I took Cordelia to school and then stayed in my classroom for an hour and a half.... then it was time to head back out to pick up Phoebe! The back and forth.... along with missing time off work, you also have to consider all the extra travel time/gas expenses when you are treating your child.....
We went to a new medical building, but fortunately still in a neighborhood close to home.
I filled out the paperwork, listing Phoebe's various conditions and the ever lengthening list of medications she is now taking. Ug, I remember how whenever I filled out one of those forms before, I could just circle "No" all the way down the line.
We met the incredibly nice OT, Lisa. She was just lovely, so calm and sweet and Phoebe liked her right away. Best of all, the office had a Sesame Street decor theme, which was perfect because now that I'm starting to allow Phoebe some screen time at home so we can all just veg out-- Sesame Street is my go-to show for her. She was super excited to see a big mural of all the characters in the hallway. Inside the play space, there was a frame picture of them that she kept pointing to!
We started by letting Phoebe play on a mat, while I gave Lisa the whole backstory and went over everything she has gone through. So much for such a little person! She was very empathetic, and of course, like everyone, was shocked when I described the hourly eyedrops. I got to tell her about how Phoebe had regressed in her walking.... never crawled anywhere, cried when she took a step, had to hold on to things to support herself--- if she could even put weight on her feet, or how she couldn't even bend to pick up a toy. Now she is doing ALL of those things. My concern is that the joint injections are going to wear off, but hopefully these therapies are going to help prevent that. She is so much improved, but it's still clear to me that things are not perfect.
Phoebe got to play and explore! So many fun things to do!
So many different types of balls to play with! Phoebe wanted to carry some down a long, long hall to the side of the play space, to drop them in a hoop. She even let Lisa pick her up, showing how trusting she was. I'm sure that hall way must be great for assessing children struggling to take steps, much the same as I've been using our hall way at home. As Phoebe walked around, I pointed out how Phoebe has been clenching her toes while she walks, but that the rheumatologists hadn't thought it looked inflamed. She agreed with me, but it's more likely that she is compensating using her feet.
Putting more balls in a bucket!
Phoebe LOVED the swing! I don't even have video of when she started to gently spin Phoebe around! Wheeeeeee!
Phoebe saw the little roller coaster by Step 2 and wanted to get on it. I don't have a picture, but this is what it looked like, the Thomas the Train version.
Phoebe climbed up the steps and managed to get both her legs over the sides and seated herself on the train! Then she had to bend her knees quite a bit to put them up on the foot rest position. It was a little difficult for her. Lisa didn't want her to go too fast, so she helped move her down the track to the end, and then Phoebe scooted across the floor. Wheeeee! When the train stopped Phoebe said "Bee-yah!" her word for more/again!! She loved it! We let her do it a couple more times, but didn't want her to over exert herself (and she was getting pretty sleepy), so we put it away. She can do it again on Wednesday for her PT!
Lisa wanted to examine her elbow, so we started a new game over on the mat. Lisa began sticking these suction cup toys up on the big mirror, to test Phoebe's range of motion in her arms and shoulders. By placing them up high, Phoebe had to stretch and reach to get at them. This was super fun. We have these at school, but I had never thought to use them on a vertical surface. Usually we just put them out on a table and let kids build with them.
Overall, Lisa was very happy with Phoebe's mobility. She decided that pretty much my only "homework" is to give Phoebe hand massage, maybe with some lotion, to try and do the finger bends some. But to start slow, making it a little ritual, to build the habit and let her get used to it. We don't have to go back for 2 weeks. I was able to get an afternoon appointment, 2:45, so I won't have to miss work, but we will be having a struggle around nap time, if Phoebe keeps skipping her morning nap. I also asked, it sounds like siblings can come and play too. So if Cordelia behaves herself, I hope this can be a fun way she can feel a little "involved" in some of Phoebe's appointments that don't involve shots or xrays!
So looking forward to her PT appointment on Wednesday! We already met the physical therapist we will see then. She came through and went into a little office within the play room and turned on the lights within. Phoebe was fascinated by where she went. She said "Off" as she noticed the lights go on and said "BYE!" several times after the woman had disappeared from sight!
Anyway, today was so fun, I just couldn't wait to write about it during Phoebe's nap! :)
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