Tuesday, December 7, 2010

Its beginning to look alot like Christmas...*sigh.


Not the best picture but Madie was loving this game with dad...LOL

No new pictures really.. feeling my posts are a little dull without. I am working on the chirtsmas card picture but I need to find cards first! Maybe Ill just order online instead of going to the store and looking thru tons of cards..

Everything she tries to get in her mouth or give a big lick! LOL

Well to say that things have been super dooper is lying. Seizures have not been great and this diet has been going very slow. very frustrating. And to top that off she is so constipated all the time who wants to eat when you got all that poo!
Neurology told me to get her some Mira lax and give her just a little tiney bit to help out..have not gotten to store yet to get that but I will soon...
When seizures hit her they are so strong. Oh man. Its so hard to watch her little body going thru that. I am on the edge of my seat when she is at school worried that she will have one at school...I carry my cell phone with me and the home phone..I hate to feel that. They LOVE her at school..they want so much for her..they are willing to fight for whatever it is that Madie needs. Gosh we are so blessed with great schools...Great Preschool, great Town...great. Just Blessed in so many ways.
But why cant I just relax. Sit back. breathe...let the heart slow down and soak in how blessed we are and try to believe that everything will be OK. *sigh*
Those of us with any child..weathor special needs or developmentally on target will ALWAYS worry about our kiddos.
Madie and her Meds are still the same no change in those..I feel like its too much for her. She has these "hazy eyes" sometimes like she is dizzy or just kinda loosing her alertness for a few moments..I cant explain it. may be a seizure too..ya just never know.
I guess with ANY meds..even if its for a cold or the sniffles can make kids woozy...but this is meds that she has to take EVERY day...I could handle an illness like a cough or cold better than this. Her nose has been very crusty too...yuck oh. I get a wet cloth and a wipe her crusties and sooner than later they are back..she HATES when I mess with her boogers. Oh and her hair. LOL
As the Holidays approach I am anxious. Busy Busy Busy parties, 3 hour drives to Jersey and Local Family Parties and lots of food and people. I am still a Turkey Day Girl My favorite Holiday. I seriously think my favorite gift last year was my new slippers..lol next to the new winter coat from my mother in law and my new cell phone from hubster :)
Christmas Time is just busy everywhere...cars and people and grocery stores and more cars and more people...gah.
Kills me that I am so far from my family. I miss then alot and certainly on bad days would love to just go over and visit. or have them for dinners etc etc..stinks we have to drive so far and some of the family only sees my Madie once a year! I miss my sister alot too..shes about 2 hours away in Mass..she spoils Madie rotten with wonderfull boxes full of christmas presents all for Madie :)
Well..I guess thats all thats in my head today..its been a good keto bottle day so lets hope sooner than later I get her up to 3 keto bottles a day.
Next week we have follow up with Nuerologist.dont feel like we have much to report but she is also due for some blood work too. fun fun fun
Have a Great weekend folks. :)

2 comments:

Holli said...

I hear ya on it all!! lol

By the way, Austin was super blocked up during the diet. Had to give Miralax nearly everyday...and had to keep adjusting how much we gave him throughout. Don't think we ever did get it just right. Constant battle there. I even had to give him a Fleet enema in the beginning. Oh, good times! lol

Good luck!

Zoey's mom said...

Miralax is a mainstay in this house.The key is not too much ... you'll be fighting the opposite if you over load her.

Sending you peace and love as you find your way with sweet Madie.Knowing ow hard it is to watch her fight but knowing she has you as her momma for a reason.

ME ... not a Turkey Day girl at all.Love Christmas but man,is it out of control busy or what?

Just keep taking those deep breaths.In and out and pray along the way.You'll get through this.Probably not with your sanity but you'll get through it!!