In less than a month we'll be having Bug's yearly staffing. Usually by now I'm combing the internet searching for answers to problems we're having or trying to find new ideas of things to try that might be helpful for her. However, this time not only am I sitting back just killing time, but I actually did something wonderful yesterday. I spoke to Bug's occupational therapist from the school and asked her directly where we were at. I said "please tell me honestly how you feel, I will not be upset if you don't think we need serviced any longer." If you have ever dealt with "the system" before, you know how risky a statement like this can be!

I think I took her a bit by surprise. She replied to me that she could continue to work with Bug on the Dragon Naturally Speaking, but beyond that she didn't see a need for OT services. I agree with this, and see it as a good thing! I told her I was perfectly happy to continue the Dragon at home on our own (especially since we are luckily not at point where Bug needs it). So - she is going to check with the Physical Therapist and see where Bug is with her. If she still needs servicing, we'll continue the IEP. If she does not, then we'll put together a health plan that addresses her medical needs and then they will keep an eye on her in case anything crops up.

I suspect if I had just shown-up for the meeting that the servicing and IEP would have just continued. But I honestly don't want to waste resources we don't need. I see it as a good thing if Bug is at a point where we can move beyond the IEP - as long as we are still able to have her medical needs met. I love her school and feel comfortable at this point whichever way it goes.

So what does this mean? It means that Bug is doing well! Yes, we are still having bumps in the road, but overall this is the best school year that she has had to date. She is keeping up with her peers, not needing a bunch of snacks or breaks, and hasn't missed much school at all. I hope that continues all winter! LOL We are not due back at the GI until near the end of school, we don't see the geneticist this year, her ring splints are still fitting great - so no need to see the hospital OT, we haven't needed any phyical therapy at the hospital, her allergies and asthma are under control, and while she is still seeing a therapist to deal with the medical anxiety - she is making lots of progress. All wonderful news!

Of course, we're not "home free", but I am so thankful that we seem to have gotten to a point where things are under control. The accomodations at school (special chair, beanbag for resting, grips for writing and coloring) help, her tummy hasn't acted up even though we reduced her medications, and her energy levels are up. We are still struggling a little with how much lactose she can tolerate (she is trying lactaid at school for the first time today with some milk) but that's easy compared to what we have been through!

So - I see this staffing as a milestone. It is the first time I have seen my daughter thriving to the point where I don't feel I need to be researching and preparing for this meeting. I am SO thankful for that, and I have faith that her support team will help make the right choice as to what she needs now. :)

Tonight Bug was sitting playing a video game when she suddenly said "ouch - my thumb just popped out". To my amazement, she then tried to bite the joint. When asked why, she informed me that "this is what I usually do when this happens." Mind you - this is all new news to me!

Apparently the gnawing on her thumb wasn't working as she came and sat on my lap telling me how much it was hurting/bothering her. I tried to gently manipulate it, but gosh darn-it, I have no idea how to relocate a thumb! Where is the instruction manual for that? LOL Anyway, she took her thumb back, rubbed it a little, put it back in her mouth and said "got it!" So I guess she knows better than I how to handle the situation. It's a weird way of doing it, but if it works, I guess that's ok, right?

I was surprised by two things. First of all that this has been happening for awhile and that I had no idea! Secondly, that she knew how to deal with it and thought it wasn't a big deal. Painful, yes, but something to freak out about? No. To her, it's annoying, but "normal".

I cannot believe that I have not posted since August - but I just didn't feel like blogging. Then suddenly today I felt like sharing again, so here I am.

Let's see, since my last post Bug turned 8 (WOW - she was diagnosed at 5), she started 3rd grade, we did lots of fun family stuff and she's now completed her first quarter at school. Report cards and teacher conferences will be next week. Gosh, time flies!

She is doing well in school. The PT and OT are still seeing her although I'm not sure how much. She is involved in Girl Scouts, taking vocal lessons, and she is about to finish her "cheerleading" class. It is very low key, no jumping or gymnastics type of stuff. Just chanting and clapping. She is asking to take swim lessons again, but she also wants to go to the after-school program at church, so I just don't know how we could fit all of that in! I am happy that she is involved and finding activities that she enjoys and are healthy for her.

Now the not as fun stuff. She sprained her ankle in gym class a week ago, by tripping on the floor. Whoops! :) I think most EDS'ers see the humor in that. EDS'ers tend to be a bit less coordinated than the general population. So, she's in an air cast splint until the end of this week. It seems to be healing up nicely and she is now walking "normally" on it again.

As some of you know we're having some issues with her speaking up for herself and her needs. She didn't ask for any ice when she injured herself, even though she was hopping around all day at school. The teachers thought she was fine because she didn't complain, which she wasn't. I did speak to her main teacher the next day briefly and let her know that Bug isn't a complainer, but I also spoke to my daughter and stressed it was up to her to take care of her needs. That she should always ice any injury. I thought she got it, but then two days later she had another incident.

Bug came home and was telling me how badly she had to go to the bathroom at school, but that she couldn't because she'd loose a "coupon". I asked if it was close to recess (when they wouldn't loose one) and she said no, she had to wait a long time. Upon further questioning, I found out that she didn't even ask the teacher to go, she was just assuming that because that is what the teacher had said to the class in general at the beginning of the school year that it also applied to her. I explained that she could go whenever she wanted because she has a Dr. note, and I asked if she wanted me to talk to her teacher. She got really upset and said NO!

So - I think we have a bit of an issue right now with not wanting to draw attention to herself, or wanting to make herself any more different than her peers. I suppose I knew it would happen at some point, but boy, it stinks. I can't follow her around everywhere making sure she gets ice packs and asks to go to the bathroom, but I finally have her off of miralax and I don't want to end up back on it. Ugh! Anyway, we are going to start going back to her therapist again and I am going to mention this and see what her thoughts are. I don't want to make a huge deal out of it but at the same time I want the door to be opened so that Bug can know she has someone to talk to about this stuff (besides me) as she gets older. I hate having to go to therapy, but at the same time I know if we don't deal with the medical anxiety now or the being "different" now there is a good chance it will only get worse as she gets older. But the having to leave school early and driving over an hour just for therapy sucks, even though I really like her therapist. Wahhh, listen to me complain. I should just be thankful we have a good therapist, right?

We are also in the process of trying to find acceptable clothes for winter, which isn't easy when you are looking for items that are easy to get over your head, pants without zippers or buttons, coats with easy zippers, etc. Plus, it has to be "trendy" because we're at that age. ;) I have managed to get two pairs of jeans that have no zippers or buttons which are very trendy (complete with sparkles on the pockets) but that's been it so far! I am going searching again tomorrow and hope to find some more clothes. If I can't she'll end up with several pairs of the same thing, which is better than not having any jeans. We're tired of living in sports pants/sweats.

So, overall things are going well. Sometime in the next month we should be having our IEP meeting and I'll get to hear what the plans are for the upcoming year. Should be fun, right???

Oh - I almost forgot! We see our new GI on Friday, so cross your fingers we all get along! Ok, I'm done now - for real! I'll try to update again soon!

You know, I just hate how you think things are difficult and then something else comes along and just proves that they could be worse! Tonight Bug was ok going to VBS knowing that she might not be able to eat the snack (we packed one for her in case) and that she couldn't have a snow cone. She was fine with that. But when we picked her up, she was a basket case and refused to get into the car unless we let her get a snow cone. This isn't my child, mind you. So, I put my mean Mom hat on - you know, the one I typically only have to use with my older son, LOL, and told her she could have a plain one and a treat at home. She huffed and puffed and finally went and got it, returned to the car, and was back to her happy old self. (you have to hate self-pity, but I certainly can relate)

I felt tired from the battle, sorry for her, and yes, a bit sorry for myself again. I was thinking of how I was going to get her bathed, her hair blow-dried, and her non-dairy cupcakes made for summer school all at a reasonable hour. It was already almost 9 by the time we got home from Vacation Bible School. So, I went about getting her in the bath, washed her super cute first short haircut she got this past week, and went and sat on my bed waiting for her to finish soaking. Next thing I know I hear her choking, and I run in and start banging on her back. As she's struggling, she manages to say "inhaler". Suddenly, the light went off and I started screaming as I ran down the stairs for my husband, screaming with no one answering. Our master bedroom is in the attic and I made it all the way down to the first floor still screaming with no answer. As I'm banging around the kitchen looking for the rescue inhaler, I'm still yelling, and finally my husband annoyed shouts "what!" from the basement. He was putting in the laundry. I'm yelling and banging and not finding a darn thing and somehow I finally get across to him it's an emergency and he comes up. Why he didn't realize it as I came running down two flights of stairs screaming at the top of my lungs I don't know, LOL.

Anyway, I yelled for him to go watch Bug while I tried to find her stuff. He runs up and I finally find the emergency bag. I run back up to the attic, she's still not able to really breath and her skin coloring was getting all patchy and "off", and I put the mask over her face and push the button on the inhaler sending in the meds. She started getting better, I pushed it again and she looked even better still. A third time and I was comfortable stopping. She starts breathing more normally, and I asked what happened. "Nothing" she said. "I just was laying here and then I couldn't breathe."

Up until that moment, I was still convinced she had choked on some water. But, there was no denying it anymore, she had a full-blown asthma attack. The first one we've ever had that bad. And she hasn't even used an inhaler in over 2.5 years. What's up with this?

So - add asthma back on the list. I thought maybe she'd outgrown it, but I guess not. The only thing I can think of that might have triggered it was our dog went to a new groomer today which was in a vet. So she might have been exposed to some cat dander. However, I have noticed her barking off and on this week, but had sold myself on the fact that it might be a summer cold or something. I guess not.

Our new allergist is just going to love us. Boy oh boy, what a visit it will be next week! Well, I'm of to attempt making these dairy-free cupcakes, if anyone deserves and awesome birthday tomorrow it's my Bug!

This is more for my own note keeping, so sorry if it's boring. :)

Bug has had horrible tummy pain both last night and tonight. I suspected that it came from the snow cone she had at vacation bible camp last night, so I warned her tonight that it might be the problem and to try another flavor and we'll know for sure. Well, she had Blue Raspberry last night and tonight it was Cherry. Both had the same result. About 15 minutes after finishing her treat she had horrible pain in her right side, just under the rib cage. On top of that, she was telling me her tongue was numb after eating it. I looked in her mouth and it did not look swollen. I ran my finger along the top and she said she couldn't feel it. Then I scraped it a few times and she still couldn't feel it. (according to her) I kind of pushed my nail down on her tongue and she went "ow"! so she felt that. She told me it must be because of the snow cone being cold, but her tongue did not feel at all chilly and it had been over 30 minutes since she finished her treat. I'm a bit concerned and will bring it up at the allergy appointment in just over a week. We already have an epi-pen for her due to tongue itching and swelling in the past, but we still don't know anything about what caused it. So, maybe this will help us get a step closer to some answers. Of course, maybe tongue numbing means nothing, I just don't know.

Back to the stomach pain. We could not get rid of it last night. She drank a lot of water, had a small snack, and just whimpered in pain until she finally fell asleep. She still felt off this morning when she woke, but after getting up and eating (and having more medicine) she felt better and headed to school. This is different than most of the pain we've been having in recent months. Usually the pain is above the belly button but below the sternum. Sometimes it is around the belly button or goes up above the sternum. Again, I think this might be important for our GI appointment so I want to write it down while it's fresh in my head.

Also, she has complained a lot more about feeling like things are "popping" this summer. Those are her words, not mine. This is a 7 year old, so what a pop is to me might not be at all what she is talking about. That makes it tough. On top of that, she gets upset if I ask too many questions sometimes, because she feels I should know what she is talking about - that she is being perfectly clear. LOL So - all I know is that sometimes she hears a pop (as do I) and there is pain at the same time and after. Other times she says she pops but I don't hear it, and she says she feels and hears it (and it is hurting). If that is the case, then the pop isn't very loud. And of course, there are times when she pops and we hear it and there is no pain. She's had popping in her knees more recently, her foot/ankle?, shoulder, and elbow. Those are the places that I can remember right now. I think they are the most common.

Luckily, her hips seem to be pretty happy right now. I think we've only had one minor flare-up since she did her physical therapy last winter. Woo-hoo!

Another thing I want to remember. She seems to have regressed with being able to get her shirts on and off by herself. She has better luck getting them on, but still struggles with that. Getting them off by herself is rare these days. I don't know what to do about it other than talk to her PT when school starts and see what her thoughts are. It still amazes me how quickly she looses a skill set if it isn't practiced every day! With the shirts it seems to be the difference between the loose fitting shirts of winter and the more form fitting shirts she has been wearing over the summer. Just that difference in clothing has made it very hard for her to change her shirts.

Anyway, I think that's the bulk of it for now. Ehlers-Danlos Syndrome is such a complicated condition!!!!