Thursday, March 17, 2011

Really long recap of some fairly uneventful days

Things have been relatively uneventful around here lately. And I LIKE IT! Here is a recap of the past week or so...

Last week, we had a full schedule. Emily had school 4 afternoons and her therapy program 2 mornings.

The only exception was Thursday. Instead of going to therapy, she had her wheelchair adjusted. Do I really need to tell you that my little Weed has outgrown her chair? They thought it would take about 30 minutes to adjust the chair. It ended up taking 1 hour and 30 minutes! It was worth it! She looks great in her chair now - and so much more comfortable. The only thing that we weren't able to adjust are her lateral pads (the ones on her side that are supposed to be under her arms). The pads are up as high as they can go, but are still not hitting her in the right spot. So they will order larger pads and a chest strap to give her trunk extra support. The wheelchair has a strap for the chest, but it is pretty flimsy and not very helpful.

The other thing that we talked about was getting a new chair for home (she is close to outgrowing her Tumble Forms chair). We are looking into a Special Tomato seating system. We also talked about car seats. Emily uses a regular car seat right now and is close to outgrowing it. So we will look into special car seats. Thankfully, Children's has a lot of this stuff on hand, so we can try them out in person. In the past, we basically had to order stuff based on a picture (not really ideal when you are getting a piece of equipment worth thousands of dollars!).

Emily did really well throughout the appointment. She kept sighing as if she was working so hard! She cracks me up! And she was able to go to therapy for a short time after her appointment before we headed off to school.

She has had some rough days at school lately. Lots of crying, whining and carrying on. They have spent a lot of time trying to console her and Gloworm has been out almost constantly. This has even been the case on the days that she doesn't have therapy in the morning. It was really starting to stress me out. One, I cannot figure out why she is so miserable. Two, I want to make it better and I can't. Three, I want her to enjoy school. Preschool is supposed to be fun. She can hate school when she gets older and has to work really hard. I am not ready for her to hate school now when she has to play and do crafts.

Friday was actually the worst day of the week. We didn't have anywhere to go, so it was supposed to be a quiet day. She was absolutely miserable all day long. Nothing I did seemed to help and it was really starting to wear me out. When Mike came home, I went out by myself for a while. I roamed around the mall and a few other stores. I wasn't looking for anything in particular, just enjoying the time to myself. I was able to have a nice chat with my niece as I was strolling around. It was just what I needed. I went home feeling recharged.

Monday, Emily had another bad day at school. When I picked her up she was crying and that continued all the way home. At home, we had some snuggles on the couch and that did the trick. I put her down for a nap and when she got up she was in a good mood for the rest of the night. The girl is a mystery!

I had a meeting with Emily's IEP team on Monday. I requested the meeting to talk about how things were going, what was working, what wasn't, etc. I also wanted to talk about her schedule. For a while I have felt like we needed to make a change, but wanted to know the teachers thoughts about how Emily is handling the 2 days a week when we have therapy and school. She said they spend most of their time trying to comfort Emily. She doesn't spend as much time involved in activities because she has been so miserable. Not only is she tired on those days, but she is super cranky and not very cooperative. So we decided to keep her out of school on those afternoons for this week to see how it would go. I felt bad about pulling her out of school for two days, but if she isn't getting anything out of it, then why bother?

When I picked her up at therapy on Tuesday, she was a bit fussy as we were wheeling to the elevator. I told her that we were not going to school, but she was going home to take a nap. She immediately quieted right down. We had a great afternoon. Then, yesterday when I picked her up at school they told me she had a great day. She was in a good mood all day and laughed out loud for the first time in a very long time. They said that she seemed to be back to her old self. I cannot tell you how happy that made me!

I do feel like Emily has been back to her old self these past few days. When we first started this crazy hectic schedule, she did fine with it. She was tired at school on those days, but she enjoyed it. As time went on, I think it just got harder and harder for her to cope. So it looks like we will be keeping this schedule for the rest of the year. I talked to Children's about switching her to different days next year so that might be a possibility. They offer a Wed/Fri which would be ideal. She could go to school on Mon/Tues/Thurs and therapy on Wed/Fri. I think she would be fine with 5 half days - I think the issue were the 2 full days that we have been doing. We will see what happens as fall approaches.

In the meantime, I am glad to have my happy, easy-going girl back. We have a lot of appointments coming up so we will see how long that lasts. : )


Anonymous said...

It's always good to hear what is going on with Little Em, though the goings-on may not be too pleasant at times. I'm so glad you have this blog.

I hope Little Em has a different schedule next year too, the schedule she has now would wear anyone down.

Praying all your upcoming appointments go well. Looking forward to hearing about them.

Enjoy the spring weather.


Stephanie's Mommy Brain said...

Ah, the joy of trial and error that comes with parenting! Sure does make the job harder. I'm glad strawberries are the culprit for her hot foot. :)

Jenkins said...

Good to hear you are figuring it out! She is tough cookie, a busier schedule than most people.

The glow worm is a must have in our house.

Katy said...

I'm glad you figured it out. Charlie's been getting really cranky at the end of each day and we couldn't figure it out. Turns out, if the teachers give him a few minutes with the chair reclined, his day improves significantly! I guess it's hard for them to tell us they're tired and it's hard for us to tell.