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.
Sunday, October 28, 2012
Wednesday, October 3, 2012
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.
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.
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