seizures and a vent

This is a pic of Hannah and her raven buddy Barbara taken at one of the playoff games.

Hannah's seizures seem to be a little more intense lately. I hate seizures. Hannah has had them since she was a baby. Now she has been on almost every seizure med or variation of it except one called felbatol. That one has a lot of side affects that I don't like, such as aplastic anemia. I am still praying about that one.
I think I just need to vent a little Hannah has medical assistance because our income is not counted, it's a waiver. I know times are tough everywhere but now it's hitting medicade. They have cut back on how much they pay per diaper so now after all these years we have all of a sudden had to go from super absorbent overnight type diapers to thin little diapers that are thinner than a chux. They are not even half the weight of what she was using...what is next, are they going to take away our nursing hours? Now, we have to change her and her clothes more often. For the first time this week, Hannah smiled when I put Taylor in her lap. Hannah doesn't smile very often like she used to. There were a lot of things she did before seizures and meds took so much out of her. Taylor loves laying at the end of Hannah's bed when I do things for Hannah...she plays with her Hannah's stuffed animals.

Cathing Hannah's urine is becoming routine for me. but she looks a little swollen right now. we are still getting anywhere from 50 to 300 cc's each time, even after a wet diaper. I need to call urology to find out what is next. I keep forgetting to call them and a few other drs for appts.

Hannah is still having thick secretions and some desats when she is off her vent. But, they usually go back up on her own. We are thankful for our nurses, some have been getting sick but so far, we have been ok.

I realize now how much I did get done when it was just me and hannah because now, with Hannah and Taylor, I don't get anything done. but I wouldn't change it for the world. I am so blessed to be able to take care of Taylor and watch her change everyday. she is growing too fast and I can't clean, etc when she is older I am selfish and don't want my grandaughter going to day care. I do pray that becky can eventually stay home with Taylor but will continue to enjoy it for now.

Chuck has been traveling a lot lately for work. he will be gone again this week. Pray for him as he travels. He has been going to the really cold places too!

joan