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 to support charms as well. But we're still playing around. :) The idea is that Bug can change the bracelets to fit her mood just like any other piece of jewelry. Pretty cool, isn't it? Thanks Dania! You can check out her custom jewelry here: Designs By Dania.
As you might have noticed, I'm posting twice today - woohoo! We're on vacation and I'm trying to get my blog updated. I've added a ton of resource, support, and blog links. I hope you guys find them helpful! :)
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 remember what cup she was using, but I sure am going to pay attention from now on.
I also got tips about seating at school from comments in this blog. I used those to help convince our school to get Bug a better chair, and they did. This year she's had far less problems, and while I can't say it's 100% the chair, I do believe that has a lot to do with it. Extra arm, leg, and back support has to be helping.
Another thing that never fails to brighten my day are the comments from other "kids" with EDS. Granted, most of you are tweens or teens, or young adults, but to me you're still kids. LOL Anyway, it motivates me to keep trying and encourages me that I am doing the right things when I hear from you. It is also inspiring that so many of you are taking charge of your own health and well-being at ages that are far younger than the average person would. Kudos to you!
I've also had comments left from teachers and people working with EDS'ers. It's great to know that people are taking the time to try to understand what life can be like for an EDS kid. I wish there were more of you. If you ever have a question about something specific just let me know and I'll try my best to answer or give ideas. I am always behind in this blog, but if I see someone who needs help I'll try my best to get to it.
Finally, there was a PT student who wrote. Here I am guilty of not answering yet. I suppose part of the problem is that there isn't a specific exercise that Bug has taken to. We did a series of them that our PT gave us, but really it boils down to her loving the stuff that felt like play. She loves her mini-tramp and plays/jumps on it a lot. I made sure to get her one with a support bar to use as needed. She also loves the Bosu ball and jumping on and off of this. I also have found her sitting on it often which inspired me to research Balance Ball Chairs. I think I'm going to order a couple for our basement. If it feels that good to sit on a bosu ball I bet these chairs will be a hit too. I think I've mentioned before that she was playing the Wii while standing on the Bosu ball, but I can't remember. Anyway, while that looks like all fun and games I can tell you it isn't. Standing still on the Bosu ball is hard already, but doing that and playing Wii Bowling or Tennis is very challenging! LOL
She also loved the medicine balls that bounce. The thing she disliked most was the therapy band. Since then I've read that they aren't always the best thing to use with EDS patients. Some people can though, so ymmv.
Finally, there are so many parents and random people who post here and each and every one of you keeps me going. Thank you all!!!!
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 she had been complaining all morning about her stomach and head hurting. She spent most of the morning in her bean bag chair. However, at lunch recess the teacher saw her running around playing like nothing was wrong. When recess was over, she came inside and started complaining again and was sent to the office to get her temp taken and rest.
Her temp was normal, and they had her rest for about 20 minutes and then called me not knowing what to do. I said keep her another 15, and I'll call back. So I waited 15 minutes and then went to the school to check-in. Bug was still in the office, laying on the cot. She was not on the camping pad the OT left for her at the beginning of the year, nor did she have her pillow which I had left for her at the same time. The agreement at the beginning of the year was that she could use these things when she didn't feel well because we had a theory that it wasn't just rest that helped, but rest in a comfortable spot. In their defense, the office lady was at lunch and the person in there likely didn't know, and with a tummy ache I doubt they would have thought comfortable rest would have helped anyway....
So, I talked to Bug and it was the classic "all over" tummy ache we always get, so I just took her home. She spent the next 3 hours resting on the couch, snacking some (something she often does when her tummy hurts) and not even talking. As more time went by, she started perking up some and by bedtime she was "normal again."
In the meantime her GI had called me regarding the e-mail follow-up I had sent a week ago. He told me he wants us to try dairy-free for 3-5 days and see if that stops some of this. I went through her symptoms again with him (the fact that this goes in spurts, and once it starts we have a rough week or two and then we're good again, and that it isn't all day, but part of the day, etc). He said once again that is normal with the GERD. We're going dairy-free to see if it changes anything just in case she has some IBS going on too. We don't think so, but at this point it doesn't hurt to try. (another reason I love him - he's not just pushing surgery, he's trying any and everything with us!) If that doesn't work we're upping her fiber for a week to see if that works. Then we check-in again with him to see if he has any new ideas before our visit in April.
Anyway... Today I stopped in Bug's room to tell her teacher no milk, and she mentions yesterday and how maybe it was anxiety or something. She just couldn't understand why Bug would go and play at recess when she was so ill. I didn't know what to say, except 1) she's a kid, and she doesn't get to play much 2) the pain comes and goes and 3) if it is being made worse by milk, she had just eaten milk right before school and then again at lunch. Which means it could have been flaring up because of that. Regardless, I just felt like she didn't much believe it was "real" - even mentioning that another girl was doing something similar that day. Well - I LOVE her teacher - she is the best! But it is real - we dealt with this last year at school a lot, we deal with it at home, and the tests from the Dr's show it. (the GERD) Why do people assume that because she doesn't complain and you can't see it she isn't ill????????? We all work so hard to make her feel "normal", and to teach her to be in charge of her own body and we encourage her to meet her own needs. Why is the immediate assumption that she is faking not feeling well - or that on a daily basis I am the one making up these problems because she isn't talking about them 24/7???
Should I be teaching her to complain non-stop and feel sorry for herself? I think not! But it seems that in order for everyone to "get it" that's what needs to happen. Of course, if she complained all of the time then she'd be the girl who cried wolf. No matter what, she gets the short end of the stick. Ugh.
I want her to feel good about her self and not harp on her body not feeling well. The fact of the matter is for her she often won't feel "normal". I don't want her to focus on that. I want her to focus on living and being a kid as much as possible. Not on her aches and pains. Yes, I need to know about them, but I like how we've got it worked out where she lets me know in a matter-of-fact way and the end of the night. We don't have long talks about it (unless something new crops up, or it is unusual or bad pain) it's just something she lets me know about. No different than a homework assignment or what she played at recess. The problem is that doing it that way does not allow the people in her daily life to hear her express these things from her, they only hear it from me. And for some reason, I'm not believable. I guess that makes the Dr's unbelievable as well, since the tests and notes backing it all up come from them.
Why people seem to think that I could go to all of the trouble to find these Dr's who are good enough to work at the University of Iowa but are dumb enough to be manipulated by a Mom who for some crazy reason wants to waste hours of time and worry on a kid people don't believe it sick gets to me. I would give almost anything to not have to do this. Do they have any idea what it is like to always be looking for the missing link between these problems we have? To have to have the stress of all of the medical appointments, the driving, the missing school, the inability to work out of the home if I wanted because I have this other stuff going on... Why would I want to worry about what sports or activities are safe for my child to play if I didn't have to? Why would I want to forbid her from things that every other child gets to do? Or worry about if she can go to someone's house because the parent knows what is and isn't safe for her to do - or how to administer her medications on time. You couldn't PAY ME ENOUGH to create a crazy-ass life like this for my daughter or myself. Period. And I am sick and tired of people not getting it, not understanding, not making efforts to educate themselves to better understand and just ASSUMING I like to do this to us.
Yes, I am angry. I am angry that not only does my daughter have to be different but that we have to fight for people to believe her. She hasn't done a damn thing to deserve that. She is sweet, kind, honest, and a heck of a trooper. If she says she feels like crap at school someone better believe her - because she feels like crap most days and doesn't say anything because that's the way her life is. That's bad enough - it just kills me that then people choose to not believe her when she actually does say something.
I love our school. I love her teachers. I love my friends, and our AEA. What I hate is that Ehlers-Danlos Syndrome is not only invisible, but it brings on even more invisible symptoms that people can't see. And our society in general doesn't believe what they can't see. Who cares what the medical Dr's say, or what the Mom says. If we can't see it, we don't believe it. Since when is that how we live our lives???????????????????
In some ways I am lucky- at least I'm not being accused of child abuse. Here's an article that was just written a few days ago about an Ehlers-Danlos Mom who had that happen. It's long, but worth the read.
Maternal Care- Or Harm?
Ok, I'm done complaining, at least for now. I know I've brought this all up before, but I had to do it again. It's not one person I'm upset with, it's society as a whole. I believe my daughter is loved and cared about at school even if they don't get it. I might not have that somewhere else. For that, I am thankful. I just wish I could make people more aware of EDS and how horrible it can be, and that we are not crazy!!!!!!!!!!!!!!
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, tonight we spent family time bowling. Obviously, bowling probably isn't something that a child with EDS should be doing. After all, if you aren't supposed to carry books around school, odds are the Dr.'s would frown upon hurling an 8 lb bowling ball around. But with the Wii, we can bowl safely in our own living room. I cannot explain how happy this made Bug the first time she did it. And she still loves it, months later.
On the Wii she is also able to box, play tennis and baseball. There are lots of other fun games she plays on it too (laser hockey, fishing, ping pong, etc) but the first ones are things that are not safe in real life. It is priceless to her to have a way to play them - and be able to play them on a level playing field no less.
This afternoon I was doing some work and watching her play "fishing". All of a sudden I noticed she was standing on her Bosi Ball. I could not believe it!!! If you have ever tried to stand on one you'll know it isn't easy to keep your balance on it while just standing still, let alone while throwing a fishing rod! LOL She also played several other interactive sports games standing on it. WOW! This is a girl who two years ago didn't have enough balance to walk up or down stairs with one foot, then the other. I cannot wait to tell her PT about this - I am sure she will be so proud!
So - if you do not have a Wii, and have EDS and feel left out of sports, consider getting one. It is one of the best investments that we have made!!!!!!!