We seem to be in a holding pattern in many important areas in our life right now…
- New house closing and moving. It has been taking forever to get the bank that owns the new house to get the electricity turned on so we can get an inspection of the house! Hopefully they will do it by the end of this week. We are supposed to close mid-April, but we still have the right to refusal up to a few days after the inspection is completed. We just want to make sure everything is working before we get excited about moving!
- Overnight sleep study and EEG. Right now, Hannah’s body is still. No seizure activity at this moment, thank goodness. She still goes through spurts during the night where I notice some slight twitching, but until we get this test, we really don’t know what we are dealing with … subclinical seizures, sleep apnea, nothing? We have to wait until the flu season is far behind us because Hannah has to sleep in the hospital overnight, and we don’t want to expose her to any undue risk.
- Stander, chair, hell… We ordered the stander and chair back in the beginning of December 2010. We are no closer to getting them it feels like, especially the stander. Something about pre-authorization then special ordering to fit… All I know is that Hannah is continuing to lose tone, and we have very little to use to help her bear weight safely on her legs to build up her tone. Ugh! She doesn’t even try to get to a stand from the side of the ottoman anymore. Kills me to see this obvious progression.
- Make-A-Wish trip. Our first tentative dates are just one month away, so we have not been doing much planning or preparing just yet. Every day Ethan asks me if we get to go and goes through our Disney World Planner. Abby is more reserved and more aware of the “maybe” aspect of things. When Ethan asks her if she has picked her two rides she wants to go on for sure, she always answers, “We don’t know if we are going yet.” Hopefully we will hear one way or another this week.
- Klonopin level. Hannah’s movement disorders still have periods of being pretty significant, so we are waiting to see what her new Klonopin therapeutic level is. Last time, she was at 11 (with 30 being low-normal). We bumped up her Klonopin 0.5 mL three times a day, and her movement disorder definitely improved. I still thing she still may need another bump, but we want to see what her numbers show. She got bloodwork done last Thursday at her Cerezyme infusion, so it should be available any day.
I’m really excited about moving to our new house. The idea of being to really settle down is SO thrilling, you have no idea! Being able to paint the walls the colors we like, unpacking every single box, poking holes in the wall to hang up pictures, changing out fixtures to match “our style.” Most of all, just being HOME!
The thought of being in our new home and unpacked is making my heart race with excitement!
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