indeed!
We spent Saturday night in East the CT shore at Grandma and Grandpas cottage it was so walks on the beach due to lots of rain and sleet but we entertained ourselves with games of Apples to Apples....LOL oh such a funny game......
She had us up at 4am making noise...Hubby and I have a rule...."no going to get her till AT LEAST 630....." not making a habit of going to see her at 4am getting her all excited to see
Alll in all a good family weekend...for sure.
And madie couldn't have been in a better mood thru it all...and all the driving around and disrupting her naps.... going out to this local restaurant at like 7...close to bedtime....ohhhhh easily a 4 seizure day for sure!!....( I was so nervous to get her overtired....that alllllways brings on seizures! )
Nope. she was just.....well....tired. and when we reached the cottage she just took a nap. Reached her limit at dinner and fell asleep in her stroller...and that was that.
I cannot say that I do not see seizures when she and there...
I have a good gut feeling that when we can get her off her other drugs and UP the Depakote just a touch we can nab em!! I have not seen a full blown awake scary one in days! We have not recived the OK from Docs yet....
Mommys little trooper.
Things can only get better so I hope.
Its certainly going to be a lifelong doubt that our journey is far from over.... "those pesky seizures are so strong"
I hope to hear some good about Austins Vigabatrin....Spasms for us...were just the seizure that madie had to outgrow....they are sooooooo tough!! I compleatly hear your just have to be in the lucky bunch that doesnt "evolve" into other seizures....*sigh*
KAREN!!! Cami is hanging in there???...I dont like to hear that there is bad news.....Oh sweetpea...just keep smilin kiddo.
Hugs mamas....:) :)

1 comment:

Holli said...

I'm glad to hear you all had a great holiday. And even more to hear that Madie is still doing well on the Depakote.
Keep going with your good gut feeling...she's almost there!

Take care!