January 12, 2019 One Week In the Books

We have finally come to the end of our first week of therapy at KKI. Tomorrow (Sunday) will be Annadelle’s first day off from any therapy. She is overjoyed to be able to do whatever she wants for the day, especially considering there is a large amount of snow expected to fall overnight.

Chris and I were able to get a room at the Believe in Tomorrow Children’s House, but it is only until the 24th. For some reason they are kicking us out so that they can accommodate another family that is scheduled to come in. I was confused when they were explaining it to me because I’m wondering why they aren’t being put on a waiting list like us. We have been on a waiting list since December. Oh well. I’m grateful for the room, just stressed about finding somewhere else to stay come the 24th. My mind has been consumed with worry about finding another room somewhere in Baltimore.

Our room at Believe in Tomorrow

The entrance to the house

The past few days in therapy have been very productive. Annadelle is working hard for many hours throughout the day. She very rarely complains about having to do the work or the estim which is a blessing. We were worried she would tire out quickly and start to whine, but we have been amazed at her attitude and determination to get through it. I believe her being around many other kids affected with AFM is helping tremendously because she sees how well they are doing and wants to be equal to them.

Annadelle in the gym walking in the harness

I love seeing all the kiddos making progress (because they all have, for sure), but one kiddo in particular is really helping to give me hope for Annadelle’s full recovery. I spoke with his mom today and we shared stories about our kids’ onset and determined Annadelle’s story was very similar to her child’s. They were diagnosed just a few days apart, affected almost identically, and received similar treatments. The only difference now is that her child is trached, 3 years older, and male. But he is walking! He still needs a bit of assistance but he is kicking butt in the gym. The first day he walked I cried like a baby and he isn’t even my kid, I just know the joy his mom felt watching her son do something she wasn’t sure he would ever do again. I pray for the day Annadelle is able to walk, too. I am keeping faith that that day is coming, hopefully very soon.

I know I continue to talk about the connection between all the AFM parents here at KKI, but it feels so amazing to have such a support system between parents. We all cheer on each other’s kiddos like they are our own. We celebrate victories and cry over setbacks together. We have so many shoulders to lean on. But the best thing is seeing our kiddos feed off the other kiddos. It’s almost like they infect each other with hope and motivation, much like the parents.

Tonight we got the kids together for a movie night in our room and invited another family in to watch. Our room is known by the staff as the “party room” so it is not uncommon for other kiddos to come in and hang out. It gives us a sense of normalcy.

Annadelle and her roommates practicing standing using knee immobilizers

Tomorrow we may receive up to 7 inches of snow here in Baltimore. I am dreading it but of course Annadelle is super excited. We have a TLOA (temporary leave of absence) we can take tomorrow and I was hoping to be able to go to Target to pick up a few things we need, but the snow may prohibit us from doing so.

The view from our room window tonight

Thank you for all of the continued prayers and support. I will continue to update about our journey at KKI. We are praying she makes big strides here!

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