Wednesday, July 21: Update

Claire’s phenol and Botox injection procedure completed without any complications. She was put under for the operation and was alert and awake again by 2:00 PM. Had Claire only needed the Botox injections, there would not have been a need for the sedation; however, the phenol procedure interacts directly with her leg nerves. We can’t imagine that would be very comfortable and are glad she wasn’t awake for it.

While the procedure went well, the recovery has been uncomfortable. We want to make sure that no swelling occurs in Claire’s legs and that means elevation and ice. We’ve been rotating ice packs on her legs all day, 20 minutes on, 20 minutes off. Keeping her legs elevated has increased her agitation. Claire doesn’t like laying on her back and elevating her legs while on her side contorts her body and places stress on her lower back. Claire has to endure this for 24 hours; while she’s uncomfortable, she’s persevering like a pro.

We enlisted Autumn and Heidi to help calm and distract Claire during her uncomfortable awake hours. Autumn read Claire a Dora book first. It gave us a chance to go over how to help Claire recover with books. Autumn was very good at telling Claire when she would read the next page and informed Claire when she would take the book away from Claire’s face. Claire wasn’t enjoying looking at the pictures and Autumn was confused about why she wouldn’t calm down.

After I told her that Claire probably couldn’t see the pictures when the book was that close to her face, Autumn laughed a little and moved the book back so Claire could see. Claire settled down right away and stared at the pictures long enough that Autumn pleaded with me for when she could move the book again because her arms were tired.

Claire has recovered. We have filled out papers. And more papers. It’s all in the interest of hitting the ground running when we do get discharged so we don’t lose any time between the inpatient and outpatient therapy. We’re eager to maintain Claire’s momentum and are pleased with how proactive OCH has been. Their enthusiasm for kicking us out is matched by our enthusiasm for going home.

Though we are happy to go home, it is hard to say goodbye to those we’ve grown accustomed to seeing. We exchanged hugs today with Claire’s admitting nurse at OCH because we wouldn’t get to see her again before discharge. We’ve loved having Charity watch over Claire and laugh with us. We look forward to seeing her soon.

We will be eager to have friends and family visit Claire once we return home. My mom and Tiffany are making their way through the Damoff family’s story right now and one thing that jumped out at them was how much visitors helped Jacob improve. We hope it has the same effect for Claire. We will let you know as soon as Claire is ready to have visitors.

Thank you as always!