Today started way too early for me and apparently to late for Nica who decided at 6:14 that she wanted to watch House of Mouse. I tried very hard to convince her to go back to sleep and I met with a modicum of success in this venture, but it seems everyone else was early today also. People kept filing in and out of the room all morning and then I forgot that Nica’s PT was at 8 and not 8:30. It was OK as Katie was just getting in herself and the few minutes I needed to get Nica ready gave the nurses time to take Nica’s vitals and give her her meds.
When we got to PT we were excited to see the knee immobilizer box waiting for us, that is until we opened it and saw there was only one in there. I’m guessing that in the spirit of Gaspirilla week, they wanted Nica to walk with a limp. God bless her, she tried really hard to do it, but in the end it was just to awkward. The tricycle proved much more effective, but without the knee brace. I didn’t see it unfortunately, as I was the prize at the end of the ride, waiting in the room with the Nemo play set that Nica was asking for. Katie told her that if she wanted it, she could go get it herself. So, she did.
We got back to the room and got set up for walking without the limp only to find that this was the time when the limp would’ve been more appropriate. We got attacked in the hall by Ye Mystic Krewe of Gasparilla. They were making sure that the kids each had a bounty of pirate treasure to brighten their day. Today, Nica got more beads, a plush pirate football, pirate stickers, 2 pirate bracelets (so she could share with Anne), and a YMKG fabric patch. It was all pretty sweet. We were later told that we’d be invaded again of Friday and that we should prepare our selves. Nica like everything so much that she wore her new pirate garb the rest of the day.
OT moved in with a new girl today. She had Nica do some sitting while coloring and crafting with Play-doh. Nica made a plate and a snake, and some red ice before she decided she was done. She began singing the clean up song and put all the Play-doh back in the big tub.
ST also brought a new girl to play, Suzanne I think. Tim said he wouldn’t be able to see Nica every day and when he couldn’t make it he’d try to have Suzanne fill in. She was nice and she had Nica doing oral motor exercises that I’d never seen before. For example, she put a plastic spoon sideways in Nica’s mouth and then had Nica talk. It was very interesting. She said Nica responded well to the technique and that there was better tongue control. We’ll see if it continues to work or if Nica just gets sick of it.
With the early start of the day came the early end of the morning. We were done by 11 and lunch was in the room. Nica ate 2 large yogurts, and some fruit and then she took a 45minute nap. It wasn’t as long as I would’ve liked but she was afraid she was going to miss the outing to the Glazer Children’s Museum. Katie wanted to try to take just Nica today and I felt that Nica was getting comfortable enough with her therapists to go without me. I tried really hard to get them to take either my camera or my camcorder because I knew they were phone picture people, but I failed. As a result, I got to see low res underexposed pictures of Nica playing that might have been really cute if I could make them out better. It was Nica, Vari, and a new boy Elijah that went today. Nica did some dancing, put on a fireman’s costume, and made a paper hand puppet. She was super sweet on the way back from the museum to boot. You see, Vari was very upset and Nica wanted to console him and help him feel better. She did what she knew works for her. She let Vari hold her favorite Ariel doll, the one she calls Mommy Ariel. Tim told me that it worked too. After a few minutes of holding Ariel, Vari was doing much better. I was so proud of my daughter. 3 years old and willing to share the thing that means the most to her and has given her so much comfort and peace over the years. She was so happy that she was able to cheer Vari up that as soon as she saw me again she had to tell me all about it.
Dr Korberg made an executive decision again today. He is concerned about Nica’s trunk control and was thinking that her muscle relaxer may be more of a hindrance at this point. He’s now cut her down to 5mg once a day, before bed. I’m excited to see how she does. We may even to be able to wean her completely off of muscle relaxers before we leave here. All because of one operation. It continues to amaze me how far she’s come in such a short time. At this point there is still some wait and see regarding the baclofen, but going from 30mg a day to 5mg is just amazing. Something that Tammy and I thought would just be a part of Nica’s daily life has nearly been removed. I know there is a chance that she’ll need it again later in life, but I choose not to dwell on that right now.
On a new topic, it looks like Anne may be getting tubes put in her ears. She’s running a fever and we found out today that she has another double ear infection. Her pediatrician reviewed her chart and saw that’s it’s every couple of months that we are in with Anne for ear problems. She’s recommended we take Anne to see an ENT. Tammy and I decided that one kid in the hospital at a time is enough and we’re going to wait for Nica and I to get out of here before we take on Anne’s ears and a new hospital trip. Besides, a couple more weeks will give the antibiotics a chance to work before some one goes poking around in her ears. Keep us in your prayers as it looks like the ride will be extended and switching tracks. All aboard, woo, woo!
Well, thus marks the end of another day. I hope everyone is well.
Ray
