We are Home!

Last night they weaned Kourtney off the morphine and she did very well although she was very sleepy. Our goal today (Sat) was to go to our caregiver Lorraine's wedding. However, Kourtney still needed to get an iron infusion Saturday morning. We had cancelled her q6 weekly infusion knowing she would have an IV for her surgery. Unfortunately the morphine and the iron could not go at the same time. The IV held out until 1 hour before the infusion but went interstitial causing a very swollen arm. There was no way that she could handle another IV poke; we wanted to get out of there for Lorraine's wedding.

Disappointed and emotionally fragile, I honestly felt I was on the verge of an emotional breakdown. We got home 45 minutes before the wedding started, I hadn't showered in 2 days and  Kourtney's dressings needed to be done. After the dressing change she was so drowsy I didn't think she would make it to the wedding reception. She was also concerned with the way she looked, although she hasn't peeked, and I was worried about the stares she would get. The plan was that Shae and I would go to the reception and Kourtney would come later with Todd just to see Lorraine. Tonight though, something very unexpected and beautiful happened. I'll get to it in a moment.

Last week I sat in our "center court" service at church. Our pastor prayed for Kourtney and I cried through most of the service. Only one lady other than my mom in law came and sat and talked to me. The service was full of people that Kourtney and I both knew (I am sorry if you are one of them but you've got to understand how much it hurt). Not one person came and talked to Kourtney and I after the service, not one person sitting in that service sent a email or facebook message, not one person remotely showed that they cared. I even saw one person walk a big circle around us so she didn't have to say anything. I came to the realization that its not they don't care, but that they don't know how to care. It was a  realization that came over me like salt on an open wound . . . it hurt more then anyone could imagine. JUST SAYING!! 

With that awkward and uncomfortable moment in my head I wondered how Kourtney could go to Lorraine's wedding with a scabby mouth propped open,  a swollen face and constant drool in her mouth.

At the reception we got seated with Lorraine's biological mom and 2 step brothers and sisters. Knowing some of Lorraine's history, I knew that they were somewhat estranged by Lorraine's family. Lorraine had  been able to look past all the "wrongs" committed in the past and has a genuine love for her family sitting at the table with us. They had met Kourtney before and were so looking forward to seeing her at the wedding. Lorraine's mom even cried when she found out Kourtney may not be at the wedding. Allison and Carter expressed her disappointment when she saw me come without Kourtney. While we were eating, Todd came in and told Lorraine that Kourtney was in the van. Lorriane and Brett took off like a shot and so did her step brother and sister. I warned them that Kourtney looked different. None of them cared, they came to see Kourtney and genuinely cared for her. After an awkward moment Kourtney made the brave decision to enter the arena of stares and awkward silence. But that did not happen, instead she was greeted with hugs , and well wishes from people she didn't even know. How Beautiful was that! Lorraine's mom was thrilled and told me that she knew it was hard for all us but how much joy she had knowing Kourtney was there!! Wow! Can we ever learn a lesson from the brokenhearted.

After that we were blessed by a visit from the beautiful Visser family!! So much Peace came to me after that; so thankful for them!

Advice for the next time there may be someone hurting . . . try a hug, an email or Starbucks card (HEE). Don't even try to do it now because . . . well it would be a bit patronizing.  It speak volumes! Doing nothing for fear of saying or doing the wrong thing is way more hurtful, than someone who sticks their foot in their mouth!  Please read this and take action, because what Lorraine's family did for Kourtney and I today made the world of difference to us!

I have to say though that I do have great support many great friends and family! I just needed to point out that our ability to care in a church has become a disability. The place where we should feel the most love and acceptance is the place where we feel the most rejected. WHY? I don't know, but I hope to change that!  

Day 1

Kourtney had a good night last night. She is well medicated and is very peaceful despite all that is going on her little body! We have seen a dietician, and many doctors that we needed to catch up with. We will be here for at least another night and hopefully home tomorrow.

Once again I feel overwhelmed by how big this surgery was and can't wrap my head around how this is all going to play out in the long run. I just don't have a lot of Peace about it right now.

I also am missing my Shaelyn. She has made the decision not to come in in her wise little way. She says she is nervous about seeing Kourtney and then having to leave her she would just worry about her. Instead she wants to see her when she knows she isn't going to leave Kourtney and I at the hospital. For a 10 year old that is very impressive.

So where do we go from here? I am really not sure, this void I feel is pretty huge and I am wondering when it is going to go away. We are looking forward to our annual Saskatchewan trip and spending time with family. We are hoping Kourtney will be healed up enough to enjoy the trip and be able to sing - not sure, but we can sure pray and Hope.

Whew!

I am sitting in Children's hospital, on a lumpy cot that I will call my bed for the next two nights. Kourtney is stable and resting comfortably with a Morphine infusion running. Her mouth has been opened to twice the size it was and she has a mouth guard of sorts keeping her mouth open to allow for healing to occur. It is rather shocking to say the least to see her like this nothing could prepare me for what I saw today. Fortunately the mouth guard will only be worn for 5 days and hopefully the graft sites will be healed up after that. Dr. Courtemanche was very inventive along with his counterpart Dr. Fung (a periodontist) in coming up with this "stent" of sorts.

I have say that the buildup to this surgery was one of the worst we have encountered. Kourtney and I felt it the worst as we still wallow in the lingering disappointment of her hand surgery last year. In a previous blog I wrote about how Kourtney wanted straight teeth and then went to the orthodontist who gave her some hope that she could wear Invisalign braces. Of course nothing is easy with Kourtney so she would have to have surgery on her mouth before they could make impressions of her teeth so we had to got to Dr. Courtemanche for that but when he saw her teeth and the way they were touching down on her lips he became more concerned for the integrity of her skin and the braces became secondary.

The surgery date came rather quickly after our visit with Dr. Courtemanche, which gave us little time to wrap our heads around what this involved. Without going into a lot of detail we were sent into a tailspin by Dr. Loo's receptionist who gave us a very inaccurate account of what was going to be in store for Kourtney. The more she talked the more I wanted to sit, rocking back and forth with my hands over my ears repeating, "Shut up! Shut up! Shut up!" Finally after about a week of not really knowing what the surgery involved we spoke with Dr. Loo and she explained everything to us and eased our minds.

This last week there were huge meltdowns by Kourtney and . . .myself (go figure) and Todd, well . . . I will let him explain himself one day. All I can say things were pretty tense around house keeping in mind that it was the end of the school year, no caregiver, our wonderful friends moving to Ontario,  saying goodbye to Kourtney's Teacher's Aide, Tammy, (who is moving to Calgary) terrible rainy wet weather and no Lululemeon shopping sprees (did I just say that out loud?).

So after a beautiful prayer time with our friends and Dave and Bev last night I decided that I was going to take the pain I was feeling and SHARE IT WITH SOMEONE ELSE !!!! No, that would have been a 'lick my wounds' way out. Instead I decided to avail myself to someone in need. I prayed that I would find the right person to share some light with.

We left at 0530 and arrived at the hospital at 0645. It is always an ordeal to do the pre-op stuff for Kourtney. It is never straight forward and of course when a nurse meets nurse a power struggle ensues. Then the anesthetist peeled the OR nurse off the ceiling and assured them that "mom knows what she is doing". I helped the anesthetist with the IV, attaching probes her foot, and leads to her chest while the OR nurses stood back and got their hands slapped if they got a little too close or did something wrong. It was a little amusing to watch, but I was so thankful Dr. Lauder let me do all that stuff. It made it all flow so much easier. So after Kourtney went to Sleepy Land I headed to the van for a nap. I was awakened by a phone call from a Children's Hospital number after 2 hours, which made me panic.  It was the orthodontist wanting my permission to remove some permanent teeth of Kourtney's. I was glad she asked but was thankful I know nothing about teeth and allowed her to take charge. So after that instead of curling up into a ball and not talking to anyone I sat outside in a reception area wondering where my target was going to be. It didn't take me very long and I spotted a former patient of mine from the maternity ward, and due to confidentiality I won't go to any details, but I realized that was the "moment" that I was looking for! Done, my goal, was met. After that I went back to the waiting room and listened to the petty complaints of people while their little Johnny were getting tubes being put in their ears. At one point I wanted to scream at them until I saw one Dr. come out and heartlessly tell parents that their son has Krohn's disease. My heart ached for the mom so many times; I have been there!

So ya, this has been quite the day. My daughter is quite funny right now, she can't speak very well and says she was born on "pirate ship" she called me an old hag, and presses her fart button on her iPad when she wants something. She hasn't seen herself, but we are going to keep her away from all mirrors until the stent comes out.

Once again, we can't help but feeling blessed by all the prayers of our friends but also the support the medical community has given our family. Although we haven't had many prayers answered in our favour, we still trust God's hand and his heart. HE IS NOT TAME . . . BUT HE IS GOOD!

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!