We are now 13 months post-onset and continuing to see improvement. Praise Jesus for His healing hands. Amen?
The photo above is a grab from the weekly report sent home from Annadelle’s resource team each week. Every day she is in the general education classroom, but sees two separate resource teachers for reading and math. On Thursdays, she goes to speech and on Mondays, she does in-school PT. In other words, she has a busy schedule! We are beyond blessed for Annadelle to be at the school she is at.
I was so excited to see this note that Annadelle is now in her walker twice a day. She is no longer using her Rifton wheeled stander so we will be returning it to CRS within the next week or so. It is quite the drive to Mobile so I’m working on scheduling a time to get over there and return the stander. Now that she has the walker, the IEP team met and we determined we needed to get her in the walker more. As you can see, she is now in it twice a day in just a few weeks time. She is really progressing wonderfully! Even now as I type this, she is scooting around on the living room floor cleaning up her toys. This is a huge improvement and is something she has been working on in therapy. She is also able to lay on her back and push her butt up off the ground much better than she could a few months ago. It makes it much easier when trying to get her dressed!
While at PT/OT at Encore, her therapists have been working with her on improving her core strength, having her use her left arm, and navigating her walker without the side brakes on. She’s not comfortable enough to be without the side brakes on all the time, but she is definitely improving. Last night we put up our Christmas tree (before Thanksgiving for the first time ever I think- I usually never win that fight, but this year Chris gave in) and Annadelle helped me to decorate it. I put her in her walker and she stood at the tree while I handed her ornaments to put on. If you’ve ever let a 6-year-old put ornaments on a tree, you know you likely have to go behind them and move them around so they are spread out. I did that a little bit, but she was good about moving her walker around the tree to space them out. She did all of that with no brakes on, even on our tile floor. Although, she did tell me when we started, “Mommy! I don’t have my brakes on!” “Yeah. I know,” I said. She looked at me with confusion then went on her merry way (pun intended).
Annadelle is still on a modified ketogenic diet (sugar free), although we have been a bit lax over the last few weeks. She hasn’t gained any weight, but she hasn’t lost any either. Mommy is struggling to stay on track, too. 🙂 We had family visit recently, and when they visit it has sort of become a tradition to visit The Yard in Gulf Shores. This place has amazing milkshakes, and all of them have a whole separate dessert on top. It is definitely not sugar free (but soooooo worth it)!
My mom and I recently saw where Jojo Siwa will be coming to Pensacola on Memorial Day weekend, so we are going to try to get tickets to see the show. Annadelle really wants to meet Jojo so I need to get to work on that. We had told her that she could meet Jojo when she started walking in the walker during the day without her chair and I have a feeling that time will be here sooner than later. She told me she wanted to meet Jojo for Christmas.
Speaking of Christmas- I had the most heartbreaking conversation with Annadelle about Santa. She asked me, “Mommy, does Santa Claus grant wishes?” I thought for a moment and asked her, “Why? Do you have a wish you want granted?” She said she did and I asked her what it was. “To get to walking again,” she replied.
This was one of the first times Annadelle had specifically talked to me about walking, or rather wanting to walk. She will say, “When I get back to walking, can we go to OWA?” but she has never specifically said she wants to walk. She usually just talks about walking like it is for sure something that is going to happen. Chris and I believe that she will be walking alone in time, but convincing a 6-year-old of that can be difficult.
I told her no, Santa does not grant wishes like that, but Jesus would. All she has to do is ask Him. We talked about how to pray for things that we want- no material things, but for things like healing and later that night we prayed for that. I have prayed for her to walk every single night for 13 months now and whenever someone asks me how to pray for her, that is what I say. Of course I ask the same thing now. It was one thing when I wanted to walk, but now it is a whole other thing when she asks for it.
I wish I could tell you how heartbreaking it is not to be able to fix this kind of problem for your child, but it is a feeling even I don’t know how to describe.