Wednesday, October 7, 2009
OMG where has this appetite come from Miss madison?? Ohhhh I wont complain! 2 jars of food and 3 bottles! now ok ok sounds like a little but to get this kid to eat her baby food has been a loooong battle..and it still continues..she cannot comprehend what to do with a cracker or puff...or feed herself...or chew her food properly..so its all Pure' now..
She has been enjoying Oatmeal Cereal mixed with whole milk and peaches. and her chicken and rice dinner...and sweet potatoes...and uh..Turkey Rice dinner as well. :)!
With this added food can I just add that the constipation barrier has been busted! This kid pooped like 4 times yesterday!! never more than one a day for this kid!
We have finally tapped out of our huge supply of Pediasure we got in the mail awhile back and are back to buying shakes...Uuuuugh cant say I missed that 9.99 price tag..still 3 cans of DUOCAL left so we have some time before we shell out the 31.49 per can for that...uuugh.
She wined and wined yesterday and each time I fed her and she ate and was happy..she was HUNGRY! Its been a week off her Zonegran which I knew on a high dose took away her appettite alot..maybe getting her off of that helped?
Every time we get her OFF a drug something good happens! Clonopin? she was sitting! Zonegran? she was eating!
Of course we all hope for compleatly FREE of drugs but the sad truth is that madie has seizures that are hard to contoll...getting her OFF meds is just not in the picture! We just work on having her on as FEW as we can WITH seizure CONTROLL..
Oh ya just never know...Madie does things on HER terms...when SHE is ready..
Well maybe just maybe the banzel is increasing her appetite?? dunno...
She is still going about 20 drops a day...that I can count anyhoo! whew...they dont seem to slow her down..she is up up up. But the meds still make her hazy eyed at times and I hate to see that! I dont see her anymore tired than she was before banzel...so I think if anything is making her sleepy its the depakote... Nuero Nurse says we can switch her to the Depakote Sprinkles that are more of a slow release..intead of the liquid that kinda just kicks in fast..dunno what I wish on that one..hmm Cmon Banzel...cmon...
In my past experience there was no drug that stopped Madies Infantile Spasms...it just one day changed....like literally one day her seizures changed...
I cannot tell you when she began her drops again...dunno...a few months ago at least. Its so frustrating!!!! Just GO! Just GO AWAY! Give our kids chances at seizure freedom! Banzel is Drug number 8 for us. Depakote was the drug that really gave madie her BIG BAD seizure freedom no doubt...but it always seems as if ya get rid of one type and another comes...with this diagnois of a "modified Infantile Spasm" whatever the frick THAT means....
Nurse said it has the "look of a spasm" but does not show the Hyp waves on the EEG..
My hopes for madie are never diminished. Its what keeps me going!
IN OTHER NEWS!
OMG Preeeeeeschool! SOON!!! Big PPT meeting (Planning and Placement Team meeting) to get madies Individualized Education Program..or IEP. Big meeting with her Birth to Three Therapists there as well...we will sit with her new teachers and therapists and they will tell us how madies day will be...what goals they have for her as well. Exciting but SCARY! madie is so tiney compared to the other kiddies in the room! Oh and ALLL the kids have their little LL. bean personalized backpacks..LOL allll lined up on their hooks. madie has a hook waiting for her too..it was so cute!
We also say bye to our beloved Birth to Three therapists...:(!! I am hoping to be in touch with them as madie grows they have been amazing and alllways love madie with hugs and kisses and cool new toys! They have done so much for us..from alerting us of Madies Infantile Spasms to getting us a Noisy Box and an Adaptive Stroller!! Im so going to cry! Out of sadness and happiness...its such a huge step for madie adn for ME! My lil coddled special needs baby girl...always treated with extra care and protectiveness..as my husband would word it: SPOILED! HA!
No denying the spoiling on my part!
Its a new step to madie becoming a BIG GIRL!
And with all this eating she is bound to get there at least physically!
Ill keep ya posted on anything new and exciting...
Fall is in the air and we go to get our Pumpkins soon! I love carving up pumpkins and hubby loves to bring all the roasted seeds to the office :)
Posted by Jamie at 8:49 AM