Working on that Typing!

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!

Time to Move on...

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!

Medical Mysteries SUCKED

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.

It's always something...

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.


More notes, and why it isn't fair

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.

Made it through another Week

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 she's had a nap! :)

As far as health symptoms, we're back to the stomach aches that last all day. She's also had an increase again in "throw-up burps" (acid reflux). She is still taking her prevacid and there have been no dietary changes. Right now I am thinking it is from the increase in activity, since that is the only change. Last time this happened I figured out it was coming from our new vitamins - they had increased vitamin C. Vitamin C was recommended by our geneticist to help with the bruising she gets, but it upsets her stomach. I thought since it had been a year and she was on the prevacid that maybe we could handle vitamins with extra C, but that backfired.

I've got her sleeping on two pillows at night in hopes that will make a difference. I just don't know what else to do. We see the GI again next month so I guess if it keeps up we will discuss our options again then.

Another thing to note (since this is also for my records) is that our "hot feet" have returned. They started acting up after school, and continued most of the evening. She was wearing her purple Merrell's today. She did tell me that she "always has hot feet at night" to which I asked if she always tells me. (kids perception of time isn't always that great) She told me that there are times where she does not tell me, so I guess I need to pay a bit more attention to the issue. I had kind of assumed that since she has not mentioned it that it wasn't bothering her. Anyway, she's got the corn bag (cold tonight) on her feet and seems pretty happy for the moment.

Finally, no PT or OT this week. She went home early on the day they come due to the stomach problems. Hopefully we'll see them next week.

That's all folks! :)

Adaptive Clothing

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 be patient. Join their e-mail list to be notified of the sales.

Limited Too is something new to us - so I don't know about their clothing in general. Sizes start at 6. I did find a great pair of mittens there which are the gloves/mittens combo with the finger tips cut off. I am hoping that all of our ring splints will slide in and out of these easily and not get stuck, and if it's cold out, my daughter can just flip the mitten part down over her finger tips.
The Children's Place is not usually high on my list (too many skin tight clothes, not good for weak fingers) BUT, I found my daughters first pair of jeans there - so there is something to be said for that since we've been looking for years! The jeans have a soft elastic waist, so she is able to pull them up and down without ever doing the buttons or zippers. To make it even easier, we bought a size larger than she needed, and had the tailor shop shorten the pants. I have bought two pairs of them in denim and one pair in cords so far. I cannot rave enough about this, because I had given up on jeans! Now she fits in perfectly with her peers. ;)
I have also had good luck at Herbergers (also called Younkers, Carsons, Bon-Ton, Elder-Beerman) finding shirts. They have great sales and clearance, and lots of the shirts that flair out and tie in the back. These are great for when you are dealing with a child who is often constipated because they don't put pressure on the waist.
Our favorite shoes right now are Merrell's. They have excellent support, and come in lots of different styles. Best of all, they have Velcro in larger sizes!
Before we found Merrell's, we did New Balance. We still love them (and wear them) but they just don't have as many "stylish" shoes that go well with dresses and such. We have also had some success with Croc's in the summer.

Another thing we use and like are zipper pulls. We attach them to items that have small zippers. They can be really helpful, but they do tend to break easily. We got ours at Toys R Us (they are not online that I can find) and they offer them with your child's name on them. I really liked that, as it helps keep track of their stuff as well. Just in case you can't find them, here is a link where you can purchase all different styles online. I have not ordered these and tested them, so I can't tell you the quality. :)
Finally (for this post at least) I want to share an item we love that we can't live without. It is a corn bag. Similar to rice bags (or flaxseed, herb, etc) these bags can be placed in the microwave for heat, or in the freezer for cold. My daughter gets "hot" feet, sometimes they just feel really hot and uncomfortable, other times she says they burn. We've not quite figured out yet why this happens, but the hot and cold bags are the one thing that soothe her. We prefer to buy the felt covered ones as they are soft too. We've been through just about every kind of heating and cooling bag, and the corn ones are her favorite. One of these links is on how to make your own, and one is where you can order them. I haven't ordered here (we got ours at a show in a mall) but it looks like the same product.
I hope these links are helpful - I'll share more as I think of them!

EDS on Medical Mysteries

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 copy to share later too.

Currently they are saying the air date should be the 17th or 24th of Jan. I will post again when I hear more.

Be sure to tune in!!! :)

An Inspiring Site

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 about the ups and downs that EDS can bring, and they provide me with a lot of insight as to what to expect with my daughter. But that doesn't help you - a person reading this with no prior knowledge about EDS.

Tonight I've been surfing around reading blogs that other people with EDS have written. I am going to post what is currently my very favorite one. I hope you will take the time to read it because it is really insightful as to how EDS can effect your life, and it's done in a very interesting and honest way. Not to mention the great humor that is speckled throughout.

So, I'm pleased to send you to read "Girl, Dislocated" - I hope it teaches you a little more about life with Ehlers-Danlos Syndrome.

Happy New Year!

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 only have a three day week. That should make it a lot easier!

I guess that's it for now. :)