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!!!!

Today started out as a great day, Bug was going to go window shopping with Grandma and I to show us what she was wanting for her birthday. It's not for a couple more weeks, but her Grandparents wanted to celebrate with her while we are here in town. We started at Old Navy, and then needed to make a decision on lunch. Since it was Bugs special day, we asked her where she wanted to go. She just couldn't decide, and kept saying things like "normally I'd want Panera, but I can't have my favorite soup" and "I love Frappuccino's, but they have milk". Finally Grandma had a great idea to go to the Rainforest Cafe (Bug had never been there) and so we just went. Although she enjoyed the animals, she wasn't her normal cheerful self. Being that it was in the mall, we stopped in a couple of stores right next to it and then started walking to the main area of the mall. Bug just wasn't happy, and kept lagging behind. My Mom and I wanted to stop in a store and browse clothes for a couple of minutes, and she didn't want to. I made her come and stand inside, while I had a quick look. Normally I would have skipped the store, but I have to attend a business party on Saturday with my husband and didn't pack anything to wear. (duh) Anyway...

We continued about three more stores down, and stopped to get a directory. Bug sat next to me on a bench, and my Mom went to sit next to her. Bug got up and sat on the other side of me, which apparently offended Grandma. At that point Grandma announced that it was obvious that Bug wasn't having fun, and she wasn't having fun, so we should just leave. Bug said she didn't want to go home, but that's what we did.

Grandma gave Bug a lecture in the car about how it was obvious Bug was upset with her, and that was fine, but that we shouldn't be shopping if we were unhappy and when she was happy we could go back out. I just didn't say anything and neither did Bug. When we got back she went down to play with her brother, and I slept for a half hour. (escaping reality? LOL)

While I understand where my Mother was coming from, I also think I understand Bug. This was our first shopping trip out since going dairy-free, and she was upset because the things we traditionally do on those trips she couldn't. We make a big production about going to Iowa City to counter the fact it's to see Dr's. So we go shopping, to Panera (for broccoli cheese soup), and get a Frappuccino. We always do it. She looks forward to it, and it's taken us a long time to even find a place she would eat. (she won't eat so many foods) Being a vegetarian in a meat eaters world, I think I know how she felt. There are times I get grumpy because we are going out and I know I won't get to enjoy where we're going. It's especially upsetting when you don't get to go out often.

What stunk was how it all played out. In some ways I felt bad because I wasn't prepared for this. I didn't think about it ahead of time and have a plan. I could have just picked somewhere and not even asked her, which I do think would have helped. But - I'm still getting used to this too. Also, I do wish my Mom had dealt a little better. She just gave-up, and assumed that Bug was bitter that we went into a store she didn't want to go into. While there might be some truth in that, it wasn't the main reason. At least I don't think so.

Of course, I could be wrong. Every kid has their moments. I guess that's why I didn't say anything when Grandma had her lecture. I just let it play out. The truth of the matter is that it really doesn't matter what I think. Other people are going to see what they want to see or are used to seeing. Unfortunately, this means that Bug might get lots of lectures that she might not really need. So am I doing her a favor by letting it play out (safely) now so she knows how to cope, or am I letting her down by not sticking up for her? Grandma wasn't mean-spirited, but what she said was hard hitting on its own.

What a fine line it is balancing between living life as a "normal" person and protecting my daughter because she isn't "normal". While food was the problem today, tomorrow it might be an invisible ache, or just general fatigue. I know Bug is in the process of learning a big life lesson right now, that life isn't fair. That she is different. And that while sometimes it is ok to feel sorry for yourself, you then have a choice to make - to hide in a corner and let life pass you by or to put your chin-up and live for all of the other wonderful things God has given you. I can only hope and pray that she will choose to fight and see the good, and that I can be strong enough to set that example for her.

So, tonight we talked about making choices to move on after we feel bad. I think she understood and I hope she'll be able to talk to me about things like this in the future instead of just getting grumpy. And most importantly, I hope that she knows that above all else I love her and am on her side, even on the "bad" days. :)

I thought I'd pop in and give a small update since it's been a couple of weeks. Things are moving along nicely for summer. We've been practicing our OT stuff, hitting the pool, and having lots of family time. We've rented several games for the Wii, the interactive kind. Bug really enjoyed Carnival Games, and Playground Sports. I just have to say again how nice it is for her to be able to "play" games that she can't play in real life!

Currently we are up in the Chicago suburbs visiting her Grandparents. Last night we all went to see the Beach Boys at an outdoor concert. It was so nice, because we had lawn seats (meaning you show-up, claim a section of lawn, and put our your chairs, table, picnic table, etc) so Bug could stretch out and move as she pleased. I cannot imagine her being comfortable in normal seating, but she had a great time and was happy the whole 4 hours we spent there. I'm sure it helped that the kids who live next door to Grandma were in the spot next to us! :)

While we're here we are also planning to hit Milwaukee for an afternoon, and then head into Chicago another day to see the musical Willie Waunka and the Chocolate Factory. Combine that with the massive amount of shopping we've been doing and it makes for one fun trip!

Medical updates...
We got our allergy appointments rescheduled at the University of Iowa. We were supposed to see several people in the middle of the flood. I still need to make a couple more appointments but I'm excited to have allergy scheduled because Bug is asking for food allergy tests. She's been off of dairy most of the summer, and it has really helped with the stomach aches. The thing is, she's not getting lower stomach cramps, loose stools, or gas when she does have dairy. But she gets horrible stomach pain. Allergy? Lactose intolerance? Who knows... Nothing is ever clear cut and "by the book" around here. But she wants the allergy tests to see if she really can't have milk or not, so I'm jumping on it. I'm crossing my fingers she actually goes through with it when we get there. If she does, not only do I hope it provides some insight as to why nothing seems to help her stomach, but I also hope it is another leap forward with her anxiety. I sure do hate all of these little "unknown" pieces of Ehlers-Danlos Syndrome!

Another thing going on is she's had shoulder problems twice in the last two weeks. Once she was sitting on the shoulder and moved slightly, causing horrible pain/discomfort. She wouldn't even allow me to touch her to try to help. This morning she woke-up with something similar going on. It's been about an hour now and she still is hurting. Right now she's trying heat on it and she says it helps a little. Of course I forgot the childrens Advil. I think we'll have to run out and get some in a bit. I packed everything BUT advil. Figures!

I know I'm forgetting stuff, but I'm signing off and spending time with my family. I'll check-in later!