Wednesday, September 15, 2010

Long day at Children's

Juvenile Dermatomyositis
(der-matt-oh-my-oh-sigh- tiss)

Kylie and I had a VERY long day yesterday! She had a full day of infusions and testing scheduled which means we had to leave our house at 5:45 AM to ensure that we could get to Seattle on time during rush hour traffic. We were still a few minutes late but we made it in one piece :)

The first thing she had to do was get her infusions. So we were sent to Oncology where she got her IV in place (after they got a few tubes of blood from her) and we got comfortable. We weren't in a room but more of a sectioned off area with a total of about 12 'room' all together. Each had a couple of chairs, some medical machines and TV. Thankfully I had brought lots of things for Kylie to do as well as my laptop because it took about 6 hours to complete the two infusions!

After that we went straight to the Pulmonary Functions Lab where Kylie had to get a breathing test done. She didn't do so well on that so that may be something we have to work on at home. (Building up her lung strength back to where it was).

After that we had about 45 min. until her next appointment so we went to the gift shop so that she could pick out her charm (we have started a 'tradition' where Kylie gets to pick out a new charm from the gift shop every time she goes to Children's Hospital) for her charm necklace. She ended up choosing one that said 'boy bait' and daddy wasn't too happy about that lol!

Our last appointment was to meet with the Rhuematologist that diagnosed her at her first appointment. She was almost bouncing in her seat to share the results of Kylie's new blood tests with us! Are you ready for this? All of her blood tests came back NORMAL!! I can't even tell you how happy that makes us! She is still a long way from being 'cured' of her disease but this shows us that the meds that she is on are doing exactly what they are supposed to do. We have even started the process of getting ready to taper her dose of Prednisone which will be a huge relief! It has disrupted her sleep schedule as well as made her feel hungry ALL of the time! It's weird to have her asking for weird foods all of the time (like the roast beef sandwich she had for breakfast lol!) because she always 'ate like a bird' before all of this happened. She has only gained half a pound in the last two and a half weeks which is great considering the high dose of steroids that she is on!

So all in all, things are definitely looking up :) Thank you so much for all of the kind words, thoughts and prayers that you are sending out for our daughter and family!!!

6 comments:

Julie said...

Big hugs and thoughts go out to you guys!!!

jigglymills said...

That is so awesome! Those tests are never fun and she always looks like a true trooper in all the pictures you post! Yay!!!! Sending lots of good thoughts!!!! :)

Crafty Math Chick said...

AWESOME news Jessica! YEAH! WOO HOO!

~Meredith

PS = Um, 'boy bait'? Uh oh, you have a heartbreaker on your hands...

Anonymous said...

Great news!

Wendy said...

She's a trooper! Give her hugs for me!

g said...

so thankful to hear good news! {{BIG HUGS}} to all!!