Hannah is sleeping peacefully right now. The combination of Valium-Methadone-Klonopin-Baclofen-Tegretol and chloral hydrate when needed is starting to work to keep her comfortable. We are down to using the chloral just a few times a day now instead of every 4 hours on the dot. We may need to up her valium a bit […]
[Continue reading...]Continuing to Advocate
25 Nov by
We were given an opportunity a couple of days ago to share Hannah’s story with our local NBC news station and why it is so dang important that there is more research into rare diseases like Gaucher’s disease. Even though I wasn’t in a good mental place to be interviewed, I knew it was […]
[Continue reading...]Giving Thanks
25 Nov by
Made it through another holiday. And yes, that is exactly how I feel right now. It is almost like we can cross that page off the calendar and take a breath. We had a delicious dinner with family here at our house. I loved having Ethan, Abby, and their cousins all running around the living […]
[Continue reading...]Waiting for “Something”
23 Nov by
I have heard from quite a few friends over the past few weeks that I need to take better care of myself. Truth is, I don’t do a very good job of it, especially now. I’m completely exhausted… physically, but mostly emotionally. When Daddy and I switch at 5 am, I usually take my melatonin […]
[Continue reading...]Hannah’s Plan
21 Nov by
Hannah’s breathing is more shallow tonight. Her respirations are much quicker, and it is almost as if she is only taking quick little in-out breaths now. We can barely see her chest move up and down when I am a few feet away. Yet, what is really strange, her oxygenation is in the low […]
[Continue reading...]Trigger photo
20 Nov by
I was talking to a friend last night about everything that was going on, and he made the comment that I sounded pretty together on the phone. Being that I hadn’t spoken to him for a few months, I took that to mean he was surprised I wasn’t crying on the phone or being […]
[Continue reading...]
Latest Comments