Oh my lil Madison..:)
Well we have not seen seen an ugly seizure since Wednesday...we increased her Depakote by 1/2ML going to 3 and 3 now..she seems a bit sleepy the first couple days as with any increase...but overall..eh...ASIDE FROM A STINKIN COLD! gah!! the darn stuffies just keep comming! And she has a small cough that goes with that..sounds so cute when she lets her little cough out..like a lil person :)
I dont think she sleeps well because of it.:(
My lil sweetpea you continue to amaze me with your endurance to the meds...I am getting her blood work done on Monday although the doc said Friday but I told them that did not make any sense since we JUST increased her med....so they agreed...lets give it a few days eh?? besides she was kinda having a sicky day..
SOOOOO anyhoo....Its nearly 5pm now and the weather is gorgeous in CT! Oh man! I went to the ZOO I call the grocery store today...oh man! People are crazy! Im Just tryin to get some Apples lady! Eeeeasy! LOL It feels like just when you think you are done spending money for awhile ya run out of food...and Oh prescriptions have to be filled and DUOCAL runs out...eh!!
We have a week ahead jammed with therapies and another GI follow up...so I can have more guilt that madie is not gaining weight.... She is so tall and skinny!! thank god for adjustable waist pants! hahaha
Sweet Potatoes were a HIT! I was so stoked when she was actually smacking her lil lips...oh and Squash too was a HIT! I hope that one good eating day is a beginning of some MORE...ya never know with Madison... Ive been trying at 5 each day(eek in 10 min!) to feed her food and then come 7 she gets her bottle and her meds...seems to be working out..dunno..:/
I hope everyone is hangin in there Sophie- the lil sweetpea with her surgery! and Reagan to get better control of her seizures..I JUST KNOW when she has less seizures she will grant you sleep! Lil Zoey and her treatments and of course my main man Austin...what a BIG kid he is becoming! HES HUGE! hahahah I cannot get over the drool on his shirt too too funny! And of course for madie to gain her muscle strengh and work harder on her crawling!
And Lil Cami you are still my inspiration ;)
Prayers and Prayers...keep em commin!!

showing their ugly faces....

This DAY....uuuuuuuhhhhhh
To say that we did not have a great Weekend at the cottage is an understatement...I am so blessed to have such a large wonderful family :)
Great food and great company was had..great weather...great stroll thru my favorite used book store and great madie...alll tuckered out by MOnday evening from all the play. :)
When I say "uhhhh this day" I mean well...today did not have the best beginning to it..Its been a long while since a seizure has showed its ugly face and today that is just what it did....I was panicked as she just kept going and going and going...it was so strong I called her name and held her and kept saying stop...stop...stop..she was a compleate mush when she was done and slept for an hour and half...
I will be honest and say I just broke down...I just cried anc cried and cried...
I put a call into the Neuro and ask just what the heck now??
When I heard back it was suggested to me that we go up to 3mil twice daily for her as far as her Depakote.. which was kinda my plan after she was off her Clonpin...but it takes a big seizure for them to finally agree....
I was instructed to give her 1ml immediately and then her usual 3ml tonight and then beginning 3ml in the AM tomorrow...we shall see....
I see her seizing and its like I am watching her being erased...erasing her sparkle..erasing all the good things she has been doing and breaking me in two...my heart was so ached...I was feeling so helpless...certainly a breakdown moment.
She however woke from her seizure nap making her happy noises but still groggy..fed her and she was just calmly hangin out rolling up a storm on her blanket...
Her mood has been generally sleepy today and its continuing to break my heart...she sleeps now and has PT in 30 minutes...
At least she has been taking her bottles Ok...
Maybe its just a glitch...maybe its just one of those seizures that "just happened" and then when we can get her meds a lil higher she will be back to her usual self.
I DOnt ask God for much...maybe smaller thighs...but I am not by no means asking him for anything but strength to make it thru all this...to give me the "Ooomf" I need to be there for madie and not want to crawl into a cave..
I ask everything for my lil girl...everything...give her the chance to be seizure free and give her the strength to walk and jump on her own two feet...get out of that baby swing and go over to one of those so called normal kids and throw sand at them...so I can yell at her to be nice to the snotty little kid....lol
yuppers...not fair folks..just not fair...Ive had many tell me that Madison was given to me for a reason...that God had a plan for me to take care of this special little girl. At times do I have no CLUE what I am doing?? of course!! But I learn as I go....
Ill keep ya posted...
((( hugs))))

Swings at the Park

It was kind of bitter sweet as I watched the other "so called normal" kids running around the park and the moms who compleatlty ignored me without a hello in sight..I just pushed her in her swing and after ahile I just felt weird so we went for a walk and I just talked to Madie the whole way.

When I avoid these public play places..its for a reason...by no means am I ashamed to have a child with special needs and I am certain its good for madie to experience these places and see the outside world. I guess its just me. Its heartbreaking to not be able to set her free...let her run and climb and even make a new temporary friend in one of the other kids there.

It was a gorgeous day nonetheless and the temps were about 90 but it was dry..when we got home she was ready for some food and took a nice nap...waking happy as a clam. :)
We will however return with Madies therapist for some more swing time :)

Memorial Day weekend

Ahhhh the long Memorial Day weekend...an official kick-start to the summer...As much as I JUST LOVE The red white and blue decor...(a hint of sarcasm) I kinda think of memorial day as just a family time...PICNICS and BBQ..sorry....:( But we can also I guess say that we are proud to live in America...eh??
Back to the Cottage on Sunday to spend the night and have memorial day BBQ...! Tonight hubby and I take his brother (Uncle Pieter) to dinner for his birthday and Saturday we may just go finally get a mattress for our guest room..so we can stop storing junk in there and have a real spare bedroom!
In madie news....I called the Neuro yesterday and missed the call back..doh! I had called asking if we could..since madie has been off her Clonopin...uh...3 weeks now if we could have the go-ahead to increase her Depakote by a 1/2ml to bring her to 3ml twice daily... WELL the message the nurse left was telling me to leave meds as they are and to go get blood work next month. They will send me the lab form. These stupid jerks and Twitches get madie every day...not nearly like her full blowns but GEEZE..I am NOT about to wait till I DO see one! She is soooo sparkly! she is workin those lil muscles and trying so hard to coordinate herself to a crawl..just c..ca...ant get there...lol To see her regress into seizure land again scares the you know whats outta me!
Nothing really else with madie...I feel in a stand still at the moment..but its OK.

Yesterday I dragged her out to David's Bridal (with grandma and madies great grandma) about 45 minutes away since I had this Bridesmaid dress from a cancelled wedding...(even longer story) but was stuck with nearly 200 bucks of credit! Every sale in that place is final no matter if you have had alterations on the gown or not!! B-s...yeah
BUT for the price of the dress and those shoes I got a party dress, an evening bag, and some nice strappy shoes...
Madie was an ANGEL....it took about an hour for me to stop calling myself fat and finally find a dress!! I hate wearing dresses! I am verry much black dress pants and strappy shoes kinda gal...no no dress..LOL It was an adventure for sure...and my lil Angel was just that...An angel. Even survived lunch at the Olive garden :)!
Well I can hear my lil bird right now.. and I better go have some breakfast...I am having theeeee worse time trying to eat right....I hate it!!
((((hugs mamas)))
ME.
PS shortly after that photo madie catapulted herself out of her BUMBO falling sideways...she was OK..no tears...just trying to roll...oh gawd, I laughed...

Crazy Kid. (feelin good)

To say that Madison is feeling better is an understatement! LOUD and LOUDER...sometimes at 3am sometimes at 2am...sometimes at that tricky hour of 4ish..
How can I be anything but sleep deprived...she is an angel. I have noticed her getting a lil more tolerant of things near her mouth...stuffed toys, my finger(which she will bite!),her blankee...she puts in her mouth and pulls it.. its the cutest.
As far as food..wellllll ehhhhhh I am not the best at trying her food every day but its better...Apples seem to be the fan favorite so far...and when the spoon comes close to her mouth she shakes her head no no no no and wont let it in...
She is also getting her top left molar in OUCHIE...gums are raw back there but its not anything that has been as bad as that bottom molar...dunno

Summer is underway...weather is weird in New England...tonight they say FROST and the rest of the week we will BOIL...hahaha whooooo knows! We all look forward to many more weekends at the cottage and some camping trips roughin it in our tents..lol We have a HUGE tent we can fit madies pack and play inside with our air mattress...I am still pushin hubby to get an Aero bed.. Ours is a Pancake when you wake up!!!
Anyhooooooo in other news..
Wein off Clonopin has been great. she is so much more awake and happier if you ask me! Stupid Pills...GAH! I called the Neuro and told them that she has been off for 2 weeks now and that she is doing fine...NOW there ARE Some twitches that we need to iron out and I think this is where weight gain comes in handy kiddo!! I am hoping to soon increase her Depakote a tad and get rid of these darn twitches...I have yet to hear back...I had to leave a message.
She is still on Zonegran 50mg at night only as well..:)

I am hoping tonight that Madison calms down enough to go to bed by her usual 9pm...last night she was up till 11! Oh by 10 I put her in her bed and let her entertain herself...she woke this AM with the WET wet diaper but slept till bout 8..

Although she is doing Ok I am always on the edge of my seat hoping that i will never see those big dreaded seizures...going strong kid.
I hope everyone is well..Sorry to cut this one short...gotta work on getting kiddo to bed now. "get with it mama!"

Some Pictures and A break from Seizure talk..eh?

Some Pictures I wanted to Post..A lil break from Seizure Talk..:)
~A funny yet painfull story...I sliped on a fabric softener on my wood floor and now have two bruised knees now!
~I watched the Season Finale of LOST last night and cried!
~My husband got me a card for mothers day that plays "cha cha cha Chia" (like the chia pet..lol)

Madie is giggling in her crib for no reason...can i just record her?? she licks her tounge around in circles with her big bad molars comming in! I may have posted this pic already..eh?

Above is Madie and Dad on the beach..one of my favorites.
This is madie "fake coughing" below.. Dont ask...LOL she just does it! all her lil grunts and noises and screams and Bvvvvvvvv's are just so funny! I try to focus on these good things and just be pateint for the rest...Cause that trip to Disney still needs to be booked lil one!!

To say the cottage is relaxing is an understatement...I just love going there...I just love the small private beach and of course that its like 8 degrees cooler there than home! Ahhhh lovely breeze! I was really tired Saturday but I was determined to go and have a good time...My allergies have been SO bad this season...and I tell ya, if I did not find allergy meds in the bathroom at the cottage I would have never lasted! Finally I was able to get a good night sleep...or the saying on the wall stands true.

We dug madie a lil sand chair in the sand and she was content as can be, I snapped some pictures of her.. the sun was so bright in her eyes she got upset soon and we had her in her stroller..I really want to get some kind of baby tent for her..LOL that would be awesome...or just remember ti bring our umbrella next time ;)


I cooked Dinner for my Brother in laws...all three of them plus a girlfriend and hubby and after madie was in bed I retreated to bed with my Allergy Med and my book I was opting out of festivities...It was all good :)
I all ready cant wait to have many more fun times here and watch madie grow up going here. its so nice. About an hour away in Nyantic CT...

Not much else here..madie and her teething continue to nag her and when I give her some Tylenol and some nice cold Milk she is alll better :) SOMETIMES waking in the night but usually just loud happy noises...U can certainly tell when your child is feeling better and has less seizures...its like an awakening...for real. The new found wakefulness is something I dunno if Madie knows what to do with!! and this comes to her at 3am! gah!


We continue to truck along...she has great therapists working with her...She has been bout a week off her Clonopin with no ill effect....happier if you ask me...Down to ZOnegran and Depa-Kene Valproric Acid and her Vitamin...her Carnatine.
And all is OK..
Tonight mama goes out for a much needed girls night..Hubby has taken on Madison Duty for the night since he has to get up so early in the AM..
Hugs mamas....keep the faith.

R&R Time

The Weekend at last!
This weekend I am anxious to get back to my inlaws beach cottage and relax...hopefully get some pictures of madie on the beach looking sweet :)
Not much change in madie these days..have yet to take the stroller for a spin dunno if between my overpacking and the cooler of goodies that we can fit it in my Honda..Its all good.
Tonight I scamper to do last minute laundry and hubby is going to play cards with the neighborhood guys...
Madie has been sportin a lil cold..runny runny runny...sneezin and sneezin...lots of mucus..I tell her that is what mamas shirt is for...LOL I really want to say she is having allergies..can little kids get seasonal allergies? Cause Im just DYIN...tree pollen after a good few days of rain is full force..We hope if we all just keep our hands clean and wipe up those messy sneezes she will be good as new by Mon.. I can hear her coughing as well :( she sounds like such a little person...
Anyhooooo I wish everyone a wonerfull mothers day..no plans here...I am going to the salon on Monday to get a much needed hair cut and highlight..I feel like a movie star when my hair dresser is done with me! The Gay men do theeee best hair I tell ya!Maybe hubby and I will make a date for dinner my sister in law has said she will sit..
Hugs mamas..stay strong. keep lil Zoey, Austin and Reagan in your prayers that Reagan gets a break from these nasty seizures and some much needed rest for mama.. and Zoey makes it thru her treatments with flying colors...And Austin..big guy..just hang in there.Im thinking about you all...:)

Stroller is HERE!

WOO HOO!! we ordered it in Jan!


I think she very much enjoys crusin in this bad boy...it was raining today I am not ready to get it muddy...LOL

We are so blessed to have such a great Birth to Three service that covered ALL out of pocket cost for this stroller...total cost with insurance AND Birth to Three was almost 5 grand!! eeeek!!

WHEN madie doesnt need this stroller SOME day...I plan on donating it to another child. :)

Got a call yesterday letting me know that the stroller will be delivered between 1 and 3 TODAY..Along with a guy named Mike who will assemble it and explain the thing to me...
Madie was up last night at 245am screaming...I can only assume teething?? I have seen no big seizures?? She has also found a love LOVE for Milk...(or did I give her gas from her Milk? eh?)she just chugs it down..nice and cold! No heating! This morning she was refusing her bottle but when I sat her down to have some banannas she ate a good few spoonfulls. and a half bottle of milk...Its better than nothing but an 8oz Milk only had 150 calories..better than NONE...eh?? I just need to get food in that tum tum with her meds...they can certainly upset her tummy with no food.
feeding therapy is cancelled this week cause the girl is on vacation in Bermuda..I tell ya, she is younger than me!

*sigh* ANYHOOOooooo
I better get myself into gear its already Quarter after 9 and her OT will be here in 15 min...EEK! Hey madie NO sleeping on your blankeee!! Ahhh!! :)!!
Later..... Therapy was a bust...madie wanted her nap..and was not about to let someone make her bounce on the yoga ball...oh well..till next week huh?

(((( HUGS))))

Meds..Teething..Clonopin..Therapys..Pre-School...have I missed anything??

I have so many thoughts going thru my mind I just dont know where to begin...I type and eat cereal at the same time so bear with me :)
Twitches and Jerks...persistent lil boogers...teething and sleepiness..and Clonopin..er Klonopin err Cloza-PAM...however you say or spell it...
I want to so badly get her off this drug...Doctor explained that you may see some seizures and I guess the plan was to just reduce it..I switched the dose to the AM and ya try to say that well..she has been on the SAME meds for many months and why would she be so extra tired NOW....Teething?? For sure. She breaks into screams sometimes...shoving a finger into the back of her mouth..choking on her own saliva..MEDS?? Well it IS a different FORM of Clonopin...these disolvable tabs not the yellow ones I am used to...
I seriously do not know what to do...I fear that not only do the seizures effect her growth and development but the meds as well..Its so frustrating to watch her try so hard to get up and move and she still has yet to do so! people are squealing with delight when they see her roll...Well she has been doing that for a long time....BUT NOT say...in JAN...I have no pictures of her "break dancing" She still only has occasional motivation to balance her sit..usually fighting me when I want to try to get her too...her lil arms will at times stop her from falling forward but she will freely fall back...always pushing back...
SO we are coming somewhere...
Sometimes I just dont know what to do with her...I guess I am saying that I just run out of things to do.... I am not a 24 hour therapist.....I feel the weight of madies future weighing me down...I can barely lift a foot....
I JUST.... Without feeling guilty that I am not stimulating her enough or putting her in her stander enough.....Would all these things help madie become that little trouble maker that I so desperately want??
I am a real creative person...love love crafts and photography and diggin in the garden...and madie just cant do these things...and it breaks my heart in two...have you seen those ADORABLE gardening boots and shovels for kids at target?? Oh to see madie stomping around in the mud....:( There goes that crack in my heart getting bigger.
No Gigantic package of a Stroller yet....I hope for the next couple weeks but that is what I hear a week ago...That's another story.
We are also meeting with the school folks next month to discuss PRE-School....PreeeeSchool??? madie is a baby! Eh?? Ok so PT explained it as 3 days a week for 3 hours per day...We shall see....ehhhh I am scared to death but also know that they can do things and push her better than I can.... She is going to HATE IT....
ANYhoooooo I guess I am done...I have really run out of organized thoughts..
SO my final thoughts" Just go back to the old dose of Clonopin and have the med...or keep up on the wein...? I want to call the Neurologist but I feel like I will get the same answer...they dont really know either!! "just get her on more pills" GAH! Pills Pills Pills....
Madie is stuck I gotta go...oiy little one. keep your sparkle my love.
Mamas lil snuggle bug..oh sure calm down now when I wrap you up in your blankee with mama.. <3