Icky times

On Tuesday Kourtney got her blood transfusion. We were hoping to report that things would be better....but they aren't! Once again we are at the drawing board, as to how to manage her care. She can not physically keep up with her school work, and has no desire to do her physio. WE are dealing with sleepless night, meltdowns, and more and more blisters. Todd and I are exhausted, and my back has taken a beating doing her care.
The only thing we are asking for is prayer,nothing more- thankfully I am off this week and hopefully can dig further to see if we can get to the bottom of this all.

What Grouse Mountain Taught Me

Kourtney celebrated her birthday almost 2 weeks ago. I have made many attempts to write something but unfortunately my attempts have been rather futile. But on Saturday it came to me.

Todd and I did the Grouse Grind Hike. The name says it all......3 km stair master. I don't think anything could of prepared this prairie girl for the gruelling nature of the hike. Todd set the pace at the beginning and barely broke a sweat, the first 1/4 km, I was huffing and puffing and had to stop to catch my breath.  The worst part was looking up and seeing what was ahead of me, I felt so overwhelmed when I saw people walking up as far as foilage would let me see. But when I just took one step at a time the hike became more manageable ( not easier-but manageable).

There were a few stops along the way, however, I plodded my way to the top, and Todd.....well he stayed with me and encouraged me along the way.

Kourtney turning 15 was a reality check for me, and made me realize that in 3 years, she could live on her own. The more I thought about it the more overwhelmed I felt, especially after the summer when Todd and I were her caregivers 24-7. I realized how little she does for herself, and started to feel a sense of panic. The mountain seemed way to big to tackle, and it was difficult for me to know where to start. ? physio ?artificial limb ? behaviour modification? I was able to process things, and made appointments at Children's with the doctors who I knew could help me the most.

However after doing the grouse grind, I found that if I focus on the future  it paralyzes what I am accomplishing today, in the moment. What I have to do is concentrate on the day to day. I have had to accept that the ebb and flow of EB may result in some wounds never healing, and although they may look really bad, they aren't causing pain-and for this I have to become thankful. Living day to day does not mean that we can not continue to plan for Kourtney's future and her independence, however by not being overwhelmed by Kourtney's future, but having a starting point. The starting part was taking her to the psychologist who will start working with Kourtney on her anticipatory pain issues. The next part will be taking her to a physio who will work with her on walking more independently.

The problem is.....Kourtney has be on board with this. But when we returned from  our gruelling mountaintop experience- the Grouse Grind, Todd and I were prepared to get Kourtney ready for her night routine, as we have not taught our new caregivers what to do. Sweaty and tired, we were greeted by Kourtney all ready for bed. She said, I knew you guys would be tired, so I got Meghan to get me ready, I talked to her through the dressing adjustments......and it was absolutely perfect and meticuoulisly done. Way to go Kourtney......and Happy 15th.

So far so good....

For those sitting on the edge of your seats for the continuing saga  (I just always wanted to say that) I thought I should update this quickly.  This week we have managed to get a temporary schedule in place, and so far it seems to be working. In many selfish ways, I miss my full days of not having my children (and husband home). I enjoyed being able to clean a closet and garage and having no one to answer to, go out for lunch and not have to worry about being home until 230. However, I have a happy Kourtney at 1130 when she comes home.

Last year, almost everyday when she came home, she was so wiped out!  The most difficult thing for me to hear was the isolation Kourtney faced when she was at school. Her lunches were spent alone. I do think there were friends with good intentions, but Kourtney did not have the energy to put into those friendships. Kourtney was so sad 90% of the time and that took a toll on me. Of course there were some friends who completely ignored her and would not give her the time of day, and that hurt beyond measure. So now Kourtney's bus schedule is set up for her to stay until after lunch, however, she still has the "control" to come home earlier if she has nothing to do. She is happy about having some say in what she will be doing.

The caregivers are working out well! Chelsea, Megan and April - we are so thankful for you guys. We are also looking forward to the return of Kelly in November - Kelly just had major surgery yesterday in Toronto. Kelly, we love you and praying for fast healing beyond human understanding!

Better Days

Well, we made it through this week!  Today has been the first day that I haven't been carrying a handful of Kleenex around! I woke up not dreading the day but embracing it!  We seemed to come up with a workable schedule for Kourtney! She will spend the morning at school, go the gym and then come home at lunch where she will work on much needed Physio as well as take a Social Studies class online!

Can you see me now?

The reason we have chosen to keep her in school is so she has a reason to get out of bed in the mornings and have a place to be! The other day when everyone else was at school and Kourtney was home, she begged to stay in bed longer . . . it was 8:40!  It would have been so easy for me to give into her because it is so much easier to give in than to fight!  So now she has to roll out of bed early and attend class knowing she can have a rest when she gets home!

We have also decided to do more frequent dressing changes. We have found that  her skin is looking a lot drier and better after doing them daily. The skin gets macerated from sitting in soggy dressings, plus she starts her day feeling clean. As well as her reduced school schedule, she is able to do more extracurricular activities. Tuesday - Wednesday she will have something going on so it is difficult to do dressings changes in the evening!

I sometimes think I should call this blog my blog because I realize it is more about what chronic illness can do to the family. Putting aside the name of the blog, my goal is to be vulnerable and allow you to see the struggle. But through the struggles I hope you see the Hope we have! I don't know if we will ever see Kourtney's disease get better or cured, however, I have a feeling that one day Kourtney will be sitting very close to the right hand of Jesus for eternity - and for that - it will be worth it all!!!

BACK TO SCHOOL!

The atmosphere, that is Kourtney up there!

Yesterday was one of those days I wanted to run through the streets screaming  really loud, and proclaim, "Its not fair; why is it my kid that has to suffer!!!" It started yesterday at the PNE.

It was the last day of the fair, we knew it would be busy so we got there early. Traffic was light, we found a parking spot close - we knew it was too perfect. For the last 5 years we have gone we have gotten an exit pass so we didn't have to bring the wheelchair through the lines and attempt to bring Kourtney and the wheelchair through the turnstiles. Over the years we have never been questioned and it has been easily attained. However, this year proved to be different. We were told that we were unable to have a exit pass because Kourtney was not mentally disabled and she could be reasoned with. They told us that one of us could wait in line and Kourtney could wait at the exit- that would be quite the family bonding experience, where we leave our disabled daughter at the the exit alone while one of us stood in the lineup. We spoke with every manager we could find, and even thanked them for not seeing what every person seems to see - Kourtney is disabled.

Kourtney's favourite ride....Pirate Ship

We came across some well meaning ride workers who went to their manager about getting us an exit pass,  meanwhile I took a walk and found somebody being interviewed by a local TV news team.  I questioned the "public relations person" about who the lady was - she was a big wig for the PNE. I shared my plight with her, she made a phone call and BAM! we got our exit pass.  After an hour and half of negotiating, making phone calls, and even seeking out the news. I got the golden ticket waving it like a flag in front of the people who told us no. Have I mentioned, I don't take no for answer???  My sweet Kourtney went riding to her little hearts' content, oh I mean until she felt nauseous.

Today as every other child in BC was going back to school (except the home schooled ones), Kourtney stayed in bed until 0830. We were not able to meet with the key people for a plan for Kourtney, so we can't throw her to the wolves without a reasonable plan in place. Hopefully tomorrow we will have a plan. Kourtney will attend one class at Yale (the real reason we are keeping her there is because of her support teacher Mr. White - he has been great to our family- - he seems to be one person who gets our family.  Rod, if you are reading this- thank-you, if you aren't reading this, we will thank you again real soon). We want her to have some kind of physical activity in the morning, be home by noon, and then have two virtual school classes.

We feel hung out to dry with the turnover of caregivers and teacher's aide this last year. It really is an awful devastating feeling to know that in order for you to exist as family we have to rely on so many people. Yesterday the training process started, we have hired wonderful girls who are eager to learn. I just pray that everything works out.

I cried most of the day yesterday, I mourn for Kourtney's loss, I cried because life is hard. But I feel so much better after a good cry and an Ativan ( which I rarely take). This morning I don't feel so inclined to run through the streets screaming I am just ready to run this morning, and go for a bike ride later this afternoon when Todd gets home.