I started writing this blog a week ago, I called it disappointment, however, after this week I wanted to change it to sadness, but this morning there seemed a bit of light at the end of the tunnel so I have taken all 3 and put them together!
The biggest disappointment and challenge our family has right now is finding new caregivers as well as planning out Kourtney's school routine. For the last two weeks, we have had no one around to help us out with Kourtney's care. Although our two weeks in Saskatchewan prepared us for this, we were expecting a reprieve when we returned, however when we returned our "help"did not come through, so it forced us to take the full weight of Kourtney's care. Todd and I have had to care for Kourtney 24-7, and although difficult there is a sense of satisfaction that the consistent care has shown remarkable improvements in the dressing changes, our relationship with Kourtney, as well as her skin. We have noticed areas heal up that have not healed up in a year. There is a sense of satisfaction as a parent that we can- look after Kourtney and do a good job with her.
We also realize this is a honeymoon phase, so we are starting the process of hiring new caregivers as well as a new teacher's aide. This is very difficult on our family as it is very difficult to welcome new people into our family we have been disappointed in people's lack of commitment . Our turnover has been 100 percent this year, and that is very very difficult for not only Kourtney but for our whole family.
If it was up to Kourtney she would not return to school at all and do viritual school.However, we feel she needs to be out of the house everyday and have a place to go. So we devised a plan where Kourtney will attend one class at school and the rest will be viritual. We are hoping for a morning class, so after she fitness centre and participate in some kind of activity. Our goal is to have her home by noon, have a rest, and then work on her virtual school for the afternoon. Of course we have not been able to present this to the school, so we are not sure what the structure of her day will look at.
The other thing we are extremely disappointed about is there is an international Debra(dystrophic epidermolysis bullosa) conference in Toronto. There would be a lot of information as well we would have an oppourtuntity to meet many families and people with EB. However the cost for Kourtney and I to attend the 4 day conference is extraordinary - as well I don't feel I could do all Kourtney's care on my own, and we don't have a caregiver to go with us. So there goes that!!!! I can't attend on my own, because there would be nobody to look after Kourtney- so its not just about the money!!I am hoping that I will be able to get as much as info as possible as they will be talking about the bone marrow transplants as well as other research they are doing for EB.
Ontop of this Kourtney has complained of painful feet all summer. It has made weightbearing unbearable, walking up the stairs and even trasferring into the van difficult. My back and shoulders have become very sore as well as my heart, because Kourtney needed a lot of help and she would cry everytime she had to move.We thought it at first her feet just had more blisters,and kept her in slippers most of the summer, however, once her feet healed it became obvious it was not the blisters making her feet sore. It scared me that her limited walking was becoming less and less. I tried my best to try to figure it out, but it took me a few weeks, as with no caregivers I felt I didn't even have the energy to figure it out. We attempted on several occasions to find new shoes for Kourtney but nothing seemed to work, and Kourtney complained of more pain when the shoes would go on. This weekend though my goal was to go to Sportchek to find a pair of Nike hightop runners for Kourtney. There was some resistance from my typical teenager, as the "look" wasn't quite what she wanted. However, when the shoes went on there was almost instant relief, leading me to believe, the no support slippers caused a case of plantar faschititis which I recognized because I have had it before- and the cure is good supportive shoes.
For the most part I find my work total and complete respite however, this month there have been heartbreaking as unusual situations that make your shake your head and ask "why do bad things happen to amazing people?"- it magnifies our situation and find it difficult to come to terms with this. "life is not fair"!!!
But then again......I get a wake up call....so many friends marriages have broken, Todd and I are stronger then we have been, physically emotionally and spirtually I am in the best shape I have been in years, I have amazing friends that are loyal, and great family!! Todd and I both have stable jobs that we both enjoy, we have a great house, and an amazing yard to entertain people. We feel God has taken care of in so many ways, that we have to look to the good not the bad.
So although we have faced disappointment again, the Kujawa family is thriving and all doing well. We are so thankful for Kourtney's emotional and physical health, and the fact her feet are finally feeling better- makes us greatful that she will be able to keep walking.
We also realize this is a honeymoon phase, so we are starting the process of hiring new caregivers as well as a new teacher's aide. This is very difficult on our family as it is very difficult to welcome new people into our family we have been disappointed in people's lack of commitment . Our turnover has been 100 percent this year, and that is very very difficult for not only Kourtney but for our whole family.
If it was up to Kourtney she would not return to school at all and do viritual school.However, we feel she needs to be out of the house everyday and have a place to go. So we devised a plan where Kourtney will attend one class at school and the rest will be viritual. We are hoping for a morning class, so after she fitness centre and participate in some kind of activity. Our goal is to have her home by noon, have a rest, and then work on her virtual school for the afternoon. Of course we have not been able to present this to the school, so we are not sure what the structure of her day will look at.
The other thing we are extremely disappointed about is there is an international Debra(dystrophic epidermolysis bullosa) conference in Toronto. There would be a lot of information as well we would have an oppourtuntity to meet many families and people with EB. However the cost for Kourtney and I to attend the 4 day conference is extraordinary - as well I don't feel I could do all Kourtney's care on my own, and we don't have a caregiver to go with us. So there goes that!!!! I can't attend on my own, because there would be nobody to look after Kourtney- so its not just about the money!!I am hoping that I will be able to get as much as info as possible as they will be talking about the bone marrow transplants as well as other research they are doing for EB.
Ontop of this Kourtney has complained of painful feet all summer. It has made weightbearing unbearable, walking up the stairs and even trasferring into the van difficult. My back and shoulders have become very sore as well as my heart, because Kourtney needed a lot of help and she would cry everytime she had to move.We thought it at first her feet just had more blisters,and kept her in slippers most of the summer, however, once her feet healed it became obvious it was not the blisters making her feet sore. It scared me that her limited walking was becoming less and less. I tried my best to try to figure it out, but it took me a few weeks, as with no caregivers I felt I didn't even have the energy to figure it out. We attempted on several occasions to find new shoes for Kourtney but nothing seemed to work, and Kourtney complained of more pain when the shoes would go on. This weekend though my goal was to go to Sportchek to find a pair of Nike hightop runners for Kourtney. There was some resistance from my typical teenager, as the "look" wasn't quite what she wanted. However, when the shoes went on there was almost instant relief, leading me to believe, the no support slippers caused a case of plantar faschititis which I recognized because I have had it before- and the cure is good supportive shoes.
For the most part I find my work total and complete respite however, this month there have been heartbreaking as unusual situations that make your shake your head and ask "why do bad things happen to amazing people?"- it magnifies our situation and find it difficult to come to terms with this. "life is not fair"!!!
But then again......I get a wake up call....so many friends marriages have broken, Todd and I are stronger then we have been, physically emotionally and spirtually I am in the best shape I have been in years, I have amazing friends that are loyal, and great family!! Todd and I both have stable jobs that we both enjoy, we have a great house, and an amazing yard to entertain people. We feel God has taken care of in so many ways, that we have to look to the good not the bad.
So although we have faced disappointment again, the Kujawa family is thriving and all doing well. We are so thankful for Kourtney's emotional and physical health, and the fact her feet are finally feeling better- makes us greatful that she will be able to keep walking.
