Monday, July 26, 2010

Crrrazy Fun! and maybe a few updates as well :)

We were like two kids at the Bon Jovi Concert at Foxborro stadium..I have never been there although Miles has for Patriot Games and knew where to go as far as getting there.

My Sister in Law and her boyfried had WON the tickets at bar in Boston for a charity of sorts and were crazy fools to give them up! VIP parking surrrre was a long walk for us to get inside and take an elevator to our SWEET SUITE seats! and boy that free food and free drink was WAY expensive..

It was a huge open window that opened up in front of us and we could pretty much see all that was going on. Well the folks in the closer rows got a one on one of Bon Jovi Playing sitting on the stage...MAN at that point I was ready to run down!

We had a blast and did not get home till 230 as it took a normally 2 hour drive 3 to get home..parking was awesome but there is only ONE way outta that place and we all funnel into it.
I woke yesterday morning as Madie was crying to get out of her bed at 7am not knowing what planet I was on and bringing myself into the was freaky! I did calm down and get her fed and then when she took her nap LIKE AN ANGEL I promt;y took a great snooze..hahah oh man. Not so much protest of my picture..Ok ok maybe I shouldnt put pics of mama having a brew but MAN it was just such close to the front entrance and chillin with my Grolsh on a day that couldnt have been better at that moment. I behaved with lots of water between beverages as I knew we had to drive home and it was a pretty warm day. Turned into a GORGEOUS summer night for sure. Miles and I broke up the drive and I drove the last hour and half home after the Mass Pike..
Id say more tired from lack of sleep! I forget that I have madie at home for the brief time and take myself back to the Pre-madie days...then at Midnight when we finally got out of the stadium I rememeber and say to myself: "man tommorrow is going to suck" LOL
She was such an Angel yesterday..!~ Took a Great Nap, ate well, had few seizures as well! I love love love good seizure days! Back in the Spasm Days I would call them "honeymoon days" because I knew they wouldnt last. I was almost in tears when she finally tuckered herself out about 915 to go to bed. I did not want the day to end for her. Just keep her happy and keep those seizures at bay..
She was so interactive making noises and grabbing my face and laughing when I made funny noises into her hands..which were not so much in her mouth as they are constantly!
I hold my breath and hope for each day that she is not hit too horribly with her seizures (those little demons in her head I call them).
Sometimes she just bursts into tears for no reason other than she just wants to be picked up or moved around. I think she is frustraited that she cannot move around and at times and lacks the skill to pull herself up up.
Sometimes just walking into her sight she sees me and the arms go out for me to pick her up and if I keep walking it can signal meltdown.
Welcome to the "normal kid" Ill pick her up and she will grip my head and laugh! LAUGH! and have that smile on her face like: "this is what i wish"
Seizures can usually leave her winey..kinda like she is saying "man that I feel yucky"
When Meltdowns occur I try my best to soothe them but usually a few minutes alone in her bed brings her out of them or some bottle as she may be hungry..
Some days I cannot keep up with her hunger and somedays she wants nothing to do with her yum yums. I have been making her some of her foods as well that she gobbles! Sweet Potatoes, Green beans, Mixed veggie, Peaches (although a tad tart)..I think that is all I have tried so far...but YUM she loves it. Warm it in the microwave and instant meal! Im thrilled!
Hmmm in other news...
Still workin on the long story just they wont cover saying its Over the Counter Product and they dont cover that stuff...OH and its not for Diabeties..
I wonder if we had actually beagn this diet a freakin MONTH ago as planned how her seizures would be???
maybe I will never know if this diet will work for her....
Yes, madie will be FOUR in October!! Enough is Enough.
OK OK OK OK Not Blogging today to be a Biotch...not looking to rant and rave today.
Its GORGEOUS day in CT today and I cannot complain. Hoping to spend some good Q.Time outside and enjoy the break in this nearly month long heatwave! WHEW!
Hope everyone is having a good week.

1 comment:

Heather said...

Hope you were able to enjoy the sunshine and I so hope those nasty seizures were kept at bay.

So great you were able to get out for a night.Love Bon Jovi.I mean I think I am seriously in love with him!!!