Bug's Update

First 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 I've posted before about how much I love the Wii, but I'm going to say it again, the Wii is AWESOME! It is just so great to be able to watch a child who is restricted from various activities be able to play them on the Wii. Rock Band 2 was worth every penny, it has brought her so much joy. She sings and plays the drums, and we can do it all as a family. The guitar is just too hard on her fingers, but that's ok, she just loves being able to hangout as a family and play. It's been great!!!

Now, health wise we have no real changes. She's been dairy-free since my last post (over a month now) and yes, her stomach problems are greatly reduced. In addition, I don't think she's missed any school at all during that month, which is wonderful. Historically winters are hard for her. I'm sooo thankful for all of this good news!

So - the other thing that is news is we just had our IEP meeting this week. Bug is still qualifying based on her physical therapy needs, but we no longer need OT servicing. I am happy about this, and everyone agreed she has made wonderful progress. We are going to continue to work with Dragon Naturally Speaking at home, but only so if/when we get to a point where she needs it we're prepared. They are starting to learn typing in the fall, and the plan is for her to give that a shot and see how she does. If she has joint problems then we'll adjust our plans accordingly. I really am hoping she can handle the typing, just because it's less noticeable to type on a laptop in class than it is to speak into a computer! :) But regardless, we'll make sure her needs are met.

We're tried of the cold, but making it through. I can't believe that it's only a couple more months until our second Arthritis Walk. Bug is so excited, she can't wait to go again! I love the fact that she is motivated and enjoys it so much. I know it makes me feel good to get out and do something about EDS.

That's about it for now!


Evil Transport Lady said...

Great news all around! So glad to hear her tummy woes are better, that can be so hard!

Hugs to all of you! And I'm praying warm weather gets here fast! I'm so tired of it!

Anonymous said...

I hope that you can help me.  My 6 year old adopted son is having many of the same symptoms as your daughter.  He has acid reflux daily and horrible stomach aches after every meal. He has frequent headaches and diarrhea. He also has had one terrible episode of what looked like an allergic reaction to food (hot red skin, itchiness, headache) and some more minor episodes.  We did a blood allergy test, and we could not find an allergin.  I have tried Lactaid with no noticeable improvement.  He also has terrible pains in his joints which worsen in the late afternoon and he has the soft, stretchy skin and hyper flexibility.  Of course I am suspecting EDS, but our doctor was not overly impressed with my findings.  I live in central California.  Where do I go for help from here?  It breaks my heart watching my son suffer.

BugsMom said...

Hi Anonymous!

The best advice I can give you is to 1) trust your gut and 2) believe your child. Many Dr's do not know about or understand EDS, please look for another one. While I don't know of any Dr's in CA, I can tell you to look for a geneticist. Most people have better luck getting diagnosed with one.

You also might consider having him see a peds. GI Dr. If he has reflux it is not something to mess around with, as it can cause a lot of damage left untreated. Plus, the GI is more familiar with things that bother people with reflux, and will be able to tell you if the problems your son is having sound more like that then food sensitivities. :)

Kudos to you for sticking to your gut feeling that something isn't right and trying to find some help! Hang in there and look for a Dr. who will listen - it makes all of the difference! You can also visit the Ehlers-Danlos National Foundation to get more information on EDS. It's free to register and log-in to the main areas of the website. http://www.ednf.com

Good luck!!!!!!!!

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