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 to say again how much I love her teacher! She is just so supportive, we will miss her next year!

Medical note - she has a rash that has been appearing on her upper lip area from time to time. I have often wondered if she is sensitive to something she is eating - also in part due to the stomach aches. The rash happened again tonight during dinner, so I took a bunch of pictures for our allergy Dr. I also cut the labels from the foods she ate. It's just yet another one of those crazy things that we don't know what it belongs to - sensitive EDS skin? Allergy?

This is the type of thing though that makes me feel like such an outsider at times. "Normal" parents wouldn't bat an eye at a rash - or, when they see it they go to the Dr. and get a simple answer. I feel like there are always strange medical things going on, and that they are all likely pieces of this EDS puzzle, but no one knows how they fit together. No one can prove they all go together. There is no manual that tells friends and family that you're not crazy, that your child really is going through this stuff and you just can't figure out why. Sometimes I long for the simplicity of not knowing, not being educated. But, that's just not how I am.

Anyway - I'm still working on those OT ring split pictures. Hope to post them soon!

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 talked about how many EDS sufferers have chronic constipation throughout life, and they agreed that we should try to find something more "natural" that she can use forever if needed. While miralax is pretty safe, no one wants to think a 6 year old will take it forever.

I also asked about Aloe Vera gel, as there are several people I've met who swear it is wonderful in helping with constipation. Let me stress here they were not talking about Aloe juice, this is Aloe gel. The GI didn't know much about it, but, he did say that he was ok with us giving it a shot and did not feel it would be harmful in any way. What most people say is that the gel kind of coats things and helps them pass. How true that is I don't know, but again, it just might be worth trying.

Then we got to the tummy problems. Basically they don't know what is going on, and so we are upping our Previcid to twice a day for a few months and then revisit. If we are still having problems at that dose, then they will want to do an endoscopy. While I am happy to have the script and something new we can try, I still want to really look at some of the other suggestions I've been given that are fatigue related. In my heart I still feel that is the root problem. I could be wrong, but sometimes you just have to go with your gut. Now, of course the fatigue could be effecting the valve at the top of her stomach, and then the acid is coming up. If that's the case, the Previcid is still going to help. So I guess it will be trial and error for a bit. Maybe starting with the medication and seeing what does (or doesn't) happen, and then try some other non-medical things at the same time or after.

After our appointment, we had just enough time to get some lunch and head back for our OT appointment with Keith. I cannot say enough how blessed we are to have such a warm, caring, understanding and funny OT! My daughter actually enjoys seeing him, even though she is really sensitive to the warm plastic when we make the rings. He is just so good and interacting with her and making her comfortable - I just wish more medical staff were like that! So, we had three new rings made, and he was able to adjust two for us that were bending a little funny. (like maybe someone stepped on them, LOL)

I did take pictures of the entire process this time. I've always wanted to, but finally got around to it this time. I will post them here to see - I think it's pretty interesting myself. So many people have asked how our rings were made because their OT's don't do them like ours does. They are limited to ordering clear plastic ones for their kids. So maybe they can see our process and get something similar. The cool colors make all the difference in how much my daughter enjoys them and is *proud* of them. I couldn't imagine having to have her just wear clear.

On the way home she slept most of the way. (It's an hour and a half drive). I just shows again how her endurance is so different from others her age. We didn't walk a lot, didn't even stand much, but she was just so worn out after all that. Just like she gets worn out from school.

Oh - just for record keeping, the OT was planning to come Friday, but we weren't going to be there. ;) I'm guessing we're back on track with that now!

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 how inaccurate the show was. What worries me the most is all of the support staff that my daughter deals with on a daily basis who watched. UGH. I can't undo what they have seen, and now I feel like instead of having a blank slate to teach to, I have a misinformed community to try to change their views. That's a heck of a lot harder. Plus, I have to live with the fact that *I* was the one who made all of those calls, sent all of those e-mails, and had the meetings ASKING them to watch it! Because, I naively believed that ABC wouldn't air false information. If it had been E, or the SciFi channel, or something like that, I wouldn't have done it. But ABC? ABC is *supposed* to be a good channel with shows that have real information. I guess I was wrong.

I feel sorry for all of those people who poured their hearts, souls, resources, and time into this taping. Many of them belong to online groups I'm on. These are people who suffer daily, and yet they tried to take time and be well and helpful to ABC - because they were led to believe that it would HELP the EDS community. They put aside their own lives to try to help reach out to others and let them know what Ehlers-Danlos is, how to get help, and treatment. Now they feel terrible because ABC abused that, and instead wasted air time to put on garbage. Come on, no one can tell me that they are being serious and trying to help people when they show a guy with paper clips all over his face, stretching his skin in a circus, and walking his three-legged dog. PLEASE!

There are several groups working on getting this fixed. As I hear more I will post it here.

If you did not see the show - don't bother. Please.

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 still see American Idol and learn about EDS - all in one night! Can't beat that, can you!?

Next up - last Thursday brought more tummy problems. Another early day out of school. Ugh. However, after posting to one of my online support groups, I came away with some wonderful ideas on things that could be contributing to the problem. Everything from fatigue, to her chair, bloating that makes her clothes rub, lighting, and more. I'll try to compile the suggestions here at a later date in case they are helpful to others.

Friday brought the OT - and my daughters first lesson in tying shoes with ring splints. How exciting! The OT also spoke with her teacher about getting her rolling with an ibook to try. They selected the ibook as the first piece of technology because the keys are the easiest to push. Great thinking! :) The only drawback is that no one believes she can type, (ok, her teacher does, but no one else) so no one wants to put time into teaching it to her. So, even if she takes to the ibook, it won't do her too much good because there will still be an expression barrier.

So, I have a new goal, to teach her to type. I'm going to prove everyone wrong. There is no reason that she can't be taught to type, kids her age can play the piano and it's the same type of thing. (no pun intended - hehe). I am determined to show the world that she has at least one strength for each of her weaknesses, and that we need to spend more time looking for and encouraging them. Just like blind children learn to read with braille, I'm sure my daughter will embrace a way to do her work and express herself as long as a reasonable way is shown to her and encouraged. She loves to learn, loves school, and is bright as the rest of them.

Other highlights...

Trip to the hospital OT on Friday to get new ring splints made.

And equally important - I found another pair of pants that look "normal/stylish" that are without zippers or buttons! This time they are from Old Navy, and are part of the spring collection. Lots of different colors to choose from too. The verdict is still out as to how easy they will be to get on and off after washing, but provided they don't shrink too much I think we'll be in good shape.

:)

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 just don't know how to deal with this. I guess I just keep doing the best I can.

Other things of interest...

After her bath I noticed several areas where her skin was getting really dry. We broke out the lotion Santa left in her stocking and she has been applying it over and over and over again ever since. LOL I am thinking I need to make a little kit for her to take to school, one with a small lotion, her favorite anti-itch stick, and maybe some sunscreen. I'm sure I'll think of some other goodies to go in it too, like maybe some crackers to try when her tummy hurts. I'll keep thinking about it a bit longer before trying to actually put it together. I guess I should mention that she gets really upset when her body is dry, itchy, or sore. So having those things around might help, although it might be distracting as well. I suppose I'll ask her teacher what she thinks.

I spoke with our genetics nurse today and she is sending a medical note for the school. I'm excited to get that, even if it's just for our files. I also let her know about Ehlers-Danlos Syndrome being featured on Medical Mysteries, which I have an air date as Jan. 24th.

Another thing we have coming up is a visit with Keith, our "ring doctor". He's actually an OT in the Rehabilitation Specialties clinic at the University Hospital. My daughter just adores him and is looking forward to going. A couple of our rings aren't fitting, another one is loosing it's form, and today we might have lost one. (hopefully it shows back up) We seem to be keeping true to visiting him every two months for a ring or two. Not too bad!

On a final note still no Occupational Therapy this week, unless they come on a different day from usual. I'm disappointed, as I really think we need to be getting started on trying out different assistive technology. My daughter is plenty smart enough to be doing the same work as her peers, and it is frustrating to have to settle for her to do less because her hands can't keep up with her brain. While I don't mind that for a period of time, we are now more than halfway through the year and I am growing impatient. I know the IEP was just written in December and I need to give it time. But it's so hard when I know it's going to take time to even try out the technology, let alone find a computer-type machine that she really takes to. Then getting her used to it and deciding what work can be done on it... Etc. I feel like even if we found the perfect machine tomorrow it would still take until the end of this school year to really start getting the benefit from it.

I hate whining, but I guess I'm just in one of those moods. You know, the kind where you just want everything done yesterday and you're not in a position to make any of it happen yourself today, tomorrow, or even next year. I hate being at other people's mercy when I know there are things that could help her now, if only there were the time and resources.

It just isn't fair.