Finally, warm weather!!! It's been a great week here, warm but not hot, and the kids are on break. Bug has done great so far, no tummy aches, lots of rest, and playtime with friends. Who could ask for more?

I saw her PT last week at the school, and asked for her thoughts about the fatigue and stomach aches at school. She was really pro-protein, and was thrilled we've already added two high protein snacks into her school day. She also suggested some supplements, which she has been taking for years, and I am awaiting more info on that when school starts back up. She seemed to be on the same page about the fatigue being the root of our problems (stomach included) but wasn't as enthused about my seating theory. However, I'm going to run that by the OT's since I think that might be more of their thing. But in the end, as we eliminate each of these potential causes, that gets us closer to more solutions. So if we keep trying what they suggest, and still have problems, I'm thinking that they will be more receptive to some of my more "off-beat" suggestions. ;)

After having a taste of Spring Break, I just can't wait for summer! It is so nice to see Bug getting lots of rest, having time to play, and enjoying herself. School just wears her out so much... It's amazing how much of a difference it makes just having the leisure of being able to stop and rest as needed instead of being on someone else's schedule.

I'm also looking forward to lots of lazy days at the pool. I just wish I had a laptop so I could actually get work done while she plays and swims. We spend so much time there I could accomplish a lot!

That's about it for today - like I said, it's so much less stressful when we are completely on our own schedule. Of course, we aren't doing any school work right now either, which gets tiring. Breaks are so nice...

Today was the warmest it's been in months - yipiee! 72 degrees, sunny, and clear. Bug told me she went out for two recesses today, as well as for a special reward time outside they had earned. She hasn't been out that much in a single day since fall. So, I asked her, why she went out so much today. She told me because she wanted to. So I asked why she doesn't go out when it's colder out. And she said "because when it's cold my body hurts more." So - note to myself to share that with our Dr's. It makes sense in many ways - and rings true of what I remember from last year. Of course, last year we were just beginning our journey and I wasn't keeping notes like this yet, but from what I can remember winter was really hard on her compared to the warmer months.

That's it for today!

Yesterday was another off day, Bug just didn't seem right from the beginning. However, she made it until 12:30 before the school called me. Then she rested in the office for 45 minutes, went to class with me (I was going to volunteer) but it was apparent neither of us was going to get anything done. Finally, at 2:15 we went home. She rested on the couch until 3:00, then popped up and said she wanted to return to school. Ack! School was over in 20 minutes. (she doesn't know time very well yet)

So... I've decided to take a new approach. Instead of trying to get her to hang in there and rest at school, I'm going to start picking her up right away and see if that 45 minute break still holds true. Then if so, she can still return to school and hopefully get something done or at least enjoy the rest of the day. It's at least something new to try.

Today I let her sleep in, she slept until 9:30. I think that was somewhere between 12-13 hours of sleep. So far no calls from the school so maybe it is helping.

I also wanted to state that several of you have posted great feedback to this blog - but can you please include any links to studies or resources you mention? I have a folder I am working on full of this kind of stuff, and the more research I have to back my requests the more apt we are to get them. I love the fact there are people even reading this - and love even more you care enough to post back. But if you have some information that could be helpful, please share that too. I'm always looking for more! :)

I did take in a travel lap table today to be used with Bug's beanbag chair. I hope that it is helpful - even a small step in the right direction would be good!

Thanks to all of you again!

We had Bug's teacher conference last week, and talked about several things. I hate to say it, but anymore I dread her conferences. I love her teacher, being in her room, volunteering, but man - conferences are just so hard. There everything is in black and white, what is good, what is bad, and for us, all the questions we still haven't found answers for. ;)

For starters, while she hasn't come home in the last couple of weeks with stomach aches, she has spent a lot of time not feeling well. (fatigued?) We have been doing twice daily Previcid as well as well as morning protien bar snack and sometime mid-afternoon snack. I feel at this point there is nothing more on my end that I can do. So, that leaves us with looking around the classroom and at the structure of her day again, and what could be changed on that front to help her more.

Her teacher did say she is spending a lot of time when she isn't feeling well in her bean bag chair. I asked if she did work in it, and she said some. I suggested that I bring in a travel lap table to see if she would do more in her bean bag chair with a good writing surface. She liked that idea, so I've got to look around for the one we used to have. It had nice padding on the bottom so it shouldn't rub her funny.

I still think that part of the problem are the chairs she has to sit in during class. They don't offer much support. I need to see what happens with this bean back/lap table and then possibly talk to her OT and PT about options for next year. I am also pretty sure that the cold weather makes her feel worse, which kind of sounds weird, but then again people with arthritis complain about joints in winter so maybe it isn't so strange.

Homeschooling has been on my mind more and more lately. In many ways I can see the benefits, but in other ways I think it could make things harder. Right now she has so much acceptance from her peers, I'm afraid if I remove her from that and then replace her with them later down the road it would be really hard. Also, the fact of the matter is that she likes school. She enjoys it. If we could just get around her body not keeping up with her mind... I think the reason I keep revisiting the idea is because I feel like so much of the work we do at home already, because she can't keep up in class. We do it in so much less time too, because I just write while she does the work to get the answers. I wish I could get her an aide... I think she would learn so much more. But we haven't got enough of a case yet to justify that, which is ok, because who knows, we might get this typing thing and seating all worked out and find some extra energy soon!

Gotta run, Bug just came in and isn't feeling well. She said she feels like when she doesn't feel good at school. Just doesn't feel good all over - like I said, I think it's fatigue.

Oh - I did want to add Bug has started e-mailing her best friend from our old state. He is e-mailing back and so they are both getting great typing practice in a fun way! :)