Christmas in July

250 Cans...."a one time only deal" they say....hmm

Good things to come..we hope :)

OK now Im going to jam it out with my blog music...LOL THIS song...oh man..when I would have the worse day at work and work was FINALLY over and every friday at 5pm the local radio staion would blast this one out...Id be jammin so hard to this on the way home...or to happy hour...LOL!..just a good pick me up if ya ask me! WOO HOO!

Lots of fun things to look forward to! We are taking our summer camping trip next week for a whopping 3 days! lol...kinda hard for ME of all people when I don't have my own bed...trying to "persuade" hubby to buy an Aero Bed...Our air mattress is a pancake by the Am...YUP we TENT folks really camp like the pioneers!

Madison Continues to be a big girl sitter...sitting almost all day...just in her own little happy world. We HAVE HAVE to get a grip on these jerks...they knock her down they make her sleepy..they just are a nuisance! When we feel we have come SO far in seizure control..there is always a small part of seizures that just never goes away..*sigh* One step forward and 2 steps back...

Hmmm No word of Madies bath seat...waiting for the ATG Rehab place to give us a buzz to see if its covered...Miles' Aunt however got me a great lil Ring Seat that has yet to be tetsed.,..out of shear laziness or just forgetfulness...I have yet to try it...gotta clean out the tub too! ugh. BUT BUT I think it will work very well for miss madie..what will she think of that giant tub!?
OH the GI doctor had put our name in for some help with the Pediasure shakes...well with hopes that insurance will cover them...WELL we get a call from this pharmaceutical company saying they are sending us some...covered as a "one time only" thing...Oh....One time only?? I guess Insurance will give us some...but not for a life eh? Ill take ANY I can get! I dont quite understand how that works...but UPS will bring some tomorrow or Monday...
Today I am sanding my bathroom walls...YUP...sanding....WELL when we moved in now can you visualize Dark Dark like Olive Green wallpaper with SILVER sponge painted blobs all over it?? WEll that is what we had to steam off...well we kinda did not steam good enough and glue was left behind that showed its ugly face thru the paint and made yucky spots...not sticky just rough yucky spots....SO now I have to sand the daylights out of the walls and probably prime them and re-paint....
We were in such a rush to get the house ready to move in! It was a bad job on our part that has created more work than necessary...doh.
Well anyhoo...roughly 16 days till we get our butts on a plane to Detroit...have a mentioned that Insurance wont cover the PET scan....YUP. SO if anything we can get a grip on what these jerks are...maybe get some insight on madie from the seizure god himself....
have an awesome weekend folks.
Just Read the book The Pact by Jodi Picoult...shoo wee! heavy duty stuff!!

Big Girl Big Girl

Iam still so amazed how madie sits...sometimes I just look at her when she is sitting and talk to her...then I tell myself I should give her a toy to hold or some sort of textile toy to touch...lol..she is just so stinkin cute. Ok Ok enough of my bragging..:)
teething has been bringing madies mood Doooowwwwwwn big time certain days...oh man! I hate hate to give her too much Tylenol...with her meds already taking a slight toll on her liver...:( BUT desperate times call for desperate measures..and in 45 minutes she feels better. We get blood work done in a week...OH OH Can I just say that madie had gained 3 pounds!! 3 stinkin pounds! WOOOOO HOOOOO!!!! her overall body feels stronger when you hold her...and at times is just as fidgety as can be..
Oh dont get me wrong her meds make her sleepy...and it stinks early Am when you just kmow they have kicked in and she is sleepy once more..she usually springs out of it by the afternoon and is OK she is very tricky to get down for a nap...always sitting and falling over and sitting and falling over...even when she is too too sleepy to hold her head strait!
This mama took a much needed get-away to the cottage this past weekend...My sister in laws boyfriend who has been a chef in his past life...(lol) made us dinner...us meaning about 10 of us...we feasted on some lovely steaks wrapped in bacon and scallop kabobs with roasted asparagus and a corn and bean mixture with a Mexican taste to them...Ohhh man it was so good...with the guilty glasses of wine and good company it was great night. Hubby was home with little one who was giving him a tough time crying and crying ....oh gee...I did not know what to feel about that...sorry for him but also relief that was not dealing with that right at the moment! NO OFFENSE!!
I could not help but feel I was missing something without my madie...its strange haha without having to always make sure she is fed and medicated and that she is not rolling into some furnature. I kinda tossed an turned that night for some reason getting little sleep. It was really hot that night as well which did not help.
Sunday we went to a lovely place Brunch( It was Madie's grandma's Birthday) located right next to an Opera house that we went to see Camelot I am shocked that a beautiful place like this exsists just an hour away! My inlaws go there all the time and are just huge lovers of the theater. We certainly enjoyed a wonderful Brunch at the place next door...fancy fancy. Miles met me there at noon and joined us ...madies cousin watched her for the day :)!

We are currently less than a month away from our trip to Detroit~ Fighting with Insurance for her PET scan...doh! SOOOO if all else fails we will be there for the long EEG and a meeting with the doctors.. Keep ya posted on that one. Insurance says that its not necessary if its "exploitative" gee wiz!! SOme of these insurance big wigs need to have kids with seizures...."just sayin"
SO anyhoo...some pictures from this morning...she was sitting for a long time..shes napping now so I guess its time to get something done eh?
Hugs
ME

BOINK...CLUNK....DOH!

OH MY GOODNESS! I cannot seem to get anything done without Madison falling on her head! Always sitting and falling! Part of her learning..there are not enough pillows to surround her with and we dont seem to have the space to let her roll and sit as she pleases! I love the wood floors in our home and someday hope to replace with newer floors...I am thinking maybe the whole upstairs should be carpeted...uuuugh! I hate wall to wall...we have only carpeted bedrooms and just to replace the nasty carpet that was in the house when we bought it was 2 grand alone! eeek! Bigger area rug perhaps?? 2 hundread vs 2 grand..eh??
Ohhhh Madie..such a big girl.
Jerks have been more of a nussance than anything making her fall from her sit or jerk her from a nap but she seems to be OK...we find out in less than a month if her spasms have in fact returned and what step we need to take if that is the case...God help me...
Sleep for her has been fine...tough to calm her out of hyperness to go to sleep but once asleep she is out. Hubby went and bough that attractive pipe isulation stuff so we can cover the bars of her crib as she keeps sitting and falling in her bed as well...we ran out so we have to get some more to cover all the bars...gettin there. Looks nice eh??

bumper is getting old and kinda warped out over time and washings...just kinda waiting for that extra few bucks to go get her newer bedset...out with the baby set in with the bigger kid set...fairys or lady bugs I am thinking...:)I remember being shocked that this froggie set cost more than our bedding!!
teething has been a nightmare somedays but she has been a river of drool with the new found positions...we wonder if she was always drooling this much we just have had gravity on our side as she was always laying down...lol.
ehh we just keep changing her shirt..as long as she is content.:)
Well anyhoo..August is around the corner...already getting busy before its began! We are kicking off the month with a mini camping trip for a few nights and then a week off and come hubbys birthday on the 15th we fly to detroit..the following monday we are IN.
I hope to get to the cottage this weekend to relax weather pending...
OK well its time to feed hungry kid and get her in the tub tub..
Hope everyone is hangin in there. :)
Me.

Ditched......

I totally dropped out of feeding therapy today! I had no clue what I was doing...but I knew as I sat there watching the 30 minute "by the book" feeding time pass by I was dying to get out of there...
I have NEVER felt as if I clicked with this girl...she is AT LEAST 10 years younger than my 32 years of age....she was all tan from her vacation last week to cape cod..
I signed a paper to release information so that her birth to Three OT could send the reports to her and then that was that...I was just a out...no bye byes...no nothing I just picked up madie and left...with the attitude of "whatever"

OK so before anyone scoffs at me.... (oh gee madie just fell...let me collect my thoughts)
Before we all say this is horrible... I felt as if all that I was getting from this so called therapy was all the crap I was ALREADY doing at home!! Ok so I go and watch this gal TRY to feed Madison......sometimes it goes well and sometimes it just doesn't go.
THEN she tell me that since I did not show up the week before last (see hail storm pictures) if I dont show up one more time they will "take madie out" of the schedule... OK so we would be kicked out.
Great......
Well upon hearing that I was just pissy...our time was FINALLY up and I was outta there....I was about to cry in the car...not knowing what the hell I was doing...feeling I was letting madie down...feeling that we will NEVER get her to eat NOW!! ALL cause of ME!!
I was feeling that I was loosing Patience...MAYBE I need to give it time....suck it up and just GO to therapy.....
My wonderful hubby was so supportive....saying that if I felt it was not working that he would trust that...gosh....one of the many reasons I married that guy huh??
I just wanted to share that...and the new pictures...madison is on a roll with her sitting...she loves it!!!!!!
She BONKS her head ALLL the time!! BOINK her head and BOOM her head! Oh gee!! rolling up a storm...already pricing baby gates for upstairs loft!!
I hope everyone is well...I am thinking of lil Reagan tonight...I hope her mama gets some sleep...and lets keep those prayers going for seizure freedom!MAN oh MAN!
Lots of Hugs to Zoeys mom too....:)
All of our kids will meet SOMEDAY!!!!
:)

Boredom

From this morning :) Loungin in her jammys. What a sweetpea.

No news to report I guess..hangin out. Its boiling hot in CT today..hubby is watching space shows and madie is making her noises. and sitting here and there.I let her have the run of the room with as much coushiony things I can find to surround her.
We are taking the plunge and getting her hair trimmed soon! I know I know...LOL its just a mess! maybe just shape up the curls..:)

More Pictures! I just cant resist!

Its 9pm...these are pictures from this morning..Madison continues to fight her sleep and still continuously bringing herself to a sit...LOL!! Its getting tricky to leave her alone on her blanket!

when she makes this face..hahaha its short lived and to catch it....priceless.

She was actually touching her toy!
When her PT came today I was dyin for Madie to show her skill! NOPE...not untill the very end of her session did she finally get herself into a sit..when she had spent the most of the day getting herself up and falling..over and over.

If at first you dont succeed try try again

Well my baby girl..you keep on tryin and tryin...and TRYIN...and sure enough Madie;s new favorite thing...pushing herself up to a sit..here are some of the steps she takes to get there. In the meantime as I try to type she is doing this over and over and THUD she falls over..but can remain in her seat for more than a few seconds! I have to go and fix her so she is "within the blankets"

Now I always hold my breath when Madie does anything new..but honestly she has been rolling forever and getting herself into the "frog" I call it..only the past couple weeks has she been doing this! the other times madie could sit she was on steroids..Well I sat her up and she stayed. She herself is getting herself into position THIS time!!

Now my dreams of running skipping and jumping are still on the back burner for sure..but gee wiz! Milestone???? Its about stinkin time!!
She has therapy in 30 minutes and she better not be too sleepy..cmon show your skill madie!! These kids make liars out of us when you want them to show off eh??

Will Madison beat the odds..ya never know. Anxious as always for Detroit with hopes that she is not Infantile Spasm-ing anymore and other than OH JUST THAT...things are goin.
Keep faith that madie will continue to progress and "get there" somehow!!! I still cannot fathom that her pre-school will be happening in OCT!! (when she turns 3) Went to of all places (Im such a trader) Wallmart and found her some cutie slip on sneakers so she can haev shoes in school...oh something tells me she will not like having those on her cutie tootsies!
Well enough of my bragging I am sure to jinks myself.
:) Hugs
me

Good Things!

Oh my madie...she is somethin...Just yesterday by the way...;) she pushed herself up to a sit!! Ok so a wobbly sit but she was UP..tryin and tryin.. She continues to seem to be moving forward..I am on the edge of my seat wondering what will come or go next..will she continue to move forward? Are these jerks that plauge her all day Spasms?? they are like quick stiffenings..arms and legs involved and her eyes go weird for a second then she is fine..
I am worried alot about them but she seems to be doing OK so far so good...Newest thing is being more accepting of things in her hands..she loves her krinkle paper and sliming my face as she grabs for noses and cheeks...she seems to be more accepting of things in her mouth as well...licking things and biting things..NOT holding them to her mouth only sometimes..BUT doing it!! And the giggles...Ohh if I could bottle that giggle..she certainly knows funny. Usually in play with my husband or I or funny noises and faces..cutest.
The vocalizations are getting pretty funny...of course no words but boy she is loud..AHHHH OWWWWWW EHHHHH pretty funny.
I hate to brag about any of this...Ive seen if before folks. madie has had the ability to sit 2 times..BUT she was not using her muscles as she does now..more a glazed ballance as drug after drug was pumped in her tiny frame...Ive seen regression is all I am saying. Mostly with her personality...from happy to DUHHHH drugged.
She is doing well...best she has been in along time! keep it up Madie!!
Her Appetite has been BIG...ok so still a fuss for solids...BUT bottle wise she is up there...4 and a half yesterday..with Duocal is a load of calories!! GROW MADIE GROW!!
Infantile Spasms...a word I was certain was out of my vocabulary..could possibly be back?? Do they come back?? its been at least a year since we have been dealing with spasms..her "new" horrific seizures we have not seen one in a few months...I used to have a video but eh...deleted it..a breakthru uh...I wanna say in May...dunno dont quote me on that one...but none since.
Detroit is carved in stone now..August 15th we fly out..spend a day with family and head to the hospital for the looooooong EEG on the following Monday. We will be home on Wed after all the tests and doctor visit are said and done.
Tonight my brother in law comes over and we have a mini grillin and chillin..hoping to get my lil trouble maker to bed early!
Wine Me!

PS

PS...look what fell yesterday afternoon in CT!!

It sounded as if we had a tin roof!

Yes that is my dumb self leaving my car outside durring all this! Hey, it was good exfoliating wash! Now where is the wax storm??

....and then comes crawling???

AHH@!!! this a good sign of mobility to come??? Will be plateau at this? Will she gain MORE strength and GO?? Oh gosh! I jumped from my chair at the computer and caught her just trying so hard! (hints my toes to the side...LOL)

Now allot if times I see the "oh..well at least he or she is doing this or that" and tend in a slump that my child cannot do the things that other kids can do..which I guess comes with the territory of a special needs child....
We plan on STILL camping and STILL going to the beach and STILL going on vacations and STILL living! WITH a challenge...Ohhh its tough for sure. "lugging" madie around and I still carry hopes that she WILL one day be mobile! I am still planning on donating her stroller to a family that cannot get one...whenever she DOES outgrow it..
Weathor or not she DOES get up on her feet one dya we deal with it day by day and love her no less.

We are heading to Detroit on my Birthday August 16th..Flying out that Sunday and EEG on Monday and PET on Tuesday along with Doctor visit..then fly home Wed...By no means a vacation but much needed information into madies seizures. Which are still jerks at this point..:( and worrisome.

4th of July was pretty fun...we have missed out on fireworks since madie was born I think...or did we see them the first year she was here? id have to run that by hubby.
Food Folks and Fun were great as usual..It was pretty hot outside and I kicked myself for not going out on the boat but we had to get home...:( I was on the edge of my seat with Madies crying outbursts adn her teething...we were up half the night before with her screaming...Hubby was not in any mood to go to cottage but he was a trooper...I love you more for it dear!! :)
No other news I suppose as of now..just hangin..beautyfull day in CT FINALLY no rain for a whopping 2 days!!
Heading out to Tarje to spend 62 bucks on two more cans of DUOCAL...yumm! Oh and feeding therapy that I alwatys seem to forget about untill 15 minutes before we are suppoed to be there!
:)

3 day weekend blis!

Well folks...Detroit is up in the air now..we are uncertain when we are going there.I guess the doctor is not going to be in town the days they had given us..keep ya posted on that...ehhhh
Spent long weekend at cottage last weekend and now Sat we head back for some 4th of july grillin...yummm!

Ya know, Dads have it so easy! Madison has her dad wrapped around her finger! The two of them hangin out on a comfy night after work :) He can get her to giggle more than anyone else!
Madison continues her funny jerks...we anxiously wait for the doc to get back to us so we can get in for that long EEG..but in the meantime she seems OK...not really stopping her noises..or her urge to crawl and move...I still worry nonetheless...:(
I just hope that this weekend she gives me a break with her teething! cmon!! happy girl....ya just never know.
She has been non stop today..no naps at all! Just when I thought I had her down for a nap and I breathed a sigh of relief and layed my head down to go to dream world...Nope...keep dreaming mama. Its about 3pm my time as I type....
I think we are all on different time zones..
Tonight after all this wakefullness I hope madie will go to sleep early...its been about 9-10 lately...whew! where is my break?? I am going to make up a big ol pot of soup and TRY to relax..:)Hubby has a three day weekend as well! woo hoo!