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!

This is just more of a note for me so I can remember the next time we see our Dr. Bug had something hurting in her right wrist again. She said it wasn't feeling like it did the last two times (horrible pain, like something was out of place) but it hurt and she didn't want to use it. This occurred during art class while using chalks. She went and told the art teacher, who asked Bug to describe what she wanted her to do and then she colored it for her. This was acceptable to Bug. ;)

Anyway, she says it all of a sudden stopped hurting.

I suppose it's good we're almost done with school so we can work hard on Dragon Naturally Speaking this summer!

Today I got an e-mail not long after I got to the classroom I work in letting me know that Bug said her wrist felt like it was out of place and hurting. The teacher had her resting and icing it, and I let her know to call me if it wasn't "fixed" in 45 minutes. I know that sounds like a long time, but back in Feb. this year something similar happened and we went to the ER. After sitting there for over an hour, they did x-rays and got her seen. By then it was feeling fine again, and we were treated like we over-reacted and sent home. I spoke with our genetics nurse the next day, and she told me that what happened at the ER wasn't unusual for EDS patients, and that next time to just ice it and rest it and typically a wrist will wiggle back into place.

Being the novice I still am (even after 3.5 years of dealing with EDS and my daughter) I did e-mail the school about what happened and what to do in the future if it happened again, but I didn't save a copy for myself, or blog about it so I'd know which wrist it was if it happened again in the future. Duh.

So, I haven't yet figured out if the wrist that was subluxed (I'm guessing that is what happened) today (THE LEFT!) was the same as before. I guess worse case scenario I will call the hospital and ask them the look in her records.

The good news is that it worked itself out during the icing, and the pain went away. Everything was fine after that. This is what Bug told me. "It looked like it popped out of place but it didn't, I put both [wrists] on my desk and they looked different. I didn't hear it pop either, but it started hurting." She said the reason she looked at the two wrists is because it hurt. As usual, it's hard to know how seriously to take this. After all, can a 3rd grader notice the difference in her wrist shape? That said, I certainly believe she knows her pain, and does it really matter if it was subluxed or not???

The one thing I am torn on is if I wish they would send her to the nurse to get stuff like this checked when it happens, or if I like her staying in class and continuing on like normal. On one hand if a nurse were able to look at it maybe I would better know if it subluxed. On the other hand, that would draw more attention to her being "different" both in her eyes and her peers. I think right now I'm going to leave things as they are, which means she stays in class and just ices there. I'm not sure that's the right thing to do, but I hope it is! :)