Kourtney's Speech

Today I presented my speech to my class. Here it is.

Have you ever heard the statement " Everyone has a twin"?
Chairperson, honorable judges, ladies and gentlemen and fellow students I am a lucky person because I have met my twin. The funny thing about my twin is she is 7 years older than me and she lives in Florida.

My twin's name is Megan. I first saw her in Minneapolis last summer where we both were going to attend a skin disorder camp. When I first saw her I started sweating and it wasn't because of the Minneapolis heat, but because I saw a mirror reflection of me.

We became instant friends as we sat beside each other on the 3 hour bus ride to the camp. During this time we discovered our similarities were more than blonde hair and hazel eyes. We have the same tiny feet, our Moms are both nurses and we have the same way of eating. If a scientist were to look at us under a microscope they would say we have the same genes. I'm not talking about jeans that you wear, but genes that give us the same skin disorder called EB. I knew I really liked her when she pulled out her iphone and called her mom. She told her mom that she just met her, "Mini Me".


We also realized we had similar interests. We both have our own swimming pools, we like the spinning rides at Disneyland, we are computer whizzes and we like the T.V show, Ellen which we watch each afternoon at 4. Although we have many similarities there are a few things that are different. I love to sing and she doesn't. Megan loves politics and they do not interest me at all. For the most part, however, we are very similar.

Megan is very inspirational to me because she does not let her disease stop her from doing anything. During the camp we were going horseback riding. I did not want to, but, with Megan's encouragement, I did it! She also encouraged me to get out of my wheelchair and dance. She was the one who signed me up to sing a solo at the talent show, which I really enjoyed.

Having found my twin has been a life changing experience for me. Megan is a wonderful inspiration, fun, caring, good friend and is always there to give me good advice. Though we live miles and miles apart I know that Megan is only an email away.

May you be as fortunate as me too and meet your twin soon! Thank You

NO NEWS . . . IS GOOD NEWS

It has been over a week since my last blog entry. No news is good news. The drama in our house is starting to settle down. The last 2 dressing changes have given us a reason to be cautiously optimistic that Kourtney's skin is starting to show signs of gradual improvement (it really hasn't gotten any worse since our trip to Mexico). The last 2 baths have been the least painful she has had in months. She also bought herself a Wii Fit and it has helped improve her posture and is decreasing the stiffness in her hips. Last week Kourtney was called up by our music pastor at church to record a demo song for our KidsTown group at church. Kourtney loves to sing and felt privileged to a record a song with her friend Jennifer (our music pastor's daughter). She is keeping herself busy with school and at the present moment is working on her speech for school.

Todd continues to be off work, and is continuing his active participation in doing the dressings and taking care of Kourtney's needs. He also has managed to do some projects around the house including a repairing damage to a wall and carpet caused by a leaky tap and a poorly constructed planter in the front of our house.

Shaelyn is excelling in school and is getting top marks in all her subjects. She has Madagascar 2 memorized and loves to talk like Moto Moto. She has great memories of her Uncle Carlin and girlfriend (now wife) Stacey being here and going to that movie with them. Zazu (our foster cat, or adopted cat) is her constant companion and has been staying clear of her fish bowl. This week I was listening to "praise 106.5" and someone called in about a cat that they had adopted. They tried to find the owner but could not locate them. The husband was not a cat lover but eventually became very attached to the cat and the cat attached to him. I found this story so interesting and relieved we were not the only ones that had fallen for a stray cat. I did not catch the person's name but found out this weekend that it was my friend Carla that called in. She had not read our blog and I had not told her about Zazu, yet we had exactly the same story (except it was me that did not like the cat).

I have returned to work, and love working in maternity more then before. The new hospital makes a huge difference and allows for a very positive birthing experience for the moms. I love the babies and encouraging the moms through labour. I also received a very encouraging email this week from someone and it totally made my day.

Valentine's Day....

Happy Valentine's Day to all.

Just wanted to tell you that Kourtney went to school full time for the last 2 weeks!! Yay!! We are headed off to Bellingham for dinner at the Olive Garden and some shopping.

Todd and I did a dressing change today. I haven't done one for a long time!! Kourtney's skin is still very broken down, although she states the pain is less (hopefully that means the MRSA is backing off). Todd has done very well doing the dressing changes, along with Mona and Lorraine. I have to applaud them for their patience, perfection, and persistance in doing Kourtney's dressings. It is a labourious task, as I rediscovered today.

Love, Janelle

1/2 year later . . .

It has been almost 6 months since our really rough road began. Today . . . Kourtney had enough energy after school to go shopping with me . . . walking around and not getting tired. Generally she comes home and crashes in her chair, but today was the breakthrough day. I had tears in my eyes as I watched her running down the aisle looking for her Wii fit game (it wasn't there but she has saved her money to get one). Today was a great day! We need to celebrate these good days and look back on them as encouragement and comfort to help us through the difficult times ahead.

We are having a celebration supper tonight with my cousin Leanne and her family (Tricky Ricky as Shaelyn calls him and Katelyn). They have been such a huge support for our family during this time and I am thankful for them. Their oldest daughter, Brittany, returns from YWAM Hawaii tonight and is planning to be our newest caregiver in the very near future.

Eye problems continue . . .

Sunday morning Kourtney woke up without crying, her eye problems had been alleviated, but mine were just beginning. I went to work and was told over and over again that my eyes were very red. One of the doctors told me it was allergies, but then they started getting goopy . . . how disgusting. So off to our family Doctor and it looks like I have a strep infection in my eyes (nice). The most interesting part of this is that all the years I have been looking after Kourtney I have never have had strep, staph or MRSA. Now that I am not involved in her direct care I get strep. Weird!! Now it is Tuesday, and my eyes are all better . . . so I am going off to work to do a night shift.

This morning Todd and Mona did a dressing change. We feel that Mona needs to stay current with the dressings, so once a week Kourtney will have her dressings done in the morning. It is also very nice to have a free evening also. I took a look at her back, and WOW, what a difference, it looks great. The honey dressings are working their magic on her back. Her swabs showed that she still has MRSA growing on her skin, and Todd and I both feel another round of antibiotics would really aid the healing. We will find out soon what the decision is. She just told me this is the first time in months she hasn't had pain (ya!!!).

Kourtney came home from school very happy today. She loves school and life. Shaelyn has also settled into a great routine and her teacher has commented on her happy disposition now.

So . . . life's new normal, is becoming routine. We are planning a trip to Disney World with Make A Wish in the early spring. It gives our girls something to look forward to. Todd is keeping himself busy finishing up projects in the house and I am starting to train for a 1/2 marathon.

Thanks to you all for your support and encouragement. It has been a long grueling few months but all in all we have become stronger, more resilient, and have put a great team in place for managing Kourtney's care.