Sunday, December 26, 2010

Christmas has come and gone.

I hate that I have to wax my eyebrows and my lip, I hate that I have such a big butt, I hate that I have anxiety attacks that have crippled me at times, I hate that I live so far away from my family, I hate that the cat only pukes on the wall to wall carpet in the bedrooms when we have wood floors, I hate when people stand too close to me and I can feel and or smell their breath, I hate that all my clothes are holey.....ok all pretty lame ass things..
All of these things are fixable. Go to the salon..see Rebbecca the wax girl, get up off my ass and exercise,(huffing and puffing) take my paxil, move closer to family or plan visits more often, close the bedroom doors so cat doesnt go inside...and take a few steps away from dragon breathers, go to the store and buy new clothes..Easily fixable right??
I have said it over and over and over that Seizures are my weakness.. and seeing my baby have them. Seizures I cannot fix. Seizures I am powerless over. Doctors to me are the "guessers"
I Guess this may work. Lets Guess that maybe this dose will work. Oh, I guess that did not work. Hmmmm what should be the next guess??
Its exhausting. Thinking abouit seizures, seeing seizures, trying all these stupid meds for seizures and watching madie look dazed from the increased dosages, talking about seizures when people ask how madie is doing..never anything cool like "Oh madie was standing in her crib this morning or WOW madie ate some carrot pieces today and was chewing! or I heard her say "ma ma" and it was amazing!
Exhausting the fact that Madie has such huge aversion to foods that she still eats nothing but bottles and I feel like its my fault for just being lazy and not "dealing" with foods or being more aggressive with her intro to solids..I get on a roll trying once a day or twice a day with baby foods and think that I am on a roll then things dont progress...and LOTS of baby food goes in the garbage or leaks in my fridge or cements itself to my wooden kitchen table and counter tops (which will someday be replaced but STILL gotta take care of what we have!) which means more work and more baths more laundry and more patience and more more more...I feel like I am being served a HUGE plate of food and being told to hurry up and EAT..but I am ready to puke. How about Overwhelmed. Yeah lets say that.

Chritsmas was great on the upside. Wonderful family and fun times. This mama got 2 Barefoot Contessa cook books and a new set of Paula Dean YA'L Cookware among my other small presents a couple of movies and a new camping chair. From mt family I got gift cards and cash and Madie got some adorable clothes and two new winter coats! Great Grandma Voegler also got us a food processor so we can make some foods too..SO hard to remember everything we made out like bandits! It was wonderful to see everyone too. Hubster and I stayed at a Hilton Garden Inn too...Pillow Top Memory Foam mattresses....Mommy LIkey! Madie was good, She even napped at my Aunts house in the same room as her other cousin was was a world record for them to sleep so long! hahaha
Christmas in CT was wonderful too. More Christmas cash from grandpa and great g-ma and another cook book for mama and some cutie baseball stuff for madie and OH Madie got herself a beanbag chair too...hee hee.. cutest. just plop her in the thing and she is happy. WHEN she is not hungry or wanting up. ha.
It was a busy day for sure. Stayed all day and she fell asleep right when we got home without her bath. She will be off from School till after the new year. No new years plans...Grandma and Grandpa are going on a Cruise the day after so no parties. Maybe we will do some dinner out someplace or at our house....we shall see.
I guess I am done rambling. Hubby is out at store getting some milk etc....and I think I hear the little person stirring.
It was a big seizure morning.
Please just keep faith that I can get this diet going and that I can somehow make ketocal taste good to madie. GAH.
My Brother in law told me yesterday that Miles and I were the best parents he knows and that we are doing everything we can possibly do to love and care for our assuring me that madie is a happy kid..I kept my cool and did not break into tears.... If only I felt strong enough to conquer this with avengence.

Hope everyone had a great Holiday. Big Hugs and Kisses to all our sweet peas.



Reagan Leigh said...

Dont give up Jaime!! I SO feel your pain! I remember wondering if we would EVER see an end for the seizures. Every other kid we knew had at least been seizure free at one point or another or at the very least had some relief with one medication...but not Reagan. Hers had just gotten worse and worse with no end in sight! But it DID end! If Reagan can be seizure free, than anyone can! Keep the faith! Keep praying! It will happen for Maddie! Thinking of you today and keeping you all in my prayers!

Holli said...

(((HUGS))) I know this battle is so overwhelming. Makes you just wanna wave the white flag and be done with it. Oh, but we can't. And I know you won't. I agree with Reagan's mommy, it's so hard when you read about all the other kids getting at least some relief from the seizures, but your baby isn't (or hasn't). I keep yelling, 'Why not Austin?! This isn't fair!' It's actually why I left the blog scene for so long. I just couldn't take it anymore. Not saying you should, just identifying with you. It sucks.

And Reagan's mommy has a very good point. It definitely made me feel encouraged! I didn't know she was seizure free. WOW!! See, it's our babies' turn now!

Hang in there. Wish I could give you a big hug and tell you how strong you are even if you don't feel it. I so remember the baby food battle. Up and down. It was never consistent. I felt like I was always throwing money away when we wasted a whole jar (or three) of food. I was so sick of trying new ways to get him to eat, that I made our therapist focus in on it and help me. Finally started getting on a roll and it's been fairly smooth ever since.

Thinking of you guys...hoping Madie will start accepting her ketocal soon so y'all can get rolling on the diet.

Linda said...

Jamie- I was looking at the photo of the dice (Oh God) on Ann Bevacqua's FB page and followed it somehow to your blog. I've been reading it from one end to the other for weeks. I've been mesmerized by Madie's strength, your strength and the journey you are on. Madie has just touched my heart, and the amazing parents that you and your husband are have been a huge inspiration. That sweet little girl and you are in my thoughts! I pray for some relief in the seizures for her. Very best wishes for 2011. One thing I know for sure, your parents are sending you love and strength and are so proud of you and their Madie. Linda Ehinger