Sunday, March 22, 2009

Easter Madie

With all the uncertainties about my sweet baby girl..she is 2 and a half already..and so big! How time flies. We continue to be optimistic that we can gain complete seizure freedom and get Madie strong...her lil muscles just roll herself all over...
If I give up hope I just crumble...I just hope for any chance that will be given to this happy lil girl...there is a silly lil girl in there just ready to drive us crazy! and Im ready!!
She has been pretty sleepy the past few days..I dont know if its seizures (which I don't see much of) or meds..or the fact that her little cheeks get rosey red from her teething and she refuses her bottles.... there is alot of pressure on us to get those calories in her tum tum.
She is generally pretty happy...squeals and funny noises I have no words one is a loud high pitched almost "chirp" and a loud
She certainly knows "silly" like when dad gets closer and closer to her ready to tickle her little cheeks with kisses she just knows and before he can get to her she is already giggles..
She enjoys movement games..being bounced and swung...or holding her and pretending that you will almost drop her and catch her before she slips..ohhh she giggles so much and grabs dads hair..I joke with Miles and say that she will tear out what lil he has left in front!"daddys soul patch" lol!
Sometimes she just likes being carried around..kicking her lil feet with deight..but that can get heavy...:)
We have not seen the famous feeding team in awhile due to the fact that our insurance has not been covering them and bills are piling up...(bout 4 so far)we are in the process of trying to prove that its "medically necessary" I get the task of hitting the phones in the morning and requesting letters from her Pediatrician and other therapists...ugh.
OH! Just had m0re blood work on friday and hopefully by Monday or Tuesday they will have results for us and hopefully we wont have to go down more on her "Valproric Acid" or Depakene..the liver just keeps coming back elevated..its so frustrating....I just wish we could get her off her ZOnegran and CLonopin...enough is enough...but would that be a bad thing? I couldn't bare to see tons of seizures return when she is doing so well!
Doctors have still no answers on her condition...why?? so many "whys"...and desperate for ANYTHING that can give us hope here...I feel as if we are moving in the right direction with seizures I feel we are SOOO stinkin close to freedom... then what will come? I wish for less medication...but only madie can prove to us that that is the right thing t0 lil sweetpea... Madie in a dress is a sweet lil sight... If only she would stand tall in her dress and run and jump...:( Be patient they are cuties!! These are potential Easter Card Pics..:)
Happy Birthday lil Regan..:)!
Still thinking about you Austin ;)


Holli said...

What cute the Easter dress! Is she sitting up alone in those pics? Looks like it..

Keep that optimism! You are being so strong for Madie and she seems so happy...

One thing I just learned from our trip to Detroit...DO NOT GIVE UP!!! And I don't think you ever will. Madie has too much spunk in her to lose your optimism. She's such a fighter!

Karen said...

Little Miss Madie you look too precious in your little dress!

Sweet girl you will get there you have a big cheering section in Tn!