A new Vitamin...for madie

Nuero wants to add a Vitamin into the mix now...and as strongly as I feel about not putting anything else into her little body this has to be done. Liver is still a little too high...better but not where they want it to be...

Went to the pharmacy and picked up a vitamin by the name of Levocarnitin...or Carnitin..this vitamin I guess will hopefully help with her liver and the deficency that the depakote is causing.We are going to try at 300mg twice a day for 2 weeks and then get more blood work done. If this comes back still elevated then we are going to have to discuss the depakote....or maybe another drug. I am so frustrated and JUSt want my little girl to gain some weight..!!
She still prefers her Pediasure to her Boost shakes that have at least 100 more calories than pediasure!! we can at at most 2 scoops of DUOCAL to the mix..one scoop per 4 oz...and your lucky to get 6 oz in a feeding.
She is happy...oh she is happy...vocal and LOUD...breakdancinig her rolling self on the floor..full of LOUD...lol I guess I cannot complain she is far from sleepy at times...Seizures are very few...maybe one every few days...
Development continues to be troublesome..I have been instructed to put her in her stander for 15 minutes a day. Only 15 minutes...Ithink I can handle it! eh?
Madies OT gave me info on Oral Hypersensitivity...ehhh lots of things I have already read but she meant well...eh.
We are anxiously waiting for Madies other OT to to have her baby and come back to us!! lol.
(not that other lady is not nice.)
cant wait for it to get warm...I have my bulbs already sprouting up in the yard and Im dying to get out there and clean up and mulch...yeah crazy. :) I just love the smell of mulch...LOL
Well I guess that is all...Heading out to see my sister this weekned and looking forward to a relaxing weekned without housework.
Hold on mamas things will get better :) :)
OHHH check out Reagans seat! Im sooo jealous!! I want one for madie!! Eeek to the price tag!

:)

just a hello :)

She truly hates that clip in her hair..I had to fix it like 3 times...hahaha THE LIVER IS BETTER!! whew!~ Now we wait for the doc to call us back and let us know where to go with her meds now...seizures are pesky....in her sleep or when she is feeling really tired...over tiredness can always bring them on..but she is well... I think 3ml was a good does for madie but it was too much for her...and when we upped to 4ml at night...she was a zombie! Noo good! She remains happy and LOUD..lol with her giggles and high pitched chirps...
I took her to Wall mart...( I know, die hard Tarje girl here) and we bought some potting soil and new pot for my indoor hanging plant and some candles....ehhh got us out and the weather is nice....still a bit cold but warm enough for just a sweater.
She did great with her OT today...biting her jiggler and allowing things in her mouth to bite... it was so cute seeing her little hands around the toy that was in her mouth..:)
we have a new lady cause our Miss Tara is having her baby soon! We miss her but the new woman is pretty nice too...cant wait to hear the news of her finally poppin!! LOL...Eeeeeveryone seems to be preggo these days...my Aunt just found out she was pregnant as well! I cannot keep track of all the cousins I have! Adding to the wonderful family I have :)

No word yet on the stroller yet...stiiil seein....hmmm We will see her PT tomorrow and ask her about the status.. We are still going to battle with the Insurance companies on Madies Feeding team appointments....The Pediatrican wrote a great letter stating that it IS necessary for madie..we can only wait and see before the bills pile up.\

I guess that is all....Madie is sleeping and I am going to finally straiten up a little...and maybe feed the poor cat :)

Hugs and Hugs

Me

Easter Madie

With all the uncertainties about my sweet baby girl..she is 2 and a half already..and so big! How time flies. We continue to be optimistic that we can gain complete seizure freedom and get Madie strong...her lil muscles just roll herself all over...
If I give up hope I just crumble...I just hope for any chance that will be given to this happy lil girl...there is a silly lil girl in there just ready to drive us crazy! and Im ready!!
She has been pretty sleepy the past few days..I dont know if its seizures (which I don't see much of) or meds..or the fact that her little cheeks get rosey red from her teething and she refuses her bottles.... there is alot of pressure on us to get those calories in her tum tum.
She is generally pretty happy...squeals and funny noises I have no words for..lol one is a loud high pitched almost "chirp" and a loud scream...lol
She certainly knows "silly" like when dad gets closer and closer to her ready to tickle her little cheeks with kisses she just knows and before he can get to her she is already giggles..
She enjoys movement games..being bounced and swung...or holding her and pretending that you will almost drop her and catch her before she slips..ohhh she giggles so much and grabs dads hair..I joke with Miles and say that she will tear out what lil he has left in front!....lol.."daddys soul patch" lol!
Sometimes she just likes being carried around..kicking her lil feet with deight..but that can get heavy...:)
We have not seen the famous feeding team in awhile due to the fact that our insurance has not been covering them and bills are piling up...(bout 4 so far)we are in the process of trying to prove that its "medically necessary" I get the task of hitting the phones in the morning and requesting letters from her Pediatrician and other therapists...ugh.
OH! Just had m0re blood work on friday and hopefully by Monday or Tuesday they will have results for us and hopefully we wont have to go down more on her "Valproric Acid" or Depakene..the liver just keeps coming back elevated..its so frustrating....I just wish we could get her off her ZOnegran and CLonopin...enough is enough...but would that be a bad thing? I couldn't bare to see tons of seizures return when she is doing so well!
Doctors have still no answers on her condition...why?? so many "whys"...and desperate for ANYTHING that can give us hope here...I feel as if we are moving in the right direction with seizures I feel we are SOOO stinkin close to freedom... then what will come? I wish for less medication...but only madie can prove to us that that is the right thing t0 do..my lil sweetpea... Madie in a dress is a sweet lil sight... If only she would stand tall in her dress and run and jump...:( Be patient they are cuties!! These are potential Easter Card Pics..:)
Hugs
Happy Birthday lil Regan..:)!
Still thinking about you Austin ;)

Madie Madie

Mmmmm lets eat Madie! LOL!! Certainly earned a bath tonight! Sticky Sticky!

Figured Id try today...ehhh bout 1/2 jar down the hatch and some bottle afterwards..

We keep on goin...3 seizures since Friday...stupid meds! Have no Idea where we are going with them...tired of talking about meds!! gah!

Hubby and I spent yesterday putting together our new computer desk! 5 years I have been harrassing for a desk!! We literally had this little trolley thing from a tag sale! haha This desk is huge!! almost tooo much room! Other than that...good weekend of family dinners and relaxing after a long two weeks...no doc apts this week! wooo hoo!! only her PT and OT...easy weasy.

She was giggling...haha

I will keep you all posted....no news really..just wanted to post some pictures...:)

Keep Lil Austin in your thougts its a big week of tests for him! Ohh and Reagan to get over her yucky bug! :P

Hugs

me

Weight of the world.

Oh this Kid...:) Blood work came back STILL elevated liver! still!!...GO FIGURE...the one drug that has been helping after over a year of drugs.... We have been instructed to go down to 2.5 mL in the Am...and keep the 3mL at night...so down by 1/2 a mL..with hopes of bad seizures not returning and her liver getting back to normal.. then two days into that...big one today..but that could be a coincidence?? ....
Can anyone tell me if taking Zonegran WITH depakote effects the liver MORE??? I SWARE I have read it but I cant for the life of me FIND the words I read! Nurse tells me that "oh no no no Zonegran is a drug that only effects Kidneys" BUT is it metabolized in the liver and excreted thru Kidneys?
I still stand my ground in IF we can get madie to gain some weight she can get the right dose of Depakote that she needs and when we can finally get her off the other drugs.... *sigh....so frustrating...I am repeating myself aren't I???

Dunno anymore. I feel weight of the world on my shoulders this AM...maybe just because its been a trying couple of weeks...its just all catching up with me..Hubby was away on work this week and finally got home last night, madie has been up up up late every night this week once till 1030 (I know...boo hoo Regans mom is saying now..lol) and up at 630 I cannot complain about her mood...its AWESOME! when she is not having lots of seizures you can just tell..her mood and giggles tell all....Big seizures at times seem like a thing of the past..then ZAP. BOOM....back.
I had not seen a large seizure since...uh..over a week ago...and just this AM ...a real big one hit her. (hints my time to blog) The things I see are like well....Its like a seizure wants to start but it gets blocked. its real quick. NOt like spasms....where her body went forward...just that...like a seizure wants to start...but gets blocked. THOSE are persistent.
OH OH Finally obtained Madies Boost Kid Essentals 1.5 Shakes! NOT covered by stinkin insurance and 67 dollars for 27 at CVS.......I found a website that I can get them for 52.95...I dont know if I can "just buy them"
Still waiting on word about Madies Stroller...I am anxious to see this thing!
Welll anyhooo I will keep you all posted.
I wish everyone a good weekend...I look forward to some good family time..having dinner at Grandmas house this weekend welcoming Madisons Annt Brenda in town....and taking a breather. :) Hubby was invited to play some cards with the neighborhood guys in hopes of meeting some folks...should be a good weekend...:)!
GOOD LUCK AUSTIN!! I hope you get Answers you are seeking! I am so thinking about you!
HEY Karen! where are U?? Sleepyhead! Ohhh so a little pregnancy has slowed you down?? Nah, I was running marathons!! LOL
HUGGS Mamas!!
Me

Waiting and Waiting

Is it Spring yet? I tell ya, I really need fresh air and sunshine..so grey and rainy or snowy and wet and yucky outside. zzzzzzzzz
Madies jammys from her Auntie Jennica..(my sister) hahaha
Last week was just a week I want to forget...what a nightmare...SO BUSY and so tiring..On the upside Madie is feeling good..you can just tell...(yeah not a great representation of that in this pic) she just crashed on my bed..but I think its a funny pic...:) She is 32 Inches long if you are wonderin! hahaha
I anxiously await the EEG results and her blood work results from Monday...so maybe we can tinker with meds again..I would LOVE to get her off ZONE-uh gran! Every other day she gets 100mgs and every other day she is sleepy alll morning..usually springs to life in the afternoon so is NOT that bad...but can be better....
Her weight is still an issue...weighing her at the doctors last week she was 22 10 oz....ugh! why is this weight not gaining??? I just dont get it! she needs SO many calories in a day and she is just not that hungry...ehhhh We have the GI doc trying now to get her Boost Shakes....Well its been another week...over a month now...something tells me this is going to an out of pocket expense.....ugh.
That's another blog.
I dont know what to focus on these days...feeding, weight gain, SEIZURES, cognitive development, physical development, feeding therapy, Occupational therapy.....the list seems to go on and on... Seizures to me have become the oldest story in the book...I just go with em....when she has one it stinks and we go on...almost numb to it ya know...Even more frustrating is that her seizures are SO few that we still cant get her completely seizure free!! she is like 80 percent... THEN on top of that her nutrition is an issue along with all her other developmental stuff..."stuff".....
After that Horrible Genetic Appointment I am thinking we should seek another doc..ya know this guy came so highly spoken of...like if its an genetic problem HE can HELP!...
Maybe he is right...maybe there is not a genetic problem with madie...then what is it? Does she have a disorder or any sort?? Dunno...That too is another blog...eh? Saying that she is the way she is.. and telling me to just wait and see how madie turns out is UNACCEPTABLE to me...

Things aside from that are going..she is a happy camper...smiles and giggles every day...trys her rolling allll the time....rolling into anything hard...lol..(I have wood floors)..
I look forward to the weekend...Madies Auntie Brenda is coming to visit from Illinois and we will have fun shopping outings and dinners at the families house..fun fun.
Whenever I get some news Ill post :)

WAY TO GO AUSTIN! I am soooo jealous you are eating your foods SO well!!!
Did you get that seat yet Reagan?? I want one!! Did you maybe look into if her Early Intervention program will pay for it??? Madie has gotten tons of stuff from hers! Like her noisy box! FREE! Madies OT has never seen anything like it!
Hugs and Huggs

what next??

Well I may or may not get swamped with comments on this one!!

I am still at a loss of thoughts or words...what do I think now??

Went to genetics....

Well I went to him and told him that I am seeking answers...like oh...is there anything genetic that is causing my Madie the way she is?? Can we run any tests? Do you think there is anything genetic that is causing her to be so physically delayed????Can you give me Answers?? I felt desperate..I had waited since DEC for this appointment!!

When he stated that since her last chromosome analysis came back normal that there is nothing genetic that could be making her the way she is...( we had her tested for Fragile X syndrome and she was not a carrier at all) that there is something in her brain that is not letting her do the things she needs to be doing...something that may have been damaged and is making her the way she is...

I begin thinking WHY did I come here??

The Doctor looked at me and in not so many words does not think madie will walk. ..

NOW he did not flat out say that but he seemed like he thought it was not possible...grim prognosis....Told me I need to make her life as comfortable as I can to help her live as independent as she can...

I feel myslef beginning to cry...I see all the things I wanted for madie being torn away I see wheelchair accessible mini vans and huge harnesses for her bath and ramps...and oh gosh...my heart was racing I felt anxiety coming on...I see my dream trip to Disney being torn away. All I wanted was to see her run thru the park...

Seems so simple to an average family eh?

I wanted out. I wanted to get away from him...use a four letter word..grab madie and go.

Dont worry I did not do that..:) I mean HOW DARE HE tell me that madie will not someday DO IT! Tells me I need to focus on her cognitive development and not to worry so much about walking...

He examined her and checked her reflexes and her reaction to small balance things...like putting arms out to catch herself when she falls over (which she does not) and bearing weight on her feet...etc etc...it was just like they do at the pediatrician wellness exams when they lift them by their arms etc...checking for this and that.

I dunno....I just dont know...

I wanted to curse the seizures and the seizure drugs and the doctors and the WORLD...I was so at a loss..feeling so helpless..

I wish there was a magic something for all our kids...but folks...I just have no clue.

Madie is down for her nap now and I just feel so drained...I am ready to relax tonight and then this weekend we are going to grandma and grampas beach cottage to hang out for an overnight -er...relax, have some good food and wine....sounds like a plan after this stinkin week!

Well if its not genetics than WHAT IS IT?? where to next?

Still workin on getting the feeding therapy underway... Still weighing 21 pounds 11 ounces..And Adaptive stroller has not come yet....hmm

Hug mamas.

Keep those prayers going...(I feeeel the vibe! lawdy lawdy!)Arise and walk my child!!!(lol)

What a week.....whew. and is it spring yet?

"I don't know about this mom"

Ok been a cookey mood adding songs that I can kinda bob my head to when I hear them...LOL

Its already been a whirlwind of a week... I cannot wait till spring when I can go oustide and tend to my messy garden and take madie for walks in the neighborhood and the trails.....:( :( Wouldnt a cruise be SO fun right now?? ever been on one?? SO FUN!

Anyhooooo..

I just read Austins blog and his mom tells us that Austin has days that are great and he is doing well and she goes into thinking that MAYBE this is it! then get all excited only to have a day where his poor lil body gets zapped....

I GO THRU THE SAME THING WITH MADIE NOW!! I tell ya... I was brought to tears tonight at how stinkin cute she was tonight...rolly polly all over the blanket...then at 745ish...ZAP. she is sleeping now...JUST like that..there was no reason for her to be tired so early...she took a great nap this afternoon...usually she is up till 9...and up between 630-730... I wish I knew what makes our little ones go days without seizure only to have a random day to have strong seizures...Its soooo frustrating! Like the seizures are trying to erase all the good days..making us start from square one again..."oh...just when she was rolling well" or maybe "oh just when I saw her open her mouth for her spoon" I used to cry and cry and cry..saying to myself that the seizures would "erase" madie... and that we would have a child who knew nothing of the world when her seizures finally stopped...

*sigh*

This week inparticular I just hate this! I just want to erase the word seizure from my vocabulary! DO you know that feeling when you just want to scream "where is my child's chance without seizures??!!" WHEN are we going to let madie grow and develop!?? And then...you have a death in the family! AND then you have like 2 doctors appointments!!

GI appointment today went well..the doc was really nice...she said she is going to get the ball rolling with her Boost Shakes...its been over a month since we requested those things...I almost forgot to mention them!

We kinda just talked and I gave her info on madie and how we have been doing and how we are in a stuck spot with her meds...since she just is not getting enough calories! She said she is NOT leaning twards a G-tube...and wants to give Madie a chance..she is also going to hopefully get goin with her feeding therapy/OT/Speech therapy....Dunno what they call it...NOT a feeding team thing...(which have NOT been covered by our insurance!)

I dunno folks..

Yesterday we were out in Long Island for my uncles funeral...eeeeveryone was there and there were tons of tears and I gave myself credit for going to the coffin and saying a word to him...it was scary as heck! He looked unreal....like wax.

On that note....I am tired...I need some good sleep tonight...going to watch The Office and snooze!

keep those prayers goin folks.... we ALLLLL Need em!

I will keep you posted on how things go next week with EEG...we had to re-schedule due to the Ft of snow we got! eek!

((hugs))

just checking in :)

SOOO how are your seizures today???

Just when we have begun to see grass the snow is back! full force today....Madie and I are just hanging out in the nice warm house...watching snow..:)

ALOT of snow!! Will let you know what the total is when its EVER stops! eeek!!

Today was supposed to be madie's EEG but my mother in law and I decided the snowmobile was not the safest way to get to Hartford... soooo i called and they were super nice about it...saying that alot of people had to cancell today and they will call me tomorrow morning..."we'll get Madison in hun" she says...haha

I may opt to go next week...and get her blood work done THIS week at least..eh? Its just a whirlwind week....I am most nervous about her genetics appointment on friday....I will also keep you posted on that...

I ALSO have to drive to Long Island for my dear Uncles Funeral...my fathers brother lost his battle with an inoperable brain tumor...we hear now that 2 years ago when they told him of this the doctors gave him a year...well he made it twice that. Passing in the ambulance with my Aunt by his side.... Has not sunk in yet...I am still numb. he will be dearly missed...

As for us...well...hoping that we can have a relaxing evening tonight and that hubby drives safely home from work...he just LOVES snow and sees it as a "misson" to get to work in the snow....oiy....

Well I hear a small bird chirping for her bottle...:)

Still battling it out with insurance to cover her feeding therapy...they say its Medically unnecessary...