Our Day At Scottish Rite

We had a great and very full day yesterday at Scottish Rite. We had an AM appointment with the neurologist and a PM appointment with the urologist.

At the neurology appointment we were able to report that it has been almost a year since Lizzie's last seizure. (The last one was last April). He said that's great, but they like for their patients to be seizure free for two years before they start reducing the medication dose. He said that if you think about it, she is growing, but we are not increasing her dose, so it is kind of like it is reducing itself naturally in a way. It's really no problem to me for Lizzie to stay on her anti-seizure medication. She only takes one, and she doesn't seem to have any side effects from it.

At the urologist appointment, he said that her kidney ultrasound looked fine. Praise the Lord! (We had that ultrasound two weeks ago.) I was also able to discuss Lizzie's cath-ing schedule. We were cath-ing her every three waking hours, and letting her go for an eight hour stretch at night. The night time thing has been a bit of a trick because she sleeps for twelve solid hours. So, I've been sneaking into her room late at night to cath her. She sleeps on her tummy, so I wear a headlamp and cath her upside down. Am I good, or what?! Anyway, we have been getting really low urine outputs at her first morning cath, so the doctor said to try cathing her just before bed and not again until morning. He said that if her outputs were still low, we could stop doing the middle of the night cath. Last night was our first night to try this, and the output was low the next morning! Hurray! No more late nights for me, unless I want to. It's not a requirement anymore!

On a somewhat related note, we are experimenting with not running Lizzie's feeding pump at night. (Another liberating thing for me.) If she eats well enough during the day, there is really no need to run it at night. However, the only way to find out if she is eating enough during the day is to stop the pump feeds at night and closely monitor her weight. So for so good, and this seems to have improved her daytime appetite. We've only been doing this for about a week now, so I will keep you posted.

Well, it's late, and I am up just for me. : ) I'm off to bed!