Camerans seziures have been all over the place this past week, going up and down! Her seizures have been staying in the 18-27 range and having one day of 33 and then back down to 19 then 11. Its just crazy how they are on different days with no rhyme or reason to it all.
Well since the seizures weren't changing her Neuro decide to go ahead and continue with the weaning of her Vigabtrin that we had started before and up her Topamax. We just saw the peak of 33 seizures about 4 days into the wean then it settled back out weird how it does that everytime we wean one. We always get one high peak day then it settles back out. So we are going very slow on the wean, down half a pack every week to make sure she tolerates it well. Right now she is on 1/2 pack 2xs a day. We are up to 200mg of Topamax right now it really seemed to help yesterday when she had just 11. We hope and pray that they stay down.
As far as her BP goes it has been staying in the same area this week it was 100/60. Last week it was 100/58 so pretty much the same and no worries in that area. Her glueclose has been great this week it was 85 and last week it was 116. Weight is the same from last week 28.1 pounds which was suprising since she is so chubby. It must just be feeling in all the places that wasn't chubby as she is very round like a little butter ball, so squishy! I love those round chubby tub cheeks its adorable. Cameran really cracks me up when she eats. As you can tell in some of these pictures that she eats with her eyes closed. I guess she is trying to savor every bite, I had to give her a snack just while she waited for supper to cook she was hitting my legs and fussing for food. She just can't get enough food or milk. She drinks roughly 60-70 ounces of milk a day and eats three main meals and a snack in between those meals.
Here's Caleb rinsing Cam off, she loves the water and he loves to dump it on her, she doesn't mind it a bit. In fact if she hears the bath tub turn on she will go to the door and start banging on it and trying to twist the door knob saying dadadadada! Thats her word for everything right now! She looks so BIG here.
Cameran goes back to the Neuro on October 13th. Until then he says we will give the ACTH another week and if no change we will begin the wean, that will take about a month. Its been 4 weeks now and we have seen no change in her seizures. But we are still hoping!