No more christmas? Or snow...:(

Christmas has come and gone...oh the FOOD....belly bombing food.....awwww the cheese cake and the munchies and the ham... time to start my diet...oh....now. The rain and the sudden near 60 temps have melted allll the snow we got...still left with the dirty piles from our shoveling...:(

Little Madison got a few cool memorable presents..it really was all about her! Dad was up till 1130 putting together her new Dollhouse bookshelf that surprised me set up in her room the morning of..:P We also got Madie a new stroller since her other one was reeally falling apart..the wheels were falling off and at times wobbled so hard that they looked as if they would go spinning away as we cruised around the store..eek! It sits her up alot better with a harder backing than the other so she is not so reclined...but its sturdy as well...yippie!
Grandma got her this cool light up lulliby toy that turns slowly and lights up the whole room with shapes and animals and swirlys...oh thee best! Also some cute comfy little outfits and for mom and dad she got us some barstools for our kitchen that look great!
Hubby and I kept things low budget but it was all good..shopping for family alone is a good dent in the funds as is....


Madie continues to be Seizure Free...she is at times a sleepy girl due to her lack of sleep in the evening...she seems to just take one huge chunk of a nap in the AM and then the rest of the day she is up...at times sleepy but not about to go to sleep..I got her down to be at 930 last night...!
I continue to hold my breath....Saturday we saw a couple of twitches but nothing since...dunno..I wanted to scream when I saw those arms go out for a split second in the cris cross...hmmmm Ill call the neuro this week if I see more....SAME TIME last year when Spasms came back...

Well anyhoo...dunno what to do with myself today...kinda tired..hopefully madie will wake from her nap happy and hungry...getting even the Pediasure down the hatch has become a challenge...she is just not hungry!! ugh.No one listens to me when I tell them it may be her Zonegran curving her appetite...Dunno..a year of seizures and drugs can take a toll on little tummys...she'll get there....*sigh*
We look forward to one more christmas party with my side of the family...truckin out to South Jersey (a 3 hour ride) to enjoy some of my Aunt Pats cooking and Games! How my family works it..Ok My Grandma(who is 80 and goes to Atlantic City on some weekends...lol)(full of life!).....shops all year for christmas..she gets these raffle tickets and we play cool games to win presents...anything from..oh gosh....gift cards to a new pot and pan! LOL its so fun and we always leave with a car full of stuff!! Sometimes when we are all done we do swaps with each other if we won something that we wont use....
God bless my Grandma....she is so awesome. I cant wait!! God Bless Aunt Pat for all that cooking!!
Well I guess I better start my day huh.?...Hubby and I want to go see a movie tonight...maybe the Will Smith Movie or the Benjamin Buttons movie...unsure yet...:)
Hugs
Jamie

18 inches of snow!

When it was all said and done CT got a foot an a half of snow! it snowed for almost 2 days strait! I am pretty much done shoveling...and slipping on the ground...lol

It was still comming down...and the coolers were still on the deck.....someday they will be put away...*sigh*

We thought it would never stop!!

Madie had her Nuero apointment yesterday in Hartford...it was pretty well plowed so no bad ice driving and the sun came out full force melting any black ice on the roads..

Took almost an hour to get there thru SO MUCH traffic! I tell ya with the snow over the weekend putting a huge delay on last minute christmas shoppers...and me traveling past the exit for the mall....whew.

Well we get there and they call us right in....Madie was weighing 22 pounds 8 ounces...dunno if that is a gain or what...maybe a few ounces... We are sitting in the exam room andI tell ya..this kid who was screaming and being happy the whole way in was deciding she was sleepy now...getting a little grumpy...We sat in there for a good 30 minutes with me trying to keep madie awake! Well Doctor comes in and we talk about where she is at with her meds...he wants more blood work done to check her Depakote levels and liver and all that fun stuff..we talked about her lack of sleep and he kinda laughed..told me of Melatonin....*sigh* heard of that....do I want things that make her MORE drowsy?? Has anyone tried that?? hmmmmm

He says that he feels good about her meds now and its not time to wien anything since its only been about a month S-free.....

Ok Ok I kinda agree with that...says that when time comes clonopin will be the first to go since its the lowest dose.. Soon kiddo soon.

She SEEMS in happy spirts....even perked up a little when doc came in so she was singing her bird noises and smiling and even showing him how she can bear weight in her legs...with support of course...BUT all in all I left feeling OK

I also talked about how just last year around christmas she was seizure free as well and then by feb....you know the story.... Well he says he feels confident that madie will be OK seizure wise and that we have found a good drug...Zonegran will be like our Topamax..a drug she will have been on the longest....Topamax was going on a year before we weined off that drug!! after that stuff she was instantlt more awake!! BUT since Zonegran cut her seizures by more than half we hesitate to think that maybe its working with depakote...hmmmm

Today madie has Miss Tara her OT comming at 930 and at 4 her PT comming as well..getting them over with before holidays...

Soooo as with all our little ones its one day at a time..for now we look forward to Christmas eve Lasagna at great grandma's house (we do eeevery year..lol) and a full day at grandma and grampa van noordennen's house for christmas day! I will try to get some pictures among the craziness...lol. I think I may go shopping at Target today for some last minute things...lol and some more photo paper!!(those pesky christmas photo cards..lol)

hugs mamas

:) :)

~J

*sigh*

SNOW!

Weeee got pounded last night and its still comming down! I was shoveling a little last night with a tiney shovel....yeah...not the best idea for the back....
Curious Kitty Magic was meeeowing up a storm so I let her out...here she is on the front porch steps debating the snow Here is our Deck in the back..there are two coolers left on the deck...giving a good idea if the amount! eeek!

Whhhyyyy did I shovel last night?? LOL this is the veiw this AM in front...that is my car...LOL

And Madie. happy as a clam. :) just sharing some pics:)

Those raspberries and screams!! Oh man! she is so loud! I could not get her to sleep till 10 last night and she was up at 6 rise and shine....but SLEPT the whole time!!

Neuro Follow up on Monday...Ill keep you all posted.

jamie

great things I can feel it!! go! go!

Not much to report I suppose..>I am bored out of my mind!! gah!! Its cold and slushy and rainy and muddy outside and there is no way i am running errands in this muck...
Madie Madie....seizure freee for 3 weeks now!!! eh?? say its not so!! NOW I can not say IF she has seizure when she sleeps ....so do not quote me on it....An overnight EEG would be wonderfull. and there is noooo doubt that we will do one sometime....
I am scared only cause we have been down this road back around the same time last year..comming off the ACTH and thinking we were DONE with this...and durring the family christmas party almost 2 months seizure free she was having head drops again....
Doctors still hesitate on lowering any drugs now...we are still stickin it out with the sleepy AM drugs for now...due to her vomiting up a storm when all three are given in the PM.....
I am loving some of the little new things that madie does...she did awesome with her OT yesterday with both hands on her koosh and pulling!! she was smiley and almost gave us a giggle it vibrates and plays music.. you can see it in the background on the coffee table....lol
She actually pushes on it...
OT told us to get one of those little fisherprice pianos that she can sit in her bumbo (on good days doesnt mind the thing) and see if she will push the keys.... Ohhh boy.....hmmm maybe....:) Doesnt help that hubby plays...and would just Loove that toy! LOL
We are also offically in with the feeding team at childreans hospital...I do not know how often we will meet but its one step at a time......
Ill keep you posted on that.
Madie only woke once last night and waited till 330am to make noise...whew...dunno what the deal is....I am going with Cami's mom and saying the ol appetite is ragin...she hardly eats in the daytime..! I have forver blamed the Drugs for her lack of appetite....even since we went up on the Zonegran....ugh All the calories they want her to get in a day?? oh man! hard to do....one step at a time agian.....
Goal to slowly get her transitioned to food...one jar at a time...and lowering shakes one shake at a time to whole milk...not going to be easy folks.
Seeing Neuro for a follow up on Monday as welll cant imagine much from that....oh bugger.
Well I hear trouble....gotta go get her...:)
Brrr stay warm folks! Im making my chicken soup tonight! yummmmooohh!!
Hugs
Me
HEY Austin! any news!??

Nutritionist Apointment

Wonder why we call her little frogger?? LOL she was napping one afternoon and I nabbed this pic of her....

Well let me take a moment to collect my thoughts...whew..all that stinkin driving and dropping hubby off at work and then the traffic getting home....whew.
Alot was discussed at the apointment...I feel we have only just begun this journey of seeking the propper nutrition for madie.....
For ONE YEAR she has been on drug after drug...seizures and more seizures...delaying not only her development but her GROWTH as well!!!
We arrive and park in the lovely parking garage......we go to the second floor which we know by heart cause Neurology is up there..... to register and then wait with madie in another waiting room....when the nice lady tells us to come and leads us to a conference room...where she has papers and folders scattered about.... but before that she weighs madie and she is still 22 pounds....gah!! no weight gain madie!!
THEN we head to the room and start talking...talking about what Madie eats and doesnt eat..can you guess which list is longer?? "does madie eat fruits? veggies? cereal? table food? whole milk?
All no's.... I was feeling like I should have lied on at least ONE!
She went into how madie would need nearly 1300 calories to catch up in her weight which remains in the 2 percentile....thats alot of calories!! eeek!! And here I am...trying to burn calories...!! Enter FAT.....
We were given an apointmemt as well with "the feedng team" (cue loud triumphant music) who will go at it with madie...we are going to give us further instructions for the apointmet one being to bring some baby food with us so they can watch her eat...or not eat....maybe get an idea how she takes in food...Nice Lady has seen them do miracles... (insert skeptical nervous laugh)
There is no word on a Bariun Test...YET...I would not be shocked if we had to do that sometime in the future as well.

We have been instructed for now to give her nothing but Pediasure shakes....NOTHING?? No more Potion?? Ohhhh boy..... Now if any of you have bought pediasure shakes they are 10 bucks for a 6 pack!! AND if they want her having as much as 4 a day?? I kinda looked at her funny and told her if she has any idea how much those suckers cost..,...I wonder if we can get them at a wholesale club like SAMS or BJ's........Ill have to look into that....hmmm
The Nutritionist also said that maybe we can get shakes thru a prescription....Prescription?? Oh that is for people who qualify for WIC....a program that helps familys with "the qualified income" feed their kids formula etc...one of my friends who is a single mom used to get formula on it....I dunno much about it. but alot of times my hubby makes just a hairline too much to qualify...
We were sent home with paperwork and an apointment for January with this feeding team and that was that.
Madie was very sleepy thur the whole thing and slept most of the time in her stroller....or on mama...it was mostly just talking and getting a feel for what was to come....and it will be a journey..,..that good ol transition to real food...
Hubby and I are also instructed to get a meal plan going like eating dinner together someday....now this being told to the couple that always eats after madie is in bed....its just so much more relaxing that way! lol...dunno...cant think that far ahead....lol...
NOW to just get her down on her meds!! we still do not have the OK for that...madie is more or less seizure free in the days!! NONE!!! its only been about 3 weeks.... When we tried to go back to all three meds at night again that was vomit central.... SOooo she just has to deal with the sleepy Zonegran in the morning for now..
as far as her sleeping...oh man dunno about seizures but they gave us a therory to why she may be waking in the night...
Shes Hungry.
HUngry??
You think I want to get up and feed her at 2am?? Then the lady told us that maybe try to give her just one more bottle at 8 before she goes to bed....instead of just her last bottle being at 630... more food more food..l.stuff the kid! Stuff the kid!! she gave us this feeding thing to go by...8oz here...4oz there..8oz again...4oz again....like a meal snack thing....but with bottles and tons of shake....
I dunno if madie is that hungry!!
Miles is ready to throw away allll formula.....literally flush the stuff! LIBERATING!! woo!! no more yummy scoopper?? Nooooo!! my life needs serious adjustment to this sort of change...! All you mamas know the scooper! LOL...
Well Iguess that is all....I will keep all posted on Madie and her weight gain and how she tolerates this new jammed fat diet...as Mama who found out her Chollesterol is high has to CUT the fat! GAH!!
Hugs mamas
Me.

Too many meds already!! gah!

Well I have no new photos to post today...bummer.
What night we had last night...eeek.
The meds are as follows...to make this make more sense.... Zonegran and Depakote in the AM and Depakote and Clonopin in the PM...
We have been having trouble with her NOT sleeping at night and I called the "nurses at the neuro" and it was suggested to me to try the Zonegran at night instead... As I began to TRY not to sound frustraited I told her that we had done that before and she was vomiting! I said since we switched the Zonegran to the AM the vomiting stopped....I told her that I dont care what anyone says ONE of these drugs just does not agree with the other... We CANNOT give her three drugs at once...and the Clonopin makes her way to sleepy in the daytime....As does the Zonegran....BOTH drugs that while ONLY on those she had about 3 bad seizures a day! UGH.
Am I making any sense??
Well I told her we would give it a whirl...maybe it was a bad stomach thing she was suffering from...maybe it was not the drugs...(as mommy instinct tell me)
OHhhhh no no no no no
Madie was sitting in my lap..she had refused to eat her bottle...I was accepting of that and sat with her in the comfy chair....she began to make weird noises....I sat her up strait in my lap...and then it came out....Sooooo much vomit...it was comming out of her nose! She was screaming...Hubby was scrambling for wash cloths and fresh clothes...she was so red...feeling so warm...I was freaking!
Once we got her whole self changed she calmed a bit....I took her up to her bed and tucked her in with her lighter blankie..
Then more came! all over her hair...her bed...her clothes....she was screaming haarrrd! Like something hurt...that 3 month old ear infection at 2am cry....I was ready to cry myself! I cursed the stupid seizure meds and cursed the doctors for not letting us wein her off! I cleaned her up again and took her downstairs WITH facecloths this time... I took a huge risk and gave her some Tylenol and sat with her till she drifted to sleep....only to burp a little leaving a puddle on my shirt...saving her clothes this time.....but that was the end of it she passed out after.... whew. It was something. I am SO wondering this: Now we had been giving her Zonegran and Depakote in the Am for awhile....seemed well...sleepy for a bit but what else is new...seemed fine on that. AND Depakote and Clonopin at night.... seemed fine on that as well ( I cannot make paragraphs for some reason bear with me) Then when given all three at once it was horrible! Is it the added Clonopin that when mixed with the other two causes her to vomit? Needless to say i am going back to what we began with and just going to deal with the sleepless nights Ive become used to them now! Sleep is for whimps! Anyone else ever have vomiting on ANY of these drugs?? I am thinking about all the mamas.....Illl be in touch..... MONDAY is the GI doc apt!!! Woo hoo!!

PS

Christmas Card Pic 2008

Tree!!

I can never get the pics in the right order!!

Well..We went and chopped our first real tree yesterday!! Good ol Cherry Brook Farm.:)

I was freezing! It was so cold! little madie was thrilled! she was being carried by dad in the top picture and she was squealing and smiling the whole way up up up the hilly muddy terrain that we realized we could not push the stroller up!

there goes our tree! ready to be bundled!
CMOM Miles! You cant carry it?? lol Nice tractor guy came and got if for us :)

Not quite done with lights and have to move big chair out of the way but there she is :P

Madie was so funny on the way there! with her little knit hat and her fleecy top she was ready! She is drooling up a storm! her nose is chapped and the cold outside made it even redder! it was sooo cute to capture this day! I just loooove christmas lights and our pretty tree!

In any Madie news...Well we continue to get little sleep as she wakes us eeevery night at various times...1130 maybe...2am maybe....430am maybe...you never know...get this kid to sleep the night!! I just can't function! I felt like the 2am wake-up calls were so 2 months old!

she is far from upset mind you....and I dont dare go in there with fear of her getting upset at my presence and then me leaving her and not getting her up....lol.

Even in the daytime I would think she would be exausted! 45 minute nap....here and or there...the time to shower, wash her morning bottle out, eat my cereal and maybe read my whole paper.....

Folks, no matter what time she goes down at night and no matter how late I delay feeding her her last bottle...she is up. Bright eyed and ready! I called the doctor and asked about it and they said maybe switch her Zonegran to nightime...OKAy when we did that she was getting 3 drugs at once at night and beginning to vomit! Maybe a stomach thing but my hunch was too much meds cause once we switched that drug to AM no more vomiting...which only happened at night..

WHO KNOWS! tell me that we can decrease the Clonopin and Ill go to nights but for now...im stickin with what we got.

Instinct tells me she is just feeling much much better and seizures are very few...IF any in a day..I see weird twitches when she sleeps but still none while awake!! ohhh man!!

I tried some more solid food yesterday with not the results as last time using some pears...mayle Ill stick to the chicken noodle dinners....LOL...that may be a fan favorite. Who doesnt like "chicken mush" ?? I mix it in everything!!

JUST kidding.

Well I guess I just wanted to share our christmas tree hunt...posted all the pics on my facbook thingie but these were some of my favorites :) :)

Well I better go. Madie is wining up a storm in her bed...refusing to nap I gave her 30 minutes of quiet time in her bed...she pretty much hated it. but I needed a second.

HUgs mamas

Hope all is going well with everyone!!

climbing "bigkid" mountain

BIG GIRL!!! For the FIRST time yesterday Madie opened her mouth and ate the food without putting her thumb in her mouth to suck it down...! Her hands stayed out of her mouth and she actually seemed like she was exploring the texture of the food in her mouth...rolling it around and sometimes gagging but all in all swallowing it...I just have to get back into the swing of trying solids each day and it can only get better...! Its really hard! I just waste SO MUCH food! and Its real expensive...when I know that she will eat an entire shake and I know that I will get not even half a jar of food down the hatch...and with the HUGE need for her to gain weight....
Well, Shakes win.....
Nutrition appointment and GI docs in 2 weeks! less than! Dec 15th! I reeeeeallly hope I do not have too high expectations of these guys..I really hope to leave with knowledge...knowledge of some kind of feeding plan and techniques to help her take to solids better and get off the "potion" for good!! She is doing great on her Pediasure shakes no doubt..but kids cannot live on liquid diets! How will she be able to digest properly? and I am sure that once she is real into solids i am sure we will have poop issues ( I know dont need to know that! ) but I remain optimistic that she WILL eat one day! gah!
Madison continues to get us up at night..the past 4 nights er so...but that last 2 I think hubby and I have just gotten used to it and manage to drift back to sleep when she wakes...as long as she is not too high pitched...LOL.
She is so awake! So darn happy!
Now seizures?? The big question is does she still have them while she sleeps? Are they waking her up in her sleep? Alot of times when I would see her seize in her sleep she would wake wining or she would just keep sleeping...she was sound asleep most of the time...dunno....Cant say I have done this before....eh?
I continue to watch her like crazy....ugh. can drive ya nuts! She is a happy lil girl. No doubt something has woken in her brain. A sparkle.
Her body feels stronger although yet to do the earth shattering..but we are working on that.
She loves to be wrapped in her large blanket as hubby and I grab both ends and swing her..she smiles and even giggles sometimes..! just loves anything bouncie.
I cannot tell you how long its been since we have seen this sparkle in madie....I get emotional talking about it and remembering all we have been thru.... I KNOW that this journey is not over..I hope with all my heart that it is allllmost over...but who knows...seizures are strong ugly beasts.
Hope is what keeps us going.
Scary to think that in a year Birth to Three is gone! Such a big girl!
Hugs mamas you know who you are :) :)
Me.