Please watch this video from CDO (Chromsome Deletion Outreach) Hannah is on this one
http://www.youtube.com/watch?v=gNA0-aSyTYc

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

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check our their blog to read everyone else's "Hi/Lo" posts.

Happy New Year 09 \o/

Taylor turned 4 months old on New Years Day...every day she is doing more and more...her newest thing is kind of a giggly squeal, she has found her voice...she also likes to help hold her bottle but the problem is she likes to pull it in and out...she is too nosey to eat when she is out somewhere, afraid she is going to miss something :)
she goes for her 4month check up this thurs, so it will be interesting to see how much she has grown.
enjoy the pics