EEG time

Well tomorrow we head into Neurology for madies EEG..It seems like forever since we had one..I am not going to post any pictures of the experince cause well..we all know what they are like...
She is total need of a bath tonight but I am stickin it out till tomorrow cause I know I will have to wash her hair 2 times to get all that junk out...
Tomorrow I get up at the crack of dawn and gather madie up. With high hopes that the jerks she displays are NOT Infantile Spasms...
Not much else to type tonight I guess Its time for dinner...I posted a yummer of a recipe on facebook for a sausage soup. cant beat the comfort food.

I hope for the next blog to be entited HYP HYP HOORAY...I am stealing that from Austins mom..;)
I also want to say I am keeping Bennett in my thoughts I am horrible with words and I cant imagine what his family let alone HE is going thru. One day at a time.
All you need is love
~Beatles

taking small leaps

This little guy was on my sliding glass doors..hee hee I love love froggies. he was so tiney maybe a little bigger than my thumbnail :) In Japan they say that frogs are good luck an old friend told me..I think we ALL need some luck right now huh??

Doctors and therapists tell me that I need and should work on so many things with Madie..."try feeding her this and that" "use this tool and rub her cheeks and roll NUK in her mouth" "have you tried this exercise? have you been using the stander? Have you encouraged madie to use her arms to stop herself?" OH and what is the deal with her weight? How much food does she eat in a day?? Are you adding the DUOCAL to every bottle cause she should be gaining weight fast...GIVE HER SOME TIME! she will!
The Doctors and therapist have by all means studied children with disabilities and can tell you by the book and things they have tried what may or may not work for your child. But they dont know.

When doctors would ask me why madie was not doing something that they had asked me to work on with her I just wanted to shout THAN YOU FREAKIN DO IT!! YOU TRY! Oh magical wizard wave your wand and make madie drink from that "more age appropriate sippy cup" or not gag on any foods that are not pure'...YOU DO IT.
I really am sitting here typing and my brain feels like it will explode with the things that I feel rest on MY shoulders! Too much on my plate that I just cant eat! And Ohhh I love to eat!
for almost a year we delt with brain damaging IS and then just when we thought that was gone Horrible Tonic Clonic seizures for another year..THEN when we thought those were gone we have these Mystery "jerks" never a break...
The poisons we put into our little one just to try to help them..causing sleepyness, lack of coordination..tummy issues..druggy eyes..or even in some cases more seizures! oh and that good ol vital organ overworking...liver etc..the gals at the lab know us!!
*sigh*
Come fall HOPEFULLY SOON we are going to wein madie off her Zonegran!! WOO HOO! down to one drug for the first time EVER!! Ill keep ya posted on that!

Madies EEG is for Monday...its always trying to get up so early to be in Hartford by 8am trying to get her fed etc etc and get myself ready as well..
I suppose today I kinda feel like venting "blogzilly style" but by "F" key seems to be sticking....;)
Now please please keep Bennet in your prayers...he is having surgery...and I cannot even imagine the fears going thru that...TODAY! I am at a loss...only to say that I am thinking about his family and hoping that all is going smoothly. "as can be expected"

The picture above from a year ago...leaps and bounds my madie has taken..soo cute! :)
A busy first couple of weeks of Sept comming ahead..a couple family memebers comming to visit..Madies Great Grandma Oma..a 5ft dutch woman..(insert jaws theme)I have a hilarious story about her from a couple summers ago involving a buzzing hearing aid...LOL! and the week after Madies Aunt Brenda who is always great for dinner parties and good chit chats and card games :)
I guess thats all I got...Im ready for the cooler temps commimg our way the rest of the week ahead. I have vowed NOT to go back to the beach cottage till it cools off!

babbles and beach cottages

Well Its been a scorcher of a week with temps in the 90's...sweatin to the oldies here...will this ever end? Fall cannot come soon enough!
Big Girl sitter has been out of sorts today..grumpy...not so hungry...consipated is an understatement...where is that poopy?? One big rock last night and then she was ready for bed by 830! I was shocked! yeah enough about poop issues huh? lol

Anyhoo..going to take a much needed visit to the beac house tomorrow..its going to be hot but Im bringin Madies lil pool with me.:)I just really need a dose of family right now..ya know that feeling? Just wanna hang out..I am thinking of making my millionth apple cake and bringing that along...YUM

Its been pretty mellow here I guess..big girl sitter alllways sitting and loves the toys that hang from her noisy box! Falls and gets right back up! watching her reach and grab those funny little trinkets that Ive had for so many months in a basket!The UPside to that is I have saved tons of money on toys! Downside those things get slimey!
EEG soon! eek! first week of Sept hopefully! keep ya poste

have a great weekend folks...
:)
PS Thank you Hubby..please no more hate mail..;)
Miles said...
Like Jamie said, the original plan for Detroit was to get the VEEG and PET scan because Hartford, for some reason, just didn't want to do any tests. So of course, a week before our trip they realize it might be a good idea to do the VEEG. DUH! So with that, combined with our worries about arriving at Detroit at midnight, just to force Madie into a hospital bed for 26 hours straight, and the fact that suddenly the doc would "probably" be there to see us... it just wasn't meant to happen at that time. Like Jamie said, we're still actively working on rescheduling :)

Good things to come for madie-girl?

SOOO yes, we opted out of Detroit..mixed reactions from accross the family but it just was not for now. WE WILL go..just at a later date.There is a time frame of the PET scan as well so probably in the next few months we WILL be there...I still dont feel as if madie is a surgical candiate though...but hubby agreed that it would be good info if anything...but in Detroit? Dunno... UGH. Kinda done talking about if for now

In an earlier post I said that madies bath seat that we were trying to get for her was denyed by insurance...well now the Birth to Three folks are going to try to get it for us. worse case? well we keep using the ring seat which has been working out well..its just hard to get her legs in it..she is long! if only the front popped open so I could just place her in..oh well..

We picked up this funny toy at Tiddly Winks..a fancy schmancy toy store in town..not really in the budget to shop the collections of beautyful toys there this lil guy ran us nearly 8 bucks...but when we handed it to madie she shook it and touched it and began eating it...how could we resist..lol.
Grandma also got madie this light up lulliby globe thing that you wind up and it turns and plays music and lights up the room with color..I sware that thing works! :)


Well its another scorcher of a day in CT mid 90's and HOT. I have tons of grocery shopping to do and just dont want to bring Madie out in the heat..
I must then go after hubby gets home and the store is mobbed.Sorry Im rambling..huh?
We also continue to see lots of big girl sitting..she fights those naps for just a little more sitting time!lol I had to buy some more pillows to surround her! Just yesterday I see her Outside her barrier! just sitting tall on the wood floor! how in the world?? she loves UP and DOWN games and bouncing and being zoooomed into the air rocket ship kid..lol can always get giggles.
Had her eating Squash off a plastic tounge depressor yesterday as well...almost the whole jar! Will feeding get better?? Time will tell id LOVE to get her on food and Milk! have a funeral for the Pediasure!! She can get herself into that sit pretty quick with the turn of my back she can also fall pretty good!
SO anyhoo...Next week we head to Hartford for her 8 hour VEEG and I guess that is it. One day at a time folks.
Keep on. :)

Scoop.

OK so heres the scoop...
We are going to do Madisons long EEG in Hartford AND have that sent to Detroit. THEN get Madisons records sent there as well..and re-schedule the PET scan for sometime in the next month. It was also looking like Dr Seizure was being sent away for a conference the day we were supposed to meet with him...so no one one told us that!
YES We are going...just not Sat.
the weekend now? Well Birthdays...Madisons Auntie Mary will be 13...(just kidding Mary) she is going to be 22 I believe... thats tomorrow...then on Sat is Hubbys B-day he will be 62. and MY Birthday I will be 32. Yup back to back b-days. no real plans...everyone is always at the cottage so we rarely have sitters anymore...:( BUt BUt I hope to get a dinner out of it.)
Funny...I feel about 10 years older...:P madie is hootin...doh.
Thats it for now.
:) ME.

monkey on my back..lol

hahahaha me hangin out at the campsite...later to see this self portrait with a certain someone poking over my shoulder! LOL she was big sitting right behind me!

Neuro follow up went well yesterday..Madie was in OK spirits..tearing up the paper on the exam table and eating it...lol showing off her big girl sitting to Dr.D as well. She was very hungry and sleepy after and when we got home she did just that...ate and slept. :)
SOO heres the ice cream scoop kids...
He tells me that judging from just seeing her do maybe 3 jerks while we were there that they do infact look like Myoclonic Jerks..Well I tell him.."can we make sure with EEG?" Just so I KNOW that they are not spasms??
He agreed and tells me they can do an EEG come September and puts in the order for one...says to ALSO go up on the depakote by a mL at night...with hopes of nabbing the jerks in the butt...(that came out wrong...lol)then he was talking of getting her OFF her Zonegran! OK..super exciting! Madison has never been on just ONE drug...and if we DO get her off Zongran will she be OK?? now a brief history of Zonegran we began over a year ago..at gee...I wanna say 100 in the AM and 100 at night...(have to ask hubby on that one) AND now..we are down to measly 50mg per day! holdin strong to our "topamax" which was the only other drug she was on for over a year....(lol)
I feel it wont hurt...I mean if things get bad..like we see a big Tonic Clonic then we go back on...I wont throw away the pills for a couple months...kinda my rule of thumb...last BIG breakthrough we saw in May...but it was one time deal.
I feel what do we have to loose?? What does madie have to GAIN?? less drugs? I give a big loud "woot woot" to that!
We also talked about how great it was that madie was knowing how to get herself sitting...I told him that as far as walking I am still taking it one day at a time. Doctor looked with confidence and said "she will walk" and that it WILL take awhile (well DUH) and that she may be 4...5...6...but she WILL and that he was confident of that.
I asked him the possiblity of Spasms returning and he was saying that at her age not likely..she is almost 3 and the spasms rarely return then...OK..well I am not realy buying that but I agreee and go with his Myoclonic Jerk diagnosis...."at the mercy of the docs for sure"

SO anyhoo in other news that is plaguing me..DETROIT!...uhhhh 10am to 10am EEG...and PET scan...I am feeling that maybe we dont need to go all that way to have a PET scan...Now I kinda mentioned it to the Doc yesterday and I think EEG would be first on his list...feels that Madie really isnt much a candidate for a PET scan...I go back and forth...I mean if anything its good info...BUT go all the way to Detroit for it?? when maybe just maybe Hartford can do it for us?
....and now we are scheduled to leave SAT!! in just a few DAYS!! *sigh*
Ok well I guess that is all Ill leave you with...ponderin in your minds...eatinig you alive....as it has me.

Hope everyone is hangin in there...I guess that is an understatement...BIG prayers for Zoey and her family...big test results I belive today or tomorrow...:( :(
and a big girl hug to Reagan for making thru her eye surgery like a trooper!
and a big burst of jealously for Austin who heads to the lake with his mommy and daddy...good fun!! :)!!
...and ken...I tell ya..it really truely is that darn second guessing that is the hair we pull out of our heads! (0r in my case my eyebrows...LOL)!! AHHH!!!

what next??

SO here it is folks..Im just torn now.
Our main reason for going to Detroit which will be happening SAT...eeek! is because the doctor in Hartford just was not granting us the tests we wanted..I wanted another EEG to hope and pray that these "jerks" are not "IS" returning...AND I wanted the PET scan! BOTH of which Detroit was willing and ready to do..and besides from hearing all kinds of great things about Dr Seizure himself I kinda just wanted to if anything let him SEE madie and give us his humble opinion..
WELLLLL Now Hartford is saying that they will grant us a 7 hour EEG on Madie..the nurse asked me on Friday when she called. (Liver is doing GREAT! no elevation! WOO HOO) She was asking me when madie last had her VEEG amd I said not since before we beagn the valroric acid Depakote..which was the beginning of last October! I could hear her shuffle thru madies file and then she says that they may have an opening for a VEEG...a 7 hour one..and thinks that we should get madie into one...YA THINK!!
With that said I remind her that we are planning our trip to Detroit to seek answers to madies frequent jerks..I tell her that if we can get all these tests done near home...what the frick are we doing going to Detroit?? When I asked numerous times to do an EEG on Madie to check for those dreaded "hyps" waves...UUHHHHH
Aside from teething pains and the non-pooping at times..Madie is happy..we were woken about 6 this morning with crys ..took awhile to calm her but we all ended up back to sleep..making hubby late for work..but she woke OK hungry and OK.
I guess that is that folks...now today I wait for the nurse at Hartford to call me..
Tomorrow we see the neurologist himself for a follow up as well...
And then we make a choice.
Will we regret forever for NOT going? what answers do we seek that can't be answered in Hartford?? I just don't know yet...plane tickets are good for a year...heh heh..:\
Hope everyone is well staying cool in this heat and Karen you are in my thoughts for a healthy new baby! eeek! coming soon!! :)
me

Campers :)

BOY do I wish I was still camping! It was certainly a short few days! Lots of family and friends were camping out at different sites and the chit chat was just non stop!
It was VERY hot for madie..she was a wreck at one point...BUT BUT bring in Kiddie Pool...aHHHHH Sweet.
I seriously just let her hang out in her diaper! she was so warm! It was adorable to get pictures of her lil nakie self...lol

Just her little big girl sitter all over! I went to go to bed last night and she was sitting in her porta crib...LOL I layed her back down and was just drifting off to the sound of the soft chit chat and the trees blowing in the breeze..when I hear a certain little trouble.. "Bvvv Bvvv" "squish squish" those little wet hands...Ohhhh gee...Sitting up tall again..lookin at me like "what mama"?

I was sad to leave! We had a couple visitors on the first night and grilled chicken and dogs..with all the usual side dishes...sat by the fire and got WAY to festive..with chatting till the weeee hours...LOL needless to say last night was an earlier night.. then the cool front came in and cooled us off..we all slept till 830!

She compleatly loveds this little pool...hee hee and I just could not stop taking her picture in it! I have to say we had her in it for awhile..till we see...hmm what is that...hmmm YELLOW tinkle! Ahhhh!!1 Oh man I laughed so hard...madie was content as can be...tinkled in her pool!
Partly my fault for forgetting the swimmer diapers...LOL!
We had one rough time of breakdown...probably due to...oh...teething...no poop in 2 days...and HOT..:( Poor baby..rushed off to the nearby drugstore and got some tylenol and she was better...whew...had to walk her in her stroller over the bumpy grass to calm her down..everyone was taking turns walking her...
Of course when we get home she poops twice! Whew! I guess the damn is broke! We got home and she was clearly overtired..from lack of naps and just being busy...she fought me like crazy tonight going to bed...but by 930 she was out. Im So sleepy..ehhhh..

Oh in fun medical news...the latest blood work came back good...liver enzymes are GOOD! not elevated! whew!
her jerk seizures continue...GOD! I wanna scream when I see these stupid things@! The sad truth is that they have not gone away...the nurse from the Nuerology dept said that she will tell the doctor and get back to me...There was word that he wanted to try MORE meds...on top of her Zonegran and Valproric Acid Depakote...
MORE?? Ehhh I am just not feeling cool with that...BUT like I said..these stupid things just persist! i will be darned if she goes into a drugged up state and begins to be a veg..sleeping all afternoon....no thanks...BEEN THERE>>>DONE THAT!
Its like a drug for each type of seizure...nothing just does it all...:(!! UGH.
Ill keep ya posted on what the doc says....
I feel she has been the most alert and happy she has ever been in a LONG time..killin me!
Detroit is loooming closer and closer...PET scan was reluctantly approved by insurance..
Remeber the bath seat we wanted to get? Well Insurance will not cover that...oh well..
Little Ring seat has been working out well..its just hard to get her into it...dunno why the front wont open up and lock in place so I can get her in without fussing with her legs...ehh what can ya do...Alot of things that us moms of special needs kids could invent I tell ya...id make a bundle! Id have my dream kitchen before I knew it! LOL
*sigh*
Well folks Im sleepy...going to go watch TV in bed and go to bed..
Hoping next year to try a WEEK camping trip..ya think I can survive??
nite nite.
:)