Annadelle has a very busy schedule today. Her itinerary included 5 hours of PT or OT and a bit more recreational therapy. It was no surprise to me when she fell asleep immediately after her bedtime prayers.
She had a lot of fun in OT today while working on her fine motor skills and learning to navigate her wheelchair. They are teaching her to make big pushes with both arms but she has difficulty because she isn’t able to let go with her left hand and hold her arm up. She is doing a lot better than she was before we came because they were able to get her a loaner wheelchair that is much lighter. We are hoping we will be able to get a wheelchair like that for when we go home.
It seems we may have met a major milestone today in PT which is extra special considering we have only been in therapy for 2 days. Before we arrived, Annadelle was not engaging her right hip flexor (that we knew of). Miss Cameron said she believed it was activating with the help of other muscles, but we weren’t 100% sure. Today it became very obvious when we observed her walking in a device I call the vector, but I doubt that is the name of it.
I don’t really know how to describe the feeling we have being here. On one hand, it really sucks that we even have to be in this situation to begin with, but we are also so grateful to be around other families who have been dealing with this for as long as we have. Today I watched another AFM kiddo stand on his own and walk with minimal assistance. I sat there and cried and I watched his family looking at him because I know the joy they were experiencing at that moment. It is strange to say that I am just as happy for them as I am for Annadelle, but it’s true. Yeah, there’s that twang if jealousy when we see others doing better than Annadelle, I will admit it. But on the same token, it is encouragement because we have faith she will get there, too. It is really amazing to see how all of the families come together and support each other. Being able to talk about your struggles with others going through the same thing has been like having our own therapy, something we didn’t realize we needed until now.
The biggest complaint I have about KKI is the fact that only one parent can stay in the room overnight. It is so hard to leave at night and wonder how she did while you were gone. Yeah, it is good to have some respite, but knowing one of us has to leave for the night is hard on us all. We still haven’t heard back from RMHC or the Children’s House which has become another added stress. There are simply too many families in need of a place to stay and not enough rooms available. I am going to call tomorrow to check the status of the waiting lists, although I doubt I will get very far.
Update on the AIRBNB, I had to fight the host but I was able to get a refund for the room. A rep from AIRBNB called me to talk about what had happened and explained to me that because the room was advertised as accessible, I was entitled to a refund. The rep said he is working with the host to get the listing updated but I won’t receive my money back for 15 days.
Speaking of money, it is extremely expensive to eat here. I can’t remember if I had included that in the last post, but yesterday at the cafeteria for lunch I got a piece of chicken, asparagus, and cabbage. Chris got a bowl of vegetarian chili and cabbage. Our total was $29 without drinks! It is ridiculous! We have just been drinking water to save money and it is still outrageous. Hopefully we can get into a common house soon so I can try to make us some food that we can store in the floor fridge and save us some money.
Please say a prayer for my sweet girl tonight that we see some major progress while we are at KKI. And of course please pray for a full recovery. There are no limits when it comes to God.