The one (and only) good thing I can say about this burnout mode is that it is me who's burned out, not Bug. ;) That in and of itself is a blessing.

I think that most parents agree that we would do anything for our kids, and we try our best to live by that. I know I do! But man, it gets tiring! I know we don't have it nearly as bad as some people. I know that we don't have it as bad as some kids with EDS. But the fact of the matter is that my personal level of stress just keeps getting higher and higher. Some days I wonder how it is that I am supposed to help my daughter when I have nothing left to give?

We had a variety of appointments Friday. Psychology was first, and it went well. Really. The hard part is that 1) It was more missed school 2) We got more homework on feelings (journaling) and relaxation techniques 3) I found out we see the GI in less than a month, and we all know Bug isn't ready quite yet - which I'm assuming means extra therapy leading up to that point.

Next was PT - which again, was great! Bug had a good time, she was *really* tired, but she did everything he asked with a smile. We spent a whole hour in PT this time, and learned some new exercises. The hard parts for me: 1) We have to go back, and I thought we were done (I know, wishful thinking!) 2) We have to keep a daily PT log, and I stink at record keeping let alone staying on schedule. Now he'll know exactly what days we missed! LOL 3) He identified some other areas of concern, which while I'm glad to know it's still hard to hear.

Finally, we saw the OT. We love our OT, and were SO excited to try on Bug's new Silver Ring Splints (a full set of 10). Well, either her hands were swollen during measuring, and now weren't, or he was a bit generous during the measuring because she swells so much, or a combo. But regardless the rings were a bit on the large size. He adjusted them, but several still were a bit loose, to the point that Bug took them off an hour later because she was afraid they were going to fall off. I know she'll grow into them, and I think what I'll do if they aren't fitting better by Monday is try moving the fingers around. We should be able to at least get a few fingers working well. I'm still holding out some hope that they will fit better now that we are back in our typical environment which is warmer than his office. I guess we'll see!!!

I feel good about being proactive, and doing things like working on strengthening her muscles now before things get worse. I feel good about her learning more about feelings (and feelings about Dr's and being "different") and how to relax. I am just going through another phase of "I wish my child didn't have Ehlers-Danlos Syndrome" again. I suppose it's a private pity party, LOL. What's crazy about it is that Bug is doing well, and it is so obvious that these things are paying off. So why can't I just do them, and not feel sorry for her/us? Wahhhhhh....

Anyway, things are going well - and hopefully after our Christmas vacation I'll feel more relaxed and ready to be "supermom" again. Bug did tell me several times today what a nice Mom I was, and how happy that made her. :) She also told me yesterday how much she loves shopping and "hanging out" when we go to Iowa City. I think it's little comments like that which keep me going. That and her most amazing smile - there is just so much love and beauty in it and her. She is remarkable.

Talk to ya'll later! (that's hello to my southern friends!)

Wow - so much has happened in the last 24 hours! We had our meeting at the technology center on Monday and it was great. Bug was really tired that day, but she went and tried everything out like a trooper. We just took several rest breaks inbetween different technology trials. I'm going to have a separate post about that later, when I have my notes and can write names in case anyone else needs the information, but it was a great experience and Jim was a great help!

We also had our new ring splints made - all ten of them. It took about 90 minutes, and Bug was great for that as well. Everything fit wonderfully during that time, but after we left and got outside and walking around one by one her fingers started to swell and the rings came off. :( Since then we have been unable to get them back on, and the couple that will go on get stuck and make a suction sound when we pull them off. I am crossing my fingers that we can try lowering the temperature tonight while she sleeps and get her fingers down to where the splints will at least go on tomorrow. We'll see. If not, back to the OT we will have to go, although I don't know what to do to get them to swell while he's making them.

Yesterday was our IEP meeting. We left the IEP as it stood from last December, but brainstormed a lot to get data for the upcoming meeting. It was almost 3.5 hours we all talked. We had our 1st grade teacher, 2nd grade teacher, principle, OT, PT, gym teacher, gym student teacher, and school nurse. Things that are worth mentioning are that we are going to try allowing bug to go to lunch early with a different student (drawn from a hat) each day to allow her more time to eat, she will also be allowed to go to the library or computer lab as available (has to have an adult present) during resting recesses to read or practice typing, she is going to be given round stickers with numbers on them to put on her math worksheets so she won't have to write them until our technology is in place, the school is looking into getting some benches outside at the playground (we have none) so she can rest outside and be social with the other kids even if she is tired. Until then, chairs will be brought out as an option. She also will have an aid for state testing to fill in the bubbles on the test, and for multiple choice in the classroom she can use a marker to put a dot on the correct answers. Her bean bag chair is back in the classroom with a lapboard for if she needs to be in a different position while working. A camping pad is in the nurses office to go on the cot as a trial for when she needs quiet rest, in hopes of keeping her in school. I also was allowed to leave a pillow for her to use with it. Technology was discussed, but again, that will be in another post. :)

We also are going to be able to paint the special chair they got her, to dress it up. I'll take before and after pictures when the chair is finished being worked on. It's interesting!

And finally, the request for an air-conditioner went fine, we just have to wait for our medical note to get here. (hope it's soon!) :)

The first day of school was fun, and so far Bug hasn't crashed. I suspect tonight will be early bedtime though. She did work hard, and not being able to use any ring splints means extra work for her. But she was *very* happy, loves her teacher, and enjoys most of the kids in her class.

All in all, it's been a good couple of days!

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!