Wednesday, July 1, 2009

A house for Reagan

Sleep has been good. There's no explanation other than the Clobazam is a contributing factor. The last 3 nights in a row she only woke once, a HUGE improvement from previous days/months. Last night she woke up and Daddy got up with her, he has a tendency to just lay beside her on the sofa and then they fall back to sleep together. Then he gets up and goes back to bed. Well, apparently he left her sleeping on her side (normally she's flat on her back) and the pillow, that is normally wedged up under her pillow to keep it in a concave position, slipped out. So at 6:30am we woke up and heard Reagan making noises, Mike got up and found her laying on her stomach on the floor. She had rolled off the sofa and onto the floor. The thing is, Reagan doesn't roll. She just doesn't move around enough (or bend her legs) to get the momentum needed to propel herself over. So typically there's no worry in putting her to sleep on the sofa. But last night everything came together and it was the perfect storm. No clue when it happened. Maybe right then, or maybe sometime early morning, but I guess she didn't hurt herself because there was no crying involved. It still scares me though. I can hardly wait to get her off the sofa and back into her own room and bed! Speaking of, we made an offer on a house. We looked at it this weekend and I immediately liked it (Mike was on the fence). First and foremost, it has the PERFECT space for a therapy room for Reagan. It's HUGE. It's a gameroom right off the living room, and it's equal in size. It's a one story in an older golf course neighborhood in the Sugarland area (about 20 min from where we live now), and right down the road from Mike's work. It backs up to a greenbelt, so no backyard neighbors, and it has a gorgeous green yard (that needs to be fenced in). There are some things that need to be upgraded (specifically the master bathroom) but nothing we can't live with for a little while. I really like the space. I'm not happy about it being so far away from my mom, which means less time Reagan gets to spend with her Grandma, but it's more house for much less money when compared to the other areas we're considering. I wasn't really thinking we would find something we liked so quickly, I figured we would have a chance to save up some money while living with my mom. But I guess if it's the right house for us, we'll get it. If not, we'll keep looking. We want to get out of this house and into a house filled with good memories. Please keep this in your prayers. Today was a busy day with three different therapies. Reagan is pooped. She started getting a little irritable this afternoon, but overall she had a pretty good day. Now she's sleeping peacefully on the sofa...hopefully that's where she'll stay!


Dawn said...

I just came across your blog and I wanted to say hi. My name is Dawn and my daughter, Taylor, has a rare chromosome syndrome as well as Lennox-Gastaut seizure disorder.

I looked at your list of medicines that you've tried for Reagan, and we've tried them all as well as the VNS and a corpus callosotomy. She still has hundreds of seizures a day.

We still hold out hope of one day finding something that will let her have a seizure free day.

I will keep you and your family in my thoughts and prayers.


Jamie said...

This is so exciting! I try to imagine the lay out of your home and how you have to go upstairs to Reagans room...raised ranch?? Our house techically has the master bath downstairs but we use the upstairs bedroom for us..and the master bedroom for guests.. Congrats on the new home! Have a wondefull weekend...:)!

jennifer said...

good luck in getting the house!