Wow. So much has happened since the last time I posted anything. It all seems surreal that it is April already. We have been on the rollercoaster with seizure meds again, attempting IVIG with no IV success - Megan looks like she has been beaten with a bat from all the sticks and blown veins - MRI's, reflux, DROOLING, DROOLING, DROOLING AND GAGGING, allergies!!! Time sure does fly when you are having fun. HaHa.
I think I know the drooling culprit - it is the clobozam she went on about 5 weeks ago. Great seizure control, but man the side effects are terrible. She is an aggressive, moody, little biter that drools. The plus is that she is so alert and smiling and laughing when she is not pissed off but very fidgety and doesn't sleep. The crying has become so much less too. We went from all day and horrible all nighters of crying to just a few hours a day in smaller increments. I thought I would lose my mind - not her fault but man does it wear you down and out of your rational mind. We tried robinul and Sal-tropene for the drooling. Both had the same effects - vomiting so we had to stop. Which means we are most likely going to have to stop the clobozam because of all of the saliva and choking. She could aspirate. Back to nuerology on Monday bright and early. She has also been nice and stiff on and off - but more bent if you know what I mean. Not as much as a 2x4. People look at me like I'm crazy when I call her things like that but I;m just rolling with it. I hear the more nicknames you have the more you are loved, which means she is reeeaaallllyyyy loved.
I am homemaking her formula now too - she is allergic to the corn syrup solids in the "hypoallergenic" Neocate - crazy,right? So rice milk and a vegan protein powder(with no soy, milk, gluten, casein or egg cause she is allergic to all) with some rice cereal, salt and some good old fashioned olive oil for fat. She lost 15% or better of her body weight while she was not tolerating food. She is a skinny string bean. Seeing her undressed makes me sad. And her face is so tiny too. Poor Meggy! But as always a trooper.
Scheduled for Sub Q IVIG now - coming soon along with our botox in her legs - hoping it will make her healthier, happier and more comforatble. Her quality of life affects all of us. It is part of the territory I guess. The boys take it in stride pretty well, as long as she is not screaming her brains out. Pat and I are like two passing ships with the crazy schedules of our own, the kids and of course Megan's agenda. Our anniversary is at the end of the month and Tim McGraw will be here in concert and Pat got tickets - he knows I love to see Tim. It will be great to get out together and enjoy a nite out of dodge.