Trick or treats.

I vote for Treats!
Just carved the second pumpkin this moring while Miss madie is at school..
Rough day yesterday for her she was up at 4am and them at 630 am and school was at 9 and she did not go back to sleep leaving her overtired for sure. Well she needs to learn that its SCHOOL TIME and that she needs to sleep when its SLEEP time!
I left her this Am and she was smiles so I hope that was a good sign for a good day..despite the tears this morning....Packed a blanket for her incase of meltdowns..
Well Halloween is comming and supposed to be OK weather for the kiddies..Cant wait to get the pumpkin lights up and get those carved pumpkins glowing! I love any sort of holiday/festive decor! Its so fun!
Eating has been going real well..3 jars a day and bottles of Pediasure inbetween.well Boost Kid Essentals...each one comes with a 5 dollar off 2 pack coupon so we have been ALL bout those! She has been eating great! pooping great! (3x daily!) and well...seems to like everything I try with her...she seems to be in a spirt...growth and development wise.. I HOPE! They are so good with her at school and love her to pices! Other moms are Ok..still warming up to them..I am by no means a PTA mom...only one gave me a look so I guess we did not bond..LOL
Still a strange concept...I keep thinking that she is napping...
Well I guess that is all for now..better get a load in the laundry and go get the lil booger.
((hugs))

Danvahs Mass and great weekend :)

Ahh homeward bound. A great weekend seeing my sister in Danvers :) I stayed with her boyfriends parents who are just the greatest most welcoming people..we ate well, we laughed well, we chatted well...it was nice :) Allllways hard to leave. Madison left with many new presents as well ..how could I argue with that! lol
Madison had her meltdowns for reasons unknown but a little tylenol had her happy again..
Madison allways gives me a few hard times when Im flying solo with her..never fails.
She has begun to cry when I put her down or if I ignore her for a few minutes she lets me know she is there! Once I got her just close to her bed and she was crying."ok ok, I know..no bed!" she loves to be carried and even at times holds onto my shirt when there is turbulance..lol
Back to the grind tomorrow..Day 2 of preschool and more laundry to get done! jealous?
Madison will have her first OT and PT as well..hope it goes well :D Tomorrow is a shorter day due to teacher meetings..so an easy start for her this week.
OH and I have a little moaning to do as well..
6o minutes?? WTF? 15 minutes squeezed inbetween medicare fraud and tyler perry dressing as that ridiculous fat woman?? kidding right?
they could make a mini series about what we go thru with our doctors and the drugs and watching our child continue to have seizures after numerous drugs! It sucked and quite frankly I got nothing from it. girl with inovative implant..ok ok that was interesting but...cmon!
Well I guess that is all from me. Im a little behind reading blogs but but Im gettin there!
((hugs))

First of Firsts :)

Madie did GREAT her first day! They just LOVE her! i was so confused by the one way going around in circles parking lots and drops offs but I got the hang of it.
Said she fell asleep for about 10 minutes but otherwise tolerated her day!
BIG GIRL! I see a little yellow paint on her shirt I hope I get a creation!
Tomorrow we go visit with my sister who spoils madie rotten! I cant wait! :)
have a good weekend folks.
Big Girl is exhausted passed out right after her bottle...LOL
:D

3 year check ups. :D

Heading to the Pediatrician today for madies 3 year check up..
Last time I was there I was told that madie was in the 5th percentile as far as weight goes and was given the GI doctors name, instructions to schedule a Barium study,feeding therapy instructions, and the new found Pediasure$$$$$ Diet...
SO much was on my plate already and NOW I had to worry about my child growing!!
Well its been awhile and my Madie has come forward..I am dying to know exactly how much she weighs with high hopes of a good weight gain!
I am still skeptical of this Banzel..sometimes I may just look to far into things...like she doesnt seem to want to sit as much...she CAN still sit but doesn't get up as fast as she used to when she fell...should I worry about that? is it the Banzel or the fact that she is still having her drops?? whoooo knows! I will NOT let anything take away her achievements! NO SIR! And if Banzel is the culprit then so be it. bye bye banzel....
I have to give the drug one more week and see if her jerks continue...which I am sadly certain will...dunno...(hubby just loves my glass half empty mood)
Oh shoot...I gotta get madie fed and we gotta go..bout 20 minutes to pedi..to be continued...:)
Me.
PS!
Just a small update..Seriously folks I waited in the Pediatrician for an HOUR! if not an hour and 15! whew! for a 20 minute check up!! GAWD!
Madison was SOOO good! Such a big girl sitting on the paper table which she always hates! LOL But But only cried when they lay her down to measure her and examine her..so I cant complain..I fed her a bottle in the waiting room so her tum tum was full as well :)
Madie is in overall good health...no issues...meaning nothing other than seizures that I can complain about along with her delays..
She was 96cm and 26 pounds! FINALLY on the charts with her weight! about in the 6th-10th percentile! EEK! BUT I explained that her new love for her baby food is recient and we are stiiiil workin on it. I have hopes!
Keep goin with the foods and Pediasure and keep her posted on anything the Nuero changes with her meds etc etc..she was really nice..but in a rush. I hate that.
The other Pediatrican that is usually there with her was out on maternity leave..so she was flyin solo. it was busy.
I left feeling OK feeling that we are moving in the right direction and that well I have a happy child. :) Healthy and Happy sweetpea.
She looks right now beside me on the floor as I type on the laptop like she wants to crawl...its the funniest thing..up on those knees..still allllwyas sitting pretty.
Tomorrow is the big first day of preschool...its so hard to belive that madie is old enough..in my mind she is such a baby! Her new backpack is all packed..she has Nooooo Idea! HA.
*sigh*
This weekend we head to Mass to see Auntie Jennica...My sister for a few days and enjoy some of her boyfriends mothers home cookin. They are such awesome people I cant wait to see them Ill stay till they kick me out...LOL
((((HUGS))))
Me.

More Banzel and Preschool! yup together!! fer real!

More Banzel...up to 200mg at night and still half tab 100mg in the AM...I cannot say that the drops have gone away maybe a slight reduction...but cmon is something really going to work in 2 weeks..tinker tinker with that dose..as we did with Depakote...soooo onward we go into another 2 weeks then we have to call nuero back and update...
I really thought we were past this whole trying new meds thing...when Depakote worked by ridding her of her tonic clonics..we were home free~ nope. Seems another type of seizure just shows its ugly face...will there ever be a 100%???
SO 2 more weeks with the increase and we see...Blood work has been comming back fine as far as liver function too...but Banzel does not effect the liver...
Well in good news...We can scratch off two good Milestones for my girl..Sitting of course and EATING! Madie Girl has been eating her baby food like crazy! 3 Jars yesterday! and 3 pediasures! I felt like eaach time she fussed she was hungry! Big growth spirt ahead! Lets just hope this good eating continues...I have not seen her eat this well since she was on her ACTH..which feels like decades ago..
Despite her Jerk Seizures she doesnt SEEM to be regressing...just staying plateu in some areas and moving forward in few..her little frame feels bulkier and stong...Its hard to tell sometimes when her meds kick in...she is sleepy...I hate hate hate that! when she has druggie eyes...and when she woke so alert and crazy eyed! I may see if I can switch to the depakote sprinkles...ya think that would release a little slower..maybe not so much at once>? Or ya think it would just make her sleepy allll day??
dunno.
I will not go into the sleepless nights the past few nights have been tough..teething Im guessing cause the drool is insane and the hand biting and red hot cheeks..Poor baby!! Last night she finally slept all night but I was still up at 5 tossing! Dontcha love that! At this time she is passed out on her blanket..I am assuming feeling better and catching up on her Zzz's..
Well anyhooo..
Preschool meeting went well! They sure have a game plan for her! her days are Wed, Thurs, Fri 9-1130 am. She will have her OT 2x a week and her PT 2x a week and her speech 1x a week...for 30 minutes to begin with..can always make longer but 30 for now...
I will bring in diapers and wipes and a jar of food and a shake...whichever one she will eat..if she gets hungry... She will get a notebook that the teacher and I can communicate with about madies day..like say if madie was up at 3am let her know..lol..
I can also bring a few of madies favorite toys so she has things she can snuggle with or play with..for now..until she understands some of the toys in the room..and for my own well being...lol
There are 11 kids in the class..and 12 on Friday..since one child only comes on Fri..
They also opted for a summer program for madie as well..to keep her goin..but we will discuss that when the school year is almost up..to plan for that as well.
To me Madison is such a BABY! she is just obviously not like those other kids but just the exposure and the new things she will see and do...like seriously folks...cant tell me she is not going to take leaps and bounds! In one year where will she be???
Well you will just have to keep reading to find out~! LOL
I was glad to be out of that conference room for sure..it was getting mighty toasty in there despite the nice fall day outside..
Hubby and I laughed cause we swore we saw the principal at Margaritas restaurant playing probably the worse "lively acoustic music" we ever heard....LOL! But we still have to confirm..unsure..but pretty certain..HA
One week from tomorrow we start..on a friday...just one day to begin..since she has to get pediatrician signed papers and neurologist signed papers...we cant see pedi till next thurs... Sooooo
Which i think is good...then the week after we can get her into a full regular week.
I have opted to drive her ...cause busses with my madie on them frankly scare the crap out of me.....
OH and next week..my big girl turns 3!! CRAZY!

Pumpkins and Banzel and Preschool meetings! Yup all in one!

Had a great time at the Pumpkin Patch yesterday picking out our oh so cute pumpkins:)! madie got so muddy after I put her in the middle of the pumpkins but I had a vision of getting her picture with the pretty orange pumpkins :)
It was a muddy place after our big rain storm on Friday but that did not stop us. We took a hayride to the small field that was just full of picked pumpkins up for grabs.
We like to support the local farms around here..there are so many shopping centers and grocery stores and sadly the farms are getting fewer and fewer...I mean how good can veggies from other countrys taste after traveling over seas etc etc...US baby! Homegrown! The yummiest!

Well we have been on the ol Banzel for almost 2 weeks and I already just dont like it...I dont see any improvements in her drops and jerks...they just keep on commin..I just know that when I call On Wed making 2 weeks that they will tell me to increase....INCREASE....oh like she is not sleepy enough! druggie eyed at times...I dunno if so much from Banzel but irt probably doesnt help the cause.

The past couple days she has been super irritable...this mama needs a night AWAY from this kid! winey winey teary teary ...woke this AM at 6am SCCCCRRRREEEAAAMING...It was still real dark outside..thank you winter season! and It felt like it was in the middle of the night. I fed her and medicated her adding a lil tylenol in the mix and we all fell back asleep in our bed...
I am not a huge fan of the co-sleeping I just dont want her to KNOW that she can come in my bed anytime....But then again I think Desperate times call for desperate measures...this kid was mad! We all managed to sleep till 9...whew.

On a good note...THIS KID has been EATING! she is HUNGRY! everything I have fed her to try she eats. baby food of course...but this is HUGE! Food?? YUP! Ok I will not brag too much but its been going well...we try 3 times a day...and If I can get all three jars down then that is great but usually 2 and 3 bottles...so far.
Thinking of switching to the Depakote Sprinkes...ya think those would be better than the liquid stuff? how does that stuff work? sprinkles? hmmm dunno.. I figure if she is go good at eating her food she can get her banzel and her Depakine mixed with her food...
that above picture is her in the car happy with her lil pumpkin...hee hee

Today Hubby is outside mowing and raking leaves and I am listening to Madie cry in her crib for reasons I just give up on...I am sporting a two day headache already..
Tomorrow I get to go to my Phisicain and hear that my chollesterol is probably still high and that I am still too fat....but in my defense I just love food and cooking....:(
Then Tueday we head to The Preschool for Madies PPT meeting the BIG one...the GAME PLAN will be discussed and its also the last OT session EVER! I want to CRY! We have been with the Birth to Three since Madie was 11 months! CRAZY how all this time has gone by already!
Well I think Lil one is tuckered out I guess that is mty cue to get my day started...or just pass out someplace...
(((hugs Mamas))
Me

Hungry Hungry

OMG where has this appetite come from Miss madison?? Ohhhh I wont complain! 2 jars of food and 3 bottles! now ok ok sounds like a little but to get this kid to eat her baby food has been a loooong battle..and it still continues..she cannot comprehend what to do with a cracker or puff...or feed herself...or chew her food properly..so its all Pure' now..

She has been enjoying Oatmeal Cereal mixed with whole milk and peaches. and her chicken and rice dinner...and sweet potatoes...and uh..Turkey Rice dinner as well. :)!
With this added food can I just add that the constipation barrier has been busted! This kid pooped like 4 times yesterday!! never more than one a day for this kid!



We have finally tapped out of our huge supply of Pediasure we got in the mail awhile back and are back to buying shakes...Uuuuugh cant say I missed that 9.99 price tag..still 3 cans of DUOCAL left so we have some time before we shell out the 31.49 per can for that...uuugh.
She wined and wined yesterday and each time I fed her and she ate and was happy..she was HUNGRY! Its been a week off her Zonegran which I knew on a high dose took away her appettite alot..maybe getting her off of that helped?
Every time we get her OFF a drug something good happens! Clonopin? she was sitting! Zonegran? she was eating!
Of course we all hope for compleatly FREE of drugs but the sad truth is that madie has seizures that are hard to contoll...getting her OFF meds is just not in the picture! We just work on having her on as FEW as we can WITH seizure CONTROLL..
Oh ya just never know...Madie does things on HER terms...when SHE is ready..
Well maybe just maybe the banzel is increasing her appetite?? dunno...
She is still going about 20 drops a day...that I can count anyhoo! whew...they dont seem to slow her down..she is up up up. But the meds still make her hazy eyed at times and I hate to see that! I dont see her anymore tired than she was before banzel...so I think if anything is making her sleepy its the depakote... Nuero Nurse says we can switch her to the Depakote Sprinkles that are more of a slow release..intead of the liquid that kinda just kicks in fast..dunno what I wish on that one..hmm Cmon Banzel...cmon...
In my past experience there was no drug that stopped Madies Infantile Spasms...it just one day changed....like literally one day her seizures changed...
I cannot tell you when she began her drops again...dunno...a few months ago at least. Its so frustrating!!!! Just GO! Just GO AWAY! Give our kids chances at seizure freedom! Banzel is Drug number 8 for us. Depakote was the drug that really gave madie her BIG BAD seizure freedom no doubt...but it always seems as if ya get rid of one type and another comes...with this diagnois of a "modified Infantile Spasm" whatever the frick THAT means....
Nurse said it has the "look of a spasm" but does not show the Hyp waves on the EEG..
Uhhhh OK.
My hopes for madie are never diminished. Its what keeps me going!
IN OTHER NEWS!
OMG Preeeeeeschool! SOON!!! Big PPT meeting (Planning and Placement Team meeting) to get madies Individualized Education Program..or IEP. Big meeting with her Birth to Three Therapists there as well...we will sit with her new teachers and therapists and they will tell us how madies day will be...what goals they have for her as well. Exciting but SCARY! madie is so tiney compared to the other kiddies in the room! Oh and ALLL the kids have their little LL. bean personalized backpacks..LOL allll lined up on their hooks. madie has a hook waiting for her too..it was so cute!
We also say bye to our beloved Birth to Three therapists...:(!! I am hoping to be in touch with them as madie grows they have been amazing and alllways love madie with hugs and kisses and cool new toys! They have done so much for us..from alerting us of Madies Infantile Spasms to getting us a Noisy Box and an Adaptive Stroller!! Im so going to cry! Out of sadness and happiness...its such a huge step for madie adn for ME! My lil coddled special needs baby girl...always treated with extra care and protectiveness..as my husband would word it: SPOILED! HA!
No denying the spoiling on my part!
Its a new step to madie becoming a BIG GIRL!
And with all this eating she is bound to get there at least physically!
OOF!
Ill keep ya posted on anything new and exciting...
Fall is in the air and we go to get our Pumpkins soon! I love carving up pumpkins and hubby loves to bring all the roasted seeds to the office :)
:)

Hello Banzel G-bye Zonegran!

Well I just wanted to say quick this Am that the intro to Banzel SO FAR is going just fine. We began Wed morning and I was already hesitant as I tried to crush thru the "candy coating" shell of a pill..not too easy! better get one of those pill crusher thingies...ya know...LOL
Anyhooo Wed Am she was kinda grumpy..her cheeks were flushed from her teething and I was wondering if it was from her teething or the med..dontcha love that our childrean cant tell us! Anyhooo she was kinda warm that morning I did not take her temp casue she eneded taking a small nap and woke OK..ehh..
Later that day we headed to Grandmas house to say Hi..she was in Ok spirits still having her flushed cheeks and seemed kinda sleepy..but OK.
Grandma got her this great Lamze toy a little princess with a krinkle skirt that is all different textures and colors..and madie LOVES Krinkle! hahah it was a hit she grabbed it and ate it and squished it and lifted it above her head..it was cute. by 2pm she was tuckered out and napped pretty good.
Now they (genius doctors) tell me that Banzel will take effect against her drop seizures in 2 weeks...IF IT WORKS..
We all know how that goes.
Zonegran wein was quick and painless..she was on such a low dose I did not think much of it really..:)by the way.

Thursday morning I took it upon myself to lower her Depakene by half ML..Ok Ok so I know I am no doctor but we initally increased beacuse we wanted to see if it would stop her drops..well it did not...why not take it down a notch and give her some awake time..specially if she is going to be pumped with her 100mg of banzel in the Am as well...
I just hate too much medicine...why be on more than we have too...please no hate mail..lol
A funny think about her seizures..she tends to always fall to the left...has a black and blue on her noggin to prove it..dunno if that has any meaning or not..also holds her right wrist alot. ..and the hands in the mouth are just insane!! the drool and the sticky fingers..kinda gross really..she pulls her bibs off hating that tightness around her neck (which is quite amusing when she gets mad at her bib)
She hates laying down unless she is going to sleep..always sitting..
She was doing some great weigh bearing in her legs yesterday and I was trying to encourage her to hold onto the bar of her noisy box..she actually put her hands on it but was by no means holding herself up without my support..but it was cool :)

Madison has generally been in a good mood. Jerks..aka drop attacks.."modified" spasms..whatever the heck ya want to call them..still insist on nabbing my big girl sitter. She has such a great sit..so strait and tall! lol now lets get that STAND!
I guess that is all from me..if anything earth shattering happends I let ya know. :)
Heading to a town fair this weekend with hopes it doesnt rain! Also Hubby and I celebrated an Anniversary yesterday...a grueling FOUR whole years...LOL
Tonight I hope to get a sitter and go out for a nice dinner...cant complain so far with the dozen gorgeous white roses!
Hugs mamas. and Dads :)