Peace and New Haircuts

We began pretty long..yep finger up the nose just cracked me up. It was a tough parting with all that hair...but it was getting super messy!



Not in the Hippy sense I assure you...lol Haven't hit up the local "head shop" for some Tie Dye Marley shirts.YET.And Pot made me WAY to paranoid for my own good! Oh and sadly threw away the Doc Martins in 2001...
When I say Peace...well in my home. In my heart. In my Life.(aside from having anxiety..nothing a little paxil wont help..lol) Its been a long trying 5 months.. not only with Seizure Kid and getting her stander ordered and covered by insurance, and a big bad month of 4 bad seizures in Feb...(worse month in awhile!)The school calling the Ambulance and taking a trip to Hartford ER for her seizure she had JUST as I was picking her up from school...sigh.
And my Sweet Hubster. I really dont feel like I want to talk about what we went thru these past 5 months but I myself feel our relationship has become stronger. And boy oh boy to I love him more for it. Raising a child with Special needs can take a toll on anyone..we just had to learn to take time for each other. Even if its just hangin out watching a funny movie or a quick dinner at Flatbread (mmm) I guess its more of the non spoken words these days that lets us each know we love each other more than we ever did before. :) (Now dont make me cry!) Just put on that old song from back in the days "More than Words" :)
This blog is mainly about Madie and to hopefully give people insight on the more Humorous side of raising that unexpected special needs kiddo. I feel without having a humor about it well...lets just sit here and feel sorry ourselves and ask "Ohhh why me whhyyyy me..Boo Hooooo!!" ALSO for people to know that I do have my days when I just absolutely don't know what to do with her! Days of tears. Days of Doubt. Days of even Resentment! When school calls me and tells me to come pick up madie cause she is tired and crying all day and then I get her home and she is perfectly happy I laugh. I kiss my sweet girl and ask her just why did mama have to come get her at school?! She will whistle and give me her lovies...sigh. I wouldn't trade her for the world. I keep good faith that someday we will get her little legs up and holding her on her two feet. I keep good faith that she will someday understand more of the world around her..If she is 12 and finally walking so be it. SO BE IT!.
There is talk of Kindergarden for her in the fall too...eek. Its a special ed room of course but its a longer day. In the Am. There is an option of a van to come pick her up and drop her off instead of me driving her which will add an extra hour to her day along side with the extra 30 minutes of actual school time. I am seriously leaning to the whole van thing. Selfishly adding more time to myself 4 days a week..
Madie has been super sleepy at school...she gets up at 645ish and doesn't nap before school..and well shes always been a napper about 1.. at 5 she really shouldn't need nap anymore...but seriously this kiddo needs one each day! I can only bring her meds into play? Does she have big seizures more than we know? She is pretty jerky and twitchy..at times knocking her over or waking her up from sleep as well...its a tough call. Sweet Girl just likes her rest. She can get pretty overstimulated too with all the noise at school and busy busy with her therapies and everyone making her "go go go". Everyone just wants her to get the most out of her day. I just dont know what to do with her. (oh.. there's one of those moments!)
Now if anyone has been to our house its a pretty quiet place. aside from occasional dinner function or sports game...lol Its just the 3 of us. All of Madies life I have just let her sleep when she wants to sleep! She was having terrible seizures daily! sometimes when she would wake from her nap she would have another and go right back to sleep...sometimes not and she would be awake for the most part of the day. I just never knew. Its really frustrating when school asks me why madie is being a certain way..for example sleepy.. WHO KNOWS! Depends on her day..how much she slept..seizures..how much she has eaten.. *sigh*
Shes been a happy girl today. I cant complain. Husbster is working working working...I have Latin Fever Ring tone ready to blast off on August 31st when this project he is on is over...LOL Going to be awesome! I know its good work but the late days are going to get really exhausting...:(
Anyhoo...Guess I am done rambling. Its a GORGEOUS DAY in CT today and Hubster and I took Madie to get a new haircut over the weekend (as he did as well..)my cutie patooties with their new doos. :) Id say they cut half her hair! hard to part with her pretty hair but much much easier to manage. Hope everyone is well and enjoying the Spring in the Winter.
Hugs
Me.
Hugs mamas.
Me.

In the News.

I guess I am due for a blog eh?
Its been a pretty long week this week...Madie sick AGAIN! this one was doozy...knocking her out for 2 days strait..super nasty nose and cough and whatever else comes with a nasty cold..feverish..oh miss madie..Today she however woke a little bit more herself..crying to get out of bed and happy when I took her out and changed her diaper. Hoping she will eat today too...gets me so nervous for seizures...:(! We have seen a record breaking THREE this month. Sigh. Just dont know. Maybe it was her way of letting us know that she was going to be sick soon.
In other news well she is going to be getting her new stander soon~! The order is in. The rehab place is going to let us know when we go to hartford to have her fitted and ready to go! I am nervous with insurance right now learning that the out of pocket expense will be our copay and 20 percent.. BUT BUT I am working on getting letters and possibly a grant to help pay for it. it stinks that these medically necessary things that could possibly improve a childs life..like oh..make madies legs stronger so she can someday stand on her own!? ya know..no big deal. Cost so much..and are not fully covered by insurances..
BUT BUT there is s BUT in there...and Im not talking about my big one..whahaha We did get amazing news that Madies ketocal will be 100% covered by Cigna..(yep droppin names..).which holey shmoley is awesome! We still have to come up with the money each month and they send us a check..which is so stupid cause we will just use the money over and over each time we cash it...for her keto. why not just save some paper and just cover it without having to do claim forms? well tis what it tis and I wont argue with COVERED.(we just changed insurances in Jan)
SO anyhoo in everyday news...just hangin with my sicky today..praying an praying i dont get sick too..ugh!Took Miss Madie out to a nearby shopping center yesterday and we walked up and down..putzed thru the Gap and Yankee Candle...Its been super mild here in CT..strange light jacket weather when it should be much colder.
I just imagine the polar bears looking for icebergs and the show Planet Earth where I cried when Sygorney Weaver says: "this may most likely be the polar bears final resting place since he cannot find food and is weak"
I bought madie some snow pants at the consignment store too and we have yet to use em! Figured no use in spending a bundle on new ones when she cant walk and Ill most likely just pull her on sled or sit her in snow..:) 8 dollars Holla.

Well anyhoo..I guess Im just full of rambles today. Hope everyone had a good Valentines Day..Hubby got me a pretty heart necklace with Madison engraved on the front and a reach for the stars quote on the back..precious. I made a nice dinner and well.. We are working on that stuff..we are a little rusty. We love each other. It was a good day. Waiting for my BIG present Miles! (lol)
Well I will keep all posted and try to get some new pictures of my big girl..I have not picked up my camera in awhile..Its sad cause it was allllways near me ready for whatever photo op madie would throw at me. :( and on that note my tummy is rumblin for some breakfast.
Till Next Time America... Thank you Maury! (I seriously had tickets to that show once but did not go..lol)
me
xo

All for the best eh?

What a day yesterday!
First and Foremost I LOVE madies school..they always say they want the best for my madie and they have gone above and beyond to help get madie allllot of things to help her!
Yesterday Juuust as I was comming to pick her up after a nice morning having thai food with my mother in law and poking thru antique stores and consignment shops..
Madie went into a Giant Seizure.
Now all my seizure Peeps (yo) KNOW that big seizures SUCK! Well it was to me her typical scary seizure..stiffened. Eyes rolling. mouth wide open. jerking. stiff. gurgles...spitty...hands clawed.. Scary Shit! But I have seen it before.
Typically I let her ride it out. I hold her little self and talk to her and rub her back and her hair..let her breathing calm down and lay with her for a few minutes till she falls asleep and or comes out of the spaced out state that the seizure puts her in. AT NO point have we ever had to use Ativan to stop her seizure. I mean I know of kids who have seizures that last hours! and scare the crap out of everyone and hospital literally has to sedate the kiddo!
Madies typically from start to finish maybe about 5 minutes..after the intital terrible part passes she is usually pretty out of it..and slowly falls asleep..not very responsive.
Well yesterday at school...she was in her big bad seizure right in the hallway of the school...her teachers surrounded us. The Nurse came running out of her room. The Nurse says she is foaming at the mouth and to call 911...The Nurse is almost yelling that Madie is "foaming at the mouth" and looking at me frantically saying "that could mean NO BREATHING"...
Within say oh 3 minutes the abulence is there..and two cops.. Jesus Henry Christ....is this happening???? (yes I think Jesus' middle name should be Henry..)

I try to explain that they just dont understand that this is what happends...she is spitty...of course her drool is going to be all over...she gurgles when she seizes..her body is is CRAZINESS!
I tried to tell them that I have dealt with this for FIVE YEARS! That maybe they need to read up on seizures and watch some videos or something...I was getting really defensive. Feeling like if I did not accept the ambulance ride that I was going to be scoffed at big time.
Then the Police Guy came to me and told me to calm down...oh lord..johnny law is going to take me in now?? Calmly explaining that everyone wants what is best for my child and that everyone is just concerned with her "spaced out state" that she could seize again.. AGAIN I try to explain that she usually does not seize more than once at a time.....she spaces out after for what seems like forever and slowly drifts to sleep! What do you expect a person to be like after a seizure? They say it feels like you have run a marathon and your body is spent..just imagine her little 33 pound self?! But I did not yell...I just cried and loaded up madies adaptive stroller in my trunk as the EMT guys loaded madie into the ambulance.
Fuck.
45 minutes to get to Hospital...by then madie was drifting in and out of sleep...wining between being bugged with monitors..stickys wrapped on her sucky thumb.. and bumps in the road..I wanted to scoop her up and run home..make her warm bottle and let her snuggle with mama..:(!!

I could not have loved my Husband more that he ran from work to meet me there...whew. He kinda took over holding her and talking to the nurses..while I was just spent from the whole ordeal. He was Awesome Man. XO

The Nurse was awesome as well!..she pretty much sided with us..but also saying there were 2 people in front of us and it could be a couple hours till madie is seen...We told her that these seizures happen and school wanted us to come to ER.. She said the FIRST thing that actually gave me a sigh of releif..."Some people just don't understand that this is our life...that we (mom and dad) know that our child will be Ok and we know her best"
I knew she was overtired yesterday..I just knew that all the noise and being pushed in the classroom and over stimulation...was taking its toll on my girl. To try to explain that overexertion can bring on a seizure was hopeless..to try to explain that her lack of sleep and over tiredness can bring on her seizures was again hopeless..
To explain what makes her grumpy is super hard..Somedays she will be happy only being carried or in her highchair... some days I cannot make my girl happy! Shes CODDLED OKAY! I SPOIL HER ROTTEN! OKAY! sigh....Some days...MOST days..she is relatively happy!
To try to explain how sometimes my girl just needs a quiet minute to breathe and be comfy was hopeless...
I know know know that school is SO good for her! She needs the exposure the exploration..the learning! But Miss Madie is not your typical kiddo! The school KNOWS that!
This all comming after the teacher tells me she has been grumpy at school and maybe something is wrong that she must be crying cause she doesnt feel good...
Do I have to explain over stimulation AGAIN?? Ya get me right seizure peeps? (yo)

Do you think I know what makes her tick each day?? Hell NO! It trial and error! STILL! But I know my girl better than anyone ever will...DO I know when she will have that nxt big bad seizure? Hell no! I know that her deal is usually sleepy. hungry. bored and just wants mucho attention one on one... overtired. or sick.(which is rare!) I do know that she only had one seizure last month! so hot dang!
It was a Long....day...madie zonked out early..mom and dad zonked out early...it was a day.
SOOooo if any of you have had to ride in an Ambulance with your seizure kiddo after a big bad seizure against your will..and or feel like everyone is judging you if you DONT go...you get it. And that's all I have to say about that.
Thank you Forest Gump.
Today...A new day. Maybe Ill just keep her home so we can play and nap all day..:) maybe go to Old Navy or the Bookstore and poke around..maybe sit in "Big Bucks" and have a coffee.
Oh My sweet Girl..
Me.
PS Stander will be here in about a mo and half! maybe sooner! Awesomeness!

Snow And Snow

Grandma bought Madie this super duper blow up slead...OMG I was cracking up at how stinking cute madie looked in it! We went to our small side yard and pulled her back and forth...snow was comming down and madie does not own mittens...LOL I KNOW! Heres a small group of pics from our snow fun. Now this is the stuff I just love doing as a family..all 3 of us. xoxo:)