Just a Moment. (of sorts)

Had one of those "Its effin not fair" moments the other night that brought me to tears.
I LOVE LOVE my cousin-in-law she is the bestest! She has a daughter who is the same age as Madison and just welcomed a wonderful little baby boy into the family! Now it was not the pictures of her trip to Disney that made me sad..they were cute as can be with her daughter posing next to Mickey Mouse and riding the teacups...
It was MY DREAM. I wanted to take MY KID there...I wanted to take pictures with Mickey and see Madie run thru the park happily taking in the magic...
AT that moment she had everything I wanted..
I was just beyond sad for my baby girl and looking at her how beautiful she is and feeling such an overwhelming sense of unfairness.... I wanted Madie to go with her daughter and cause so much trouble thru the park that we would not be able to keep up with their wizzing little selves...
I am by no means being bitter against her..I hope I don't sound it..heck yeah, Im jealous. And wishing that was Madie standing by Mickey Mouse..

Well Preschool has been a tough pill to swallow some days..
OH not for me of course..I just LOVE dropping Madison off to be cared for even if its only 2.5 hours..
Madie does it to herself waking at what she thinks is 645...being now 545 and school begins at 9...so by the time the day begins she has already been awake for nearly 3 hours er so.. SO bout 10ish she falls asleep in the class..
She gets home and she is hungry- usually refuses her all forms of food while she is there. killin me that they waste a Boost Shake...but aside from that...
Now maybe an "evening class" LOL like 3-630 or even a 2-430...after naps and fed and ready to go!
Can we come to a deal?
Yesterday I was standing outside with the other moms..still have yet to really converse and never make the first move in conversation..standing there with my child in her wheelchair/stroller...as the other kids run all over the front entrance wat greeting their little friends...as Madie is sleepy and could care less. Dropped her off and wanted to grab her back and just coddle her to death....
Other moms are nice but ya wonder what they think.."oh, that poor child" "what could be wrong?"...
OK coddle is not an option..but a very over protective impulse comes over me. Does that make sense?

Im Med news we have doubled her Banzel in the AM now at 400mg per day total. 200 in AM and 200 in PM...I worry with any increase..we give it another week and then MAYBE we can go down a little on the Depakine...we had initally increased back in May when Madie had a breakthru tonic clonic...but honestly..she has been pretty free of those going on a year!! Its these damn "drops" that are pestering her now..so by no means is Madison seizure free...but she is BETTER...We move forward.

I have been having hunches that Madies seizures are in the left side of her brain...she tends to fall to the left side..hints the lovely black and blue marks she gets on the side of her head..:(
OOOO Completely off subject!
DETROIT!
Oh we are goin baby! We just had Madies records from Hartford sent out to Dr Seizure himself... really hoping to get BACK in maybe the beginning of the new year. Ill keep ya posted on that! Dont know an exact date but we will work on that.
All in all things are going.... Hubby and I are off tomorrow night see an old friend play...well we have seen him play in all the different bands he ever played in and he is SO awesome! Its going to be him and another guy guitar jammin. should be a fun time. Thank you Grandma for babysitting!!
Keep all the little ones in your prayers and thoughts.
((hugs))

lifes little updates :)

OMG if I eat more candy I wll explode!
Its all going to Miles' Office GOING! ALL OF IT! LOL
I feel so fat. SO FAT. I hate where my body is now...I KNOW how I got there...my love for cooking and wine. Yup. that has to be it. The idea of the work it will take to actually loose the weight...the healthy food...the rabbit food....I want to take a nap thinking about it!
IM HUNGRY!!
When Madie was born I quit allot for her..I mean she is my child and I love her and she is worth any sacrifice I make!! I was working full time and go go go..it was an easy decision to quit my job...I mean madie needed me! she just did. and I was not to argue. SO much has changed since I quit my job...for one money is super tight and I hate that. I am a shop-a-holic....Are there meetings for that? LOL
We did not dress Madie up for Halloween...ehh just seemed silly I guess if she cant go trick or treats...
NEXT year..no matter what this kid is going out!
She always laughs when you make a buzzzz noise so I think a bumble bee may be suitable for her.
Well anyhoo...Friday at school was a rough one..all she did was cry...I guess that is what will happen when she gets no sleep!
Madie has been a tricky sleeper lately...getting up at 330....415....6...you just never know...and this my friends leaves her GRUMPY! and when she gets up at 630-7 and school is at 9...oh you betcha by 10 she is tired!
Well we are firm believers that she must learn..ITS time for school suck it up. Like when I was 18 working at Tj Maxx and I was scheduled for 830 in the cash room and was so hungover I couldn't see strait...learn learn....LOL
Today she was just off...a temp of 99.2...and a GRUMP...teething? dunno...gas? dunno. Ear infectinon? duuno...she has been rubbing head and putting her hand over her eye...sleepy??? I hope her eye is not bugging her...
She comes home from school smelling of teacher perfume BIG TIME...I wonder if she has an allergy to this fragrance?? gets in her eye and bugs her??? Seriously folks, takes 2 baths to not smell it in her hair!
I was thinking maybe her head itched so I got her some different shampoo for her hair..some Aveeno..I loooove the lavender lotion so I got some shampoo...nice and hypo-allergenic...
Madison LOVES tub time...I got her this toy from target shaped like a starfish that lights up and spits water out the top....she loves to watch it and stick her tongue out to get the water...I recommend it! :) I am nervous to free sit her in the tub cause her damn jerks keep on coming
In med news....
Banzel...*sigh...dunno...I think it really takes the edge off...like I see LESS jerks...Minus today which was just insane...
I have been trying to give her the med with food instead of mixing it in a syringe with shake.....hopefully that will help her get more of the drug.
She is still generally sleepy in the AM but wont go for a nap till bout 1230...

Am I rambling too much??

Pediatrician suggested that we get madies eyes and ears checked out as well...We wont get into the ear doc till Dec...and I have to make an Eye apt this week. Only cause whe she grabs her toys she kinda reaches and reaches almost like she is feeling for the objects...and when she gets the toy or link or whatever its right in her mouth..but its weird how she does it...
In eating news...AWESOME! My big girl has been eating any baby food flavor presented to her...minus squash and green stuff...LOL even today we tried the Yobaby banana yogurt and she gobbled it down!! WOO HOO!
She still cannot eat without her thumb and pointer in her mouth...she kinda sucks the food down...BUT SHE EATS!
her speech therapist at school is going to work on that..I think I will send in the NUK brush and let her use that...
WEll folks...Im out of thoughts..gotta feed Madie now..get the meds down and get her to bed....damn time change! WHO came up with this!!??
Where does that extra hour go? Are their people living in that lost hour? next on syfy.....
((hugs))

Trick or treats.

I vote for Treats!
Just carved the second pumpkin this moring while Miss madie is at school..
Rough day yesterday for her she was up at 4am and them at 630 am and school was at 9 and she did not go back to sleep leaving her overtired for sure. Well she needs to learn that its SCHOOL TIME and that she needs to sleep when its SLEEP time!
I left her this Am and she was smiles so I hope that was a good sign for a good day..despite the tears this morning....Packed a blanket for her incase of meltdowns..
Well Halloween is comming and supposed to be OK weather for the kiddies..Cant wait to get the pumpkin lights up and get those carved pumpkins glowing! I love any sort of holiday/festive decor! Its so fun!
Eating has been going real well..3 jars a day and bottles of Pediasure inbetween.well Boost Kid Essentals...each one comes with a 5 dollar off 2 pack coupon so we have been ALL bout those! She has been eating great! pooping great! (3x daily!) and well...seems to like everything I try with her...she seems to be in a spirt...growth and development wise.. I HOPE! They are so good with her at school and love her to pices! Other moms are Ok..still warming up to them..I am by no means a PTA mom...only one gave me a look so I guess we did not bond..LOL
Still a strange concept...I keep thinking that she is napping...
Well I guess that is all for now..better get a load in the laundry and go get the lil booger.
((hugs))

Danvahs Mass and great weekend :)

Ahh homeward bound. A great weekend seeing my sister in Danvers :) I stayed with her boyfriends parents who are just the greatest most welcoming people..we ate well, we laughed well, we chatted well...it was nice :) Allllways hard to leave. Madison left with many new presents as well ..how could I argue with that! lol
Madison had her meltdowns for reasons unknown but a little tylenol had her happy again..
Madison allways gives me a few hard times when Im flying solo with her..never fails.
She has begun to cry when I put her down or if I ignore her for a few minutes she lets me know she is there! Once I got her just close to her bed and she was crying."ok ok, I know..no bed!" she loves to be carried and even at times holds onto my shirt when there is turbulance..lol
Back to the grind tomorrow..Day 2 of preschool and more laundry to get done! jealous?
Madison will have her first OT and PT as well..hope it goes well :D Tomorrow is a shorter day due to teacher meetings..so an easy start for her this week.
OH and I have a little moaning to do as well..
6o minutes?? WTF? 15 minutes squeezed inbetween medicare fraud and tyler perry dressing as that ridiculous fat woman?? kidding right?
they could make a mini series about what we go thru with our doctors and the drugs and watching our child continue to have seizures after numerous drugs! It sucked and quite frankly I got nothing from it. girl with inovative implant..ok ok that was interesting but...cmon!
Well I guess that is all from me. Im a little behind reading blogs but but Im gettin there!
((hugs))

First of Firsts :)

Madie did GREAT her first day! They just LOVE her! i was so confused by the one way going around in circles parking lots and drops offs but I got the hang of it.
Said she fell asleep for about 10 minutes but otherwise tolerated her day!
BIG GIRL! I see a little yellow paint on her shirt I hope I get a creation!
Tomorrow we go visit with my sister who spoils madie rotten! I cant wait! :)
have a good weekend folks.
Big Girl is exhausted passed out right after her bottle...LOL
:D