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I have so many thoughts going thru my mind I just dont know where to begin...I type and eat cereal at the same time so bear with me :)
Twitches and Jerks...persistent lil boogers...teething and sleepiness..and Clonopin..er Klonopin err Cloza-PAM...however you say or spell it...
I want to so badly get her off this drug...Doctor explained that you may see some seizures and I guess the plan was to just reduce it..I switched the dose to the AM and ya try to say that well..she has been on the SAME meds for many months and why would she be so extra tired NOW....Teething?? For sure. She breaks into screams sometimes...shoving a finger into the back of her mouth..choking on her own saliva..MEDS?? Well it IS a different FORM of Clonopin...these disolvable tabs not the yellow ones I am used to...
I seriously do not know what to do...I fear that not only do the seizures effect her growth and development but the meds as well..Its so frustrating to watch her try so hard to get up and move and she still has yet to do so! people are squealing with delight when they see her roll...Well she has been doing that for a long time....BUT NOT say...in JAN...I have no pictures of her "break dancing" She still only has occasional motivation to balance her sit..usually fighting me when I want to try to get her too...her lil arms will at times stop her from falling forward but she will freely fall back...always pushing back...
SO we are coming somewhere...
Sometimes I just dont know what to do with her...I guess I am saying that I just run out of things to do.... I am not a 24 hour therapist.....I feel the weight of madies future weighing me down...I can barely lift a foot....
I JUST.... Without feeling guilty that I am not stimulating her enough or putting her in her stander enough.....Would all these things help madie become that little trouble maker that I so desperately want??
I am a real creative person...love love crafts and photography and diggin in the garden...and madie just cant do these things...and it breaks my heart in two...have you seen those ADORABLE gardening boots and shovels for kids at target?? Oh to see madie stomping around in the mud....:( There goes that crack in my heart getting bigger.
No Gigantic package of a Stroller yet....I hope for the next couple weeks but that is what I hear a week ago...That's another story.
We are also meeting with the school folks next month to discuss PRE-School....PreeeeSchool??? madie is a baby! Eh?? Ok so PT explained it as 3 days a week for 3 hours per day...We shall see....ehhhh I am scared to death but also know that they can do things and push her better than I can.... She is going to HATE IT....
ANYhoooooo I guess I am done...I have really run out of organized thoughts..
SO my final thoughts" Just go back to the old dose of Clonopin and have the med...or keep up on the wein...? I want to call the Neurologist but I feel like I will get the same answer...they dont really know either!! "just get her on more pills" GAH! Pills Pills Pills....
Madie is stuck I gotta go...oiy little one. keep your sparkle my love.
Mamas lil snuggle bug..oh sure calm down now when I wrap you up in your blankee with mama.. <3
1 comment:
Ok so a few things for ya! Have you taken her to see a dentist yet? If not I would be doing so to see if it indeed is teething. How old is she? Or when will she be turning 3? I will tell ya that it was very hard for me to put Cameran in the special needs preschool. 1 because she cant talk and tell me if something happened but also because I felt as though my momma job was being ripped from me. I dont see how working parents do it, having someone else raise your child.....ack I just couldnt do it! So in the beginning I just started her out at the school 2 days a week for 2 months. I pushed for it to be sooner but paper work held us up. But I tell ya by the 2nd week I was ready for her to go full time because I saw such hige improvements with her in that short time. SHE LOVED IT!!!! Of course it killed me the first few times but it got lots easier. For the special needs program it only lasts 4 hours a day 5 days a week so not bad at all. They will work with her one on one alot and that will get her a loooong way. And her being around other kids is a huge motivator! Cameran has come leaps and bounds I tell ya!!!!!! She has 3 teachers in her room at all times and there are 7 kids so lots of help. Not to mention she gets pulled out 3 times a week for her one on one therapies and once a week a combo class in speech for more motivation. Lots to look forward to hun, scary I know but it helps so much.
Meds.....ugggh you know how I feel about those. She has got to come off something. Infact I'm calling Cami's neuro today to start her Depakote wean. We where suppose to wait till July but we are ready and pushing for it now, its been 2 years since shes had seizures. Its time!!!!!!
Hugs to ya!
Karen
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