A good Weekend.

Well Turkey Day is over and it was a great day. My mother in law forgot to send me home with leftovers so her fridge is packed! haha
We had these funny paper crowns that we all wore as we ate it was so fun...a looong standing tradition....we crack open those party crackers and inside is a prize like a whistle or a dice...lol and a tissue paper crown!! hahaha
Oh good times....

Well the latest on my Madie....I can tell you that she is certainly feeling better...much more smiley and alert! LOUD with her noises and at times at 3am in the morning you hear her squealing with delight in her crib! I am however on the edge of my seat...I mean after a year of drugs and more drugs have we found the one that will actually work?? Does she have a fighting chance at seizure freedom?? I cannot say.

I remember the day I was driving to Target to get the Depakote filled for the first dose and I was so scared about this med...so nervous to begin "another drug" knowing that if this one works that we CAN get her off her other sleepy drugs that have made her sleepy for months!

I hear the song by Hall and Oats "man eater" I know I know..nothing to do with inspiration or seizures or Madie...but I do have fond memories of my father a lover of the classic rock...I flashed back to when I was like 11 and he was going to take me to a Tiffany Concert...(lol) and it got cancelled....I was devistaed!! he then proceeded to look thru the concert listings and Hall and Oats was playing....I was telling him that was "old people music" and laughed. Needless to say we never made the concert but I did have a handfull of friends over for a slumber party instead..

BUT my point being.....When I heard that song I felt my father with me... It was surreal.

Maybe its the Depakote really working but I also like to think that Dad sent me some good Karma from heaven... He passed away when I was 16 of a major heart attack at 41....One of the worse days of my life loosing my dad...i was such a daddys girl.. I am sceptical of religious stuff.. when my family would go to church with 3 kids...one with Fragile X syndrome.....it was tough. We alllways had to take my brother out cause he would throw fits...

We changed to every Sunday my father would get up early and go get warm rolls and muffins from the bakery and come home and make eggs and bacon and sausage and all kinds of yummy breakfast stuff and we would have Sunday breakfast instead....

IN other Madie news......lol...

If I could record the noises she is making downstairs with her dad watching football....LOL...

No distinct words but very vocal indeed!

We spent Saturday night in East Lyme...by the CT shore at Grandma and Grandpas cottage it was so relaxing....no walks on the beach due to lots of rain and sleet but we entertained ourselves with games of Apples to Apples....LOL oh such a funny game......

She had us up at 4am making noise...Hubby and I have a rule...."no going to get her till AT LEAST 630....." not making a habit of going to see her at 4am getting her all excited to see us...lol

Alll in all a good family weekend...for sure.

And madie couldn't have been in a better mood thru it all...and all the driving around and disrupting her naps.... going out to this local restaurant at like 7...close to bedtime....ohhhhh easily a 4 seizure day for sure!!....( I was so nervous to get her overtired....that alllllways brings on seizures! )

Nope. she was just.....well....tired. and when we reached the cottage she just took a nap. Reached her limit at dinner and fell asleep in her stroller...and that was that.

I cannot say that I do not see seizures when she sleeps....STILL....here and there...

I have a good gut feeling that when we can get her off her other drugs and UP the Depakote just a touch we can nab em!! I have not seen a full blown awake scary one in days! We have not recived the OK from Docs yet....

Mommys little trooper.

Things can only get better so I hope.

Its certainly going to be a lifelong thing....no doubt that our journey is far from over.... "those pesky seizures are so strong"

I hope to hear some good about Austins Vigabatrin....Spasms for us...were just the seizure that madie had to outgrow....they are sooooooo tough!! I compleatly hear your frustration...you just have to be in the lucky bunch that doesnt "evolve" into other seizures....*sigh*

KAREN!!! Cami is hanging in there???...I dont like to hear that there is bad news.....Oh sweetpea...just keep smilin kiddo.

Hugs mamas....:) :)

Me.

Sleep is for whimps!

LET ME JUST SHARE my evening..its 7am now as I type.....
Something has sprung to life in my child...she is just AWAKE....now when I say awake I dont mean she is suddenly turning cartwheels on my hardwood floors but I mean awake...like NOT sleeping.....oh no, not waking in horrible moods or screaming or seizing up a storm.....
Happy noise....screams of delight....funny noises.."ahhhhhh...ohhhhhh.....(all with volume going uuuup and dowwwn) and huh huh huh" (huffy noise). and dont forget the "Bbbbbbbbvvvv" noise.
Okay while these noises were going on at 10pm.....and 3am.... I went in her room at 10 (big mistake) and covered her back up in her blankee that was balled up all to her side...and went downstairs and made a bottle to put by my bedside...well minutes later I go back in (I know I know) with my husband in a groggy voice "leave her!" and carry her in my room to try to feed her. She is not hungry. SO a few minutes later I bring her back in her bed and she settles. I go back to sleep
All the while smiling up a storm and squealing....which I have not heard that noise since we finally had her feeling better after her ACTH..
Well 3am comes we hear a loud noise like some old lady has fallen and cant get up..(lol I KNOW you know those commercials...)

So 3am I'll be damned if I am going back in there when she can see me! We stick it out for an hour or so and she quiets....
By 630 she is up again...crying this time for her shake breakfast. I seriously wonder if she got any more sleep after 3am??

BUT yesterday durring the day she was sleepy...doped on Zonegran...which at this point I am almost as excited to get he roff as the stupid clonopin...Which I have recived NO okays to continue weining...we are still at one "half of a half" milligram tab...does that make sense?...each tab is 1/2 mg.... okay. :)

Now the Zonegran DID cutt her seizures down alot! BUT she was still at about 1-3 big ones a day! which sadly was good! I think the docs are concerned that maybe the two drugs are working together.....eh......I dunno.......IF Zonegran actually worked than would we be on Depakote?? eh? eh?

*sigh* "another blog"

I still worry about her physical development she is yet to stand or crawl or use her little arms to hold herself from falling...all in good time....

Well I guess I better go...I can hear Madie making noise in her bed..that was so short lived. I guess I am not going to catch up on any sleep eh?

Geared up as I ever will be for some turkey. I think I have already wished everyone a happy turkey about 2 times now...can u tell its my favorite??

Who's shoppin Black Friday?? Ohhh hellllll yeah! LOL

J~

Latest..

Well I suppose I have a momnet this Quiet morning at 6:54am..Little one actually went back to sleep after her bottle this Am...
First happy to report there has been no more vomiting..thank god! We switched her Zonegran to the morning instead so she is not getting 3 drugs at once at night...I KNEW IT! Anyhooooo We are still only halfway there with the wein of the Clonopin..its a heavy one so we go slow...but getting rid of that alone has increased her awareness..its amazing how she focuses on me and grabs hold of my shirt when I am carrying her..although not a strong grip she is gripping! I have noticed a little more reaching and just the other day I am getting her out of her carseat and I unbuckle her and both arms go up like she knows she is getting out. If only she would say "up mama" I would melt!!
She is still generally sleepy...yesterday was a grumpy day with her sleepiness... she had been up at 3am talking in her room...just making her usual happy noises...then she was up at 6am...and would not nap! she crashed at about 7 last night...after a day of winey...grumpy...ugh! I am still seeing seizures when she sleeps and far as the awake ones I cant say I see those often....stiilllll having seizures no doubt... ON GOOD NEWS...yesterday she finnnalllly ate more than 2 bottles! she had a full day of meals...GOOD GIRL!! We shall see what today is like...(knock on wood)
Mommy instict tells me that when we are able to go up on her Depakote and get down on the others she will get better...good ol transition time....
I am needing her to gain some weight...Another mommy instict is that when we increased her Zonegran to 200mg 3 weeks ago her appetite just declined...but no doctor wants to hear that...
"you know the drill"
One step at a time.
I am super excited for Turkey Day...I just love how the whole family gets around the huge table and chats and eats and chats and eats...mmmm against alllll diet regulations...:) :) I will brag some more and say that my greenbean casserole is famous. LOL.
Well gang....I dunno. I guess I am fresh out of topics...I should go get my day started..the sun is comming up now. :)
Cami Girl I will keep you in my thoughts......you are a trooper...I cant imagine what our kids go thru with all these seizures and pills and doctors...
I still feel like my journey is far from over.
Austin my main man...you are trooper as well I have not forgotten you! keep working on that standing and tell those nasty spasms that you mean business!
Hugs mamas

happy Turkey.
me

getting there....*sigh*

January 08... what a sweetpea! finally off her steroids...and had been seizure free for a month and a half and by Christmas she was having spasms again! Oh what a little pork chop she was!

Just thought Id share this pic :) It was literally overnight that her spasms changed to seizures..I call up crying and they proceed to increase her Topamax...*sigh...what a dopey drug that was!

Well I am pleased to report we have had no more vomiting...I was freaking out that she was not handling the Depakote well... I actually used my mommy instinct on this one and determined that it may be from giving her all her meds at once...just too too much on her tummy... Specially when she is going to be with empty tummy.....refusing food left and right...I go for a goal of 2 shakes and a formula bottle each day...ugh. We are waiting for her current blood work to come back that I got done on Fri.....

I called the Doctor on call at childreans hospital (fri) and told him of the vomiting and the pills she was on...He told us to skip her Zonegran that night and give her it the next AM...instead..

2 nights vomit free already...so I hope its gone....

BUT what a sleeeeeeepy grumpy kid today...ugh.... I can hardly wait to get her off these drugs! I have to wait it out and just grin and bear it.... already we are at 1/2 her usual dose of clonopin...so its a step forward.. I am NOT increaseing anything unless we get the OK to lower others....just my rule of thumb...

Seizures?? Well.. I saw a small sleep one when she was laying with me in bed this AM but nothing like the large Tonics that she has......Seizure free day?? welll close.....Is this IT?? I dunno. Is this battle over? Oh gosh...no... WHEN her seizures go away we have a whole slu of delays to deal with after that....but i am certain that not having seizures will help.

Oh my baby Angel....

Sleeping finally tonight...Hubby and I are low budget dinner folks tonight with some Hotdogs and greenbeans....lol...delightfull!

I am hangin in there...My Physician put me on Paxil to help me with my depression...and my horrible Panic attacks I was having....Day 4 for me....feeling like I am catching up on alllll my lost sleep....never able to sleep so anxious alll the time....now its like I can just plop in my bed and sleeeeeep....Its been along time...I even took a nap today....You could say I am sleeping off all my panic atacks....LOL... Cant explain it. But its like this cloud has been cleared from my head...and the stuff actually is working!

Ill keep you posted...

Oh by the way I quit my job as well. crying and crying telling them I was sorry that I just needed to focus on ME getting ME feeling better and taking care of my daughter and that in my state I was not capable...and I was feeling my life crashing down with sadness..It was effecting everything! I feel another huge weight off my sholders...ready to enjoy the holidays without having to work retail!!!

Woooo HOOOO!!

Hugs mamas

And if i do not blog before than...Happy Turkey Day :) "I have a second helping on ONLY stuffing and gravy rule..." Hahah

bye

A little laugh. for a change!!

I tell ya! This is our Cat her name is "Magic"...Magicals...Tripple Pounce Trouble and Magic Joesephine vanNoordennen...LOL I laughed so hard when I gave her a middle name!! hahaha

Magic's world came crashing down when our Human child was born...oh the attention she did NOT receive! Magic is about 8 years old now...she is a lover of stealing your warm seat when you get up...laying in your warm laundry and sunbasin.....I open my blinds for her each morning in my bedroom so she can lay in the sun...lol she loves to escape into the yard outside and has even jumped the deck to get loose last summer!! it has to be...oh...15ft high or something..its small.

I remember when we rushed from the old Apt where these pics were taken to go to the hospital for nearly 3 days....leaving Magic all kinds of uncertain of what was to come... we left her with low food and low water...came home to her food knocked over and her going nuts thru the apt! I could not have felt worse!! She became a fresh kitty when the baby was born and still at times acts up racing thru the house...with much more running room! Now a days she is funny...when Madison is getting attention from both my Husband and I she comes mosey-toesy over and meows and wants to be pet...or when madie is in hysterics she comes over and rubs my leg and meows like she knows that madie is in distress....Once she even hissed at my father in law when he got to close to "that persons" room.....that is what we call madie to Magic....hahaha She what we call "tripple pounces" people who threaten her...if they come at her too fast she WILL bite your leg! Its crazy!

Otherwise a lazy bum...laying on the top of my chair in which I have placed the designated Magic Blanket...and watches out the window and out the window in the door..."scopin it out" Ready for slowpokes to come thru the door for her ticket to freedom....

Always comes back in about an hour....lol

Just thought Id share about my other kid :) A break from the ol Seizure Talk...eh??

Madie had a great day today as well....JUST getting rid of that morning Clonopin Dose...MAN so much more awake!! NOT used to that!! She finally ate more than 2 bottles and actually had stuff in her tummy f0r her evening meds.....which I want to blame for the vomiting after her meds....it HAD to be....

I would not know..>I did not hear from the Pediatrician at all.....I would think she would want to know that she is not eating well?? eh? Ohhh its gettin there...I just worry only cause I am desperate for her to gain weight!! gah!!

I only saw a couple funny small seizure while she was sleeping in my arms today...no biggies...but I only say that after I get to sleep....

Hangin in there....thinking of ditching well....AM ditching the ol Tarje' right before it gets too busy...all in the name of enjoying my holidays....

mmmmmm Turkey.........."get your OH face on!"

Till next time. :)

~j

Eating and less Eating....and mama

Well...hmm what do begin with first!
I have not given up hope on the Depakote...Ohhh no...not yet..
My Biggest thing now..is Madison flat out refusing to eat...Im talking even her "potion"...(a love affair for ever!) and when I can get her to eat I fear that she will refuse the next feeding so I have been giving her shakes...jammed with more calories....
Lets see...she stopped gaining weight....Ohhhh a YEAR ago..when we began to pump her with various seizure drugs...she was Always in the 90th percentile with her weight...always growing rapidly.. Do you think the drugs have somewhat stunned her growth??
She is most happiest in the Early Am...and in the evenings...durring the day she is sleepy...irritable...refusing her meals... *sigh*
Should I go and tell the Neuro that despite what he wants to do that we need to wein her off her Zonegran and her Clonopin?? Her eating as I recall got worse when we went up on the Zonegran...about three weeks ago....and has been getting to a 2 bottle a day!! I know at times she has teeting issues...oh those molars are comming in...and LAST night...oh man after another day of hardly eating it was right after her meds..I tried a bottle and as usual she just wanted to sleep with mama on the chair so as I am sitting with her she is getting flushed in her cheeks and feeling warm...and chewing her thumb...Ok I pretty much knew that her teeth were hurting...
I let her sit with me maybe 20 minutes...and she calmed down some and I figured (bad choice) to try some oatmeal and a fruit.....
THAT turned into a scream fest,....clamping her mouth shut and screaming and gagging ....OK so that was not a great idea...
MAYBE it was teeth..she was still looking flushed again and I was getting a little nervous... I wiped her up and gave her a small dose of Tylenol...
I then put her down in her crib..she seemed calm and snuggled her blanket.... I go into my bedroom and proceed to put away the laundry I had done that afternoon....
I hear weird noises coming from her room and I rush in and she is vomiting all over herself!! It was clear! she has not a drop of food in her tummy...she is screaming.....
I literally lift her up and tilt her forward so she can get her mouth clear...
I get a face cloth and wipe her face and her arms and her feet...she feels warm...give her more tylenol?? Eh.....I sit with her awhile and she calms down finally and just goes to sleep....feeling cooler....
I don't feel like she vomited from her meds cause about 2 hours had gone by before she vomited .. what I worry most is her having a bad complication from her meds because she is not getting enough food! Which is alllso why I need to get her OFF some of these..
byt than wave the risks...what if seizures get worse??
It was quite an episode..she slept thru the night thankfully and woke happy and hungry...

Like I said, my biggest concern is her lack of eating! She has to grow!...And her development..*sigh* a whole other ballpark of worries..

I sucked up my pride and went to my Primary Care and told them how I have been feeling really Anxious an depressed...I completely broke down...telling her I felt like things were just closing in on me..
She says she wanted me back on my Paxil and gave me my script. picking it up today or maybe hubby can for me....
She says I have Anticipatory Anxiety...fearing things days before I endure them...like I am already Anxious about my long shift at work on Sat....And its WED.....but I know its coming...
I am such a basket case.....
It was time to put me first and get me feeling better...
Well I guess I am done.
Illll be in touch.

Latest and De Greatest...

My Little Sweetpea! A great day to hang out in our jammys! I was laying next to her reading my Sunday Paper and she was just on a roll with smiles and rolling..:)

how much I worry about her...when will get get up off her tumble blankee....I feel as if my pics are getting repeatative...I am ready for the next step...literally!!

Madie was in good spirts today..we are heading into week 2 on her Depakote...up to only 1/2 tsp...err 2ml.... which I dont think is enough...how to they measure that stuff in mgs compared to tabs...? She had one bad seizure this AM and a shorter one this PM...she is generally sleepy but when you get her in a mood...she is so sweet. I want to bottle her good mood spirts! I KNOW when the other drugs are weaned down she will have more wakefulness...she fights these drugs i tell ya...

ME? Oh...Im hangin in there....Ive been battling my Anxiety once again...just feeling overwhelmed with everything...I was at work on Friday and had to leave...I was shaking and sweating and acting like I was on drugs!! I was so embarrassed when I left I just took Sat off and relaxed....Now I know I have to go in tomorrow and am already getting anxious...but know I have to just be strong and go....then I get the whole week off....ahhhhh Juuust one day!

My Panic attacks are just so real....if anyone has dealt with anxiety its just debilitating! YES I am going to see my doc someday...I haev even had people tell me of Herbal remedies....*sigh*

Its frustrating for sure...Juuuust want to reelax.....

Anyhoooooo

I will keep you posted on Miss Madie..we are also going in to get her blood work done as well..OH that should be great...there is a small lab in town we go to...

On that note...I just wanted to share the pics I took today :) Its been awhile since I picked up my ol camera..

:)

Madie and her Bumbo...soon to be broken up..lol

Once I got her out of the BUMBO trap happy as a clam...LOL Lol lol

GEE do you think it's time to retire the BUMBO?? lol lol

She totally is pushing with her feet backwards tipping herself back~ yet, if she does get out she will fall..no way does she use her hands and arms to get out..look at those little fists! not about to touch anything!

*sigh*

Well I called the Neuro today and they humbly apoligized for not getting back to me till nearly 5..but that aside....

I told them that Madison is very lethargic and irritable and refusing to eat etc... Ive been instructed to go ahead with her med increase tomorrow to a whopping 2mL..and to call them by tues..or earlier if her behavior persits...Persists?? uh...not gonna get better with more drugs! eh? I am real concerned that she is refusing even bottles! ugh...with the pressure to get her to gain weight....Its so frustrating...

Well we already know that we will "eventually" get her off her Zonegran and Clonopin...which aside from Clonopin making her sleepy two hours after she takes it..both have been well tolerated drugs..I feel like Zonegran is our "topamax" the same feeling of just being comfortable with it...but to my surprise she did better when we got rid of the topamax!! more alert..happier...I thought for sure Zonegran was it!!

Austins mommy says he's on Keppra..now that did nothing for madie but doc said its a good drug..expelled thru urine and doesnt hurt kidneys etc... Infantile Spasms to me are just something we personally had to let run their course...they are horrible..we honestly couldnt rid her of them till one day..poof..they were different seizures... I WISH I HAD A GOOD STORY about Spasms...Now I just hope to in the next year have pics of my big girl standing!!

I think to myself what do we all have in common that gives our babies spasms?? Aside from being kick ass fighting moms..... Is there something we all carry or something that we all do in our lives that has caused this?? I blamed myself for a long time for Madie being the way she is...ohhh did I ever...knowing that all my siblings faced learning disabilities to some extent...I would tell people I grew up in "house of disabilites" gah! I have a pic of my Brother I have to scan and post someday I will tell u about him....I have not seen him in over 10 years. I cry with guilt thinking about him..and how great our childhoods were...

ANYHOOOOO I guess we are giving it another week...and then maybe another week...and hope and pray that little kiddo here begans to wake up for the first time in a year!

Can u imagine her riding a small bike? or walking? or getting herself around? These things seem so advanced to me now....I cant fathom.

Well I got soup boiling on the stove...its just me and madie tonight Hubby is out in TEXAS at a Nuke Power Plant overseeing a well drilling project....he says he is in the middle of nowhere...he had to drive like 2 hours from the airport to get to the hotel....I miss him...gets spooky at night.,

Till next time.

Me.

Quick blast from past....

Heres a blast from the past...THIS was year ago for US! pumped up on ACTH...the poor kid did not even want to be touched! just for her to open her eyes on some days was like "there she is!"

Ohhhh things get better.

To be continued....:)

Hi

Well I know I should update huh?

We have had Madie on her Depakote for a few days now...not even a week since...friday night. to be exact.. and you are still not going to be able to tell if its going to work yet...so be patient mamas....

She is well....drugged at times you can tell things are kicking in...but not like Topamax...whew...that drug....you could feel her little body getting warm sometimes...she sweat alot on that stuff too...I would think her diaper leaked....nope, just sweat. yucky stuff!

I am SOOO anxious to get her off her Clonopin and her Zonegran...but the doc wants to see if we can get ANY result from the Depakote first...AND IF we do she cannot be on all the drugs at once...making her risk for Liver problems or failure and Kidney stones...OH you name it...its alll yummy.. We are on a small 1mL now...which will be increased to 2mL in a week and up and up...if we have too. Madie is just so light... we have to work on getting her to bulk up! This kid....the battle of the wits continues with her soids...but she is loving her Pediasure shakes in Vanilla....

It was not a hard choice to put her on Depakote...I had heard of the drug from the beginning but we all knew she was too young to be on it "yet".."I saw it commming" It was that or the Canada drug I was leaning twards...but he gave us like I said the two choices...Lamiktal and Depakote.

I remeber the choice to put her on ACTH in a momnet of desperation...when they tell me that her seizures are bad and agressive treatmnet is needed....whew...what was I to do???

Gosh If this doesnt help than I dont know what will...

Its for sure putting a strain on our lives...just being so frustraited with Madie not gaining seizure freedom and ALL that comes with this... We had the argument of "you dont apreciate anything I do" argument.....ending with tears and hubby comming home with a giant bunch of roses the next day...in the Fall!!$$ We just needed to take a second and remember US...remeber that we are in this together and that we both love Madison SOO much and that sometimes the things that matter most are the things that are just tearin you up!! I made some dinner last night and we actually had some time to just relax and laugh for once.

This time change I tell ya...Madisons 6am wake up has become 5am wakeup and her bedtime instead of 8-830 has been 7 ....I was exhausted!! Last week was just so tiring there was not a day when I was not going to Hartford Hospital with Madison or going to the Dentist that I am too l azy to change an hour away....or working.... Today was much welcome day of nothingness...

I went out this afternoon and cast my vote...I am excited to see who wins....Ill be hooked! There were all these volunteers at the town hall who were older than dirt! oh man!

Packed place but the line went quick.

I guess that is all....no news is good news eh?

My Husband says...in an Chinease voice..."Ahhhh soww U vote fo Erecton Day?"

LOL

I told him "maybe"