Madies Chair....

Its called "Kimba MPS Seating" this will be Madies new adaptive stroller.... yuppers...its a cadilac alright...35 pounder! costs about 3500-4000 buck-a-roos!...we may have about 1500 out of pocket to pay...Madies PT is seeing if Birth to Three will cover the rest of the cost as well(1500)...but insurance SHOULD cover the bulk of it...
I am sad that we are even looking at these things...I am frustratited that there is not a miracle that alll of a sudden Madie has the strenth to walk....Is this a lifelong thing??
She is happy go lucky today as I am trying to get her to nap...but I guess I cant complain if she is happy..
She did great with her OT yesterday with her jiggler toy in her mouth...opens her mouth for this toy and chomps away!! hahaha I have a pic of the jiggler as well but not on this computer...gettin there.:)
I just wanted to share the picture. Its from a company called Otto Bock...www.ottobockus.com
We hope for insurance approval that will take a few days......I know I know.....we shall see.
Ill keep you all posted.

Just another day..doot dee do do do

Well hello again. :)
my latest update is well....kinda waiting...
Since Madisons blood work came back with slightly elevated liver we have lowered her Depakote back down to 3ml twice a day...and lowered her Zonegran to 100mg every other day..which has given her a MUCH better appetite! she is actually eating ounce wise what they want her to eat..if only we could squeeze in that 2 jars of food they want..Sorry, when I say "they" I mean the feeding team folks..:) and the Neuro lowered her meds..:) Nuero also says he wants to do another EEG! Baccccck to EEG to see where she is seizure wise...well I can tell ya that in my blog! But we are waiting for the call from EEG folks to get Madie in..and after he wants more blood work as well.
Isnt it crazy how they can detect weird brain waves even when they arent having a physical seizure?? crazy!
MAdison is much more awake without all that Zonegran I tell ya....and seizures? well...*sigh* ya just never know..the annoying twitches persist...and sleepy seizures as well...big ones that are scary are few...but these are nonetheless Seizures....I have seen no Ill effect from lowering her meds...dunno why we had a bad spot with those few days of bad seizure....strange how this works...I am still convinced we are on too many drugs..and working my heart off to get Madie OFF some...still persistent with that half a tab of Clonopin! gah! She was a zombie on 4ml....that may have explained the liver...eh?? dunno.
We are also STILL waiting to get Madies high calorie shakes..her Boost 1.5 I have been on and off the phone with some lady named Linda from the Pediatricians office trying to get the script for them and insurance aproval...I have no idea if its a insurance thing or if they cant find these things...who knows but we have wasted about 2 weeks of madie eating well when we could have gotten these shakes down the hatch!! We absolutely NEED her to gain weight. I Verrrry calmly(you know what I mean...lol) asked for the Pediatrician herself yesterday after I tried to get this Linda person and was told she was on the phone and to leave a message.... The Pediatrician was summoned and came right to the phone.. very nice telling me she will figure this out...says she wrote the prescription....and will call me today. Promised.
Oiy and Oiy.
We also have our GI appointment next week...dont know what to expect but if they say G-Tube Im walking out... maybe they can give me something that will increase her appetite? is there such a thing??
We head the day after to Genetics...Im not really up for thinking about that right now but I am terrified of any tests they may run...
We also are hoping soon to get Madie into her speech therapy/feeding therapy sooner than later...jacking up to 3 therapy's a week! yippers! I guess it will keep us busy eh?? Cant we just go play in a park instead?
I do not have the ability to get pictures on this blog today...I am using my hubbys work laptop..our home computer is having monitor issues...the dang thing is burnt out..I freaked out thinking I crashed the computer! LOL...nope..shotty monitor. I will muster up something next time :)
Thinking of you all...Austin you are such a BIG KID! eating all that big kid food! Ohhh man I am so jealous!!! hahaha
Cami!! where are those B-day pics?? hahaha
Oh lil Reagan sweetpea..you are such a fighter. hugs and kisses from my madie...keep us posted.
Keep Prayers for lil Zoey too...I am touched in my heart by her.

Big Girl...(and gettin those meds right)

I cannot go into enough how proud of madie I am!! she did AMAZING in her Barium!
Lets begin from the beginning.....
We were kinda confused where to go and I had written it down..(what dept) but if ya know me and my "lists" they are always forgotten even though I obsessively write them....
BUT we found the Speech/Vision/Hearing etc dept....whew. and therapist was there waiting for us! We were escorted to Radiology...a familiar place from over a year ago when we were getting madie's MRI....
Well we sat Madison in this upright chair thing...made of wood and some padding...she sat strait up like a big girl and swung her little feet...Thank GOD they did not have to strap them down! let her feet and legs move freely and just a belt thing to hold her in....
The therapist began to mix her Bananas and her pediasure separately with the "barium" a chalky white stuff....and adds a thickening agent as well...making the stuff look like glue... smelled a bit like the Metamucil stuff...(when I was pregnant I got fiber by taking that stuff....yuck)
SOOoo she mixes this stuff up nanas in a cup and shake in a bottle..
While she was doing this Miles was playing with her and she was giggling...she was in a killer mood!! alert...happy...interactive.....
We all put on super stylish lead vests and a really smart Asian guy came in..."he was the radiologist"
We wheeled over madie in her little chair to the machine and they instructed me to give her a spoonfull of the pure'...She did AMAZING! a little fuss in the beginning but she did all they needed to see...! the bottle feeding was hard...it was just awkward she was not about to get that down so we just oral syringed some liquid in her mouth and that was all they needed to see.
Barium was all over..yucky yucky.
When the test was over she was happy as a clam....we had to wait a few minutes and I wiped her up and we talked with the therapist who says she was happy that they saw no reason for concern...recomends speech/feeding therapy...says she certainly has a delay in the eating dept...but we can work with her...she will inform the therapy center near our house and we will probably get a call so we can get in...im kinda excited about it!!
Seizures have been few....a few days had passed since a biggie and just this AM she had a big one...I maybe blame giving her meds a little later than usual....dunno?
We are having problems with her meds...her blood work came back twice already with elevated liver....THE ONE drug that seems to be working is messing with her liver....
I sugested than MAYBE we go down further on her Zonegran...well I was told that Zonegran doesn't effect the liver...only kidneys..."only kidneys folks..dont be alarmed" GAH!!!
Soooooo we went down on the Depakote to our 3ml 2x daily and went down to every other day 0f her Zonegran...to get her appetite better....cant we just get rid of it!!??? ugh.
I have read that just bringing in other drugs WITH depakote can effect the liver...not just the depakote alone!!(which can too don't get me wrong)
dangit I just dont know....maybe we will go with the other drug...Lamiktal?? I think it was called....but we chose Depakote instead.....I wait to hear from neuro about her blood work we had done on Tuesday....they had the results but had yet to talk to the doc when we stopped by yesterday after her barium...."we were in the area" we said....
Well I guess that is all....I will keep u posted on what the doc says today about her meds...
MADIE you need to gain weight!! taking in more Oz wise but food continues to be fought over...gettin there

Here is a funny picture for you....this in in my bathroom....I had a pot with "cat grass" growing in it...its a real sunny window sill and the cat eats this stuff like its drugs! I figured I would let it get sun so it could re-grow....well kitty kitty found her grass......

LAST time I buy it folks!! GAH!! I was so mad...I knew that our cheapo vaccum had just kicked the bucket....and I was sweeping like crazy...fuzz and hair were getting crazy....I told hubby I was going to target and getting a new vaccume..!!

This very same night Hubby went and bought me DYSON.......

He figured "what the hell, if your going to get a cleaning machine...THIS IS THE ONE!"

I was squealing with delight!! hahahahahaha

Shwallow study Soon!!

Little Monster!! Rrrrrawww!!! hahahaha Ok..whats going on..well we have a few appointments coming up for miss Madison...got a call yesterday from the GI folks at Children's hospital and they asked me when was a good (wed only) time for me to bring Madison in for a Barium Swallow study..told em did not matter...she said she would go check with radiology and call me back...like 5 minutes later she calls...NEXT wed!! Feb 18th!! We are in! She made it sound real easy..told me to bring some food..bottle whatever and I would hold Madie and they would x-ray....hmmm..I seriously imagined this contraption that keeps her upright and me trying to feed her while she is in it....and an x-ray that travels around your head like at the dentist...lol!!..dunno...
I am never wanting to go to Children's Hospital and its scary how I know my way around so well...I think it was that 4 day stay with ACTH in Nov07.......ya think"??
I just know that the feeding team wants this..her pediatrician wants this...the nuero wants this..and I want this...Soooooo Miss Madie, you are stuck!~

We are also hoping...HOPING that we can begin to get her off her Clonopin..Clo-ba-zam...SOON..she is certainly feeling the effects of the medications these days..super lethargic..mama little snuggle bug..
Seizures are few..not gone..but last huge one had her pretty out of it for a couple minutes! after the initial seizure she is blank and floppy..her eyes off to nowhere seems like an eternity..I think we all know how that feels...
Her twitches persist...sometimes I see when she sleeps or when she is just hanging out with me..not so much like the spams where the whole half of her body drops for a moment...just a hard jerk...its hard to explain...but she cries sometimes when she knows she has had a small seizure...zaps when she is being happy too...:( :(



We wait for her Blood work to come back...the Nuero faxed the paperwork to the lab and we went yesterday..IF her levels are good than we HOPE we can go down on other meds...I am ready to take the risk of getting her off her other meds...Its just TOO much...enough is enough of this drug cocktail...why do they always do that to our kids? Even when they say that we can try a new one they never take away any others....and its like "well if it WAS working than dontcha think we would be oh....NOT having seizures??"
Yesterday I thought she had a fever..she was so warm and out of it when the ol drugs kicked in..it breaks my heart that she can wake so happy and full of life and then a couple hours later depending on seizures....will be so sleepy....each day is different..some days I feel that she is not so sleepy....some days she is just wiped out...why do you have to be so hard to read madie!!! lol

We have more appointments but not till beginning of March...will be here before we know it! We will have this swallow study under our belts before the GI appointment as well...

Everyone is working so hard....its heartbreaking...everyone is so supportive and the unconditional love that everyone has for our Madie is overwhelming at times..

For now...enjoy pics and Ill blog after the Barium...fun fun fun

Going out to a great restaurant with hubby and a couple friends tomorrow..I'm excited...they have amazing food and drink..:)Its rare we go out and get dressed up :)!!

Hugs mamas

me

Gettiing there...:)

Why do I have to call all these people myslef???!!
We are having a hard time getting Madisons Boost shakes and her DUOCAL.....Its been about 2 weeks since we have been trying to track this stuff down and get a prescription for it and get insurance to give us the GO...The woman at the Pediatrican says that the one place she tried doesnt carrry it....SO THEN CALL another dummyhead!!
We just increased her Depakote Thrusday night to 4ml.. MAN was she sleepy on friday...whew...It happens alot with each increase but we have to see good seizure free days...not just a month...!! We need lots of days! I am so anxious to get her off her other drugs! I just hate having her on this cocktail...its been a year of too many drugs...time to go with ONE....and risk the seizures...for her developments sake!! We saw no big seizures this weekend...I am still not content with her mood...think she is still wayyy to sleepy...on Saturday she just wanted to sit with me.. or just lay on the floor sleepyheaded....it stunk! We still await for the form to go go get blood work done in about a week....ehhhh we shall see.
No bog plans for Valentines Day but if I get treated to something I will let ya know....money is just so dang tight now....ugh. This Awesome place we used to go to closed!! I certainly miss their homemade ravilois....:(
Well Miss madie is well...one day at a time....I guess I am unmotivated to type more..
Hugs mamas
Me

BIG GIRL!!

Day 2 of her increased depakote...she is sleepy....but usually that happends with every increase and gets better....we are up to 4ml at night and 3ml in the AM...going for blood work in about a week and a half...
I was shocked this Am...near tears to see her balance herself in a sit....
I am hesitating to even brag or post these pics....We have only seen her sit when she was on steroids...TWICE!!
(oh and yes that is a filthy shirt! veggies! hahaha) its EARLY!!


Please Pray that this is a sign of more things to come...that we will see more of her achivements..
I say she sat a few minutes before falling into my bed pillows....

Well I guess not much else...stiilll waiting for insurance aproval of the Boost 1.5 shakes and the Duocal.....ugh...dunno folks....

getting there little ones...one small step at a time....

Found a quote on another mommys blog that I want to pass on....

"Everything is Possible....the Impossible just takes a little longer"

me.

Break Dancin

Yes, I like to give fun titles to my blogs..LOL
I ask what the heck is my Madie doing in these pics?? Happy as a clam....
Yes, Seizures are back..yuppers...we have upped her Depa-keen (they keep correcting me) DEPAKOTE I keep calling it...and will dangit..lol. Increased to 3ml twice daily and decreased her Zonegran to 100mg at night....stiilll on Clonopin.. half of a half milligram tab.. .25?? SOOO anyhoo...her seizures had returned..usually one full body huge one a day...leaving her unwilling for therapies...for play..for anything but mama and her blankee....
Well we went bout 2 weeks with the new increase and I know that we should try to be patient...but after the past three days in a row of bad seizure..
Back on the phone with neuro..gah Well the plan now is to go to 4ml at night only...and the nurse said she will send me the paper to go to get blood work done that doctor wants in 2 weeks... Ok...On it!
Sooo last night was the first increased dose...she was in good spirts till 9 when she fiiiinally fell asleep..haha it was all good. :) I enjoy her happy times..:)
Ohh can I just say she took a tumble off the couch! ahh! I had just given her a bath and had her sitting up on the couch..( I know...bad move for lil one who cant sit!!) Buuuut anyhoo...i was getting her bottle ready in the kitchen and heard a thud....
As the F word slipped from my mouth I ran over and there she was SCREAMING on the floor...luckly she was on carpet!! She survived triumphantly and I let her know that she is getting too good at her rolls!! The hands in her mouth are insane.....her face is so red sometimes and it is awfully slimey....


Earlier in the day I had her upstairs in our therapy/tumble room/ office nook room...haha
I had design ideas for this space!!! Nope....hahahahah Noisy box makes a lovely end table...Its so Peir One....


Dunno what she was doing...IF only she can get those arms in process!! gah!! when when?? she can get on her elbows and look around for sure...but as far as really crawling nope... I take what I can get these days and the Happy moood to go with seizures and all...eh.

Still struglin to get this kid to eat!!! EAT!! Still waiting on Insurance approval for this fancy shamancy shake they want her on....Boost 1.5..... and her DUOCAL.... all pretty pricey as I mentioned in my last post.

Well my phone is ringing and its my friend who wants to plan her wedding in 6 months...should I agree to be a bridesmaid???? oh gosh...

LOL

Hugs mama.

YOU GO HOLLY!! Ill e-mail you soon :)

DO I really sound northern?? LOL LOL