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! :)

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.

• http://www.gymboree.com

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.

• http://www.limitedtoo.com

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. ;)

• http://www.thechildrensplace.com

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.

• http://www.bon-ton.com

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!

• http://www.merrellboot.com

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. :)

• https://shop.thechildhealthsite.com

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.

• http://www.craftywench.com
• http://diamondthreadworks.com

I hope these links are helpful - I'll share more as I think of them!

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!!! :)

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.

http://girldislocated.blogspot.com/

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. :)