Tuesday, August 30, 2011

One year with JDM

This past Saturday marked the one year anniversary of Kylie's Juvenile Dermatomyosits diagnosis. It is so weird but looking back, it's hard for me to even remember a time without it in our lives. We went from having perfectly healthy children (we even went 2 years without a checkup just because there was no need to take them in to the doctor's office) to having our oldest daughter diagnosed with a rare (3 in a million) auto immune disease that would pretty much control our lives on a daily basis. There is currently no cure for JDM.

JM (Juvenile Myositis) causes a variety of debilitating symptoms including:
• Muscle weakness and pain
• Severe fatigue
• Rashes
• Swallowing and digestive difficulties
• Lung and heart problems
• Vasculitic ulcers
• Calcinosis

I feel so extremely blessed that we live close enough to Seattle Children's Hospital where Kylie can get the absolute best care from doctors who have experience working with other children with this same disease. Thankfully Kylie's body has been doing a great job trying to get back to 'normal' but we are still faced with new problems continuously throughout this journey.

Since being diagnosed with JDM on August 27, 2010 Kylie has-
*Swallowed over 1200 pills
*Sat through at least 49 hours worth of infusions
*had multiple xrays including ankles and chest (3 or 4 times)
*CT scan
*2 pulmonary functions tests
*Had an EKG
*Spent over 40 hours in doctors offices
*Around 50 at home injections of Methotrexate (a mild form of chemo)
*Developed cataracts as a side effect from one of her medications
*Been on different forms of antibiotics 3-4 times in as many months
*Has had around 15 blood draws
*Has been put on an inhaler for what doctors think may be a form of asthma
*Has been having a steady cough for over 4 months
*Now has a case of retracting pneumonia that we can't find the cause of
*Has to be completely covered up from the sun with hats, sunblock and special UV protected clothes because the UV light from the sun can cause her disease to flare up.
*Has been on at least 10 different medications
*Has had to deal with the extreme physical & emotional changes that the steroids (that her body desperately needs to stay healthy) have caused
*Spent over 40 hours in the car going to and from doctors appointments
And yet she still smiles and hasn't
let it effect who she is as a person.
Pretty amazing huh?  She has grown up so much in this last year and dealt with more things than any 7-8 year old should but we are so proud of her! Our only hope is that her body can continue to get stronger so that we can hopefully eradicate the JDM from her body cause JDM SUCKS!!

Unfortunately this summer has been a bit rough on Kylie's health. She has had a yucky cough (that goes back and forth from being a 'wet' cough to a dry 'barky' cough) for over four months now. We have done numerous tests and xrays but the cause is still eluding us. The results from her recent CAT scan showed signs of 'retracting pneumonia' but we can't figure out what is causing it which means we can't prevent it either. We would appreciate all the prayers and good thoughts you can send this way so that we can get this thing figured out!!

All year long we have been saving all of Kylie's medicine containers so that we could add up the amount of pills she has taken over the course of this treatment. Kylie decided that to celebrate her one year JDM anniversary, she wanted to shoot those pill bottles and show JDM who's the boss :) What can I say, she's her father's daughter through and through lol! Not only did she get to use her own .22 rifle but with daddy's help, got to shoot some of the bigger guns as well. *Please note that Matt was right there by her at all times and all safety precautions we taken.*
Thank you so much for taking the time to read this post today, it really means a lot! This last year has been quite the experience for our family and we couldn't have done it without all of the love and support from our family and friends.

*For more information about Juvenile Dermatomyositis please visit the Cure JM Foundation website!*

*If you would like to show your support for Kylie by making a donation (any amount is greatly appreciated!!) to the Cure JM Foundation through her fundraising page, please JDM SUCKS.*

If you would like to start at the beginning and read my first post about Kylie and her diagnosis of JDM click HERE.


Jackie Pedro said...

What a brave little girl! I can only imagine what you've all gone through this year. Stay strong! I will be sending up some prayers for Kylie and your hubby and girls! Thanks for the great pictures. Kylie is beautiful!

Alexis said...

All I can say is that I am praying for you and your family. You have a very brave little girl!! She is going to grow up so strong!! Sending big hugs and strength for all of those days when it's too tough to muster up your own strength. Lots of love, support and prayers.

Julie said...

Big hugs to Kylie! She's such a brave and beautiful little girl! :)

Anita said...

She is an amazing girl! What a journey your family has been on! I love the photo college. Sending hugs to everyone. Could she be allergic to something that could be triggering the cough? Or even a certain food? I know my asthma is triggered by certain scents.

Judy said...

My heart is so with you and your family. All my blessing to you !! Judy

Jodi Collins aka Kharmagirl said...

She is SO very beautiful Jess...and SUCH a trooper! I also can't imagine what you all have gone through...she is lucky to have such an AMAZING mom!!

Sharfine said...

Such a brave little girl, who has grown so much in the last year. My prayers are with her always, each & every day.