Yesterday Kourtney started singing again. She feels a lot more freedom now that her mouth is bigger. I am once again reminded that this is why this surgery was so vital for her. We have managed to get the splint back into her mouth with some degree of success. Todd and Kourtney will go into Vancouver tomorrow to get it refitted.

Shae and I head to Calgary tomorrow after a very very exhausting week. I am looking forward to spending time alone with her. She has been a little bit stir crazy this week as witnessed by Dave and Bev last night. My mom and dad are meeting us in Calgary; I am so thankful that I will have them around to help me navigate in Calgary and look after me (my parents are so awesome at that). The next day will be busy so I am thinking I will not have much of a chance to blog.

Kourtney received an iPhone 4 this week and I have encouraged her to start VLOGGING (video blogging) I want her to start in on Monday when I leave. It would be a great way for her to express herself. So hopefully, Monday or Tuesday you will see a post from Kourtney!!

The Sun Will Come Out...tomorrow.

Last night we sat down and had a little family meeting. Todd and I were absolutely wrecked from the day's events, but Kourtney had caught her second wind. She stated that it would be a good break for all of us to go to Saskatchewan and chatted like nothing was going on. It reassured us that she wasn't traumatized by the week's events and was pretty ready to move on. However, I felt that she needed to understand that although the surgery was over there were a few things that we needed to get straight.

WE  had a heart to heart chat with her about the importance of wearing her mouth splint althoughit is so uncomfortable for her. WE had been comforted by Dr. C stating that the splint could be adjusted so it would be a bit more comfotable. But Kourtney had to understand that this was part of her healing and although it seemed unfair she had to try to comply. With crocidile tears streaming down her face we put the splint in her mouth. I adjusted it and made her clench down with her top teeth and suddenly she said, "Oh it doesn't feel that bad."

She wore the splint at night and, to our complete surprise, she had a great sleep and tolerated the splint for 10 hours! What a huge difference a great night of sleep makes for all us. We woke up to an overcast day. To tell you the truth I was so thankful for the dreary weather because I had so much to get caught up on. I paid bills, submitted receipts and rearranged furniture. (I tell you, changing furniture around is way more effective than antidepressants.) I have to say it was the first time in a long time that I wasn't paralyzed by fear. We all felt lighter today in spite of this awful July weather.

My cousin Leanne and I went to hot yoga; it felt so awesome to go back and stretch my sore muscles and sweat my sorrows out. My cousin Leanne is a nice calming influence in my life, so it was nice to go "practice with her." I felt so refreshed.

The girls went out on a field trip with our caregiver Jeff.  Take a look at the video.

WARNING DON"T LET YOUR CAREGIVER EVER TRY THIS ON YOUR CHILDREN AT HOME - FOR TRAINED PROFESSIONALS ONLY.

SERIOUSLY!!!

Tonight I am tired, dejected and plain worn out. WE were on the road at 0630 for a visit to the OT and then for an iron infusion. I was dreading the infusion as I knew there weren't very many available IV sites on Kourtney's already tender, bruised arms.
Why do we put her through the torture of an iron infusion? Iron is foundational in bringing oxygen to the tissues to bring healing her blistered skin. This is the only way we can break the cycle of infection and blistering. I believe that is why her skin has done well over the last year. So as miserable it is to poke her it is critical to her wellness.

I have to be careful here, but I sometimes feel that I have to learn to pray differently. My prayer today was that the IV would go easily and it . . . didn't. Sometimes I feel that the God above doesn't listen to my prayer for my daughter. The 3rd attempt was a crap shoot by the anesthesiologist who actually had already retracted the needle to take it out, just happened to adjust the cathlon and the blood came. I guess I have to be thankful for that third attempt but REALLY GOD??? How can you let this happen, especially to someone who hurts so much already?

I then looked in Kourtney's mouth and was frozen by what I saw. The parts of her mouth that had been operated on were starting to heal to their original position. I almost threw up when I saw it. It has been only 2 days that the "thing" has been out of her mouth and already it is closing back up. I was too numb to cry, too numb, too tired to call a doctor and too frustrated to pray. Why God does this happen to my baby?

Todd had to come out and switch places with me as I had totally mixed up the days for one of my appointments - and no chance to reschedule before I leave on Monday. So when Todd did the car swap at Safeway, I told him about her mouth and told him to page Dr C. Todd called Dr. C and fortunately due to my pack rat skills I saved the "thing" from Kourtney's mouth, and fortunately for Todd he decided to toss them this morning and knew what garbage they were in! He advised us to put that back in her mouth until he could talk to one of the doctors. Ya, once again nothing new or different is easy on Kourtney and she cried her heart out, when we put the "thing" back in. We tried to explain to her it is only temporary yet it doesn't ease her broken spirit as she begged to get it out.

At what point do you say enough is enough? All these surgeries, iron infusion are not life and death, but quality of life issues. It is the tough question to ask and really I am not looking for an answer because down deep I know that this is race I must run with Kourtney. It becomes all about perseverance and endurance, not finishing and not winning.  (I guess I just answered my own question) - yet it doesn't take the deep heart pain away that Todd and I both feel as parents.

Right now I am weak, and have this ache down to my toes. In a month this will become a distant memory and we will move on to new challenges. There is nothing more that the doctors could have done and I don't blame them. If God can move mountains, could He not just touch down and move Kourtney's mouth and teeth to place where they need to be?

DAY 5!

So Tuesday we made a trip into Children's Hospital to get the "thing" out of her mouth and then get Kourtney fitted for her braces. We decided to make a family day out of it and head to Stanley Park. My cousin Leanne and Shae joined us.

We did an early morning dressing change that didn't go so well, and was I ever in a mood. We got a late start for our 1030 appointment only to realize that Todd forgot all the dressing supplies and pain medication. We had not hit the highway yet so we turned around to get this very important stuff. 

My cousin Leanne helped keep things light on the way in and to our surprise it took only 1 hour to get in (that never ever happens that time of day). On the way Todd told me I needed to page one of the doctors from the pain team because she said she wanted to stop by and see Kourtney. I told Todd and my cousin, "I am not sure why she wants me to do this because she is going to tell me how busy she was - it happens all the time." Sure enough paged her and I got, "I am really busy." My response was, "Yep I know I am just doing what you asked." After that, holding back the tears I told Dr. Courtemanche that I don't quite "get her".  He gave me the nice pat answer that I expected and then went to the task at hand.

So the "thing" in Kourt's mouth didn't pop out like it was supposed to so after many tools and and a few screams on Kourtney's part it did pop out successfuly. Keep in mind that what looks like a success to the Doctor's doesn't look great at all to the untrained eye. Her mouth looks very sore, her face is swollen and there are scabs and the corners of the mouth. It rips my heart out when I see my child so inflicted with this disease but also helps to know that we have such an encouraging kind Doctor that always makes us feel good when we leave that place. Then, in walks Dr. Lauder (the pain doctor) I guess the guilt was enough for her to make some time for Kourtney . The long and short of the conversation was that she was going to get an iron infusion on Thursday and Dr. Lauder agreed in her non-committal way to put Kourtney's IV in. A long trip into Children's again, but I think worth it to allow her to heal.

Off to Stanley park for Fish and Chips! It was a cloudy day, which just seemed to make my mood even more gray.

Then we maneuvered through the streets of Vancouver to get to Dr. Loo's office. They were all so happy when Kourtney came because the molds for her mouth worked so well! Although she will need more molds, ( in a year or so) Dr. Loo is trying to get a machine at Children' that will take a 3-D scan of the teeth instead of the usual impressions. She will be using Kourtney as the poster child for getting a machine like this at the hospital. Once again we were thankful for these amazing doctors in Vancouver that have such a vested interest in Kourtney.

 It was a long tiring day. Kourtney has been complaining of her back hurting (blister sore). It is in really rough shape, so we have started her on another antibiotic. I honestly think that getting an iron infusion will help so much. Her tissues need the necessary oxygen and she will be able to fight infection better (we are way overdue for an iron infusion)!

I am supposed to leave with Shae on Monday for a skipping tournament in Calgary. I am a bit nervous leaving Todd and Kourtney by themselves but I also know I need some time away from Kourtney. It may be the best thing for me to do. She has been great through all of this and has taken everything in stride. I just find it overwhelming to keep it all together and keep myself together. The break for 3 days will be nice. We will all end in Saskatchewan together. I have a lot of packing to do which is overwhelming in itself!

Until next time!

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!