We've had a quiet but, busy week. Last weekend and Monday Riley was still very sleepy. It's possible she was fighting the cold we all had or still was having side effects from the ACTH and addition of the Depakote. We're hoping the sleepy days start becoming fewer and fewer! We got our tree last weekend and made the obligatory gingerbread house with Logan. It is definitely feeling like Christmas is near!
Yesterday, we had a GI appointment. It was a follow up to the endoscopy and PH probe study. The good news is that we can stop talking about the nissin (fundoplication procedure). The doctor we met with yesterday seemed a bit shocked that it was ever brought up. While Riley's study showed that she was on the high end of normal for acidic episodes ,which was good, the episodes she is having are lengthy. But, the biopsies done were normal so the doctor wasn't concerned. Fortunately, these are occurring in the lower esophagus and not higher up which would be a concern because she would be at risk for aspirating. So for now we'll continue with the Prevacid and hopefully that will manage the acid reflux she's experiencing.
This morning we all loaded up in the car and took Logan to school so that we could attend the family Chapel service that the school was having. Logan really wanted us to all be there. Unfortunately Dave is working a couple hours away right now but, Mason, Riley and Riley's nurse Kathy were able to be there with me. My heart has been heavy lately and the music and words were what I needed to hear to start off the day. Watching Mason grab Riley's hand and leg as we listened from the back reminded me that those two will always be close no matter what. Like Riley's nurse Kathy said to me as we were driving home from therapy today, Logan and Mason are really the best therapy Riley could ever have.
After dropping Mason back off at home and getting Riley her meds and morning feeding we loaded back up to head to therapy. Riley was sleepy. And I was nervous that my decision to take everyone this morning was going to backfire and Riley would sleep through PT. She spent the first 10-15 minutes being sleepy while she was being stretched. Then it was as if the "lights" came on and Riley was rolling from side to side. She was also looking all around and following voices. The Riley we were seeing before the Infantile Spasms appears to be back. While Riley's therapist was out of the room I sat Riley up and touched her hands to the musical toy they had out for her. I did it for her a few times and then encouraged her to try on her own. Although Riley's hand didn't make it all the way to the toy she was moving it and trying as hard as she could to touch the toy. It feels like we are watching Riley's brain re wire right before us. And as I type this I'm teary thinking about how hard she is trying. For a 21 month old who has already been through so much and who goes through so much daily she really is a fighter.
Next week is the CI surgery. We have a pre op appointment on Thursday morning. I am hoping that all goes well on Thursday and that we get the all clear from the anesthesiologist and pediatric internist for the surgery. I really don't see any reason why we won't.
As we get closer to December 26th I try not to relive the day over and over in my head. I can still vividly tell you all that happened from that first ambulance trip on the 26th until Riley was intubated and transported to CHOC on the 27th. And, it doesn't feel like it was almost a year ago. Sometimes it feels like just yesterday.
While thinking about the day and what we wanted to do together as a family I also had an idea for a special video. It is very possible that I would have been able to put something together myself but, my nephew Drew is much more talented in this area so he's helping me out. Last night he posted a "trailer". And I've watched it at least a dozen times. If you haven't seen it yet you can view it through the link below. It's just the quick version of what I think is going to be a wonderful final video!
We'd like your help with one thing if you don't mind??? I believe I have most of the pictures together of everyone wearing the Team Riley shirts but, if you haven't sent me your picture could you? If you've already sent it I have it (yes, even if you sent it months ago)! Thank you!
We hope you have a wonderful weekend wherever you are!
Dave, Megan, Logan, Mason and Courageous Riley