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!

It's hard to believe that school has been out for over three weeks, it seems like we just finished! During that time we've been working on Dragon Naturally Speaking 9 Preferred every few days. I got really lucky and found it brand new on Amazon.com for $139.99 plus free shipping, and a rebate if you have an older version of Dragon. I don't, but I'm going to get one used for under $20 and mail in the $50 rebate still saving another $30. What a wonderful deal!!!

We've been making great progress using tips that Jim at iCater has given us as well as our AEA OT's feedback. Some of the things that seem to be helping the most are making sure Bug speaks slowly, having a USB microphone, and training missed words about 7 times before attempting them again. I find this helps because it allows for variances in Bug's speaking patterns. We also have a separate morning and evening profile, as she seems to speak much more clearly in the morning. Our OT suggested at our last visit that we do a volume test each time we use the program so we're going to start doing that too.

Another tip is creating a folder full of documents that have commonly used vocabulary. For an adult you wouldn't need this as much (I wouldn't think) as Dragon scans your computer and e-mail for commonly used words. For Bug, she isn't the one using my computer and she's only 7, so I made the folder and went online and searched for "commonly used 3rd grade words" then 3rd grade spelling words, and finally vocabulary. After than I went backwards and looked up second grade, first grade, and kindergarten. When I get a little more time I'll do forth grade as well. By filling a folder with those words and pointing Dragon Naturally Speaking to it we're hoping it will help it learn Bug's words more quickly. So far so good!

Before Dragon arrived our OT had Bug practice reading sentences into a tape recorder. She would then play it back so Bug could hear and decide if she was doing a good job speaking clearly, too loudly, etc. It was a great exercise and I highly recommend it for anyone who might be thinking of working with their child on voice recognition software. We also had the most success and interest when we made a sheet of sentences about Bug - what she liked, funny things about her brother, etc. She enjoyed reading them and I think that helped keep her enthused while we have been working some of these glitches out.

What we've been working on lately to help train the program have her read stories to it. Currently after she reads I go back an edit the file, save it, and save her user profile. As she gets more accustomed to the program we hope to have her do the editing with voice commands. But first it has to know her voice better. :)

While we still have a long road ahead of us, it is really promising. Dragon Naturally Speaking is understanding her when she uses the tricks we've taught her, and it isn't doing a lot of jibber jabber like when we first tested it. If we can keep her interested and happy training the program (and training her way of speaking to the program) I think this will be a wonderful tool that she'll be able to use on her own before too long. This could be a great tool for other kids with Ehlers-Danlos Syndrome or other arthritic conditions that effect their fingers or hands. It just takes time and patience!

Ok ladies and gentlemen - drum roll please!!! Here is the article that appeared on the FRONT PAGE of our local paper, complete with two awesome pictures of my daughter! I am so excited about this - yippee! The only complaint I have is that they subtitled it a disease, which it isn't, but other than that is a great article for the general public. :) Now, because this blog is so personal and does mention cities and other personal information, I have to edit out a few identifying items in the article. You know, our real names, city, that kind of thing. I hope you understand!

By L. Jacobs
(Mom's name)'s 7-year-old daughter looks like any other healthy child her age, and that, (Mom) said, is part of what makes it hard for others to understand Bug's Ehlers-Danlos Syndrome.

"Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen, " (Mom) explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you."

The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic.com.

Bug was diagnosed at age 5.

"She was in kindergarten and (name) was her teacher. She noticed that she was having problems with some fine motor skills, and the thing that really set off the alarm was that she couldn't open a water bottle even though the cap wasn't on tight," (Mom) said.

After meeting with the Area Education Agency's occupational therapist and her doctor, Bug was referred to a connective tissue specialist for diagnosis.

Since that time, Bug has worn ring splints to provide stability for her fingers.

"Her fingers without them basically flip straight back, so it makes pinching really difficult for her - picking things up. " (Mom) said. "They have been a Godsend. They make the biggest difference, and she wants to wear them because she knows they help."

Until this year, Bug wore 10 plastic splints around the top joints of her fingers. She now has a silver set dolled up by (name), a jewelry designers and friend of (Mom)'s, who added pink and purple beads to the bracelets holding the thumb splints in place.

But mostly, (Mom) said, "It's all about preserving her body for the future. The more careful we are now, we're hoping the least amount of pain she'll have as she gets older, which is hard because second-graders want to play and be active. "

"It's just a constant struggle. What is OK and what isn't?"

Cans she do a jumping jack in gym class, jump on a friends trampoline or go to a roller-skating party?

Those are the questions (Mom) and her husband (name) have to ask themselves and answer for teachers and friends.

"We're all learning as we go because it's not something anyone [here] has really dealt with before," (Mom ) said. "We're blessed in a lot of ways that the schools here are so small because being at (school name) and finding out in kindergarten, we have a very close relationship with everybody there, and they're all on the same page. "

(Mom) said a lot of time has gone into making arrangements at school.

"She doesn't necessarily have the stamina that the other students have, but her cognitive capabilities are the same, so we've spent the last couple of years trying to find ways for her to have the same cognitive stimulation and same output as the other students, which is difficult when your hands are constantly fatiguing," (Mom) explained.

Right now, Bug is experimenting through the University of Iowa with assisted voice technology as a potential tool to help her through third grade next school year.

Through it all though, Bug remains "an amazingly positive and caring little girl, " (Mom) said.

"So many awesome people have touched our lives," she said. "I don't think Bug would be as well-adjusted and as happy without them."

Today was quite a day! After posting to Girl, Dislocated (my favorite blog) last night that I'd given up on our Ehlers-Danlos article getting published in the local paper I found out today that it is! Our local paper sent out a photographer to get a picture of Bug. She ended up taking a ton, some doing a puzzle with her Grandmother, some with her toy poodle, another in her room. I have no idea what she will use, or even what the article says. I don't even know what angle the article is taking since I tried to give them as many angels as possible. It doesn't even matter, I'm just pumped!

To top things off, this came on the heels of an interview with a friend of ours who is finishing her teaching Masters. She has a paper to write on either a person with a disability or a parent of a child with a disability. She had asked me if I'd like to be interviewed and of course I jumped on it. She wrote some awesome questions, and I spent over an hour answering them. The coolest part was the reason she asked me was to help us educate other people about Ehlers-Danlos Syndrome. She knew that few people had heard of it and decided that it would be great to share something different with her class and in turn help Bug and I. I just thought that was great. I am really excited about this as well since her paper is being shared with people in the educational system it could reach some incoming teachers (as well as current ones) and let them know about some of the ways we've worked accommodations out for Bug.

I have never advocated in these ways before. Depending on how it turns out I might try to do more of it. :) It's amazing how I've moved from worrying about educating myself, to educating our school, to the AEA, to working on this blog, and now have done two interviews. I would have never guessed this is the path I would be led down even a year ago. It's just my desire to help others like my daughter just keeps gaining more momentum and so far I'm still embracing it and seeing where it leads me. Of course, I could change my mind after I see the article! LOL