Not one of Nica’s better days. Last week Katie said that normally at the end of a full week of therapy, the kids are just done. Nica proved this today. She may not have gone right to sleep last night but when she finally did, at around 10:30pm, she slept well all night long. Unfortunately, one of the neurosurgeons tried to remove her bandage and look at her back at 7am. For a surgeon, that’s not the smartest moves. He finally decided to just come back later but it had already put Nica in a bad mood and robbed her of an extra hour of sleep. Yeah!
This morning we switched things up a bit by starting with OT. It was Ms Lindsay today, and we decided to take the Imaginets play set, that Nica got from Greg and Abby, to play with. It’s been a big hit with PT, OT, and the rehab nurses too. Several staff members made a point to write down the name of it. I’m curious how many sets are going to eat up in the pediatric rehab gym. So, kudos to Uncle Greg and Auntie Abby.
Once OT was over we actually had a 1 hour break before it was time for PT. We used the time wisely by going back to the room and watching more Goofy cartoons. When Katie came to get us for PT, she told me that Custom Mobility, the company that sells us Nica’s adaptive equipment, was coming out to finally adjust Nica’s wheelchair. This has been an argument with us and another patient all week. CM was refusing to come out and do the adjustments because they said that Nica hadn’t sufficiently healed from the surgery. Like they’re all Doctors over there. Anyhow, after going through all the proper channels via about 8 phone calls from 3 different people, Dr Kornberg was getting annoyed and he called the president of the company directly. They then had a tech here is less than 24 hours. It seems heading one the best rehab departments in the state does indeed come with certain benefits. You go Doc! Actually that story isn’t entirely true. Not 30 minutes after the first tech had finished, we got a call from a second tech who was trying to come out and do the same job. Somebody must have lit one heck of a fire.
While the first tech was working on Nica’s chair we played this cute Duck, Duck, Goose board game that Nica has taken a liking to. She did some decent standing but her endurance was wearing down. She did some push ups on the Pilates ball after that until it was time to try out the wheelchair adjustments. Then we were out of the chair for a few minutes then back in. This went on for longer than Nica was willing to tolerate but eventually the tech finished up and ordered some replacement parts for later, and we left for our room.
Nica begged for her chicken she was so hungry. Sadly, she was so tired again that she wouldn’t eat it. She just sat in her chair and screamed. I started to take her out of her chair and she said she was all done screaming and that she wanted her chicken. We tried it again and got the same results so it was bed time. That’s when I saw a side of Nica I had never seen before. She began snorting and scream and thrashing and wriggling around the bed looking for a way off of it. I had thoughts of a horror film with a possessed child. It was a bit scary. By the grace of God it only lasted about 3 minutes before she was out like a light and taking what would become a 2 1/2 hour nap. She woke up crying a bit but soon got over it and asked for her chicken again. She ate some of it but then wanted to go have some fun.
We got to the play room for the tail end of 2 parties. One was the end of chemo party and another was a birthday party for our neighbor. It was a bit crowded and messy but Nica got some doll house time in. When they began closing the play room Nica felt she needed more dollhouse time. Steph, one of the Child Life specialists let us barrow a smaller dollhouse for the weekend and left a suprise for Nica on her bed. It was a new singing Belle doll. She couldn’t wait to open it and played with the rest of the evening.
Mommy and Anne arrived right after bath time with 30 minutes of visiting hours left. Nica really missed Mommy and sissy. Mommy brought Nica’s new Leapster LeapPad, as it had just arrived at the house yesterday. Nica’s OT is really looking forward to trying it out next week for some fine motor work. I suspect it may cross over into some of her other therapies as well, but that’s why she got. Somehow we forgot the batteries so I’m going to pull some out of my camera flash so that I can get the LeapPad set up and then we can get new batteries in the morning when the gift shop opens. So for now, I bid thee good day.
