15 Hours of Sleep

Wow - time is flying! Suddenly it is the middle of June - how did that happen???

Bug is now in her second week of summer school. She is loving every second of it! We tried skipping the mid-morning protein bars since they are only in class 3 hours and have a snack during that time, but it didn't work. So, back to protein bars it is.

It's really interesting seeing the amount of work she is bringing home, completed! What a difference the change in schedule makes. Most of summer school here is reading based - so there isn't a lot of written work at all. Because of this, Bug is able to complete more assignments when they do have them - which is wonderful! Just goes to show once again that she does enjoy doing the work and will do it on her own when she feels well.

We saw our allergist last week and he agreed that the rash around her mouth (see earlier blog posts) does look to be some kind of reaction to food. So now we're scheduled to do blood allergy tests for food in August. I hate to do that to Bug, but I've put it off as long as I can and I still can't figure out what is causing the problem. So - hopefully we'll get a couple of answers when the tests are done.

We were also able to get squeezed in with our hospital OT while we were there. He made us three new rings to replace some that have been lost the last month. He was amazed at how much her fingers have grown over the year - she will need an entire new set of rings this August. We could have gotten them now but decided it would be best to wait to see if she grows more since these are small but she still says they are comfortable. Since we had just been up to allergy I had gotten a copy of her growth chart and was able to tell the OT that she's grown a whole *3 inches* since he made those splints last August! WOW! So he was validated in his guess she'd grown a lot.

Summer is going well for us so far. Bug is loving the lazy afternoons after school, and we've been going to the pool a lot in the evening. One thing that is kind of sad is that her swimming has regressed so much after not doing it for several months. I am hoping after another week in the pool she'll get some of her strength back, but if not, I have the number of a new person to do private lessons with. Our old swim teacher is just too busy these days. :(

This weekend Bug had a "normal kid" schedule - she played all day Sat. in the sprinkler, and spent the night with a friend. Then she went to church early on Sunday and hung out over there for most of the afternoon. By the time I got her at 4:30, she was beat. So much so that she and her brother went up to play the computer and she fell asleep sitting at it, head down on the computer desk!!! I moved her to her bed, and she slept from 5:00 pm Sunday until 8:00 AM Monday. I had a really hard time getting her up too! However, we made it to school, just a few minutes late. I'd like to give her a more lazy day today, but we have vocal lessons this afternoon and then we plan to swim some. (I want her to swim at least a little each day) So, we'll see. It might be a busy day just with early bedtime.

One great thing about summer is that she is able to play and we can take the time to re coop! During the regular school year we just don't have the time to do that. If she plays like a "normal kid" then she is struggling all week in class. At the same time, it's so unfair to not let her play much - after all, she is a 6 year old! Maybe this summer I'll be able to figure out a better balance so that we can still do some fun stuff even during school.

I wanted to update that we are not doing any jungle gym stuff - I just don't think there is a good reason to. I think that the main concern the PT had was that we have these domes made from bars on the playground that Bug just won't even go near - and that is where most of the little girls hang out. This summer instead of teaching her jungle gym stuff I think I am going to try to get her comfortable on the school playground, and help her find activities there that she enjoys and are safe for her. I'd like to see her at least go under the dome, (no climbing required for that) but I could care less if she ever climbs it. I am also trying to do some research on getting a bench for the playground so that this year maybe she could sit outside during recess instead of inside. That way she gets fresh air and can socialize more. If anyone knows anything about park benches, or if there is somewhere that might donate one, let me know. :)

Finally (for now) I wanted to let you know that we got to bring the iBook home for the summer - and Bug has been playing it daily! When I say play, I mean playing the TYPING PROGRAM! She *loves* it, and has been practicing like crazy! I am so proud of her - every time she does that she is helping herself become just a little more independent! WOO-HOO!!!

I can't remember what I have posted here recently, so I'm going to go back and see if I've written my IEP stuff, summer goals, and the like. I also still want to get her accommodations posted, as well as the things we've modified at school and home, and the pictures/info from how her OT makes her rings. Hopefully summer will give me a chance to get caught-up on some of that.

Thanks for continuing to read and comment - you guys have given me some great ideas and strength over the last few months!


Anonymous said...


I have a daughter who is a little younger than your daughter (almost 6) and she has a connective tissue disorder and would benefit from learning typing skills early. What typing program was your daughter using?
My email is mamata.hm@gmail.com