Madie Madie Madie. :)

Madie Madie Madie...did SO good with her "dip dip" her fingers in her food yesterday..loved her applesauce! It was SOOOOOO MESSY!! I was thinking of buying just a large jar of Motts..but thinking the sugar may be high..but Illl look..:) Anyhooooo
I was frustrated the other day when I gave a ring to the Neuro folks...and told them of madies annoying twitches with her Clonopin decrease. (which has been lil over a week on her half of a half a mg tablet...err wafer..which say they dissolve but eh...its tricky...NOT as bad as the Topamax pellets...LOL..anyone who has had those..ghee wiz, Id find those things under my couch cushions!!
SOOOO I called the Nuero and they came back with "You have to deal with the twitches or go up on the Clonopin"....NO JOKE.... DEAL with it???
oiy......
SO I said I am getting her off that drug no matter what.
They want to go no further with her Zonegran and Depakote so we are staying where we are at.
But Gee Wiz..."Deal with it"..? It was just a little weird. ehhh call me crazy..:/

A bug bit madie on the cheek on Monday...I was like: "Eh? whats that?" well if you wonder what the red dot on her cheek is...yuppers a bug bite of sorts...she was absolutly fine.. It has now reduced itself to what looks like a pimple..lol

Teeething continues to be a challenge...ya just never know when that burst of Sccccreeaaaams willl come...but she is generally in a great mood. ROLLING alllll over the floor...CMON madie get those arms workin!! Still pretty poor upper body steanth...forget the old fashioned Tummy Time...LOL she will burst out of that as soon as you put her on her tummy....LOL
She took a tumble off the couch yesterday as well!! I was sittting with her and I had the Oven pre-heating for dinner...I was making some Boboli Pizza...yummers...and the over beeped and I literally ran over, put the tray in the oven and came back to her falling....OH GEE....*sigh* how many times she bonks her head rollin....LOL


I just hope that these things she is doing are signs of progress...Its always hard to tell for me any improvements since I see her every day..others will say she is different...not a few months ago was she rolling as she is today though...
EATING is still a pain at times...but workin on it. :) :) I have faith..

Hubby is finally back from his Journey of driving as well. Yesterday we went to check out his pictures he took and the camera said "memory card error" Ohhh boy...So 40 bucks and a new camera for mama we had pictures..Ritz Camera was going out of business and they had camreas all on sale...and they ran a software thru the memory card and found some pictures...mostly old deleted madie pictures but he got some..ehhhh anyhoo. I gotta Hussle we have feeding therapy in 30 min! EEEK!
hang in there mamas
Say some good strong Prayers for Reagan and Zoey...the lil troopers Im thinking of you both today.
HEY Karen I have a great Spider Picture for you...this bad boy is webbing RIGHT on my front porch!! EEEK Stay Tuned....LOL

Just a good weekend..:)

Madison is nothing short of crazy! Now the worst of it has been horrible tooth pain she is having..she is not so much drooling as she is gagging on her own saliva..Had a moment when I was trying to feed her a bottle and she gagged and gaggged and Ohhh mama....my blouse was covered...along with Grandmas red blanket that we were snuggled up in...(But I washed it and its safe!!I was freaking cause its some weird material...) Sooooo It was a word to the wise to let madie swallow what is in her mouth before I go with bottle! eek!
She is a rolling machine! No doubt I will have to "adjust her path" a couple times as I type this she is full of mostly the same noises...chirps and squeals and her "monster kid" noise...lol
Seizure wise we are truckin along with no huge seizures in...few weeks now...twitches are persistant...dunno how we can get those outta here...I think I have said before that they look like a seizure that wants to start but its being blocked..gah!!


I snuck in to check on her napping and what I saw just melted me...it was so cute her little tootsies sticking o ut from under her crib bumper..
Her sleep is pretty good..(sorry reagans mom) she had a tough time sleeping yesterday due to her teeth but a half dose of tylenol settled her enough...Madie also has super hard poopies...oh man a diaper full of pebbles...LOL BUT its commin out!!

Had a great time taking care of My in laws beach cottage this weekend as well..the beach was a super foggy with the warm front comming in soooo NEXT weekend I will get some pictures on the beach...
One night my brother in laws girlfriend came to hang out and we both being pretty good cooks still went out for Pizza...lol..
Stayed up way too late drinking wine and chatting..it was fun :) Such a cozy house it is.. Then on Saturday madie and I walked thru town and went into some shops...one in particular that I thought maybe I could get her a kids Nyantic CT T-shirt but went inside and it was certainly a "head shop" you know, those shops that sell "for tobacco use only" pipes....LOL! I kept sneezing from the smell of the incense but came out with a bright colored dress for madie and a hippy blouse for myself. :) As I was leaving I noticed that madies blanket was gone...ya know since madie is SO good at holding on to things...as I tell her "hold on to your blankee Madison"...lol Well We found it in on the sidewalk...I guess I had walked thru the store without it the whole time...
I just loved that little town..it even has an old movie theater that has maybe 4-5 screens and shows latest movies..One of my favorites is the Book barn...an outdoor/indoor used book store all these little farmers market carts filled to the brim with books outside with a huge weaping tree covered in purple flowers that we just walk under and flowers and pretty gardens around...you can sit and read your book...be carefull though some that are down low are WET...get some soggy books...lol
Came out with some good treasures from Nyantic... I cant wait to go back :) I am hoping my mother in law can show me around and see some new shops close by :)

Well anyhoo....Hubby is comming home late tonight from his Road Trip with his brother and his brothers dog....lol They drove from Colorado to CT...yuppers...almost 50 hours I want to say....They stayed in Cami territory last night Tennessee! He teased me and said he was going to go visit Cami..I said "Nooo!! I wanna come!!" hahaha now at about 6am tenneseee time he was off again this morning hoping to get home in 16 hours...
I have more or less kept myself busy its been a good weekend but i am ready to have him home..:) mama is tired!!
Today is another hot day...nearly 90!! I only have a couple errands to run some returns at target...I know hubby always loves those...lol and get some Milk...I hate it when we run out of milk! we drink alot in this house! lol
Hope all is well mamas...lots of huggs and prayers for all the lil ones. I am not soo much a prayer person but I am a firm beliver in guardian angels...and I have alot of them....I can share :)

I see other children and there is always something I envy..like maybe one child is able to feed themselves or one child is able to play with toys...but most of all if I see a child who still has these horrible seizures and can still walk and run..I am mind boggled to why madie cannot walk... oh man its killin me. Her rolling is getting incedibly good..I really have to watch her now..we remain optimistic...and when one of us feels pessimistic I tell ya,Madie will do something like roll all over the floor with giggles or amaze me with how well she tolerated her solid foods that day....or have a great therapy session or even tolerate her stander longer than usual...

Clonopin wein is going well...I just picked up disolvable wafer tabs at Target...so we do not have to break a half a pill in half..if that makes sense..I am opting to switch it to the morning and give her ZONEgran at night..switch em...hoping for less sleepiness...not so much of this early sleepiness...she still has annoying twitches here and there so at times is a little quieter...but remains in a good mood..I continue to watch her way more closely than I should with fears of moving in the wrong direction..Doctor says its to be expected gettiing off any drug....ehhhhh
OH OH!!I want to tell Austin's mom that Austin being a zombie is unacceptable..get on that phone and tell em its too much! Ohhh my heart aches hearing that..from the happy pictures of him enjoying his yum yums...lower the banzel( have never tried that one with madie so I am by no means an expert) or something! when Madie was on 100mg of Zonegran.4ml of depakote twice a day and half tab of clonopin...her eyes were rolling...we have since decreased..I was pissed..I called the nurse and said enough is enough...
*sigh*
I will jump off my soap box and say that its been pretty calm here in the vannoordennen household..Madie woke a couple times this past week in the middle of the night..once screaming and once just making her madie noises..
Hubby is leaving tomorrow to fly to Colorado to help his brother move....they are driving back to CT...I guess his brothers girlfriend decided she was "not ready" to move in with him as they planned a move to Philly...(ehhh even longer story)

Madie and I will be going to stay at grandma and grampas beach cottage in East Lyme CT bout a little over an hour from here...Ill grab a bit of groceries and we will head out...maybe get some pictures on the beach and maybe get a girlfriend to come out and join me...if not then Ill just be relaxing...:) Grandma and Grampa are on a cruise...I have been granted Keys...:)
We are also waiting for her stroller to be delivered within the next few weeks they say it should arrive...we have had everyone do their part as far as cost and we just wait for the product to arrive....Ill have pictures of this thing!
Well I guess that is all...Ill be heading to the cottage on Thursday probably and spend the weekend there...supopsed to be gorgeous weather...
And we keep on truckin......
:)

PS..

100% coverage for Madie's Stroller!!!!
Birth to Three will pick up any out of pocket cost up to 4500!! holy shmoley!!
I wondered why she enjoyed these Bananas so much....they have CUSTARD in them!!LOL
I have more pictures of madie eating but no news to report yet...day 2 clonopin decrease...going well..:)

Today Today :)

Madie Madie Madie... Today we head to Nuero...to be continued... In the meantime we will be thinking of Austin who ALSO has a nuero apt today! hahaha "oh join the club"
Ill hold ya over with some cute pictures of madie in her element...ROLL! and trying to CRAWL!! LOL! Please hope that Dr D gives us good news that Madisons liver is doing better! Eeek!

Yessss! Good Liver! vitamin seems to be helping! Doctor now wants to begin weining her off her Clonopin...Eeek! Now I have heard horror stories of weing off clonopin..(thanks Karen!) we are going to get itty bitty in breaking her tabs now...a half of a half of a half...ugh...juuust to finsh what we have...she is on .05mg now...half a mg tabs.... So its not alot but its heavy stuff.

I am always nervous about getting her off any drug...in the past it was always trying to get her off one so we could try another...since her seizures were so bad we just kept on going...and weather we weined her off or the other it made no difference...BUT now that she is feeling so good and seizures are so good...I just dont want to see any sort of increase...We just move super slow and watch madie like a hawk! I just want her strong and off some of these drugs....scary scary..She has always been quite tolerant of her meds...sometimes we do see a seizure or two when we get off one...no wein has been horrible....knock on wood.. Doctor feels that Zonegran and Depakote are working together now..so we do not touch those two..:) ehhh Ill deal with that! Rough Morning this Am...(an early...well 530am) I was seriously dreaming of a beach...and I was eating shrimps...no lie... when I am woken by a shrrrillling scream of madie in her bed...! I kinda laid there thinking that maybe she would calm herslef down and she would just go back to sleep...I could hear my hubbys thoughts of "juuuust leave her...dont go in...." repeating over and over...as he tossed... NOPE. I go in and she is rubbing her eyes... and biting her hand and kicking her feet and screaming! Nightmare?? or Teething?? I had no clue...I sat with her in my bed but she was just too squirmy arching her back and fighting me....then I just put her back in her bed and BOY did she scream then...I ended up rocking her in the chair for a few minutes and about and hour later she was calm. and sleeping...whew. Dunno folks...the ol molars are comming in or she is night terroring...ehhhh

After all was said and done I was dreading a day of too many appointments...we had to go to Speech at 10 and Dr D Nuero at 1 and PT at 330..I was thinking of Reagans mom as she has so many therapys fo reagan...seems like on a daily basis! As I tried to drift back to sleep the phone rang reminding us that speech lady was on vacation and that there was NO speech today! Woo Hoo! then a few minutes later PT cancells! Woo Hoo! Amen! I was back to sleep and woke about 930 to a happy madison in her crib...and the day was good. Only Neuro today :)

She is such a tumble bunny...bumping her head on allll kinds of things..the floor mainly but her noisy box, the railing and my foot were the funniest of bumps....she is trying so hard to get moving...oh lil one...YOU WILL GET THERE!!
Look at that tiney hiney! LOL!!Hugs mamas...Ill keep ya posted. now cmon blogger save my post.....(3rd time typing this)

GI, Feeding Team, Nutritionist, Feeding therapy..what's the difference anymore??

"No sir mama I do not wish for my yum yums" Nooo sir..

Madie in her jammys waiting for a "lets try some dinner" with mama....hahaha (Yeah, thats a Target shirt and its AWESOME! )hahaha nursin the christmas jammys as well..hey they may not fit next year! (oh those lil toes...hee hee I love love them)

*sigh*

I feel as if I am constantly seeing the same doctor...only they have different titles.. GI Doctor, Nutritionist, Feeding Team, Speech/Feeding therapy...EACH one I discuss the SAME things with...madies Weight, her caloric intake, her eating habits and how her therapys are going, what meds she is on, WHY madie is not gaining weight, asking me about the DUOCAL and the Boost 1.5 shakes that she does not like...telling me to go half and half on the boost and pediasure and to keep up on the speech/feeding therapy...and to keep giving her DUOCAL....

I KNOW! ehhhhh... I think 2 of them are named Katie...grrreat...:P

Each one I go to I am repeating myslef to them...that we are working on weight gain and her seizure meds are most likely taking away from her appetite...WHO KNOWS>...gah!

...and besides Insurance still wont cover Feeding team appointments...I wait to see Bills from the GI doc appointments...we shall see.....

We went to Hartford this morning rushing rushing to get there and at 830 in Hartford there is traffic... We rush thru the hallways and get to the office in time for me to fuss with my scarf and pull my beaded necklace sending beads allll over the floor...lol...

Picking up beads and collecting them in my pockets we make it just in time...beads are I sware falling out of the back of my shirt as I sign in...LOL...

I have a jonesin to call madies OT and ask her what the frick I should do....She is in new baby euphoria as I type having just given birth to a baby who outweighed madie by...I wanna say a few ounces...LOL Weeee miss you!!

Stopped my Neurology to ask if they had blood work results at all...woman said she would tell the nurse to call me..oh well..

I DO like the speech therapy lady already....we are going to get going on that once a week...we saw her last wed and we began to dip madies fingers in her food...which is going well..but would not say that she by no means has a steady diet of food yet....still shakes.

NOW the Nutritionist who works along side Jody the GI lady tells me that she wants madie to do the half Boost half Pediasure.. Now this means I have to go buy another non-insurance covered case of Boost for 67 bucks....(for 27)

I just feel like I have to get two things for madie....Seizure stability...WHICH HAS BEEN GREAT! she has "ticks" I call them...annoying here and there twitches...but not being slown down by them at all... ( the depakote depends on the blood work results...fingers crossed folks)AND The right nutrition so her muscles can get strong and she can gain some more tolerance for weight bearing and GET MOBILE! Her muscle tone is just weak...she is hyper flexible...a human pretzel we call her....I laugh but the fact that she IS that way makes things a bit more challenging for her.

There is NO doubt in my mind her medications effect her alot..its so frustrating when you are not given an OK to get off any meds...

Saw a young girl in the GI waiting room who was gurgling thru her tube in her nose...ya know, it was sad...and things could be worse...be blessed with what we have that we are not going thru that...:( I seriously wanted to take the girls hand..she was so helpless..completely un-alert..



We remain patient...I just want her a lilllltle less tired..she is like 60 percent to me...Id prefer a hefty 80...eh? LOL...

Not much else to ramble about today...Easter was great we ate WAY too many cake products..... Madie wore an Easter Dress and was in a pretty good mood even took a nice nap for me in her pack and play....mama indulged in a beer and chatted with the gang...it was good fun.

Well madie is sleeping and its 130...I guess I should finally take my shower eh?? such a rushed morning...Hoping hubby gets home a little early today.....I know he is dying to watch Baseball...hahaa

Hugs mamas :) :)

Me

Feeding Therapy and Break Dancing

Super Dooper happy girl! Sitting on the couch with those feet...she'll be a 9 and a half like mama I just know it!
Seizures have been reeeeeally good!! Oh man I still hold my breath each day....lil Madie just loves roll! and she is beginning to get up on those elbows! I call her a break dancer when she gets on a "roll" lol..and these CURLS!! I am in loooove!!

feeding therapy with Katie went great today...we dip dip dip her little suckie fingers in her pears and she was eating...I was shocked that there was no fuss...only after I showed her how I jam the spoon in her mouth did she get upset....DOH. Still very unaccepted of a spoon in her mouth.

But we were given a website to buy this thing called a NUK brush superduperinc.com http://www.superduperinc.com/products/view.aspx?pid=OM320 I dunno..we tried one and she was eh...more into the fingers. Its a start. She was such a big girl! I really like the jiggler toy madie loves to bite it and lets it in her mouth...runs about 20 bucks..but our OT got one for us for the low low price of FREE..

Little break dancer...last night NOT a bit sleepy mama! Im tearin it up!

Today we also have her PT coming hopefully madie will show some of her strength for her..:) She has arranged a meeting at the school for madie to get introed into her therapies thru the school system...I am terrified that madie will be in school?? To me she is still a baby..but in reality she will be 3!! (well stil a baby.lol) It will be 3 days a week for 3 hours...not bad at all...a much needed break for me....I was seriously thinking of joining a YOGA class...lol

No word on her stroller yet...hopes are maybe using it for a year...TOPS and then we can burn the thing!!

Its been a long rainy few days in CT...Sunday was the nicest day we have had so far this week..its still just too cloudy and cold...where is spring? I am so anxious to buy some new shrubs for the yard and plant some new things as well...its so relaxing. Looking forward to Easter dinner at the families...I am happy that grandma vanNoordennen decided not to go to Marinellis for brunch. :) I am making my chocolate cake (agaist all diet regulations) and green bean casserole..put your OH face on! deeeelicious!

Hope everyone is well and hangin in there...Happy Easter

Illl be postin.

Me

Weekend! finally!

One year ago...now why can madie sit in this pic? She was on her...uh...I wanna say Predisone at the time..we were gearing up to move into our house..I was dragging her back and forth to the new house so I could clean for a few hours and then we would go back to the Apt and get a load of stuff...whew! The ability to sit has come and gone 3 times!
I guess not much to report today...its pouring rain today...a bad seizure this AM has just thrown madie off alllll stinkin day! fighting her naps and not giving me a moment to really do anything. Im tired but hubby and I are going to go out to dinner tonight and listen to some music and wonderfull grandma is babysitting! Hubby has been working alot and its finally a day off for him soooo we are taking advantage of it.
I just want that ONE morning that I can wake on my leasure....just one morning I can wake refreshed...I forgot what not being tired feels like!!
No word on Madisons stroller yet...everytime I hear that things have been sent in to insurance the week after that I hear the same thing "things have just been sent out to insurance"...over and over....madisons PT is pushing them along with hopes of things gettting faster....ehhh no rush I guess.
Hubby and I plan on taking madie to the salon this weekned for her first haircut...NON-MOM trim...lol....for a little "eveninig"......hahah Ill post pics of that! haha
Thinking of all you mamas....
Tinkering with the backgrounds...I dunno what I like anymore! haha
Well its the weekend and Amen to that!
Keep ya posted. :)

A great weekend.....and Mama forgetting med dose...

Hello :)
HAd a great weekend visiting my sister in Mass...we stayed at her boyfriend's parents house since her condo is a mear 700 square feet...haha It was good food and good chats and good fun. I was newly introduced to her condo that had just been purchased some time ago and had to be renovated and I tell ya she has some pretty good decor! I was jealous!! I am so proud of where she is in life...despite her learning difficulties she is a smart girl. living independantly and happy.

Madison was wonderful eating well and sleeping well and usually happy hangin out with whomever wanted to play...We say there is someting in the water in that small town Danvers...lol
ONE seizure on Sunday morning that put her to sleep for an hour or so but she woke just fine...eh? dunno folks...still so unpredictable!!!
We kinda screwed up her Zonegran while we were there as well...her last dose was Sunday Morning...now she gets it every other day ...and at home I have my calendar that I write a small "Z" in the corner of the days so that when I am in a foggy morning haze I can just look at the calendar and know what meds to brew up with her Depakote and her Vitamin...
Well mama forgot....and now its wed!! In my mind I want SOOoooo badly to discontinue her Zonegran...but I also know that going against the docs...well.....:{ dunno
I have seen no Ill effects and only fear withdrawals....so as I felt that I did not want to give her her med..she has a big seizure midway thru her morning bottle...SO what now?? when she wakes do I just pop a Zonegran down the hatch...???(she is sleeping now..has only had her Depakote and her Vitamin) SO that would make this week as far as seizures so far...one on SUnday and one on Wed (today)....
This also brings me back when I quit my Paxil years ago cold turkey and......NOT GREAT....completely different med but same concept of "just quitting" instead of weaning....

ANYHOOOOOO
Weekend was great and Madie makes out like a bandit with new outfits and some new Easter bunnies... My sister and I also went shopping at Homegoods and spent WAY too much money..bout 67....eh...and I got Madie along with my goodies a lil toy that when I put in her stroller with her she full hugged it and fell asleep....AWwwww! How can I not buy this small 8 dollar Lion...:)! I also made dinner for everyone my last night serving up the famous manicottis :) I always hold in the tears saying goodbye until I am driving away....I miss those guys already :((( We will hopefully plan a summer trip to come on back and have some BBQ's!!
Hubby also couldn't come this time around he was stuck working going to meetings in a town that the company he works for along with another and another are going to dig up peoples contaminated yards....fun stuff eh??
Well I guess that is that for today....I may hear a little stir in Madison...:)
Hope everyone is well..keep ya posted! No new pics today :( hee hee

:) ME