We have been through quite a week with the seizures going up and down. Right now they are staying in the 15-30 range. We upped her Zonegran Friday night to another 25mg making a total of 125mg a day. We haven't seen any changes with her seizures so we called her Neuro today as requested and we are awaiting his reply as what do we do next. I'm pretty sure we are just going to go up on the Topamax as she can go up another 50mg making a total of 100mg a day. If you don't remember this is the med that we started in December that we have had so many problems with as far as her eating goes. It took us 8 weeks to finally get her to start taking foods again so we are hoping with this increase this doesn't happen yet again! But right now its either the harsh side effect meds or this so we are chosing this while we await her EEG in April. The Topamax is the one that she became seizure free on for 4.5 weeks so we are hoping for some good results! We are just so worried of the eating issues! She has her feeding classes(OT) every Thursday morn at 9:00am with "Special Kids" so hopefully we can stay on top of it! (See what they have us doing below)
On another note she had her 1st Physical Therapy on Tuesday and they will be now requesting her to be seen once a week. Her balance is off and they noticed she walks on the insides of her feet(puts all weight on her ankles and inwards) and drags her feet causing her feet to split and have caluses on her big toe and on the sides of that part of her feet. So they will be casting her feet there and sending off for the brace supports to fit down in her shoes to give her better ankle support. They think this is why she is so off balance. They will also be working with her climbing, kneeling,(doesn't do either) and her attention span for one item as she can't seem to stay focused on any one object. They say how do you keep up with her since she just walks everywhere and doesn't stay still -she did this while there with PT.(I just keep all the doors closed and let her rome around) but they say she just seems so overwhelmed by things that she doesn't know what to do but walk.. walk.. walk......She is a busy little girl thats for sure! Our homework is to show her to climb up and down stairs and let her walk on uneven surfaces to build up that tone. Our backyard is the perfect place for that but if only we could get some warm weather to be able to go out, doesn't feel much like Spring right now!!!
Ok now here is some pics of Cameran experiementing with foods, another homework assingment from her feeding OT. Messes drive me nuts but Cameran doesn't mind it so much. We are suppose to let her play in her food so she can get the feel of things and try different textures as she has a sensitivity in that area. Here she is playing in yogurt and graham crackers the goal is trying to get her to dip the cracker in the yogurt and eat off that. So far she doesn't understand it but with a little help from Mommy she is slowly starting to understand the concept. She is doing great feeding herself the fruit puffs which she LOVES....
Check out her face she really didn't know what to think... The yogurt was cold but will wake her little mouth up and we hope she will soon start talking/babbling more! They told us to try her on Lemon Ice that it should really Wake her mouth up...I'm sure with a sour face too! ;-0
*I will be adding some more photos and info but this site is not working right so I'll try again later!!!!