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.

UP then down

The morning after Kourtney sent her happy, positive blog she woke up in distress. Her right eye was really sore (corneal abrasions are a problem with EB, and probably one of the most painful symptoms). Kourtney wanted to stay home, and in the past I would have let her, but instead we medicated her with pain meds and antihistamines and sent her to school. My heart ached for her as even using the computer, watching TV or playing with her iPod touch caused a lot of pain. Yet I knew that going to school would be better than sitting at home all day. She did OK at school, and after she went to one of her friend's house after her school with her electric wheelchair (thanks to our cloudy overcast weather). She really is loving being back with her friends and is loving the independence we are giving her. When she got home today, she fell asleep at 6:30 in her recliner chair, Todd got her ready for bed at 8:00 and she continues to be asleep.

Today I went to Children's to pick up supplies and drop off some swabs (I even managed to "fit in" a shopping trip). I thought it was rather amusing that the 3 different departments in the hospital I went to, I didn't have to ask for anything. I walked into the clinic and the receptionists, and nurses just handed me bags that said KOURTNEY on them. I even ended up having lunch in the back room with the receptionists in the plastic surgery office. I don't know if it such a great feeling to be so recognized at a hospital, although I must say it makes life a lot easier.

Shaelyn and I watched a movie tonight. It has been so wonderful to spend a lot of time with her. She said to me tonight "mom I like you as my mom, not as Kourtney' nurse", because it was all about Kourtney.

During times like these (eye problems, esophagus problems, infections, etc), I find myself in despair, especially when I hear Kourtney crying in pain. I had to physically remove myself from her the last 2 days because I feel her pain. I have learned through counselling that this is OK, and very important that I recognize what my triggers are. There is always going to be something and I have to find better coping skills. For years I was not able to walk away because we did not have the funding for a full time caregiver. I know that I was full of resentment and tried so hard to control her disease because I did not want to see her suffer. I know after the "infamous tub incident" I felt so guilty for not advocating for Kourtney that I became overprotective of her. I felt that I didn't know how to look after her and I didn't know how to show others how to look after her.This led to despair and severe depression. I now have not done a dressing change in over 6 weeks, I have no idea which area is blistered, and what is new and what is old. I simply enjoy looking at her beautiful face and talking about the girl things in life. What a huge change. I do know that eventually I will have to start assisting with the dressing changes, but Todd has recognized that it is a two person job now and I will not be left alone to do them. So if we don't have a caregiver around, we will do them together but make sure Shaelyn is taken care of during that time.

I have had to learn that there is nothing that can change the severity of Kourtney's EB, no matter how hard we fight it. I don't think I can change the pain I feel when she is in pain. The one thing I can change is burnout and allowing myself to take a break without feeling guilty. Yesterday, I just enjoyed the quiet drive into Children's Hospital and enjoyed my shopping trip at Metrotown. Todd told me he was glad that I was able to have a day to myself. It felt great to come home to Todd and Shaelyn's empty Slurpee cups, (Friday is Slurpee day), and knowing Kourtney was at her friend's home. I am enjoying this new life. I start work tomorrow, and am excited to get back into it!! The best part will be coming home and not having to be involved with the dressing changes, but to spend time with Shae, and tuck Kourtney into bed.

Kourtney's Turn

Hi!!

Today I get to write on the blog for a change.
I know you have been reading all of my Mom's posts and she says that she has changed. Well, she has!! I am soooooo happy that she can just be my Mom and not my nurse! This is how a day would go if she hadn't changed: I'd wake up and she would dress me and have no time for Shae in the morning, then when I would come home from school she would have to check me over to see if I didn't have any new blisters, then when she was done she would try to spend some time with Shae until my Dad came home around 4:00, then she would have to do dressings every night. But now her day looks like: waking me up, letting Mona put my clothes on, then that way she can spend some time with Shae, after school (for example) today she took me to Dollar Giant, 4:00 we watch Ellen, then my Dad puts my P.J's on, and my Mom puts me to bed. Now doesn't that sound better?

I LOVE MY NEW MOM!!!!!

Enough about my Mom, let's get back to me!! I am doing awesome! My new school is sooooo cool. I love being with my friends again. I was thrilled when I found out I had some of my best friends in my class. Well it was fun blogging!! Comment lots!!!

Kourtney

The Fog is Gone

This weekend I am starting back to work in maternity. I have been off work for 5 1/2 months now, and finally feel like I am emotionally ready to go back. For years I feel that I have walked around in a fog: preoccupied with dressing changes, IEP meetings, organizing caregivers, treating infections, setting up surgeries, Dr's appointments, and juggling medications, all while fighting ongoing sleep deprivation. This last month I have become a consultant for Kourtney's care and focused on just being Kourtney's mom. At last I feel like I can see clearly. My relationship with Kourtney has changed dramatically. We both feel free to be who we are naturally . . . mom and daughter. Although, physically, Kourtney's body has declined, her mental health is so much better since going back to school with her friends. Her sense of humour has been restored. When we got back from Mexico, Kourtney emailed me and told me that I looked like I had fallen asleep in a tanning bed. (I had a funny reaction to the sun).

There is still a lot of anxiety around Kourtney's bath time. I cannot be around when Kourtney has her bath, as Kourtney has a lot of anticipatory anxiety, and usually has herself worked up before her bath. This is something that has made me crazy over the years as we have given Kourtney many tools to help her cope with her anticipatory pain. Generally, once Kourtney is in the tub, she is OK. We are now starting using some positive reinforcement when she can try to relax before her bath. Positive reinforcement = bribes. She is working towards some things she would like to own.

We are using the honey dressings again, and although they sting when they are first applied, the results have been very positive. I have even sent pictures to the company, and they want to use them for promoting their product. In turn we get free stuff to try . . . speaking of bribes.

Well . . . what more can I say? Will this honeymoon end? I sure hope not, because it feels like there has been a huge load lifted off my shoulders. I feel I can get out of bed in the morning and not dread the day. I also know that there is a team in place that is committed to looking after Kourtney. I realized how much they cared when we were in Mexico. It was pretty cool leaving my children, and not having to worry. Thanks to everyone for your prayers, during this difficult journey.

Janelle

Letting Go = Setting Free

Kourtney is still in a vulnerable state with her skin as it has not healed since the events of August 2008. We continue to monitor and swab for infections as we try to dress her wounds the best we can. She is in considerable pain and reminds me of a football player, who after playing a great game, reveals that his ribs are broken and that he took cortisone shots before the game and at half time to make it through. Kourtney is still tougher than this.

Janelle continues to take a "hands off" role with Kourtney's dressing changes, acting as more of an advisor. Her years of experience are invaluable to me as I have learned everything I know from watching her. As unrelenting as Kourtney's EB has been over the years, Janelle has faced the challenge head on and has not shied away from this cruel disease. It has been said by some that she has set her standard of care for Kourtney too high. I think that it just goes to show how deeply she cares and how competent she is.

The day Janelle was admitted to the hospital I called Mona, our caregiver, with the news that she and I would be in charge of Kourtney's bath and dressing change the next morning. As we did the dressing change together we both shared about our sleepless night; laying awake rehearsing how we would dress Kourtney's back, which dressing to use on her knee, which cream to use on her arms, and did we have enough dressings to make it through the rest of the week. At the same moment we felt, deep in our gut, the massive feeling of responsibility Janelle had carried each day. Even as I visited with my parents one evening I felt like I wasn't investing myself in the conversations as I was thinking ahead to next day's dressing change at Children's Hospital. It was not hard for me to see how all consuming this was becoming. I had done my share of dressings over the years and had been Janelle's assistant many times, but I had never understood the magnitude or complexity of caring for Kourtney. I can see how Janelle, the nurse, has had no time or energy to be Janelle, the mom.

If there is an opposite to "letting go", it must be "holding on". We had been holding on to Kourtney's care so tightly over the years that it had become a part of us. We couldn't make a decision without running it through the filter of how it would affect Kourtney: family vacations, trips to the park, going to the mall, birthday parties. Everywhere we went we would have to take into account her special needs for toileting, medications, , G-tube feeds, climate control, seating, physical safety, and on and on. Believe me, going to the lake for an afternoon is not as simple as it sounds. This was our life, holding on, because it kept Kourtney safe and it worked. But the truth was we were basically slaves to Kourtney's care. I know it sounds kind of harsh but it was something we couldn't get away from and it wore us down.

So, on with the letting go. Janelle physically let go by checking in to the hospital after Christmas. Janelle and I both let go by taking off to Mexico for a week. Kourtney has let go by allowing others to take over the dressing changes. Caregivers, doctors and nurses at Children's Hospital, friends from church, and family have all stepped in to carry the weight we had been carrying for so long. We are also looking at bringing one or two more caregivers into the home to help us out. By letting go, all of us have been set free. Janelle is free to be a mother and wife. She can go out with friends knowing that there are others in place who can make those tough decisions. I can be the husband and dad I should be. I feel free to go out with the guys knowing that I'm not unloading my responsibilities on Janelle. Kourtney is free to spend time with friends without a parent or caregiver being with present at all times. Each of us has been set free to be who we are meant to be and as a result are more able to meet each other's needs. And then there's Shaelyn . . .

This afternoon, Shaelyn and I took the Skytrain into Vancouver to watch the Canucks "super skills" event. We're not big hockey fans but we enjoyed the fun atmosphere and Shaelyn especially liked watching the huge Orca Blimp circle the building. After a quick stop at Metrotown to pick up a new Build a Bear (how could i say, "no?") we headed back home and called it a good day. All of this has been tough on Shaelyn, but we are so thankful for her beautiful spirit. She loves her teacher at school, is fascinated by all living creatures, and has a special bond with Kourtney. One minute she is writing Kourtney an encouraging note, the next she is tickling her and trying to tip her chair over. She is enjoying more quality time with her mom now that Janelle is not as involved with Kourtney's dressings.