Wednesday, October 20: Update

Things should be settling down again in the next two weeks once we’ve transitioned to the new home, and I’ll be more diligent at making posts again. For the time being, however, the blog is getting shorted on attention. It’s odd to love back over the last five days since we closed: a lot has happened.


I’ll start with Claire. Because of the Friday closing, Claire didn’t have her normal horse therapy session. She resumed on Monday with Tiffany as a saddlemate again. Claire improves with each successive lesson. Claire showed us just how much stronger her trunk is on Monday: Claire held her body upright with little support and sat back in the saddle rather than flop forward. It’s fun to watch her focus when she’s on the horse: her pupils close down and her eyes fixate. We’re seeing this focus in other areas as well.

Some friends who has not seen Claire in a while commented on her improved focus last Friday. Claire tracks to movement as it enters her vision now. Her eyes are more purposeful and she uses them to identify sensory sources. Tiffany has noted that Claire has little trouble finding her now, which is much different than a month ago. We feel that her awareness is becoming more acute and her sensory skills are improving.


Yet we have still had some hard days. Claire’s vomiting issues ebb and flow. They are much less frequent, but when they show themselves, it makes for a difficult day. Our plan is to be more aggressive with her nutrition plan after we get settled into the new house. Claire is still on a majority formula diet; once the move is done, we’re going to start experimenting with more real foods and bolus feeds as opposed to pump feeds. We hope that helps remove the volatility from her stomach.


There is a lot going on around Claire and that may be contributing to her nervous stomach. After we closed on Friday, we got to work on prepping the home. Jon and I were at the house until the wee hours of the morn’ removing the popcorn ceiling on the second floor. It was messy work. Delirium started to set in around 11:00 PM when we had to get the stairwell ceiling scraped. Since only one ladder leg could fit on the stairs, Jon pretended to be the other while I climbed up and scraped the ceiling. Dangerous, yes; but what’s a whole home remodel without a little intrigue?


The intrigue continued into Saturday. We had about ten people show up to help prep the house for this coming Saturday’s work. The task list included removing wallpaper from the kitchen and bathrooms, sanding down walls, priming the ceilings, removing molding, taping the windows and floors and installing the garage door opener. We accomplished most of the work; however, new items popped up. The virgin run for the garage door opener started well but ended tragically when the top panel on the door buckled. The previous owner had rigged the door to operate manually, but the load from the mechanical opener was too much. So we’re getting a new garage door. Next, the wallpaper in the kitchen didn’t come off as cleanly as we’d have hoped, so all the walls needed to be floated. After another late night, it was difficult to get up on Sunday.


I took Heidi and Autumn with me Sunday morning. They explored while I floated the kitchen walls. Tiffany showed up mid-morning and we all started taking turns watching Claire while the rest primed the ceilings and walls. We were making good progress and at the end of Sunday, we were on track for this Saturday’s work. When I say on track, that doesn’t mean the work was done professionally. The work was good enough, however, we knew that we would have to go back and redo some work on the house once we were moved in. But we had a deadline to keep.


After a zombie like performance on the soccer field, I came back to the house Sunday evening to work on a borrowed paint sprayer that had quit on me. The owner of the sprayer is a local Coppell contractor that had lent me the machine to expedite work. His arrival on Sunday night to help with the sprayer ended up being something much bigger. My friend Brian and I followed Larry around the house while he shook his head and picked apart the work we’d done. By the end of the night, Larry had convinced me to let his crew come in and do it right.


So here’s the deal: I’m paying for the parts. Larry is supplying all the labor. For a week. In a house that is being completely redone. I was at the house last night and the work is immaculate. The crew has removed the deck from the backyard completely. They floated nearly every wall in the house. They’re retexturing the walls today. And the house will be painted by the end of the week. (Don’t worry those of you who are coming out on Saturday: we have much more to accomplish than painting).


Tiffany and I have been overwhelmed. We are at a loss for what Larry, his crew and Sylvia Dendy are doing for us (Sylvia is the one that called Larry and is feeding his crew this week, and I suspect doing much more that she refuses to divulge to me).  We are trying to think of ways we can show Larry how much it means to us, while also learning how to be humble enough to accept his gift. One way I can give back is to share the story. Larry does exceptional work. If you are doing any work, I encourage you to call him. He’s honest, straightforward and skilled. His company is called the Home ER and he can be reached at 214-914-1609. I’ll be posting before and after pictures when all is said and done and you can see his work firsthand. It’s awesome.


Needless to say, we are excited to move into our new home. We are looking forward to seeing so many of you this Saturday. It’s going to be fun. If you are planning on coming and need the address, please reference the Facebook page or email me at for it.


Thank you for your continued prayers and support. Please continue to pray for Claire’s progress and that it moves forward. We are getting another round of Botox injections next Monday and we hope that helps alleviate some muscle irritation in her legs. Talk to you soon!