tag:blogger.com,1999:blog-77551033405650423422024-03-06T23:01:43.886-06:00Our Journey with Ehlers-Danlos SyndromeLearn about Ehlers-Danlos Syndrome in children, and how it effects our family.BugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-7755103340565042342.post-53997243795180100252009-12-18T23:55:00.003-06:002009-12-19T00:22:59.276-06:00Long Overdue UpdateI'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-12985646043656459852009-09-24T22:44:00.002-05:002009-09-24T22:55:08.940-05:00The Day Has Come...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-60321071455714404952009-08-22T01:00:00.003-05:002009-08-22T01:27:45.584-05:00Bug UpdateI 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 worseBugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com1tag:blogger.com,1999:blog-7755103340565042342.post-44699331158485512322009-08-21T22:45:00.001-05:002009-08-21T22:57:29.131-05:00OMG - Ring Spints Fricken ROCK!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-80066232292379252322009-08-13T15:56:00.002-05:002009-08-13T16:00:53.526-05:00Support an EDS Kid!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-29755785043240642932009-07-23T14:31:00.001-05:002009-07-23T14:35:56.467-05:00Playing Catchup - A Monthly UpdateI 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-47078956945947662562009-07-09T18:23:00.007-05:002009-07-09T19:12:51.108-05:00Apparently my daughter is a lost cause...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-47371450598221888332009-06-25T15:28:00.002-05:002009-06-25T17:27:04.348-05:00GI UpdateWe 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-17475949731125106122009-06-15T00:50:00.002-05:002009-06-15T01:15:19.303-05:00Schools Out for Summer!!!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-11142801544002641262009-05-30T19:34:00.001-05:002009-05-30T19:40:27.622-05:00Quick Wrist NoteThis 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-4710726606757307432009-05-24T17:42:00.003-05:002009-05-30T19:41:42.669-05:00And the PT said...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-55091471081439802882009-05-19T20:56:00.002-05:002009-05-30T19:42:17.155-05:00Ankle UpdateWell, 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-6200934528937185052009-05-18T20:16:00.007-05:002009-05-30T19:43:00.764-05:00Help Anyone???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-17900034780141479822009-05-15T21:27:00.003-05:002009-05-30T19:43:19.701-05:00We have the Brace!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-28514228594892418922009-05-12T20:23:00.003-05:002009-05-30T19:44:06.979-05:00The WristToday 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-90698460829969887722009-05-10T21:35:00.002-05:002009-05-30T19:45:22.796-05:00Arthritis Walk 2009I 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 busyBugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-82220656107078796472009-05-06T19:13:00.005-05:002009-05-30T19:46:53.893-05:00The New Ankle Brace...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-260061215675131642009-05-06T18:54:00.003-05:002009-05-30T19:47:37.746-05:00Thank you - and the Good of our Appointment!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$%#@%^@#%&^@% What is Wrong with People?!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-48755481530839912892009-04-29T22:40:00.003-05:002009-05-30T19:48:36.398-05:00Which came First???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-68241191063182582562009-04-12T16:21:00.005-05:002009-05-30T19:48:48.585-05:00An Inspiration to Never Give Up!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-57972583184393910542009-04-01T19:49:00.005-05:002009-05-30T19:50:08.917-05:00School, Recess, PE, and my breakdownAs 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-12301762809906438992009-04-01T19:22:00.001-05:002009-05-30T19:55:11.670-05:00Ankle issues, ankle issues... Did I mention we're still having ankle issues?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! :)SoBugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.com0tag:blogger.com,1999:blog-7755103340565042342.post-19919795889347058742009-02-23T20:20:00.005-06:002009-05-30T19:55:54.523-05:00Here It Goes Again... her ankle that is!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-10837455891033315392009-01-26T18:10:00.003-06:002009-05-30T19:56:49.896-05:00Bug's UpdateFirst 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.com4