Tub Tubs and new meds.

Miss tara madies therapist found us this seat for the tub...runs pretty cheap little ring seat but the front opens and I can sit her in without a struggle and snap her right in.
She cried when I took her out..LOL

Well I was hoping for some humble opinions about my last post..that preschool visit was rough for sure..
I may sound hokey but i want to cry looking at these pictures...to me she is the most beautyful little girl..she is so happy in her new seat with so much more room for her legs to extend and she touches the water and sticks her little tounge out for my pictures..I absolutly love these moments.

.........we begin Banzel tomorrow...I do not want to give her Banzel...in my heart I am saying that I need to TRY banzel..but I am aslo so scared she will be so drugged up and her eyes will be hazy all day..:( I will NOT let meds take her sparkle...if she is too drugged I STOP it no questions asked.

100mg (half a pill) in the Am and Pm.. 200mg per day. to begin.
These dang drop seizures are just bad ...there was no denying that her EEG was bad..I JUST DONT KNOW WHAT TO DO!
Zonegran wein was sucessfull as well....she is on one drug for ONE day! woo hoo!
Oh my baby angel...I feel sad tonight...and anxious...Sad for my Madie and more drugs but about my brother in law breaking up with his girlfriend of 5 years whom we have all grown to love as a member of our family....and baked the most amazing cakes!Missing hubby as well...but also numb to his travels...a week and a half he has been away...I keep on moving..somehow.
Madie was up at 230 am last night for reasons unknown and crying...hope she sleeps tonight..she crashed at 730pm tonight.
Keep all the lil ones in your prayers...Reagan you have a lovely new therapy room!!
Hugs mamas and Dads :)

A week for the weak.

Ive been wanting to blog for awhile but really just cant get my thoughts together..its an ADD thing..lol. Seriously. Im just WIPED OUT this week! Husband FINALLY comes home today just in time for me to not slip off into a stress related coma!
WELL anyhooooo..I just read Austins Blog..I cannot be more on the same boat. Its so frustraiting with doctors who just DONT KNOW! Its really just a medication game.As far as surgery well if he is not a candiate then he is not...dunno what to say on that. we never really persued that option for madie..she does however hold that one arn at times JUST like Austin does! I feel like with Madie we rid ourselves of ONE type of seizure and ANOTHER comes...Ok so Spasms and Tonic Clonics were devisating! Horrible as we alll know..and when we finally got rid of those we are STILL facing this stupid Jerk like seizure that knocks my big girl sitter down :( Sometimes they are bad..Never in a cluster but they can come say...oh 3 in 10 minutes or like 5 while I am trying to feed her...
I was calling Nuero folks last week and heard back yesterday and since I have a pair of coordless phones that float around the house constantly I was unable to get the call! I called back right away only to find everyone was on lunch...so I called back about 2 and have not heard back yet..
The message that was left on my phone was to increase her Zonegran by double. 100mg at night. (thud in the background..oo she is OK) she is on 50mg now. OK Ok I was kinda frustratied well..upset because there was talk of getting her OFF this med! Oh no no no no no no Im not increasing this! cmon! THIS was a med that took her apettite and made it SO FUSSY...she was refusing to eat so much...just plain not hungry really. My 3 year old is 26 pounds!! 26! Ohhhh no no more Zonegran...ZONE-gran puts her in a haze too at high dose...UGH!
She explained that she will call the pharmacy and change the prescription so I can go pick it up...
Wait a sec!!?? Well I hope to hear back from them today.
OMG can I just tell about the preschool visit yesterday as well!?
Ok so we were going to do an OT session in the school classroom with all the kids there and also get a feel for what her room is like.
I meet her therapist in the lobby and we sign in.
(jaws theme)
We get into a room running a muck of lil preschoolers. teachers handing out their names on tags that they can hang in ther different play areas and as they call the names each kid gets the tag and they ask "where are you going to play joseph?" and he says "Block Ar-we-uh" and scurrys off.
We are greeted by 3 very nice teachers who welcome madie and point out to the kids who really care less that there is a "new friend" in the class..
Madie was the smallest kid there. she was so small compared to these kids!Seriously looking half the size! I sat her on the carpet and we just talked to her and showed her beanbags and eh...
I chatted with one teacher as her OT did her things...
I dont know what madie was taking in from this place. I hope someday alot more than winey and sleepyfaced...
We sat her in a little wooden chair with a strap and showed her some playdough. of course she is not going to reach out and grab it unless its a sheet of krinkle paper or one of her toy links but we mushed her hand in the odd smelling stuff and she hated it. cryed.
When playdough was done after like 5 minutes(hey they only have 2 and half hours in a day! LOl) the other little boy at the table promtly collected all the dough and put it back into the container and even washed his hands after. Im thinking "geeze he sure likes organization and cleanlienss" then I thought maybe he will grow up gay.
*sigh*
I was really left without words when I sat outside on the brick wall with madies OT as she wrote up her report.. "Its a school for normal kids" I say. "If I had all the money in the world Id send her to a private school..the best you can get for special needs kids" I wanted to cry but kept my cool...(literally, it was boiling hot in that room) I JUST dont want my baby girl to be judged....Ok so she IS overprotected. NO DOUBT I have a coddled kid! OK I said it! I was also feeling a certain unfairness..WHY ME? errr WHY MADIE!? I just want her to run and play and get over this damn seizure crap and bad eatinig and...and....Just Raise a little Girl!!
She is the sweetest most beautyfull little girl in my eyes. hey no offense folks. LOL
All those Nuerologists need to have kids with hard to controll seizures...and THEN we can see some REAL progress!
"just sayin"
On the upside she did enjoy music as i bounced her on my knee and she even giggled. I had no toys from home to show how she can really hold things...I tried to get someting in the room for her but they are all REAL toys not the baby-like collections I have at home....
Everyone is telling me not to worry and to just let the school do their thing with madie and watch her GROW! (insert pictures of weeds in my backyard)
Well anyhoo....I guess I am spent. Literally. I did some shopping this week....Spent alot at American Eagle for Miles COusin(and myself) whos has a b-day this weekend. Her clothes are eaither horribly oversized or horribly too small...good thing its winter soon and she can retire the booty shorts..! eek.Feeling that pang of guilt and may just return my sweatshirt I bought.
Saturday is a big tag sale at my mother in laws house I am shocked she is allowing her stuff to get sold. now when I tell ya she has ALOT of stuff...I am not exaggerating! ITS TIME!
I will also have my own little table of stuff...:) have to go out today and get some Dot stickers for the prices.
In the meantime.....Hubby? Well she is ALLLLLL YOURS! XO
Hugs mamas
PS Ok I know long enough blog already....ugh..
JUST got off phone with "nurse deb" from Nuero... I told her that I do not want to go up on Zonegran and that I am not game for this...
Well she tells me that Madies EEG was not good...well DUH and that she is not having Infantile Spasms but a "modified version" of them...WTF??
Gawd folks I am so spent. Spasms or no Spasms? Saying that the drugs have not effected her growth and development that her brain is just not wired right...WELL DUH and (whatever about the drugs) Saying that BANZEL is more on the market for these types of seizures that Madison is having....and that we can get her off her Zonegran and get her on a low dose of Banzel.
UUUUGH!
Denying any side effects other than sleepyness....well I told her that madie is beginning her school soon and I really would like her to NOT be a drugged up kid!
Ill keep ya posted. Im spent. Looking forward to weekend now....Its gorgeous outside today! on a better note.

Went for a walk with Madie and sat her right in the grass...she couldnt get enough of the feel of the grass in her hands...pulling it and pulling it and moving her legs in the grass...LOL cutest ever.
Not much to report today...gearing up for a relaxing night and a BBQ on Sunday.
No Blood work results back yet...hopefully liver will come back good as it did last time we checked..:)
Hope everyone has a great weekend.

EEG's comfort soup and preschool..yup all in one!

My little baby with all her fingers and toes..perfect baby.
She still is in our eyes.
Madie did some great work with her PT yesterday bearing all her weight into her legs by her noisy box and at one point even put an arm out to hold onto the side! of course being held with support but she sure seemed proud of herself. She is certainly growing...getting heavy on this mamas back as she just loves to be carried. loved the perspective of being UP UP with mama as i walk thru the house with her talking to her about what I am doing..lol I hope all my words are sinking in! I try to talk to her alot and let her know what I am doing etc etc. Hmmm neva know.
Next week we are going to Cherry Brook Elm with Miss Tara. madies OT to have a session in the school and meet her new OT for the school year...I am kinda excited but sad at the same time to be saying bye to our Birth To Three Therapists..:( 2 YEARS we have been working with them!
Ill let ya know how that goes :)
We will also be back at the school mid October to get alll the paperwork going and get a pcaket of info on what madie needs for her days..and a good idea of what madies day will be like with her therapys and play times...Hubby and I will go to that one hopefully :)
Aside from school commimg soon...I put a call into the Neuro and asked if there is anything we are doing different with her meds..since EEG still showed seizure activity...not horrible but still there. UUUUUUGH.
I know there was talk to weing her Zonegran but I have not begun that yet with worrys of things taking a turn for the worse...I wait for doctors orders. or maybe a better EEG...
*sigh* Oh my madie...what to do what to do...
Cant wait to see what you will do next my little friend.
Hope everyone is well and hangin in there. supposed to be great weather here in CT..hope we all can just open our windows and let the breeze in! Fall is in the air!
((hugs))
Me.
I just love comfort soup.
Sausage Soup
Mmmmm
Fry up on pack of sweet italian sausage. till almost cooked.
In a pot add 1 can of Hunts diced Tomatoes that are garlic oregano basil flavor
2 cans of beef broth or half a large can
1-2 Onions chopped.
2 cloves of garlic chopped or minced
2 1/2 cups of H2O
1-2 small heads of brocolli (I buy the crowns)
Add all ingredients in a pot and simmer till things are cooked and sausage is cooked fully...can cut sausgae into smaller pices as well
Pour over some Penne Pasta. DO NOT add pasta to the soup it will become real mushy.
Comfort Food. :P

Hyp Hyp HooooooRAY!

EEG was still abnormal but no Hypsarrhythmia.

It only took em 2 weeks.
Abnormal in what way? Well she still "jerks" and those do show up.
But Jesus, talk about nerve racking! I do not know what we will be instructed to do as far as meds go now..I have been just too distracted to go to blood work which I will promptly do on MONDAY!! then when we see where her Depakene levels are we can go from there. No word on weining off Zonegran yet...patience patience.
Wel speaking of patience..I got a grumpy hungry kid nearby who needs to be fed..
I feel like making a cake!! Mmmmmm Apple Cake.

Ill blog after the weekend...maybe going to cottage for a night to get away...although it may be rainy and yuck outside. :(
Then come Monday Hubby is GLUED to the football game. LOL
Ok ok Ok Comming Madie!
:)

Picture. (LOL)

LOL!! sitting before I can grab her diaper!
Ill post in a few days. Gorgeous Day today!! Love it Love it!
No word on EEG now..got Hubby in on the calling action now
and OMG love love Karens new baby pictures!!!
(((HUGS)))
me

To say the beach was not a wonderful place this weekend would be an understatement! We stayed on the beach this afternoon with grandma for at least an hour. The wind was whipping everything everywhere and the few kids we saw were all saying to their parents that they were chilly but kept on swimming in that water! A couple of boys actually took their wagon into the waves..capsizing it and laughing and trying to get each one of them inside with no luck....lol I just had to laugh.

Weather was PERFECT! Hubby was complaining that he was not feeling well on Saturday but I kinda just disregarded his complaints and said WE ARE GOING! and I am glad we did!
Night one was rough stuff...madison would just NOT sleep...she was either wining of just happily sitting in her porta crib...we got no sleep.

ANYHOOOOO....LOL
CONSTIPATION is an understatement for madie lately...trying to push her poopy out and crying with still a clean diaper....
Came home today and gave her some Karo Syrup in her bah bah and so far in the past 3 hours we have had 3 hard poops...she screams and poops...poor baby...hopefully she is done after number 3...with the number 2's....huh huh..
I think maybe some of her wining was due to tummy troubles..gotta start getting those Pears down the tum tum and get some prune juicer mixed in with that pediasure! MAN it stunk!! In more ways that one!!

SO a new week we embark on...OT tomorrow AM and I am off to run errands and hopefully get in to visit madies great g-ma who is in a re-hab center after she was diagnosed with Lyme Disease of ALL THINGS...and its left her literally weak in the knees...so she is gaining her strength and will be home soon...I will prepare a yummy dinner when she returns :)
STILLLL going to be waiting on EEG...but try not to think about it till the last minute.
Time for bed.
hugs mamas
ME

Labor Day weekend

Well I called and I called and looks like we will wait thru the weekend for EEG results..they do not have the results at this time...nearly a week later...Maybe that is good? maybe its bad?
Dunno.
Tomorrow we head out to the cottage for some Relaxation...
Madie has been quite a pill today...winey winey winey...NO NAPS and winey some more..she has been eating just fine but no naps...Is there an age when kids just stop taking naps? This kid just goes...alllways sitting and sitting. cries when I lay her down and gets right up to her sit.
This mama is tired!
Well I hope everyone has a great weekend and enjoys the weather..(hopefully not too hot for the texans..)
Send a big congrats to Cami's mom who has welcomed a baby girl!! (I hope I did not steal her blog thunder...lol) Im so excited for her!!
Hugs mamas.
Me

More Waiting...

true blogzilly style..lol
NO word from the EEG yet...I was the pushy mom and called yesterday about 1130am and was told the doctor had not even read it yet...
OK OK so test was done Monday I guess I need to give it some time..
FOR NOW I care not to think about anything that is NOT POSITIVE!!
Madisons great grandma is flying in tonight and we go to the families house to have dinner and some "sodas" ;) Hopefully weather pending..if it stays gorgeous and cool outside madie and i will head to cottage on Friday morning or thursday for a long weekend :)
Hubby has been working like a crazy man lately and it makes for looooong days for this mama...just jonesin for a dose of the crazy family :)
I will certainly keep everyone posted on what I hear from Neurology even if means I post twice today...still early as I type....830am...
Madison continues to be her usual self..big girl sitter I cannot be more proud of her new moves..although a little tough on the head sometimes...LOL but gets right back up and sits some more..
keep the prayers going for sweet little bennett and his recovery :)
....and where is Austins mommy?
OH OH and Camis mom is MAYBE having her baby!! I have not seen her on our facebook chats!
Hugs
have a super fantastic delightfull weekend..(cue chinease music)