Tuesday, August 31, 2010

It's been a long, hard week

to say the least! For those of you who are my friend on Facebook, you may have been aware that I have been going through some very difficult things this last week. For those of you who don't know, I will start at the beginning.

At the beginning of this month our family moved into a new home and around the same time we noticed some changes in our oldest daughter Kylie. Just little things like a change in her walk, she wasn't playing outside as much, changes in appetite. When I started to notice these things become more apparent I scheduled her for a checkup so that we could check to see if she had a vitamin deficiency or something. Because she was a new patient, the earliest we could get an appointment was Wed. Sep. 1st. As the week went on and Kylie seemed to be getting a bit worse everyday (to the point where it was difficult for her to walk more than a very short distance without being completely exhausted as well as not being able to lift her arms up), I decided that I couldn't wait any longer so I took her into a walk in clinic so that we could at least get her checked out and to get some blood tests done just to ease my mind. This was 2 Friday's ago. When I called in on Monday evening for the results you can imagine how I felt when I was informed that the results showed that Kylie has some major inflammation going on in her muscles and that the doctor recommended that I make an appointment to get her looked at and preferably at Children's Hospital. I got off the phone and told Matt what they said and then sent him to pick up a copy of the results. Since the person I talked to couldn't give me any information what so ever, I dove into hours of research into the types of blood tests she had done and then finding out the possible causes for certain results to be higher/lower than normal. After I had a list of possible causes, I researched every single one of them to compare them to the symptoms that Kylie had been exhibiting over the last 6 weeks. The one thing that kept popping up was Muscular Dystrophy. Since there are many different types of MD and after I started to research them, I came across something called Limb-Girdle Muscular Dystrophy. I got absolutely sick to my stomach. Kylie had all the symptoms of this disease (that has no cure and would result in her being wheelchair bound in a few short years as well as not living long into adult hood). First thing Tuesday morning I called Seattle Children's Hospital to make Kylie's appointment. They were able to get her in on Friday morning but I spent most of the week feeling sick to my stomach, having random crying spells and just trying to keep it together so that I wouldn't freak the girls out.

Friday morning Matt and I dropped the two little one's off at a friends house and headed up to Seattle with Kylie. She was feeling nervous so I sat in the back seat with her so that I could cuddle with her and make her feel better. About half way there she started crying and begging us to turn around and take her home. It broke our hearts to not be able to do that even though we wished that we could!

Children's Hospital is absolutely amazing! Not only is the inside beautifully decorated to make any kid feel welcome but the staff there are the most caring and patient people that I could ever have hoped for!! We had a very short wait time before Kylie was able to see the Rhuematologist and she did a great job of making Kylie feel comfortable and not scared. She did a short exam on her and asked us a bunch of questions and then delivered the best news that I have received in my entire life- Kylie does not have MD!! She does have a very rare (about 3 kids in a million) autoimmune disease called Juvenile Dermatomyositis (say that 5 times fast...) but after two years of treatment she should be completely cured! They told us that they were so glad that we were paying attention and brought her in when we did. They admitted her straight into the hospital to begin an intense 3 day course of IV treatment of steroids and a bunch of other stuff. I was worried that the drugs would initially make her sicker but was relieved to see that they actually made her stronger. Kylie went from hardly having enough energy to walk 20 feet on Friday to being able to walk around Children's Hospital a couple of different times on Saturday! She responded really well to the drugs and passed her EKG/Echo/Swallow Eval. so they said that they were comfortable with discharging her on Sunday.

Kylie is now on a treatment plan that will most likely take 2 (maybe even three years). Every morning she has to take 4 different pills, another pill at night, an injection once a week (given by me) plus she will need to go back into Children's Hospital almost weekly for awhile to get an infusion. While this is a lot to go through, I can't even describe how absolutely thrilled I am that it isn't MD!! Going from believing that I was going to lose my child from an incurable disease to finding out that she should be completely cured within two years was the best gift anyone could have EVER given me!!!!! Talk about a major wake up call, these beautiful girls of ours will never be taken for granted again.

So there you have it. That's what has been going on in my life this last week!

Chest x-ray
She didn't seem to mind the EKG too much
Getting her ECHO done
First night at the hospital (getting ready to lug her IV machine into the bathroom with her)
Day 2- Finally feeling better so we went on a short walk. These beautiful giraffes were right by our room area.
Sitting by the window in her room
Talking to her sisters on the phone. All three of them had a hard time being away from each other and Kylie even cried quite a few times because she missed them so much!
Two of the best nurses in the entire world!! On the left is Melissa, Kylie's night nurse and on the right is Rilla, Kylie's day nurse. These two ladies were absolutely amazing and I couldn't have asked for better care for my little girl :)

Kylie's meds for the next two years
Gotta go, Kylie is calling me from the living room saying she wants to cuddle and there is no way that I'm going to pass up that opportunity :)


Jackie said...

Jessica, I knew things were going on and I understand her side of things. I have always had odd health issues and I know the fear of what the doctors will tell you, but I am thrilled that the Children's Hospital was able to help! I hope things get better soon, and while all those pills are horrible to have to do every day, it really be alright. Huge hugs!

Julie said...

Oh man, Jess I had no idea. So sorry to hear about Kylie but the good news is that she's going to be alright! Thank heavens you noticed when you did! I'll be thinking about you guys. :) HUGS

Cookie said...

Wow you have been going through alot! Its hard when our kids have a tough time with health issues...I am so happy to hear it is curable...Big hugs to you all...And speedy recovery to your sweet child...:D

Justine said...

I am so glad and happy that your story is going to have a happy ending. Thank you for sharing and just maybe that post will help someone else. Hugz

Cammy said...

Oh wow! What a scary time! I'm so glad to hear that Kylie will be okay and she received excellent care! The hospital looks amazing, btw -- love the giraffes. Big hugs all the way around!

Judy McMullen said...

Jessica, I'm so sorry Kylie and you had to go through this trial fearing the worst. And so happy her diagnosis was much better than anticipated and that she can be cured! I know what a wonderful place Children's Hospital in Seattle is. I have family and friends that have benefited from their awesome treatment and care. There is no better place for sick children to be.

Iwona Palamountain (Chupa) said...
This comment has been removed by the author.
Iwona Palamountain (Chupa) said...

My heart breaks for your little girl, but at the same time I'm so happy and relieved that she will be cured, and live a full life! My thoughts are constantly with you! Be strong, and take good care! Best wishes xxx

Linda L said...

Oh my gosh....what a week for your family Jessica. Glad your DD is getting stronger each day. Thinking of you all. xL

corinna said...

Oh my goodness!! I am so sorry you've had to endure so much, but so glad that you have gotten so much support and help at Children's Hospital! I'll be saying prayers for all of you!

Lori A. said...

God Bless your family and your precious little girl. I will keep her in my prayers that she will continue to get stronger and better.

Anita said...

Wow! I am so glad that things turned out the way that they did. Sending hugs! I will keep the family in prayer as you adjust to this. I would love to be in the hospital if it looked like that. At least the place looked good.

Lisa R. said...


While reading your story, I wanted to cry. I am SO happy that your daughter is going to be a healthy little girl again.


Crafty Math Chick said...

I am SO glad to hear things are getting better and that it is NOT MD! What a little trooper. I know the treatments are going to stretch for qute a while, but at least there is a light at the end of the tunnel right? BIG HUGS!!


faithnme said...

Jessica, God is "good ALL the time" Such a blessing for your famiy.. You all are great parent.. yesas a mother.. I know that we can look at our child at any give moment and can sence the smallest of their actions that let us know if something is not right... I will keep her in prayer.
Continue Healing and Blessings

♥ Kristy Young ♥ said...

OMG the poor lil darlin, but Im soo glad she will be ok. Thats alot of pills for the little sweetie. Childrens hospitals are the best arent they! My daughter spends a bit of time there she was diagnosed with diabetes when she was 3 (she is now 9) she has two injections a day given by me or hubby. And even though this is a life long illness for her I thank god that it wasnt anything worse. Im so glad your sweet Kylie is doing better and hope things starting getting better for all of you. Thanks for sharing your story.
Kristy xx

Kim P said...

Jessica, I knew something was up because of a brief note on the TSG swap thread, but did not want to pry.

I am so glad the news is good...available treatment and positive prognosis. Technology and meds are so much better than when I was a kid. I pray you and your family find daily strength as you live and work through this!

And watch that little girl closely. She might be a bit sneaky with "sore muscles" and "I'm tired" statements...my siblings say I manipulated my mom when I was a kid! LOL

Of course, I am convinced I was an adorable and innocent little princess every day!! ;-)

Leeci said...

God Bless both of you! Glad you went with your "instincts" and researched it...knowledge is a wonderful thing! Sorry she has to go through all that she will for the next 2-3 years, but at least there is a happy outcome! Prayers and hugs to you both!

Melissa Craig said...

Jessica, I am just getting around to catching up on my blog reading. I was shocked to read this post. I guess I don't pay very close attention to Facebook. I am so sorry that you, Matt, Kylie and the other girls had to go through this scare. It is such a blessing to know that your daughter will be fully recovered in a few short years. You know that with being a mother, time flies by. Its good to see in the photos that you posted that Kylie has a smile on her face! That's half the battle right there.

I'll keep you in my prayers and sending you and your precious daughter lots of huge hugs and happy thoughts.

Many hugs & blessings,

Jessie/knightrone said...

I am still weepy thinking about it, but I am thrilled that it wasn't as bad as you thought it was going to be!! Hug those girls for me, would ya!!

Michelle said...

How scary! Praise God it's treatable. I'm so happy for you. Thanks for the reminder to never take health for granted and not to ignore 'weird' symptoms.

Silke Ledlow said...

OMG....Jessica!!! My heart goes out to you and Kylie!!! I started tearing up when I read this .... now I'm crying because I'm so happy to hear the good news that it is not MS!!! I'm so happy they are able to treat her...my thoughts and prayers are with you guys and here is to a speedy recover!!!! Big hugs ~Silke~