tag:blogger.com,1999:blog-77551033405650423422012-01-23T20:05:18.265-06:00Learn about Ehlers-Danlos Syndrome in children, and how it effects our family.BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.comBlogger881100tag:blogger.com,1999:blog-7755103340565042342.post-53997243795180100252009-12-18T23:55:00.003-06:002009-12-19T00:22:59.276-06:00

I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well.Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping. She also is still in two ankle braces

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-12985646043656459852009-09-24T22:44:00.002-05:002009-09-24T22:55:08.940-05:00

I knew it would, but I didn't know when. I also didn't know it would be so obvious, or how it is that I under-estimated Bug so much. We've spent so much time teaching her to advocate for herself, how on earth did it never cross my mind that she would tell me when the time was right?Tonight, Bug asked me to have to school get her a laptop so she could either type or speak (Dragon Naturally

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-60321071455714404952009-08-22T01:00:00.003-05:002009-08-22T01:27:45.584-05:00

I promised to do a Bug update, so here goes!Bug has been having stomach pain since August 9th. It has been severe enough for her to invent a whole new level of pain on her scale. :( We tried everything. Ibuprofen, pepto, extra dose of generic prilosec, the IBS med that I wasn't going to try, and upping her Miralax. (just in case). NOTHING has worked. The pain never fully goes away, and gets worse

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-44699331158485512322009-08-21T22:45:00.001-05:002009-08-21T22:57:29.131-05:00

Ok folks, I am straying from my normal talk about Bug, and yes, there is plenty to talk about. Tonight, I am hopping on just to say something about me. While Bug was getting her ring splints today at the U of Iowa I mentioned to Keith (the OT we've seen 4 years now) that I didn't know what a "normal" range of motion was for a finger. He looked at me, and I said, "My fingers have always hurt when

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-80066232292379252322009-08-13T15:56:00.002-05:002009-08-13T16:00:53.526-05:00

Hi everyone!One of Bugs EDS friends (in fact, her only EDS friend) is in a contest for a local auto dealership. She sang and is in the top 5. Now, she needs votes to stay in and hopefully win!As we all know, EDS keeps kids from doing so many fun activities and sports. Singing is one of the "safe" activities we can do. So lets all band together and vote for Samantha Hale, she sang wonderfully and

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-29755785043240642932009-07-23T14:31:00.001-05:002009-07-23T14:35:56.467-05:00

I am going to be lazy and just post here what I sent to one of our EDS support groups. I am just not feeling like writing it all over again right now. :) I hope it makes sense! Obviously there are a few things that were already addressed in the blog, but there's also some stuff that wasn't. The PT part is one that is now outdated, since insurance is telling us no more for the ankle... Anyway,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-47078956945947662562009-07-09T18:23:00.007-05:002009-07-09T19:12:51.108-05:00

At least Blue Cross, Blue Shield seems to believe so. I am bitter to say the least.I had written our PT a long list of questions after our Dr. appointment last week, asking about how to handle our PT from here on out, including his recommendation that her other ankle needed PT. I had brought in his script last week and dropped it off, because I knew we were almost out of sessions. While in the

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com5tag:blogger.com,1999:blog-7755103340565042342.post-47371450598221888332009-06-25T15:28:00.002-05:002009-06-25T17:27:04.348-05:00

We saw the GI last week for Bugs 6 month follow-up. I explained that while she has been doing well with the reflux, that she was still having these episodes of severe stomach pain that even additional reflux meds don't touch. I reminded them that our food allergy tests were negative (for the things they tested for) and that I still thought there was something else going on but I didn't know what.

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-17475949731125106122009-06-15T00:50:00.002-05:002009-06-15T01:15:19.303-05:00

Schools out for summer, but it sure doesn't feel like it! We have been going non-stop since it got out 10 days ago. We've had some appointments and PT (that will be another post - but it's all good) and Bug has been having musical practice almost everyday now. The practices last about 4 hours, and so she's been loving it yet sleeping like there is no tomorrow! The musical is this coming M, Th,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-11142801544002641262009-05-30T19:34:00.001-05:002009-05-30T19:40:27.622-05:00

This is just more of a note for me so I can remember the next time we see our Dr. Bug had something hurting in her right wrist again. She said it wasn't feeling like it did the last two times (horrible pain, like something was out of place) but it hurt and she didn't want to use it. This occurred during art class while using chalks. She went and told the art teacher, who asked Bug to describe

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-4710726606757307432009-05-24T17:42:00.003-05:002009-05-30T19:41:42.669-05:00

She doesn't know! :) Actually, what she said was she believes that it was a small bone in her foot that must have moved out of place, and slid back in. She said that anything muscular shouldn't have suddenly felt right again, or never come back. It's now been 6 days since it all happened and not once has Bug had any pain or limited motion since her foot/ankle "suddenly felt right again". I am

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-55091471081439802882009-05-19T20:56:00.002-05:002009-05-30T19:42:17.155-05:00

Well, Bug fell asleep last night still icing her ankle. That was 2.5 hours after I first learned of the pain. My husband ended up carrying her up to bed as she still couldn't/wouldn't put any weight on it.When she got up this morning she was still in pain, but not as much. We had her put her old ankle brace on (because of your feedback), and sent her to school limping while crossing our fingers

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-6200934528937185052009-05-18T20:16:00.007-05:002009-05-30T19:43:00.764-05:00

Tonight has brought more ankle problems. Here is the letter I just finished e-mailing to the PT. "Tonight Bug's ankle started hurting her really badly. At the time it started she says she was sitting down. However, I know that she was going from sitting to standing over and over during play practice, and since I wasn't there I cannot be 100% sure when exactly it happened.Anyway, when I arrived I

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com5tag:blogger.com,1999:blog-7755103340565042342.post-17900034780141479822009-05-15T21:27:00.003-05:002009-05-30T19:43:19.701-05:00

Yippee!Bug and I drove 45 minutes today to try on new ankle braces. Guess what? The very first one fit perfectly, and she LOVED it! She was all smiles, didn't complain once, and I said to the guy "see, I told you that she's a good kid!". He agreed.The difference between our experience today and the one a couple of weeks ago is night and day. I cannot believe what a difference it can make just

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-28514228594892418922009-05-12T20:23:00.003-05:002009-05-30T19:44:06.979-05:00

Today I got an e-mail not long after I got to the classroom I work in letting me know that Bug said her wrist felt like it was out of place and hurting. The teacher had her resting and icing it, and I let her know to call me if it wasn't "fixed" in 45 minutes. I know that sounds like a long time, but back in Feb. this year something similar happened and we went to the ER. After sitting there for

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-90698460829969887722009-05-10T21:35:00.002-05:002009-05-30T19:45:22.796-05:00

I just wanted to drop a quick note in here that Bug completed her second Arthritis Walk a week ago! She walked almost 3 miles, with a couple of breaks, and had a wonderful time. The great news was that this year our team was 15 members, compared to 5 last year. Considering 13 of us live 1.5 hours away or more, that was AWESOME! I was so happy to have so many people take the time out of their busy

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-82220656107078796472009-05-06T19:13:00.005-05:002009-05-30T19:46:53.893-05:00

So - after my rant I went to work to get things fixed for my darling daughter. I called my contact at Blue Cross, Blue Shield first thing the next morning and told her what had happened. She was appalled. She hardly let me finish the story before she was telling me she was calling the president of the prosthetics company to tell him what had happened. Sure enough, ten minutes later she called me

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-260061215675131642009-05-06T18:54:00.003-05:002009-05-30T19:47:37.746-05:00

First of all, I just wanted to say THANK YOU to all of those who have left comments on my last post, and posts prior to this. I rarely respond, but I always read them. I often feel like this blog is every bit as much therapy for me as it is medical notes, or sharing to let others know they are not alone. While I would never wish Ehlers-Danlos on anyone, or on any one's child, there is so much

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-44158460636675697842009-04-30T18:19:00.006-05:002009-05-30T19:48:06.908-05:00

Warning - this post is only complaining, ranting, and worse. If you don't want to hear it, wait for my follow-up with the good parts of the day.....You know what I hate? I hate people who talk to my daughter like she is stupid. My daughter is smart, funny, and very good about trying to explain what is going on with her body. Any person or Dr. who takes a few minutes and speaks directly to her (

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-48755481530839912892009-04-29T22:40:00.003-05:002009-05-30T19:48:36.398-05:00

I find myself constantly trying to figure out which of Bugs medical issues is the root problem, and which ones are fallout from that. Currently we are dealing with headaches and sore throats again, which could be from the following:Acid Reflux. Burns the throat and can cause headaches in some people. On meds, but maybe they aren't working?Allergies. Boogers. Goo. Drainage. Yum... But wait! She's

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-68241191063182582562009-04-12T16:21:00.005-05:002009-05-30T19:48:48.585-05:00

While this isn't directly related to EDS in ways it is. You see, one of the things I worry about is my daughter's dreams. Will she be able to accomplish whatever it is she dreams of doing? I know other parents with Ehlers-Danlos Children wonder the same thing.When I saw this video today, I actually started crying. It's from the British show "Britains Got Talent". It's a clip of a 47 year old

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-57972583184393910542009-04-01T19:49:00.005-05:002009-05-30T19:50:08.917-05:00

As I mentioned in the post before this, our local PT offered to come to the school and meet with our PE teacher, principle, and the AEA's PT. This meeting was "unofficial", held to get a better idea of what is going on at school in PE and what the AEA PT was doing with Bug. It was also so our PT (Julie) could share her concerns about Bug and what she is struggling with.First of all, I need to

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com5tag:blogger.com,1999:blog-7755103340565042342.post-12301762809906438992009-04-01T19:22:00.001-05:002009-05-30T19:55:11.670-05:00

Wow - it's weird looking back and realizing that what has felt like a couple of weeks of ankle issues has been going on for almost 2 months now. It's hard to believe that with all of the time that has passed we are still having such a hard time. Thank you to those of you who wondered what's new, and pointed out I haven't updated lately. It's nice to have a kick in the butt from time to time! :)So

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-19919795889347058742009-02-23T20:20:00.005-06:002009-05-30T19:55:54.523-05:00

I just LOVE this video - it makes me smile every time I see it. For some reason I find it even funnier now considering I'm using it in a post on physical therapy. I must have a crazy sense of humor!So, here's the update. Things had been going along just fine until right after Valentine's Day. The suddenly Bug started falling. The first few times it was once or twice, then last Tuesday she fell

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-10837455891033315392009-01-26T18:10:00.003-06:002009-05-30T19:56:49.896-05:00

First of all, I want to say how happy I am that my online buddy Girl, Dislocated is back. I've missed her blog posts dearly! :)Next up, I suppose I owe a couple of updates on Bug. She had a wonderful Christmas full of family and love. Ok, maybe she did get a bit spoiled. But you only live once, right??? LOL Her favorite gift this year was to the entire family, it was Rock Band 2 for Wii. I know

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-70297968221225882922008-12-15T20:32:00.007-06:002008-12-15T21:17:51.953-06:00

So - Bug has now been off of dairy since last Thursday night. She has not had a stomach ache since waking up with one Friday morning. I find this very interesting, although I have to wait longer to be 100% sure they are gone. Of course, she was off dairy all summer and also didn't have stomach aches. Which takes us back to the original question I had walking into our allergy tests this fall. Is

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com6tag:blogger.com,1999:blog-7755103340565042342.post-19470499643616370882008-12-10T21:38:00.006-06:002009-05-30T19:58:57.933-05:00

You know, it never fails that I think we are past something and there it comes again! :) We have been battling stomach problems again for almost three weeks now. I'm at the point where I feel like quitting again. I know, I know, you've read that before. I burn out, take a break, read like crazy, get hopeful, and then crash again. No, I'm not bi-polar. I'm just a Mom who wants to have her daughter

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-68766758394934347612008-11-13T12:51:00.001-06:002008-11-13T13:10:18.374-06:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-40601201437450107762008-11-12T18:36:00.003-06:002009-05-30T19:59:39.505-05:00

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/

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-51597033375128465892008-10-15T12:51:00.002-05:002009-05-30T20:02:22.863-05:00

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,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-30874041491899507922008-08-06T21:34:00.002-05:002009-05-30T20:03:28.237-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-8197945184510677382008-08-05T21:28:00.003-05:002009-05-30T20:05:12.934-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-42307268788839387692008-07-17T00:16:00.004-05:002009-05-30T20:06:29.498-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-90950738885656461302008-07-15T09:34:00.001-05:002009-05-30T20:07:24.866-05:00

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"

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-23156856759902423712008-06-27T15:55:00.005-05:002008-06-27T16:56:09.685-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-23368641528865729602008-06-12T20:59:00.006-05:002008-06-12T23:15:54.038-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com4tag:blogger.com,1999:blog-7755103340565042342.post-90244138293760996062008-06-11T20:35:00.003-05:002008-06-11T20:51:33.452-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-40810090872459603912008-05-27T18:45:00.006-05:002009-05-30T20:10:22.134-05:00

This past weekend my husband and I got into a bit of a disagreement. Bug was invited to a sleepover birthday party, and they decided the night before that they wanted to take the girls bowling as well. Obviously, this was not a good choice for her, as holding a bowling ball is 1) Too heavy and 2) Not good for her fingers 3) I'm not even sure the splints would fit in a ball without getting stuck!

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-87019923384539882652008-05-22T09:29:00.002-05:002009-05-30T20:11:16.958-05:00

Yet another year has just flown by! Bug is finished with second grade in a week and a half. I just can't believe that, it seems like she just started school. Of course we are busy with end of the year stuff. I have meetings with the AEA's PT next Tuesday after school, and the OT Wednesday morning. We are supposed to talk about where Bug is at with her exercises, what we should be working on

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-19357044135706385332008-05-12T16:02:00.003-05:002008-05-12T16:40:24.654-05:00

I as usual have updating to do in this blog, but for now, all I want to do is share what the Mother's Day card my daughter made me in school said.The outside read:Mom I love you!Inside:And here's why! (now is where she gets to write on her own)I love you cause you help me when I struggle and you also help me get better when I am sick. and usually you let do what I want to do you are very nice to

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-41724061629792032162008-04-04T12:47:00.001-05:002008-04-04T12:56:49.092-05:00

You may or may not know this, but May is National Ehlers-Danlos Awareness Month. This year I decided that it would be a great idea to support Bug by joining in the Arthritis Walk. I looked at the groups in Iowa and found that there was one walking on May 3rd, and so I decided that I was going to do it!I talked to "Bug" and she is going to walk with me. I also have a good friend who said she would

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-65458861222106745092008-03-27T12:33:00.003-05:002009-05-30T20:12:00.194-05:00

I think I posted a bit ago about the custom bracelets my friend made Bug to hold her silver thumb splint in place. If not, what she did was add a clasp to both ends of the silver bracelet that came with the splint so it could be removed. Then she made new bracelets and added bead charms in Bugs favorite colors to them to "dress" it up. We have several other ideas like one that would be able

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-54342400535252730872008-03-27T10:20:00.003-05:002009-05-30T20:12:29.014-05:00

I just wanted to take a minute and thank all of you who continue to post ideas, suggestion, and feedback in this blog. There have been so many good ideas that have come along, and I really do read and try a lot. Someone just posted a comment to an old post about Bugs mouth rash and how maybe it's from the container that she was drinking out of. What a great suggestion! That was too far back to

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-90878134220022021712008-03-11T11:56:00.006-05:002009-05-30T20:13:43.125-05:00

I'm tired of blogging and complaining, but gosh, I am so tired of people not understanding. Now, in their defense, Ehlers-Danlos Syndrome is not the easiest thing to understand. But why when information is available, or when I've even given it do they still not believe??? Or understand? Or question what the experts say?Yesterday Bug came home from school around 1:30. I got the call around 1 that

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com5tag:blogger.com,1999:blog-7755103340565042342.post-35853649828333626352008-03-03T22:11:00.001-06:002009-05-30T20:14:32.670-05:00

Haha - I know, "Wiiiiii" sounds like a silly title for a post! However, that's what this is about (in part). The Wii. I don't think I've taken the time to tell you guys about how much we love our Wii. Besides the fact that it is so much better than any other game system just because it makes kids move - it has opened up so many doors for Bug that were not open to her before. For example,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-55527722384180972322008-02-29T22:13:00.002-06:002009-05-30T20:15:16.278-05:00

I really don't feel like I have much to say right now, but I wanted to say we are still out here! :) I have been trying to get caught-up on some of the comments you guys have been leaving, if I haven't responded yet I will try to in the next day or so.Bug is doing well, she's been struggling with her tummy a lot lately. I have an e-mail out to the GI about what we try next, if anything. I think

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-20226150706290747592008-01-17T23:57:00.001-06:002009-05-30T20:16:39.634-05:00

Ok - warning, this is mostly for my medical notes, but as usual, you never know when it might be useful to someone else! :) Plus, I am finding going back in my own blog to be very helpful in tracking how Bug's symptoms have played out over the last 1.5 years.First off, Bug missed her stomach medication on the 6th. She had it again on the 7th, and has been on it normally since. Starting on the 6th

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com6tag:blogger.com,1999:blog-7755103340565042342.post-28704277691702425972008-01-07T17:31:00.002-06:002009-05-30T20:17:03.332-05:00

This is just a really quick post to share the picture I took of Bug's Silver Ring Splints (SIRIS) . Keep in mind she is just 7 - so these are tiny rings! :)They are so beautiful though - and have been wonderful with all of her swelling finger issues. I just have to say again, if your child has hypermobile fingers, do not let anyone tell you that they won't wear splints! Bug has worn them since 5,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com8tag:blogger.com,1999:blog-7755103340565042342.post-19026043835609144362008-01-06T14:41:00.001-06:002009-05-30T20:17:46.675-05:00

As usual, it's been awhile since I've posted. We had a great Christmas spending it with Grandma and Papa. Both of the kids had fun, and we even kept up with Bugs PT and relaxation exercises. I was pleased with that. :)Bug has really enjoyed working on her mini-tramp. I got one with a bar on it to make sure she has the extra stability or something to grab if she needs it. Several of her PT

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-74313930455479154022007-12-15T21:13:00.001-06:002009-05-30T20:18:34.422-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-36114239640589801602007-12-03T17:37:00.002-06:002009-05-30T20:19:13.261-05:00

First of all, I'm going to do what I'm soooo good at, backtrack a bit! After my last post about everything being all set to go I got sent back to zero due to someone who couldn't speak English. Now, don't get me wrong, I couldn't speak another language to save my life, so I admire people who can. But, do not work in a customer service field where you are gathering important information until you

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-7161559920145948422007-11-20T17:19:00.001-06:002009-05-30T20:20:41.091-05:00

In light of yesterday's super long post, I'm going to try to keep this one short. We seemed to have gained an approval on the ring splints from our insurance today - and plan to have them fitted on Monday. Yippee! It looks like it is going to be 100% covered as well. Double Yippee! Also, Bug woke-up this morning in pain again. The same area as last time, but the pain was not as extreme. She was

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-60844362690379840052007-11-19T22:14:00.001-06:002009-05-30T20:22:05.937-05:00

I had a couple of minutes (that's rare these days!) and thought I'd update this blog just a little bit. First of all, I think we are going to order Bug silver ring splints next week. I am still waiting for the final medical codes to give the insurance, but should have them in the next day or two. However, they were pretty sure that it would be covered, and since we not only met our deductible for

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-65323872408709021062007-11-02T08:24:00.001-05:002009-05-30T20:22:41.246-05:00

I thought I'd spend a few minutes going back and posting about what we tried at ICATER - the Iowa Center for Assistive Technology Education and Research. (Thank's again Jim!). I'll start with the things that Bug tried and liked. Keep in mind all are adaptive Computer Access Devices, not toys and are priced as such. However, if your child needs them for school, your school very well might be able

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-79191632454800220032007-10-31T17:51:00.001-05:002009-05-30T20:23:29.622-05:00

Thanks for those of you who have been reading and commenting, it really means a lot to me! Sometimes I feel like the online community are the only ones who understand. I know that's not true, but the EDS community seems so much bigger online. It's so much easier to find others who have been there, done that. So, thank you for helping me feel not so alone! Not to many big updates here. Bug and I

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-3334752129374621062007-10-11T10:17:00.002-05:002009-05-30T20:24:29.194-05:00

It's time to finally come clean, and admit I've been avoiding this blog and a lot of other things lately. I just needed a period of denial. I think (hope) I'm over it now. ;) I can't even say what started it. Was it the strain constant medical problems has on my marriage? Being tired of having to advocate at school? Being sick of all the medical appointments? The fact that Bug has now

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-83491201185317126022007-09-02T17:14:00.001-05:002009-05-30T20:25:20.290-05:00

Well, we made it, kind of! :) Bug made it through the three 6 hour school days the first week, and then this past week made 4 of 5 full days (7 hours). Friday her throat was hurting and she came home. It was alternating with her stomach, no fever, so I'm pretty sure it's reflux issues. She keeps asking when she is going to the tummy Dr. this week, so I think she is ready to get it resolved as

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-5596581839764732642007-08-22T15:47:00.002-05:002009-05-30T20:26:08.801-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-40903102768141328192007-08-16T19:45:00.001-05:002009-05-30T20:27:45.958-05:00

I'll admit it, I've had some avoidance issues. :) I've known all summer I needed to get a lot of research and ideas down on paper to plan for second grade, but I've just put it off. It was so nice to be kind of "normal" for a bit and not having the pressure to have to seek answers right then and there. Now that school starts in less than a week, and our IEP meeting is even sooner than that, I've

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-30372723932214662872007-08-06T23:31:00.002-05:002009-05-30T20:28:29.658-05:00

I can't believe that "bug" will be 7 in a few short hours! My how time has flown!!!We are celebrating with family (grandma and papa are here) on her birthday, and then will have a party with her friends when school starts. Believe it or not, that is less than two weeks away as well. My do I have a lot to plan, research, and prepare for before then! Our IEP meeting is on the 22nd, and I have *tons

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-32809319431155743002007-07-23T18:07:00.001-05:002009-05-30T20:28:44.939-05:00

I know I mentioned Hippo Therapy before, and today I found this article in the Washington Post online and thought I would share it. Enjoy!Hippotherapy More than Just Horseplay

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-25353959708200229462007-07-22T21:32:00.002-05:002009-05-30T20:29:00.761-05:00

More hot feet - here are tonight's stats: Humidity: 83% Pressure: 30.11 in. Temp: 68°F

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-79103620465336874882007-07-19T11:00:00.001-05:002009-05-30T20:29:27.485-05:00

Just another medical note - hot feet again last night. Not as bad as the night before though. Here's the weather info:Pressure: 29.85 and risingHumidity: 70%Temp: ? (mid 80's at the time I think)Also, Bug has been having stomach problems the last two days, and now this morning too. She is feeling like she is going to "throw-up" off and on, and I'm hoping it's a flu or something, but am making

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-84561709358948970522007-07-17T23:07:00.002-05:002009-05-30T20:29:49.191-05:00

Just a quick medical note to myself that Bug had horribly hot feet tonight with little relief. I did remember to check the barometric pressure and actually record it here. It is currently 29.86 in. going up. I suppose I should also record the humidity, daily temp, and night temp just for better record keeping. That way I don't look back later and go "should have done that!". :) So, humidity

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-88041147073478208842007-07-15T15:38:00.002-05:002009-05-30T20:30:31.053-05:00

I just logged in to see how long it's been since I last posted, and was SHOCKED to see it's been over a month! WOW! Needless to say, we've been busy busy busy around here! Bug finished up her first year on the Challengers Baseball team, enjoying a nice trophy at the end which even had a girl on it instead of a boy. My, how things have changed since I was a kid. :) In case I've not mentioned the

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-58898243408516150592007-06-11T10:26:00.001-05:002009-05-30T20:31:24.761-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-83345944755492147392007-05-21T16:19:00.000-05:002007-05-21T16:28:55.112-05:00

Ok, this might sound like a no-brainer, but today the school's PT called to remind me about our end of the year meeting to discuss summer. During the call, she mentioned wanting me to meet her at a playground that has a low jungle gym so that Bug could be taught how to use it. She said "she told me the only thing she doesn't play on at recess are the bars, because they hurt their hands. I told

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-8612106803367995752007-05-09T17:11:00.003-05:002009-05-30T20:33:04.073-05:00

I cannot believe that it's been almost 2 months since I posted here. So much has changed, and yet so much has remained the same. Bug is doing pretty well, her problems remain the same with no real solutions. We have missed almost no school since the weather became warm, a total 360 from winter time. We only have three weeks of school left and we're busy trying to catch-up on work that's been

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-32247690339837459152007-03-21T10:49:00.000-05:002007-03-21T10:59:04.627-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-32833701788648471072007-03-12T21:30:00.000-05:002007-03-12T21:34:41.430-05:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-27824613730685419472007-03-06T13:27:00.000-06:002007-03-06T14:06:50.165-06:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-91829388201675278212007-03-04T19:40:00.000-06:002007-03-04T20:00:07.573-06:00

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

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-33298658960779478452007-02-22T17:04:00.000-06:002007-02-22T17:09:10.846-06:00

First of all, sorry for the long time between updates, I was so sick I didn't get online for almost two weeks. All is well again and I hope to get back on track. :)Great news! The OT came yesterday and had bug do type the alphabet on her ibook. She sent the page home, with a note attached that she had done it in one minute - twice as fast as just two weeks ago. WOO-HOO! So she is catching on -

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-57629167303624201792007-02-02T16:20:00.000-06:002007-02-02T16:56:15.939-06:00

WOO-HOO! I guess all of the complaint e-mails, message board posts, and letters people have been sending to ABC are starting to pay off a little. Now they are posting Dr. McDonnell's full interview from Medical Mysteries. It's at least a start!Part 1http://abcnews.go.com/Primetime/story?id=2844767&page=1Part 2http://abcnews.go.com/Primetime/story?id=2844827&page=1It is a long read, but full of

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-84560029553179533462007-01-30T19:30:00.000-06:002008-12-11T00:04:06.321-06:00

My daughter (Bug) has had an iBook at her desk for almost a week now. She really seems to be taking to it and enjoying it. The great thing is from what I can tell she is able to do about the same amount of work on it as what she could do without it - but now at least she is working towards a new goal. Eventually she will get better with the computer and then she will really take off!I just want

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-85915465018761301602007-01-28T10:48:00.000-06:002007-01-28T11:08:32.643-06:00

Now that I've had my rant about ABC, I'm trying to get my focus back on what is really important, my family. So here's a little update about how our last set of appointments were.Friday we saw the GI. Good news is that they want us to try to taper down on the miralax and add in fiber supplements. Yippee! Maybe we can get off of medication at some point this year - that would be GREAT! We

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-5024408977059367042007-01-27T21:37:00.000-06:002007-01-27T21:48:00.521-06:00

I can't put into words how upset I am about ABC's Medical Mysteries show that had a segment on Ehlers-Danlos syndrome this week. If any of you saw it, you know exactly what I am talking about.I am at a loss as to how to handle this now. So many friends and family watched (please don't have let great-grandma have seen) and that stinks. But at least they will kind of believe me when I tell them

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com3tag:blogger.com,1999:blog-7755103340565042342.post-23882234512996840462007-01-23T21:27:00.000-06:002007-01-23T21:39:35.236-06:00

List of updates since my last post....First off, tomorrow night is the long awaited (not really, but it feels that way!) airing of Ehlers-Danlos Syndrome on Primetime's Medical Mysteries show. Woo-hoo! I can't wait - let's just hope that they show what most of us look like, not just the extreme cases. Check for air time in your area, most of us will have it either at 9 or 10. Don't worry, you can

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-44016749087430663812007-01-17T22:01:00.000-06:002007-01-17T22:23:17.163-06:00

After a pretty non-eventful week (minus a bit more fatigue than normal) we had stomach problems again, to the point where my daughter made several trips to the office and finally came home. She had some diarrhea at school (although I don't think she told them) but didn't have any once coming back.She took a long soak in the tub, rested a bit, and had a snack. By 4 she was fine again.Sometimes I

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-55847572842832855862007-01-11T21:24:00.000-06:002007-01-11T21:34:56.841-06:00

I just want to say that I am so happy that after winter break we have had two short weeks! It makes the adjustment back so much better. As I anticipated, my daughter has had some issues getting back into the swing of things, although not too bad. Mostly just adjusting back to getting up early. This week one afternoon she came home and napped for over two hours - I can't tell you the last time

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-74586087263526307582007-01-06T16:35:00.000-06:002007-01-06T18:35:13.798-06:00

Since I've spoken before about how hard finding "adaptive clothing" for children larger than toddler sizes I thought I'd post some of the places I've been successful.Gymboree is great - they have lots of leggings that can be worn alone or under skirts/dresses that wear well and have elastic making them easy to pull up and down. They can be expensive, but they have awesome sales, you just have to

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-39866507400122648322007-01-06T14:00:00.000-06:002007-01-06T14:10:45.659-06:00

A Mother and her Son on one of the online EDS support groups were recently filmed for ABC's Medical Mysteries show. I am so excited, as I cannot wait to see it and have our friends and family watch it. They are supposed to talk about Ehlers-Danlos Syndrome as well as show how it effects their lives. I am hoping my daughters teacher will also watch it. And, I think I'll record it so I can have a

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-14561871576467250772007-01-03T20:50:00.000-06:002007-01-03T20:56:38.253-06:00

I know those of you reading this blog who do not have Ehlers-Danlos Syndrome yourself might have a hard time really understanding what it is all about. Sure, I have provided some information about my daughter, and some links to sites that explain it from a medical aspect. However, it's just not the same as hearing first hand how it effects adults. I am on a lot of mailing lists where I hear daily

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-54790600179578474712007-01-02T15:43:00.000-06:002007-01-02T15:48:53.727-06:00

Wow - it's been almost a month since my last post! The holidays have really made time fly by. Not much to report, my daughter had a wonderful Christmas and has felt pretty good most of the time. I think that being able to sleep and rest as she needs really helps.Tomorow school starts back - she's excited and so am I. Hopefully it will be an easy adjustment back. Luckily it's a late start and we

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-26246911351478788652006-12-08T14:09:00.000-06:002006-12-08T14:29:52.289-06:00

I don't have my copy of the final IEP yet to share here, but I did want to update that the meeting went really well and I think we're off to a good start. My daughters teacher was sick (I missed having her!) but we talk a lot anyway so I was ok with having the meeting without her.That said, the OT, PT, school nurse, and principle were all there. The meeting lasted about 1 1/2 hours and went very

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-21157950241093782502006-12-05T13:17:00.000-06:002006-12-05T13:25:46.598-06:00

First off, quick note about yesterday. My daughter was pretty tired, and was having stomach aches off and on all day again. They were at school and home. Food didn't help... She was too tired to do reading last night, or the schoolwork she hadn't finished in class. I just decided to let her rest and take the night off.So - onto today! I am SO excited - it's our IEP meeting! I can't believe how

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-43933406264810077262006-12-02T13:24:00.000-06:002006-12-02T13:35:29.358-06:00

Yesterday was a reminder of something we tend to struggle with - tummy troubles! One of the things that is so hard about EDS is that while you suspect that something is related, often there isn't a study yet to prove it. So, while lots of people who suffer from Ehlers-Danlos Syndrome will report that they have problems with chronic constipation and acid reflux, there isn't real solid proof that

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com2tag:blogger.com,1999:blog-7755103340565042342.post-75703979752863246482006-11-30T16:42:00.000-06:002006-11-30T17:21:17.701-06:00

I can't believe that it has been almost a year now since we first saw our Geneticist and got the diagnosis of Ehlers-Danlos Syndrome, suspect Hypermobile Type. I can still clearly remember the relief in knowing that we weren't crazy, that there really was a reason my daughter was struggling with things that other children her age were not. That her teacher and occupational therapist were correct,

BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com5