End of a long week . . .

Hi everyone--

Sorry for not updating before now. It has been a long week. I am having dinner with my friend Anne tonight, and I must say that I am looking forward to a quiet dinner and a strong drink!

Grace had her infusion on Wednesday this week. It was another tough one. For some reason, she was shaking so badly that the nurse "blew the vein" when trying to start the IV. This isn't as scary as it sounds, though Grace is sporting a nice bruise on her left hand. It simply meant that we had to try again on the other hand. Because of Grace's anxiety, they had a nurse who specializes in "hard pokes" come down to start the IV. I had hoped that once the line was in and the meds were hung that Grace would relax, but unfortunately that was not the case. Once again this time she was very nervous and very nauseated--two conditions which seem to make the other one worse. She spent much of the infusion with her head over a basin, though thankfully only vomited once. They sent a specialist from Child Life Services (or something like that) to come up and talk with Grace and help her calm down. She practiced deep breathing with Grace, and also gave her a cotton ball saturated with peppermint oil. Peppermint is supposed to help nausea, and inhaling it is usually helpful to many of these patients. Unfortunately, Grace wanted nothing to do with these ideas, and though she did participate, I could tell her heart wasn't really in it. In the end, we ended up giving another dose of Zofran, which once again worked wonders. I must say however--though this probably makes me sound like a bad mommy--that Grace had it in her head that only the Zofran would work, and wasn't really OPEN to trying anything else. We don't want to get into a situation where she is becoming dependent on the Zofran, hence the reason we tried other things first. Oh well, we'll try again next time.

Then on Thursday, Grace had an appointment with the pediatric dermatologist. By this point in her treatment, Grace has seen quite a few different doctors, and she had clearly had enough by yesterday's appointment. Let's just say that her attitude, demeanor and behavior were a little "challenging" to say the least. We'll just leave it at that, shall we?

Today, Grace leaves for two days on a Brownie camping trip. She is nervous about being homesick, but I think we can both use the break. I've got all her medicines sent along, and one of the leaders is a good friend of mine (hi Heather!), so I feel very confident that she will do just fine.

Grace is up to about 89 pounds now--which is a gain of just under 10 lbs. Medically speaking, she's doing great. Emotionally, this has been a hard week. I'm not sure if it's withdrawal effects from the methylpredinisolone (we didn't do an infusion last week), or just all of this starting to take it's toll, but this week has been the most challenging in terms of behavior--emotional outbursts, obstinance, temper, etc. As I said, both Mama and Daughter need a break this weekend!

That's about all. For those of you who don't see Grace on a regular basis, I will post a picture soon so you can see the improvement in the lesion!

(By the way, the appointment with the dermatologist was rather anti-climatic, as I expected it to be. She prescribed an ointment for the lesion that will further help with the inflammation, but other than that said she concurs completely with the rheumatologists course of treatment. She will continue to be another set of eyes to monitor Grace, but her main treatment will continue to be monitored by the rheumatologist at Children's Hospital.)

Until next time,
Sabrina