Thursday, October 15, 2009
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??
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..
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!
Posted by Jamie at 9:56 AM