Bug Update

I promised to do a Bug update, so here goes!

Bug has been having stomach pain since August 9th. It has been severe enough for her to invent a whole new level of pain on her scale. :( We tried everything. Ibuprofen, pepto, extra dose of generic prilosec, the IBS med that I wasn't going to try, and upping her Miralax. (just in case). NOTHING has worked. The pain never fully goes away, and gets worse as the day goes on. It has been very stressful for Bug and I. I have felt so bad for her but have been unable to get it under control.

To complicate matters her pedi had just left for vacation when we called about it. Instead of seeing someone new (I asked if anyone else knew about EDS, and they had no idea) I decided to wait until he got back. I still don't know if that was the right choice, but with Bug being complicated I just didn't trust seeing someone new in the middle of this. I figured we could always hit the ER if we went beyond horrible pain into, well, I don't know. I just knew that was an option if suddenly things got out of control.

So... the pedi still thinks it's abdominal migraines. He wants her to take 400 mg of ibuprofen 3 times a day all weekend, and then call Monday if things are not yet under control. At that point he will put her on a script for migraines, or, if her symptoms have changed he might ask to see her again.

He also checked her thumb, as she had popped it at Camp a couple of weeks ago and has been having pain up her arm (into her shoulder) ever since. He said that the thumb is in the correct position (it resolved itself not long after it had popped) and that the pain is likely from swelling that is still going on. Peace of mind for me after hearing that. This is the first time she's had lingering pain after her thumb has been out.

He also looked at her ankles again, and agreed with the PT that bracing the left ankle was also in order. So, Bug is getting another brace. She wasn't happy, but, when I presented it as "if you have the choice of wearing another brace and getting to be more active, or not wear it and sit out more which would you rather do" she immediately picked the brace. It's amazing what perspective does!

Today she also saw her OT and got her silver ring splints adjusted, as well as getting 3 replaced due to growth. We always enjoy going to Keith, he's just so nice!!!

We also paid a visit to our assestive tech friend Jim at ICATER. He sat Bug down and worked on Dragon Naturally Speaking 10 with her. She did GREAT! The program is recognizing her so much better these days, to the point where he even taught her how to use her voice for corrections. While that is not a big deal to us adults, it's a huge sign that her speech has changed and matured a lot! Woo-hoo! Great news, as sometime between 4th and 5th grade I predict she will need to move into Dragon at school for her longer assignments.

Finally, school starts next week. Bug is a 4th grader. I just don't know where time goes. My "little girl" has now had a birthday and is 9. She is looking and acting like a big kid. While that is really cool, I sometimes miss my little snuggle Bug. :) Anyway, I've been busy trying to make a first aid box for her that includes a corn heating/cold pack, an itch stick that doesn't burn her skin, vet tape and gauze for cuts as band aids are causing her skin damage, plus instructions on what all of her medical needs are and how to handle them. While most of that is in her IEP there are many updates and things I'd like to highlight for her new teacher.

I need to get to bed, that about sums it up for tonight!

OMG - Ring Spints Fricken ROCK!

Ok folks, I am straying from my normal talk about Bug, and yes, there is plenty to talk about. Tonight, I am hopping on just to say something about me. While Bug was getting her ring splints today at the U of Iowa I mentioned to Keith (the OT we've seen 4 years now) that I didn't know what a "normal" range of motion was for a finger. He looked at me, and I said, "My fingers have always hurt when I write, and I just wondered if they are within the normal range of motion at the tips". (They bend straight back at the bases - so I know that isn't normal! HA!)

Anyway, he looked at them and made some comment along the lines of "Good God yes they are hypermobile" and asked if I'd like him to make me a plastic splint to try. So how could I say no? I did, and people, it rocks!

I cannot explain to the "normal" people out there how different it feels to have stability in that joint. Weird just isn't a good way to do it. Strange but amazing is more like it! It's been almost 12 hours since I got my splint and I just love love love it! I am already now considering seeing about getting my own genetics appointment made to take the leap and get my own official diagnosis (they already were pretty darn sure I am the carrier, which means I also have EDS) just so I can get my own splints on any fingers that need it. I don't care what they look like, I don't care what they cost. It feels too good to have that extra strength to worry about those things.

The true test will be next week when I start working at school again, as I do lots of writing. But today I wrote a letter and could tell a difference, and I was surprised at the difference I felt typing. Wow!

I had such an "ah ha" moment right after getting the splint. Keith wanted me to try it out by writing something. I reached over to get the paper and he said "Stop that! You can pick that up like normal now. Use your first finger and thumb". I looked down, and sure enough I was scooping the paper with my whole hand. I laughed, and corrected myself. I have never noticed that before - and I am sure there are plenty of other things I do oddly too. Just like every other EDS'er.

Before I take the leap, I need to make sure that if I ever need to get back on my husbands insurance I still will be able to. I moved onto my own policy last year with the school. While I don't plan on leaving the school, it's just better to be safe than sorry.

Thank you for listening to something totally non-Bug related. I'll be back to do my normal Bug updates tomorrow! :)

Support an EDS Kid!

Hi everyone!

One of Bugs EDS friends (in fact, her only EDS friend) is in a contest for a local auto dealership. She sang and is in the top 5. Now, she needs votes to stay in and hopefully win!

As we all know, EDS keeps kids from doing so many fun activities and sports. Singing is one of the "safe" activities we can do. So lets all band together and vote for Samantha Hale, she sang wonderfully and it would be great to see someone win who continues to overcome so much!


The website doesn't require you to register to vote, and it also doesn't say how often you can vote, only that the vote goes for 4 weeks with one child being eliminated each week.

So - take a minute and vote for Samantha, gooooo Sammy!