Our first two days at KKI haven’t been overly eventful, but so far we are having a great time.
We discovered our room is actually a 3-patient room rather than a regular 2-patient shared room and we actually sort of knew our roommates, or at least one of them. Frances and Mike, whose son Matthew was affected around the same time Annadelle was, had been my friends on Facebook after we met through the AFM parent group. We had been keeping up with Matthew and his progress online and I had taken some time to message Frances every now again, so I felt like we already knew all of them. I had declared them family even though we had never met. We were stoked to find out they would be one of our roomies. Our other roomies, Laura and her son Francisco, were also familiar to me from the parent group. We all get along very nicely and it is so wonderful to be able to talk to other parents who have been dealing with the same thing we have. It also seems to help Annadelle to be around other kids with AFM who have the same or similar limitations as she does.
Our first day actually kind of felt like a waste because all we did was hang out in the room and meet the teams of specialists who will be working with us. Annadelle discovered that she doesn’t really like the food here which makes picking meals for her pretty difficult. The cafeteria food is outrageously expensive (even more so than the other two hospitals we have been at) so buying a whole other meal is not an option for us at this point. We are going to do a little bit of grocery shopping and come up with some snack items that Annadelle will eat and pray for the best. We are having to watch what she eats due to her weight gain, making this even more difficult.
Before bed on our first night, the staff gave us a schedule for the next day which was very helpful. It listed all of the activities she would be doing that day, with who, and what time for each. Our therapy began at 9:00am but the doctors were doing rounds beginning a little before 7:30. By some miracle I had myself and Annadelle ready around 8:30 before Chris arrived.
Only one parent is allowed to stay in the room overnight so Chris and I are taking turns staying with her. She wanted me to stay with her the first night. Chris took the hotel shuttle back to the room for the night and took it again this morning. We have still not been able to get a room at RMHC of Baltimore or the Children’s House (Johns Hopkins’ version of RMHC) so we are having to stay in a hotel for now. We were blessed that a close friend of Chris donated some of his hotel points and booked us a room until the 16th. We are praying we are able to get in to another room before then. We would prefer the Children’s House because it is closer. We have been told by numerous employees not to walk around outside at night. This area is apparently very sketch and we have been warned not to walk around holding a cell phone. The Children’s House is only across the street and can be accessed by tunnel which is the big reason for wanting to get a room there. Otherwise I would be terrified to have to walk a few blocks over to RMHC.
As far as therapy goes, the gym is A LOT smaller than I had anticipated. The gym in Birmingham was much bigger but only had room for 3-4 patients. The gym at KKI is smaller but has a lot of equipment and is very noisy with the large number of patients there. I don’t really see it as a disadvantage, though, because the kids really help to support each other. The therapists also make sure to keep the kids on task by distracting them from the pain (or other distractions).
I was so glad that our PT and OT immediately began doing estim on Annadelle. I had been told by other patients that KKI utilizes estim a lot which is something we have been asking about since Annadelle’s AFM diagnosis. It seems other rehabs are very hesitant to use it, but through my conversation with the therapists today, they have good success with it. They also use Swiss stem, which I guess is different from regular estim because it penetrates deeper into the muscle. It was used on Annadelle a lot today. She tolerated it well until it was used on her upper legs. She cried a lot at that point, but she just tucked her head in, squeezed my hand, and pushed through it without having to have much motivation. She knows what has to be done to get her walking again.
For the afternoon session, I had to spend the entire PT appointment time meeting with the social worker, Rose. Rose was super nice and spent a lot of time getting to know our situation. It almost felt like I was sitting in on my own therapy session, as she listened to me and offered a lot of emotional support. It was a relief to be able to spill my feelings even if just for a minute.
Unfortunately I missed Annadelle walking on the treadmill because of my meeting with Rose. Chris said very little about how she did (something he always does). He is a man of few words at times and it is hard to pull information out of him, but our roomies told me she did awesome. I wish I could have been there to see it.
Our therapists also got us a different, light weight wheelchair to use while we are here. It has a back support and is easier to reach the wheels so Annadelle is able to move herself around a lot better. It is even purple (her favorite color) and has light up wheels. They are going to reach out to Coastal Medical to see if we can get one ordered for her. Hopefully we can because Annadelle will actually use both of her arms to push the wheelchair. Her roomies are able to move around with their wheelchairs which helps to motivate Annadelle to do it, too.
We will have a consult sometime this week to discuss acupuncture and massage therapy for Annadelle. We have heard that acupuncture can help patients with AFM and at this point we are willing to try almost anything.
Not many updates besides that, so I’m heading to bed. We have another busy day of therapy planned tomorrow.
Thank you for all of the support. Our journey is far from over. Please continue to say a prayer for complete healing for our baby girl.