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 :)
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