Overwhelmed!

May 1st brought some unique changes as our caregiver took a medical leave. As overwhelming as it seemed for be to become a caregiver 5 days of week to Kourtney I also really was looking forward to spending time with her. Kourtney has been great and we have been having some quality time together in the mornings.

This last month we have finally gotten some concrete answers! Answers which will mean more physio, more surgeries and more doctors appointments. It is endless but also necessary to Kourtney's mental and physical well-being.

For the last year Kourtney has been doing intense physio on her hips to try and correct her stooped posture. The physiotherapist felt that Kourtney had bone contractures and that she had taken Kourtney as far as she could take her. After a 6 month wait list, one x-ray revealed that there is nothing wrong with her hips or muscles; it has been her protective way of walking and a habit that needs to be undone. This was met with a lot of frustration for me as we have worked with her so much with seemingly no progress. But knowing there is nothing physically wrong, Kourtney has taken this challenge on. However, there are and will be many tears as she mentally works through the challenges that this devastating disease brings. I have become Jillian Michaels and feel cruel when I make her push past her emotional and physical pain and sometimes have to pull her shoulders back or put pressure on her knees to straighten them. But the satisfaction and joy that she has when she is straight is reward enough for both of us. She is so much taller and walks a lot easier when her posture is corrected.

Kourtney has a tiny mouth from all the buildup of scar tissue in her mouth. Our biannual trip to the dentist at Children's Hospital became a gong show as a new resident would see her at every visit. We would get the "talk" about flossing and all the good things that normal mouthed people need to do. Then there was the look of shock when they looked in Kourtney's mouth and the, "OHHH I understand why it is difficult to floss." EVERYTIME FOR 2 YEARS I DEALT WITH THIS. I took my plight to Dr. Courtemanche and told him I wanted to see THE Dentist not just a resident. So about a year ago we saw THE Dentist. He is an older man and asked Kourtney what she wanted him to do. She said, "I want straight teeth and I want them whiter." So with tears in his eyes this elderly man with ginormous hands cleaned her teeth, referred her to an orthodontist and gave us hope that she may be able to put invisalign braces on her.

Due to procrastination on my part I didn't make the appointment right away and then when I did there was a 6 months wait list. So Todd took Kourtney in 3 weeks ago and met a very compassionate orthodontist who seemed confident that invisalign braces would work for Kourtney! Of course though she will require surgery as her baby teeth need to be pulled and she will also need some adhesions released from her mouth (inside of her mouth has grown to her gums). While she is under anaesthesia the orthodontist will make molds of her mouth for the braces!! No wire braces for her, just soft gentle braces that won't touch the gums. Surgery is planned for this summer.

July 20th will be the day that Kourtney will get to see a doctor about a prosthetic arm! The doctor is quite excited about fitting Kourtney due to the fact that Kourtney has all her tendons and nerve function to perform the tasks for working the arm. We are praying that this works out for her as we know independence is everything.

We are terrified and excited for what this summer holds. I know my biggest fear is that we may be disappointed with the results as we continue to try to control this silly disease. Once again I have to remind myself over and over again that God knows and His timing, His Grace, and HIS UNDERSTANDING is always perfect, and with that knowledge I can rest safely in his arms.

We are also planning a trip to Saskatchewan this summer. Shaelyn is in a skipping tournament in Calgary and then we will head to Saskatchewan for a little over a week. Why Saskatchewan? Because family is what my girls eat and breathe. My parents were here for a week and then we took them to Kelowna to be with my brother; it was so difficult to say goodbye. We look forward to seeing them in 6 weeks or so!

Since our trip to Hawaii, Kourtney's skin has taken a beating. I am guessing the antibiotic we had her on was a bit too strong, dried her out a bit too much which made her itchy, causing more blisters and the cycle starts! Once again we are clearly reminded each day that we can do nothing to control this disease!

She' BACK!!

The weather this spring has been absolutely dreadful. We had snow in April which has been very unusual for us.Generally with the gloomy weather comes depression for myself and Kourtney but since our return from Hawaii the sun has been shining in our home. The witty, happy Kourtney has made her comeback.
What happened? I believe it is a combination of 3 things: meds, overall health and her taking charge of her disease. We increased one of her medications called Elavil. It is a 3 in one pill that helps with depression, pain and sleep. She tells me she is sleeping better at night, we all know what a good sleep does from ones' mental health. Kourtney's health has been very good this winter, I think she has had only one cold, and one skin infection treated with antibiotics. Her hemoglobin has remained the same at 111 for the last 6 months which in itself attributes to health! I have also noticed Kourtney doing a lot more for herself in the last few months, weather that be putting on her shoes or getting off her butt and finding the remote (you know how many times she will ask for it and that is my response).

We still deal with tears in the morning and during a dressing change but she comes out of her lament a lot quicker then she used to. IT is very exhausting for the caregivers who do her dressings and for us when we listen to it. Nothing breaks a parent's heart more then to hear their child in pain.

So all in all life is good for all us! Kourtney will see an orthopeadic surgeon for her hips and also an orthodontist to pull some teeth. These will be great visits as they will aide us in helping Kourtney with exercises.

2 weeks ago we had a transition meeting with the high school. Next year Kourtney will be entering the high school domain! She is looking forward to it!

Shaelyn and I are headed to Nelson for a skipping tournament in 2 weeks and then we are looking forward to a visit from my parents. May is going to be a busy month for us!

Self Talk

Over the years I have learned to do what I call self talk. (not to be confused with talking to yourself). I believe that this has become a coping mechanism of sorts to get me through my depressing times. For example, after we booked our trip to Hawaii I was really kicking myself that we had not booked our trip for 10 days instead of 8. I was hoping that 8 days would be enough and that we would be rested enough after our time there. Especially if you could see what we need to take with us for Kourtney. We met some acquaintances in Hawaii on our first night and they were planning on staying 2 weeks. Shoot! I wished we were staying longer. But as the time drew near the end I was able to convince myself that 8 days were perfect and we were ready to take our sunburnt and sand filled bodies and go home. I enjoyed the 8 days but convinced myself that it was adequate. We saw our acquaintances on our very last night there and they still had another week left and really there was little or no twinges of jealously left in my body. Over the week I was able to have enough conversations in my head that I was at Peace with it! But then when we came home to the rain and those feelings of "I don't even feel like I left" started entering my head and once again my little self talk began in my head.

As the old saying goes "the grass is always greener on the other side". Through my self talk I have learned to add to it greener but it probably doesn't smell quite as good because nobody sees the manure that went into getting it that way. I struggle regularly with not being able to do "normal family" things but then I am reminded that our trips to Florida, Arizona, and Hawaii are extraordinary and somehow there is a provision made annually for us to do this. I still find it difficult watching people's reactions when they see Kourtney's dressings and hands but I rejoice when Kourtney's You Tube video is so popular that they want to put advertisements on her video. I mourn when I see teenagers developing normally, but know that her disease also stops her from getting her into teenage trouble. I am envious of the people with big houses and view lots but reminded that a swimming pool can't be put in a view - I am so thankful for our yard.

This is the mindset that has gotten me through and almost daily I have to remind myself that really our lives are great. Yes, Kourtney has a cruel skin disease but that cannot stop us from living and living well. It is pure freedom to be able to "look on the bright side" and for me I don't think I have to look very far because it is sitting right here in front of me!!

So having said all of that we have plenty of things to look forward to in the months to come (skipping tournament in Nelson, weddings, a weekend getaway with Todd and I, specialist appointments, etc.) I don't dread it I have learned to embrace a busy and full life.

Aloha!!

I am sitting here in our hotel room at 6 am. Todd, Shaelyn and Bev are going snorkeling so I was up and about getting them ready. I can't fall back to sleep so I decided that I will do my most favourite thing in the world and get my thoughts out!!

So this trip has been monumental as most of our trip are but this one has been amazingly relaxing for us! We really haven't done any extracurricular activities except beach, pool and a wee little bit of shopping! But we really haven't had to as we are all very happy relaxing on the beach. I feel like the girls have "grown up" so much since our last trip here 3 years ago that we don't have to plan a lot of things to do.

Kourtney has done extremely well this week. She is such a great traveler and the jet lag doesn't seem to affect her. The ocean water has been miraculous for her skin. Her sores heal up so quickly. During this trip I have watched her transform from a depressed teenager to a relaxed, happy, witty teenager - that is my Kourtney. The daily dressing changes are going extremely well and if you notice in the picture she is starting to even stand straight. We have worked very hard on this; it is so nice to see the results. The last time we were here was probably the first time I started seeing her depressed (sitting for hours not saying anything) now she is chatty and very happy.

Shaelyn, our amphibious child, continues to amaze us with her love of water. However, on our second day at the beach she got too much sun and despite a 30 and 60 sunscreen burnt her shoulders to the point of blistering. She is now reaping the results and has a lot of flaky skin to shed. After that day it turned her off the sun and the beach for 2 days, but now she is full steam ahead. Unfortunately her underwater camera wasn't working after her first swim. She was so looking forward to taking pictures today!!

Todd and I are enjoying ourselves immensely. During my morning runs I have literally run into random people (one of our former nurses and Shaelyn's teacher). We have seen people from our church and then just people we seem to know. Todd seems to be able to steal a nap every time he lays down and enjoys going for long swims with his yellow snorkel set!

So for those thinking in your minds "it must be nice", how can they afford this trip? I need to remind you that for us to be able to go on tropical vacations is absolutely and completely necessary for our family. We almost can't afford not to make this a priority in order for us to break the redundancy with an above average stressful environment at home. Hawaii and other vacations become our happy place especially when the going gets rough at home.

As Shaelyn said it so well, I am looking forward to going home to see the dog and cat, but when I see them I will miss the Hawaii sunshine and the water. That would translate into I have had a great time but ok with going home. The girls miss Lexi very much and are excited about getting their faces licked when they get home!!

Most Embarassing Moment EVER

So, yesterday I had a surveillance colonoscopy done. It was all clear and I recovered from it quickly. Unfortunately due to the sedatives that I was given I felt I was a bit unsafe to drive into Vancouver the next day (Tuesday) for Kourtney's iron infusion. Vanessa kindly obliged to come into town with us so we left at 725 in the morning. It took 2 hours to get into town and much to my dismay the regular nurses were not around who put Kourtney's IV in. So we had to wait 2 hours for an IV nurse. A part of me thought that I should just start it myself but I could not bring myself to do it.

Kourtney was supposed to see the physio during her iron infusion and of course she showed up the same time the IV team came. GONG SHOW!! Kourtney remains on strict isolation so the IV team were gowning  gloving and masking. Yes, I did say team. We had two experienced nurses for the price of one!! I am not sure why the duo but I began feeling this was going to end up in disaster.

The short story is after the 3rd poke I finally stepped in did it myself. These other two apparently could not hit the broad side of a barn. To tell you the truth they are soooo sweet but I think they were just so nervous about hurting Kourtney that they totally overcompensated.

So after all that we settled into a funny movie and enjoyed it. Unfortunately the nurse forgot to call the Doctor to tell him we were there as I had to talk to him about a medication for Kourtney. Near the end of the infusion I reminded the nurse again and she said it would take 20 minutes for him to see us (more waiting). As the clock continued to tick away Kourtney had to go to the bathroom. I asked if she could wait (stupid question because when Kourtney has to go she has to go). So we maneuvered her and the IV to the bathroom and my words were, "Watch as soon as I get her on the toilet Dr. Davis will come in." Sure enough,  I just shut the door to the adjoining bathroom and Vanessa giggled and said, "You were right Janelle." So I got Kourtney settled on the toilet and greeted Dr. Davis and his resident. I was standing by the bathroom door as we began our conversation but I could not hear what saying as the sound coming from the bathroom was filling my ears.  It sounded like a coffee purcolator. Apparently I was the only one who heard it and began laughing uncontrollably. Unfortunately nobody else joined in my laughter. I  heard someone say that sorrow and laughter are closely related  and when you throw in the sedative from my colonoscopy hysteria ensues!! As the tears were pouring down my face and I was holding my sides, the conversation continued but I could not answer due to my hysterics. Vanessa pointed out to the Dr that it must of been the medication from the colonoscopy that caused this reaction. He left to write a prescription and the little coffee coffee purculator continued to make her little noises. She held it all in while he was in the room!
He came back in and I was much more composed although I felt really stupid we were able to talk about colonoscopies and I pray that I recovered my composure . Embarassing but I think humour sometimes is needed especially in situations like this!!