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!
