So it has been over a month since I have blogged. During the reno process my ancient computer got unhooked so I was unable to get my thoughts onto the blog.I got up first this morning so the laptop is all mine to share with you my Christmas this year!
This month we have been enjoying the new and improved Kourtney. Kourtney's hemoglobin continues to rise with the assistance of the EPO. The last set of blood work along with a iron infusion took 4 iv pokes. Kourtney was done and took the vow that she wasn't coming in anymore for iron until the results of her blood work came back. As much as I tried to encourage her that she was feeling better and this was helping her, she wasn't so convinced. It was not until the jubilant nurse walked into our room and announced that her hemoglobin was 112 - Kourtney was convinced. It made the 4 IV attempts worth it!! - well sort of.
In October, during our weekly trip to Costco, Kourtney and I saw Christmas lights. The anxiety in me grew as I knew I had to "face" another Christmas season. Kourtney knew what I was thinking and said, "We have to make this Christmas the best one yet mom. " After these words of wisdom from my 12 year old I decided that my approach to Christmas was going to be similar to the way Kourtney felt about her hemoglobin. I did not want just to feel Christmas; I wanted to know Christmas this year. I have heard so often from my own mouth, " It doesn't feel like Christmas," although the house is decorated, gifts are wrapped, and the 10 pounds are gained.
I started by keeping the Christmas decorations to a minimum, basically our Christmas tree and a nativity set. I was probably the last person in the lower mainland to have my tree up, except for Mona - I think she was waiting for me to cave first. This was by no means part of my intention. We were still renovating our house and there was no place to put the tree until the carpet was laid. Otherwise I would have put it up sooner as I do love having a tree in my house. As much as I would love to try a No Christmas present year- the gifts we bought for the girls were practical, wrapped with recycled paper and held together with duct tape.
Knowing Christmas also involved helping a friend through a crisis and being there every step of the way for her. Knowing Christmas also involved really understanding the first Christmas and the lowly circumstances that were involved, with the birth of Jesus - God sending his only son. The Gospel was clearly outlined at church - Thank you Pastor Jeff. Knowing Christmas helped me forgive the wrongs and helped me move on through my circumstances. Knowing Christmas encouraged my colleague struggling with confidence in her career. Knowing Christmas allowed me to be a better mom, wife and friend. Knowing Christmas allowed me not to apologize for my "unfinished home" but made me proud of my husband for the work he has done and all the work he still has to do.
3 days after Christmas . . . I feel I just celebrated the best Christmas ever. To all of our readers and supporters thank-you for your valuable contribution to helping us celebrate the best Kujawa Christmas ever.If the Christmas feeling bogs you down every year, get to know "Christmas" and when you do you will know the Christmas I finally got to know.
Monday, December 28, 2009
Thursday, November 26, 2009
Cartwheels - today!!
I feel like dancing today. If I could I would do cartwheels instead of walking; would that not be a sight? My heart is leaping with joy, I can't sit still. Today we have gotten a break from the BC rain and have been blessed with a mild, clear, and dry day. The day started at 6 AM, and amazing things began to happen.
Kourtney had a dressing change in the morning instead of last evening at her request. She promised me there would be no morning grumpiness, or tears. True to her word it was the best dressing change ever. Not even a whimper out of her. Mona and I were almost in shock when she went in to the tub and there wasn't a sound out of her. Wow!! How amazingly refreshing to start the day out like that then with the usual dread.
As we were wrapping Kourtney, Lexi began whining. I realized that she was asking to go outside. Although she has done this before, she hasn't done it in a while. She did her business and then sat patiently by the door waiting for us to let her in. I felt satisfaction in our dog training skills. We have also learned that "leash" is a word we don't say around our house unless you are willing to take the dog for a walk. She still rings the bell or "Easy Button" when she wants something.
After that we got the confirmation that our cabinets will go in tomorrow. It just seemed too smooth. They will be here at 0730 tomorrow morning. The floor looks great and appliances are here just waiting to be used!!
The day just got better when we found out that Shaelyn will be joining the Skipping Sensations team in January. She has been skipping once a week for a 1 1/2 years and feels that she wants to be part of the team. It is an amazing program and it is so amazing what these girls can do with a skipping rope. Way to go Shae!! So exciting.
I am even excited about the supper we are having tonight - stuffed chicken breasts. Can life get any better? I don't think so. I realize I keep comparing life to last year, but that is because our minds remember anniversaries. The comparison between last year and today, well there is no comparison.
On a side note: Kourtney is doing her exercises and has been challenged to take charge of her body. She is going on the treadmill and staying positive.
*** Our day ended with a parent teacher interview for Shae - raving reviews. I am so proud of her!! ***
Kourtney had a dressing change in the morning instead of last evening at her request. She promised me there would be no morning grumpiness, or tears. True to her word it was the best dressing change ever. Not even a whimper out of her. Mona and I were almost in shock when she went in to the tub and there wasn't a sound out of her. Wow!! How amazingly refreshing to start the day out like that then with the usual dread.
As we were wrapping Kourtney, Lexi began whining. I realized that she was asking to go outside. Although she has done this before, she hasn't done it in a while. She did her business and then sat patiently by the door waiting for us to let her in. I felt satisfaction in our dog training skills. We have also learned that "leash" is a word we don't say around our house unless you are willing to take the dog for a walk. She still rings the bell or "Easy Button" when she wants something.
After that we got the confirmation that our cabinets will go in tomorrow. It just seemed too smooth. They will be here at 0730 tomorrow morning. The floor looks great and appliances are here just waiting to be used!!
The day just got better when we found out that Shaelyn will be joining the Skipping Sensations team in January. She has been skipping once a week for a 1 1/2 years and feels that she wants to be part of the team. It is an amazing program and it is so amazing what these girls can do with a skipping rope. Way to go Shae!! So exciting.
I am even excited about the supper we are having tonight - stuffed chicken breasts. Can life get any better? I don't think so. I realize I keep comparing life to last year, but that is because our minds remember anniversaries. The comparison between last year and today, well there is no comparison.
On a side note: Kourtney is doing her exercises and has been challenged to take charge of her body. She is going on the treadmill and staying positive.
*** Our day ended with a parent teacher interview for Shae - raving reviews. I am so proud of her!! ***
Saturday, November 21, 2009
Tough News, and Tough Love
Yesterday we had a meeting with the Chronic Pain Team at BCCH. I really felt we needed to stay in touch with this team of doctors, nurses, psychologists, and physios that manage Kourtney's pain. We have managed to conquer many issues this year but for those who have seen Kourtney walk it is evident there have been lingering problems from such a traumatic year.
Kourtney is not using her wheel chair at school which has been a huge milestone, but over the last year we have taken Kourtney to physio many times and she has been given exercises to do. Kourtney will find every excuse not to do them and when she does do her exercises she usually is so worked up her body won't relax. It has been a frustrating endeavour and once again another concern I have had to take a step back on.
Kourtney walked into the meeting with the team and I knew that they were assessing her as she walked in. First of all I think Kourtney should have been celebrated that she was walking because last year all of our meetings Kourtney was in wheelchair. The first thing out of the Dr's mouth was, "I am not happy with her posture." Neither am I, but I want to tell you about the success we have had with her. For those who work Maternity with me, you can appreciate that this Dr. is an anaesthetist - they seem to be a very peculiar breed of doctors. They went on to tell us that they want Kourtney to do intense physio until March and after that if there are not better results, surgery should be considered. That isn't what we both wanted to hear and it came as a shocker for the two of us.
Kourtney held her composure through the very painful meeting, but as soon she got off the elevator she started crying. We had another appointment booked with Dr. Prendiville (dermatologist) but she ran past the office and went outside. We sat in the fresh air and talked about the meeting - there were a few choice words for the doctor and I didn't reprimand her because I had the same words in my head. I went and chatted with our wonderful dermatology nurse and the two of us decided we should cancel the appointment (6 people ahead of us and no pressing issues meant we weren't staying).
Kourtney and I did shopping therapy at IKEA, and we talked over a cinnamon bun. She perked up after that and the sparkle continued to be there. Although the "delivery" of the news was harsh I believe that it will make Kourtney more determined to keep exercising. If we can avoid surgery . . . that would be so wonderful. We have come sooooo far, yet it seems like we are at the bottom of the mountain again and gearing up for the big climb . . . the plan is for weekly trips into BCCH for intense physio.
Kourtney is not using her wheel chair at school which has been a huge milestone, but over the last year we have taken Kourtney to physio many times and she has been given exercises to do. Kourtney will find every excuse not to do them and when she does do her exercises she usually is so worked up her body won't relax. It has been a frustrating endeavour and once again another concern I have had to take a step back on.
Kourtney walked into the meeting with the team and I knew that they were assessing her as she walked in. First of all I think Kourtney should have been celebrated that she was walking because last year all of our meetings Kourtney was in wheelchair. The first thing out of the Dr's mouth was, "I am not happy with her posture." Neither am I, but I want to tell you about the success we have had with her. For those who work Maternity with me, you can appreciate that this Dr. is an anaesthetist - they seem to be a very peculiar breed of doctors. They went on to tell us that they want Kourtney to do intense physio until March and after that if there are not better results, surgery should be considered. That isn't what we both wanted to hear and it came as a shocker for the two of us.
Kourtney held her composure through the very painful meeting, but as soon she got off the elevator she started crying. We had another appointment booked with Dr. Prendiville (dermatologist) but she ran past the office and went outside. We sat in the fresh air and talked about the meeting - there were a few choice words for the doctor and I didn't reprimand her because I had the same words in my head. I went and chatted with our wonderful dermatology nurse and the two of us decided we should cancel the appointment (6 people ahead of us and no pressing issues meant we weren't staying).
Kourtney and I did shopping therapy at IKEA, and we talked over a cinnamon bun. She perked up after that and the sparkle continued to be there. Although the "delivery" of the news was harsh I believe that it will make Kourtney more determined to keep exercising. If we can avoid surgery . . . that would be so wonderful. We have come sooooo far, yet it seems like we are at the bottom of the mountain again and gearing up for the big climb . . . the plan is for weekly trips into BCCH for intense physio.
Friday, November 6, 2009
NO WAY! WAY! YAY!!
NO WAY
For the month of October our family seemed to dodge the swine flu. Shaelyn had symptoms but she got over it rather quickly. In my own little "righteous indignation" I was hoping our family wasn't going to be hit with this unpredictable virus. We seemed to have our share last year . . . really there was "no way" that we should have this affliction upon on us. I felt that it would be best if everyone else could suffer from it this year . . . not the Kujawa's. But as everyone knows . . . (I am such a slow learner). Virusses are virusses and they generally don't chose who they will host upon.
WAY
But then on November 2st, Shaelyn had a headache. I thought there is no way she could be sick again so I sent her to school. I also had a massage booked and really wanted to go. By noon my cell phone and home phone were full of messages from the school informing me that my child needed to be picked up from school (I turned off my cell phone when I was getting the massage - how selfish). High fevers, headache, cough, sleepless night . . . here we go again. Sure glad I got that massage though.
The same day I took one look at Kourtney when she got home from school andI knew the affliction was upon her. Her classmates had been hit hard by it, so I knew she would be home for the rest of the week. Todd came home that day with a cough . . . number 3 hit. I have 3 patients now at home with me. Todd has been hit the worse but yet he keeps plunking away at kitchen stuff. Shaelyn had 4 days at home but has kicked the virus. Kourtney has been the best patient in the whole world - she does sick well - because she knows how, and despite feeling so awful has not complained at all. The other two are a bit more whiny and can't sit still. I remain healthy and strong, despite being coughed on and puked on . . . yuck.
YAY
On Friday, Kourtney and I left the house at 0630 for an iron infusion at Children's. It took 2 hours to get in. Kourtney was vile on the way in because she didn't want to be poked again and besides "it wasn't helping anyways" (last time her hemoglobin was 79). I was also beginning to wonder if this was worthwhile, especially if there was no change in her hemoglobin. But I also knew that although there was not encouraging results on "paper" the clinical picture was encouraging as far as her skin, and overall health goes. I had no preconceived notions this time about her hemoglobin as last time it was a huge disappointment that it was not higher. As it turned out though, Kourtney's IV went very smoothly, the iron infusion only took two hours and her hemoglobin is now at the highest it has been in years . . . 92. The goal is to be over 100. So I haven't been imagining things. There is now clinical evidence that Kourtney has recovered. So the monthly trips in, the IV pokes and the once a week pokes for the EPO shots are paying off. Kourtney really doesn't think so, but it is difficult for her to get past the "pokes". I don't blame her but she also doesn't realize what a blessing it is that her IV's go so smoothly and I know how I can give the EPO shots with the least amount of pain.
Last night (Friday) was a good night. Kourtney slept well and her cough seems to be looser and drier. Todd slept downstairs and feels somewhat better, and Shae is Shae ( for those who know this happy inquisitive little child) on this dreary Saturday morning. I am going to go exercise and leave my family to ward off this virus.
For the month of October our family seemed to dodge the swine flu. Shaelyn had symptoms but she got over it rather quickly. In my own little "righteous indignation" I was hoping our family wasn't going to be hit with this unpredictable virus. We seemed to have our share last year . . . really there was "no way" that we should have this affliction upon on us. I felt that it would be best if everyone else could suffer from it this year . . . not the Kujawa's. But as everyone knows . . . (I am such a slow learner). Virusses are virusses and they generally don't chose who they will host upon.
WAY
But then on November 2st, Shaelyn had a headache. I thought there is no way she could be sick again so I sent her to school. I also had a massage booked and really wanted to go. By noon my cell phone and home phone were full of messages from the school informing me that my child needed to be picked up from school (I turned off my cell phone when I was getting the massage - how selfish). High fevers, headache, cough, sleepless night . . . here we go again. Sure glad I got that massage though.
The same day I took one look at Kourtney when she got home from school andI knew the affliction was upon her. Her classmates had been hit hard by it, so I knew she would be home for the rest of the week. Todd came home that day with a cough . . . number 3 hit. I have 3 patients now at home with me. Todd has been hit the worse but yet he keeps plunking away at kitchen stuff. Shaelyn had 4 days at home but has kicked the virus. Kourtney has been the best patient in the whole world - she does sick well - because she knows how, and despite feeling so awful has not complained at all. The other two are a bit more whiny and can't sit still. I remain healthy and strong, despite being coughed on and puked on . . . yuck.
YAY
On Friday, Kourtney and I left the house at 0630 for an iron infusion at Children's. It took 2 hours to get in. Kourtney was vile on the way in because she didn't want to be poked again and besides "it wasn't helping anyways" (last time her hemoglobin was 79). I was also beginning to wonder if this was worthwhile, especially if there was no change in her hemoglobin. But I also knew that although there was not encouraging results on "paper" the clinical picture was encouraging as far as her skin, and overall health goes. I had no preconceived notions this time about her hemoglobin as last time it was a huge disappointment that it was not higher. As it turned out though, Kourtney's IV went very smoothly, the iron infusion only took two hours and her hemoglobin is now at the highest it has been in years . . . 92. The goal is to be over 100. So I haven't been imagining things. There is now clinical evidence that Kourtney has recovered. So the monthly trips in, the IV pokes and the once a week pokes for the EPO shots are paying off. Kourtney really doesn't think so, but it is difficult for her to get past the "pokes". I don't blame her but she also doesn't realize what a blessing it is that her IV's go so smoothly and I know how I can give the EPO shots with the least amount of pain.
Last night (Friday) was a good night. Kourtney slept well and her cough seems to be looser and drier. Todd slept downstairs and feels somewhat better, and Shae is Shae ( for those who know this happy inquisitive little child) on this dreary Saturday morning. I am going to go exercise and leave my family to ward off this virus.
Tuesday, November 3, 2009
Photos of the Kitchen Reno
Click on the link below to see the pictures. You can also view our other albums by clicking on the Photo Album on the right side bar.
Monday, November 2, 2009
The irony of it all . . .
Since Kourtney was born, one of my objectives of raising a special needs child was, #1 not treating her like a special needs child and #2 not letting her act like a special needs child.
I think one of my worst fears centered around Kourtney developing friendships with other children. It has been difficult for Kourtney to "do stuff" for example birthday parties were difficult as she was usually accompanied by a caregiver, myself or Todd. I worried about her social isolation and spent many sleepless nights wondering how she could make friends. I didn't want children to feel they needed to be friends with Kourtney but I hoped they would want to be friends with her. When Kourtney was in a new environment with children her own age it was difficult to get past the stares, the questions and the horror in people's eyes when the disease was explained to them. The comments that I generally received, were "does she have friends" and "just wait till she gets to high school it will be worse there". Yep thanks . . . just for that comment I will pop another sleeping pill.
Over the years though, Kourtney's bubbly personality has proved itself over and over again and she has developed some amazing friendships at school. That is why last year we "jumped through many hoops" to get Kourtney back to school with her friends at Fraser Middle School.
When Kourtney was in grade 5 she would spend lunch in the library in a recliner chair. She would get her g-tube feed during that hour and was encouraged to rest. In the beginning she could take a friend with her and they would "quietly" read or play on Kourtney's laptop. Over time one friend turned into 3-10, and the quiet time turned into skits, choreographing songs and planning pool parties at lunch. Eating lunch with Kourtney was as popular as eating lunch with a rock star. I remember once being there with the library packed full of a crowd of girls and they were getting loud. One teacher came along and didn't tell them to be quiet but just shut the door quietly. Kourtney always just sat in her recliner chair and was always directing the entertainment scene. I observed this to be therapy for Kourtney as she looked forward to her lunchtime hour at school.
Once she got to middle school, I was a little unsure how popular this daily lunch time event would be. Middle school kids are a different breed of human beings with the hormone switch from nice little girls to moody preteens. I wasn't sure if it would still be the "cool" thing to do at lunch hour. I still encouraged the quiet room instead of Kourtney being integrated with the "general population" of budding middle schoolers.
In grade 6, Tammy (Kourtney's teacher aide), said that around lunch time Kourtney started to have anxiety because she was worried that nobody would stay with her at lunch. That was remedied by a sign up list being made so the girls would commit to be with her at lunch. Last year there was one girl who became quite upset and accused Kourtney of taking her friends away at lunch time. I could not believe my ears when I realized that the lunch time ritual was a very popular event with the girls. Along with the accusation came bullying and when the teacher got to the heart of the matter it had been revealed that she had been jealous of Kourtney since grade 2 because she felt she got extra attention from the kids at school.
This year Kourtney's lunch time routine remains strong. But now during lunchtime, they are starting to plan Friday night parties at our house. Kourtney planned a Halloween party at our house. She organized for everyone to bring something (from movies to drinks). I kept thinking I had to get something, but each time she would say, "Mom I got that covered."
Once again we find ourselves in an ironic situation . . . there are more kids who are wanting to be part of this popular lunch time event. Kourtney has been receiving notes from one girl desperately wanting to be part of this. She even told Kourtney that the world doesn't revolve around her (I told Kourtney that I am the only one that can say that to her.). She was even intimidated on Facebook by one of the girls. Unfortunately these children are afflicted with huge social and behavioural issues and Kourtney would not feel comfortable having them around. Fortunately the teacher has stepped in once again and is helping the girls work through this. I am confident he will bring the right resolution to this situation.
To think last year Kourtney was catatonic and in so much pain . . . she didn't want anyone around, and she barely spoke 2 sentences all day. Now she is planning parties at our house which average 6-7 girls on a Friday night. I did not ever think I would find myself in this situation, ever. I always thought Kourtney would have a "few good friends" but she has so many . . . and may I add they are absolutely lovely girls. Many people may think Todd and I are a bit nuts for opening up our home every Friday night, to a bunch of grade 7 girls but we love to see them and love to see Kourtney interacting and wanting to be a part of life again. YAY
We also know that this sets the standard for Shaelyn to have parties here also. We have the right house for entertaining and are so thankful that it is being used for that. Speaking of our house....
Our kitchen is making great progress . . . drywall, plumbing, floors, counter tops, appliances, and cabinets seem to be making the deadline for November 21st . . . how exciting.
I think one of my worst fears centered around Kourtney developing friendships with other children. It has been difficult for Kourtney to "do stuff" for example birthday parties were difficult as she was usually accompanied by a caregiver, myself or Todd. I worried about her social isolation and spent many sleepless nights wondering how she could make friends. I didn't want children to feel they needed to be friends with Kourtney but I hoped they would want to be friends with her. When Kourtney was in a new environment with children her own age it was difficult to get past the stares, the questions and the horror in people's eyes when the disease was explained to them. The comments that I generally received, were "does she have friends" and "just wait till she gets to high school it will be worse there". Yep thanks . . . just for that comment I will pop another sleeping pill.
Over the years though, Kourtney's bubbly personality has proved itself over and over again and she has developed some amazing friendships at school. That is why last year we "jumped through many hoops" to get Kourtney back to school with her friends at Fraser Middle School.
When Kourtney was in grade 5 she would spend lunch in the library in a recliner chair. She would get her g-tube feed during that hour and was encouraged to rest. In the beginning she could take a friend with her and they would "quietly" read or play on Kourtney's laptop. Over time one friend turned into 3-10, and the quiet time turned into skits, choreographing songs and planning pool parties at lunch. Eating lunch with Kourtney was as popular as eating lunch with a rock star. I remember once being there with the library packed full of a crowd of girls and they were getting loud. One teacher came along and didn't tell them to be quiet but just shut the door quietly. Kourtney always just sat in her recliner chair and was always directing the entertainment scene. I observed this to be therapy for Kourtney as she looked forward to her lunchtime hour at school.
Once she got to middle school, I was a little unsure how popular this daily lunch time event would be. Middle school kids are a different breed of human beings with the hormone switch from nice little girls to moody preteens. I wasn't sure if it would still be the "cool" thing to do at lunch hour. I still encouraged the quiet room instead of Kourtney being integrated with the "general population" of budding middle schoolers.
In grade 6, Tammy (Kourtney's teacher aide), said that around lunch time Kourtney started to have anxiety because she was worried that nobody would stay with her at lunch. That was remedied by a sign up list being made so the girls would commit to be with her at lunch. Last year there was one girl who became quite upset and accused Kourtney of taking her friends away at lunch time. I could not believe my ears when I realized that the lunch time ritual was a very popular event with the girls. Along with the accusation came bullying and when the teacher got to the heart of the matter it had been revealed that she had been jealous of Kourtney since grade 2 because she felt she got extra attention from the kids at school.
This year Kourtney's lunch time routine remains strong. But now during lunchtime, they are starting to plan Friday night parties at our house. Kourtney planned a Halloween party at our house. She organized for everyone to bring something (from movies to drinks). I kept thinking I had to get something, but each time she would say, "Mom I got that covered."
Once again we find ourselves in an ironic situation . . . there are more kids who are wanting to be part of this popular lunch time event. Kourtney has been receiving notes from one girl desperately wanting to be part of this. She even told Kourtney that the world doesn't revolve around her (I told Kourtney that I am the only one that can say that to her.). She was even intimidated on Facebook by one of the girls. Unfortunately these children are afflicted with huge social and behavioural issues and Kourtney would not feel comfortable having them around. Fortunately the teacher has stepped in once again and is helping the girls work through this. I am confident he will bring the right resolution to this situation.
To think last year Kourtney was catatonic and in so much pain . . . she didn't want anyone around, and she barely spoke 2 sentences all day. Now she is planning parties at our house which average 6-7 girls on a Friday night. I did not ever think I would find myself in this situation, ever. I always thought Kourtney would have a "few good friends" but she has so many . . . and may I add they are absolutely lovely girls. Many people may think Todd and I are a bit nuts for opening up our home every Friday night, to a bunch of grade 7 girls but we love to see them and love to see Kourtney interacting and wanting to be a part of life again. YAY
We also know that this sets the standard for Shaelyn to have parties here also. We have the right house for entertaining and are so thankful that it is being used for that. Speaking of our house....
Our kitchen is making great progress . . . drywall, plumbing, floors, counter tops, appliances, and cabinets seem to be making the deadline for November 21st . . . how exciting.
Thursday, October 29, 2009
THIS IS WHAT WE CALL NORMAL????....you bet!!!
One look at our blog and you know we are in the thick of a major reno. The electrical is done and drywall boards are in place. We are managing quite well in our small kitchen downstairs and are enjoying cooking with a frying pan and hotplate. We also have discovered Donairos, a very delicious restaurant that makes donairs (yummy). Although life is chaotic we consider this a normal chaos. We even had a leaky water tank and a leaky roof but we still don't feel we are buckling under the pressure. I think we built a lot of resiliant muscle last year and we continue to stay strong despite these minor inconveniences.
Last week I was able to help out two very dear people with the deliveries of their babies. For the first one, I got to be right there when the baby arrived and the second one, I was able to help them in the beginning of the labour. What an awesome job I have!! I feel honoured that those special moments were shared with me and I could work along side them.
The swine flu hit Shaelyn last week. It was confirmed that her classmates had it. Shae had an unbreakable fever for 3 days and a very sore throat and dry cough. She bounced back rather quickly. Kourtney's school had been hit hard also by the virus. Thanks to parents obeying precautions and keeping their kids home, Kourtney has not been hit yet. (I was thinking the drywall dust must be protecting her nares) - just a side note . . . there are some doctors that are suggesting nasal pharyngeal washings. Just the though brings tears to my eyes. Of course having just said that she just came home from school with a stuffy nose. Todd and I both remain as healthy as can be and are hoping it stays that way.
Kourtney is still doing quite well. Over the last year there was a peculiar odor that was dominating her. It was sometimes so bad that we could smell it as soon as we walked in the house. I phoned Dr. Courtemanche, he suggested trying antibiotics to clear it up. We had tried that many times before and the smell dissapated but never completely went away. So we tried again and to our complete joy the smell is now gone. We can now leave the dressings for up to 48 hours and the smell is minimal. I know it may seem petty but to a 12 year old girl, it is very important,
Typicaly November to about February can be the worst months for Kourtney and the rest of our family. We are savouring the good times and continue to feel blessed that we weathered the storm and continue to stay strong. We are planning a trip at spring break and a Harrison get away over the holidays. We are looking forward to the completion of our kitchen and feel overwhelmed by the generousity of the trades people in getting the job done with expediancy.
This is the one year anniversary of our blog!! Thanks for reading and supporting us with your prayers, concerns and interest.
Last week I was able to help out two very dear people with the deliveries of their babies. For the first one, I got to be right there when the baby arrived and the second one, I was able to help them in the beginning of the labour. What an awesome job I have!! I feel honoured that those special moments were shared with me and I could work along side them.
The swine flu hit Shaelyn last week. It was confirmed that her classmates had it. Shae had an unbreakable fever for 3 days and a very sore throat and dry cough. She bounced back rather quickly. Kourtney's school had been hit hard also by the virus. Thanks to parents obeying precautions and keeping their kids home, Kourtney has not been hit yet. (I was thinking the drywall dust must be protecting her nares) - just a side note . . . there are some doctors that are suggesting nasal pharyngeal washings. Just the though brings tears to my eyes. Of course having just said that she just came home from school with a stuffy nose. Todd and I both remain as healthy as can be and are hoping it stays that way.
Kourtney is still doing quite well. Over the last year there was a peculiar odor that was dominating her. It was sometimes so bad that we could smell it as soon as we walked in the house. I phoned Dr. Courtemanche, he suggested trying antibiotics to clear it up. We had tried that many times before and the smell dissapated but never completely went away. So we tried again and to our complete joy the smell is now gone. We can now leave the dressings for up to 48 hours and the smell is minimal. I know it may seem petty but to a 12 year old girl, it is very important,
Typicaly November to about February can be the worst months for Kourtney and the rest of our family. We are savouring the good times and continue to feel blessed that we weathered the storm and continue to stay strong. We are planning a trip at spring break and a Harrison get away over the holidays. We are looking forward to the completion of our kitchen and feel overwhelmed by the generousity of the trades people in getting the job done with expediancy.
This is the one year anniversary of our blog!! Thanks for reading and supporting us with your prayers, concerns and interest.
Sunday, October 18, 2009
Continuing to Smile
It is Sunday morning 0900 am and I am still laying in bed, dog at my side, cup of coffee and my laptop!! Shae and Kourtney continue to snooze and Todd is at church. The quietness of the morning has given me some time to reflect on this week. All I can say is that life has a interesting way of working itself out that just makes me grin. There is a certain beauty to life when you "lose the control" (not lose control) and allow God to work things out in His time. It is a practice that has not been perfected by any means in my life . . . but this week I felt as though I have come a long way.
If I were to step out of the room this morning I would be hit by the fact that there is a huge kitchen reno going on. The kitchen has been taken right down to the studs. I feel the drywall dust in my teeth it is so thick in here, but somehow it doesn't seem to matter to me. Of course I know that the end result will be a spectacular kitchen. But I am thankful I can see the forest through the trees. Todd has worked very dilegently in getting the kitchen ready for the different trades people. At the beginning of this week we weren't sure how long this reno would take but we have all our trades people lined up ready to start work. How awesome is that!! If everything goes according plan we should have our new kitchen by the middle of November.
We went through a difficult thing with Shaelyn this last few weeks with some friends. I won't go into detail. The old mama bear in me wanted to intervene and micromangage the situation, but, Todd and I both decided to let things play out they way they needed to. I just could not understand why, for once in our lives, things couldn't just fall into place. In the end Shaelyn proved herself strong, confident and capable to have many people take notice and comment on her skills. Things fell into place . . . just not in the time frame that I wanted it in and without me trying to stick my nose into it.
This semester at school Kourtney has done very well in math. She has always struggled with the facts, not the problem solving. Most summers I have great intentions for her memorizing her math facts, usually with hindering results, (reason right there why I chose nursing over teaching) but this summer I didn't push anything on her. I released the control and in the end Kourtney found her own way of excelling in math. I feel this ways with her anemia issues, her walking, and her skin. I have to let and allow life to work itself out the way it needs too.
This week I found myself in a very sticky situation, but was able to get through the crisis and see amazing results out of it all. I stayed calm and was able to say the right things. Years ago I wouldn't have known how to handle this but over the years I have learned just to "wait".
I have come to the conclusion that this is a very difficult balance being a mom, wife and all. But there is a certain beauty in not staying awake at night trying to work things out in my head. I almost feel spoiled in this role of motherhood that I can enjoy my life and not have to worry about trying to make life happen. I am looking after my self spirtualy by throughly enjoying a Beth Moore bible study, mentally by breaking up the daily grind by going to work and physically by doing Yoga. It is a very freeing area of life to be in and I take comfort in it (even right now Shaelyn wants the laptop but I am holding her off).
This morning I woke up with a grin on my face. . . . now have to take this grin out of bed and start some much needed housework.
If I were to step out of the room this morning I would be hit by the fact that there is a huge kitchen reno going on. The kitchen has been taken right down to the studs. I feel the drywall dust in my teeth it is so thick in here, but somehow it doesn't seem to matter to me. Of course I know that the end result will be a spectacular kitchen. But I am thankful I can see the forest through the trees. Todd has worked very dilegently in getting the kitchen ready for the different trades people. At the beginning of this week we weren't sure how long this reno would take but we have all our trades people lined up ready to start work. How awesome is that!! If everything goes according plan we should have our new kitchen by the middle of November.
We went through a difficult thing with Shaelyn this last few weeks with some friends. I won't go into detail. The old mama bear in me wanted to intervene and micromangage the situation, but, Todd and I both decided to let things play out they way they needed to. I just could not understand why, for once in our lives, things couldn't just fall into place. In the end Shaelyn proved herself strong, confident and capable to have many people take notice and comment on her skills. Things fell into place . . . just not in the time frame that I wanted it in and without me trying to stick my nose into it.
This semester at school Kourtney has done very well in math. She has always struggled with the facts, not the problem solving. Most summers I have great intentions for her memorizing her math facts, usually with hindering results, (reason right there why I chose nursing over teaching) but this summer I didn't push anything on her. I released the control and in the end Kourtney found her own way of excelling in math. I feel this ways with her anemia issues, her walking, and her skin. I have to let and allow life to work itself out the way it needs too.
This week I found myself in a very sticky situation, but was able to get through the crisis and see amazing results out of it all. I stayed calm and was able to say the right things. Years ago I wouldn't have known how to handle this but over the years I have learned just to "wait".
I have come to the conclusion that this is a very difficult balance being a mom, wife and all. But there is a certain beauty in not staying awake at night trying to work things out in my head. I almost feel spoiled in this role of motherhood that I can enjoy my life and not have to worry about trying to make life happen. I am looking after my self spirtualy by throughly enjoying a Beth Moore bible study, mentally by breaking up the daily grind by going to work and physically by doing Yoga. It is a very freeing area of life to be in and I take comfort in it (even right now Shaelyn wants the laptop but I am holding her off).
This morning I woke up with a grin on my face. . . . now have to take this grin out of bed and start some much needed housework.
Saturday, October 10, 2009
We will take what we have....
Yesterday Kourtney and I went to Children's hospital for a few appointments. We have now been discharged from seeing the pshychologist since we have now "slayed the bath dragon" and the post traumatic stress disorder is now been worked through and processed.
Kourtney received another iron infusion yesterday. We were somewhat in shock when we found out that her hemoglobin still remains low. Unfortunately the iron still has not been mobilized from the bone marrow to create stores of iron which are needed for red cell production. The hematologist is now going to talk to the big guys down in the USA about possible treatments for her anemia. He doesn't know if Kourtney needs more iron or more EPO . . . anyways, I still feel my daughter is back, happier, healthier, and full of life. She is loving voice lessons, using her wheelchair less at school, doing well in all subjects at school and is crying less during her bath. I am so glad that I don't have to worry about desperately trying to find possible solutions to her anemia issues. Is it not a little strange that these "bone marrow" issues keep popping up? I still have a feeling that a bone marrow transplant will be in the works in the years to come.
We have now officially started our kitchen demolition . . . yay! I still have a fridge and dishwasher for a couple of days, then it will be hotplates, barbecues and frying pans. The existing floor plan is gone. This kitchen will be nice and user friendly!!
Happy Thanksgiving to all of you. We will be celebrating our Candadian Thanksgiving with our international relatives all the way down in Bellingham, Washington. It will be a better one than last year. Life is good around here. We will continue to keep you updated.
Kourtney received another iron infusion yesterday. We were somewhat in shock when we found out that her hemoglobin still remains low. Unfortunately the iron still has not been mobilized from the bone marrow to create stores of iron which are needed for red cell production. The hematologist is now going to talk to the big guys down in the USA about possible treatments for her anemia. He doesn't know if Kourtney needs more iron or more EPO . . . anyways, I still feel my daughter is back, happier, healthier, and full of life. She is loving voice lessons, using her wheelchair less at school, doing well in all subjects at school and is crying less during her bath. I am so glad that I don't have to worry about desperately trying to find possible solutions to her anemia issues. Is it not a little strange that these "bone marrow" issues keep popping up? I still have a feeling that a bone marrow transplant will be in the works in the years to come.
We have now officially started our kitchen demolition . . . yay! I still have a fridge and dishwasher for a couple of days, then it will be hotplates, barbecues and frying pans. The existing floor plan is gone. This kitchen will be nice and user friendly!!
Happy Thanksgiving to all of you. We will be celebrating our Candadian Thanksgiving with our international relatives all the way down in Bellingham, Washington. It will be a better one than last year. Life is good around here. We will continue to keep you updated.
Monday, September 28, 2009
SHE IS BACK......
Many people who have observed Kourtney grow up have described as a fun, happy, spunky child that did not let her disease get in the way of life. Over the last year this has changed dramatically. Kourtney's eyes always looked sad, she did not engage in conversation and I longed for her to crack me up with a funny comment or saying. Making Kourtney laugh took effort. We didn't know if it was the pain, depression, anemia or just . . . her age.
Kourtney has received only 2 Epo shots and already, the difference in our child is measurable. Tonight was our weekly Costco meal and the kid was full of one liners. Generally she would sit in a wheelchair and be angry at the world, but over the last week, the lights have come back on (she is now getting more oxygen to her brain). Maybe we should all get some EPO. Shaelyn and Kourtney spend most of their time giggling together where before Kourtney had no use for her sister. She just feels better and not everything feels like finger nails on a chalkboard to her.
The good news is that Pharmacare has been mobilized to pay for Kourtney's EPo shots, but we have to wait to hear if we can get a compassionate supply of EPO from a drug company first, and we have to use that up. But at least there has been contact made.
Tonight our family was in a state of euphoria as we finally have achieved not our new normal, but our old normal. We feel like we have our kid back and we are so thankful. The journey has been so long and we know that the road will always wind but when we see Kourtney free of pain and happy it makes us able to breath again.
Kourtney has received only 2 Epo shots and already, the difference in our child is measurable. Tonight was our weekly Costco meal and the kid was full of one liners. Generally she would sit in a wheelchair and be angry at the world, but over the last week, the lights have come back on (she is now getting more oxygen to her brain). Maybe we should all get some EPO. Shaelyn and Kourtney spend most of their time giggling together where before Kourtney had no use for her sister. She just feels better and not everything feels like finger nails on a chalkboard to her.
The good news is that Pharmacare has been mobilized to pay for Kourtney's EPo shots, but we have to wait to hear if we can get a compassionate supply of EPO from a drug company first, and we have to use that up. But at least there has been contact made.
Tonight our family was in a state of euphoria as we finally have achieved not our new normal, but our old normal. We feel like we have our kid back and we are so thankful. The journey has been so long and we know that the road will always wind but when we see Kourtney free of pain and happy it makes us able to breath again.
I HAVE BECOME....one of those people.
I would have never considered myself an animal person. I have to be honest and say that I looked down on people that talked about their pets like they were their children; used high squeaky voices when they talked to them and dressed them up in outfits. The biggest dog duty I could not wrap my head around was when dog owners would go for walks with their little plastic bags, armed and ready to pick up the warm, little, old Henry Bars produced by their adorable pet.
Now, here we are 4 months into being animal owners and I have to admit that I have become very attached to my two pets. In fact, by the end of the summer I liked the cat and dog duo more then my own children. I have even changed my theology and believe that all animals go to heaven.
Life has changed around our house. Every morning a wet-pawed puppy makes her rounds to all 3 beds in the house and wags her tail so hard that her bum wiggles. Lexi is greeted with more enthusiasm than a Saskatchewanite at a Roughrider game. The usual morning grumpiness dissipates when Lexi is nearby. How can anyone resist that cute little puppy? Waiting in the wings during this morning routine is Jennifer, trying to get some attention, but trying to be unassuming. As soon as Lexi meets Jennifer's firm gaze, it is game on for the two of them and the chasing around the house begins. This charade never gets old for the two of them. They have become the best of friends.
The other day I woke up from doing nights and I heard Kourtney's sweet voice telling Lexi to come and greet me after my slumber. I loved the change in tone in her voice (mind you after that it was game on for Kourtney and Shaelyn - not so cute and the tone....####. Exactly why I preferred the animals over my children for awhile.
The one thing that I have been avoiding has been the cellophane bag wrapped in the leash, armed and ready for that unexpected dump on the road. As an avid runner I cursed dog owners that allowed their dogs to do this on the sidewalk. I lived in denial for awhile that my dog would be capable of sidewalk carnage. This summer we took her for many walks and not once did it happen. But now that school was in progress part of the daily routine is walking Lexi to school with Shaelyn. I began thinking I was playing with fire the first week of school not having a baggie with me I really would have felt bad if "it" ended up on a shoe, stroller or on the playground somewhere. My guilt got the best of me and I broke down and bought from the dollar store a special contraption that carries the baggies and clips onto the leash. I now felt that I was being a responsible citizen and respecting all the runners in the world.
We had it for a whole week before I had to use it and boy did I have to psych myself up for it. I have done all kinds of nursing including geriatrics, changed many baby diapers but nothing could prepare me for the "first baggie scoop". I had to hold my breath, focus really hard and gave one big quick scoop and quickly tied the bag, only to find there were two more to pick up.My pratical husband chided with me and said "at least your hands will stay warm in the winter." That day I became a "real" dog owner and dog lover. You really can't say you love your pet until you actually sacrifice your sense of smell, and touch. I did it but not looking forward to the next time "it" needs to be done.
Now, here we are 4 months into being animal owners and I have to admit that I have become very attached to my two pets. In fact, by the end of the summer I liked the cat and dog duo more then my own children. I have even changed my theology and believe that all animals go to heaven.
Life has changed around our house. Every morning a wet-pawed puppy makes her rounds to all 3 beds in the house and wags her tail so hard that her bum wiggles. Lexi is greeted with more enthusiasm than a Saskatchewanite at a Roughrider game. The usual morning grumpiness dissipates when Lexi is nearby. How can anyone resist that cute little puppy? Waiting in the wings during this morning routine is Jennifer, trying to get some attention, but trying to be unassuming. As soon as Lexi meets Jennifer's firm gaze, it is game on for the two of them and the chasing around the house begins. This charade never gets old for the two of them. They have become the best of friends.
The other day I woke up from doing nights and I heard Kourtney's sweet voice telling Lexi to come and greet me after my slumber. I loved the change in tone in her voice (mind you after that it was game on for Kourtney and Shaelyn - not so cute and the tone....####. Exactly why I preferred the animals over my children for awhile.
The one thing that I have been avoiding has been the cellophane bag wrapped in the leash, armed and ready for that unexpected dump on the road. As an avid runner I cursed dog owners that allowed their dogs to do this on the sidewalk. I lived in denial for awhile that my dog would be capable of sidewalk carnage. This summer we took her for many walks and not once did it happen. But now that school was in progress part of the daily routine is walking Lexi to school with Shaelyn. I began thinking I was playing with fire the first week of school not having a baggie with me I really would have felt bad if "it" ended up on a shoe, stroller or on the playground somewhere. My guilt got the best of me and I broke down and bought from the dollar store a special contraption that carries the baggies and clips onto the leash. I now felt that I was being a responsible citizen and respecting all the runners in the world.
We had it for a whole week before I had to use it and boy did I have to psych myself up for it. I have done all kinds of nursing including geriatrics, changed many baby diapers but nothing could prepare me for the "first baggie scoop". I had to hold my breath, focus really hard and gave one big quick scoop and quickly tied the bag, only to find there were two more to pick up.My pratical husband chided with me and said "at least your hands will stay warm in the winter." That day I became a "real" dog owner and dog lover. You really can't say you love your pet until you actually sacrifice your sense of smell, and touch. I did it but not looking forward to the next time "it" needs to be done.
Tuesday, September 22, 2009
HAPPY BIRTHDAY.. Kourtney!!
I am now a mother to a 12 year old. The fun is starting for our family. Already I noticed the maturity go to a new level when Kourtney told me how many girls she invited to her birthday party. I thought it was so cute when her list kept getting bigger and bigger. Gone are the days of the formal invites.
Kourtney's Birthday was on Sunday. I have been mulling over in my mind what I could write but the words did not arrive to my mind. I thought I would provide a tear jerker for everyone to read but honestly I could not form the thoughts in my head. As you all know we didn't think we would see this 12th birthday, but there we were on Sunday celebrating with 20 people. I couldn't take away the celebration by reminiscing about the year gone by. Kourtney's birthday has become a milestone and it needs to be celebrated just like every other child; no dressing change included.
We had a lovely, warm fall day. The girls hung around the pool and the hottub, ate a lot of food and cotton candy (we rented Kourtney's favourite - a cotton candy machine). One of our friends, local singer/songwriter, Chris Janz, wrote a song for Kourtney and serenaded her in our backyard. There weren't too many dry eyes around the circle. (Chris is planning to record it - maybe it will be a hit soon).
The day turned out to be a huge success and everyone including Kourtney had a wonderful time.
EPO UPDATE
We still have not received any news about Kourtney's new medication so we are still waiting to hear from the Minister of Health and also the companies that make EPO to see if they will give a compassionate supply to Kourtney. Keep praying!!
A Big But!!! We did manage to get Kourtney started on it on Saturday. I was at work looking through my emails, I was telling one of the nurses about our whole situation with the EPO. She told me that her mom was on it but her mom died in May. She had cleaned up most of her mom's stuff but wasn't sure what to do with the EPO left over. I think God had told her not to throw it out. So...we have enough to get Kourtney started on it and last us 3 weeks. God answers our prayers not like we expect him to but in His Time and In His Ways. Thanks for your prayers and your continued prayers.
Kourtney's Birthday was on Sunday. I have been mulling over in my mind what I could write but the words did not arrive to my mind. I thought I would provide a tear jerker for everyone to read but honestly I could not form the thoughts in my head. As you all know we didn't think we would see this 12th birthday, but there we were on Sunday celebrating with 20 people. I couldn't take away the celebration by reminiscing about the year gone by. Kourtney's birthday has become a milestone and it needs to be celebrated just like every other child; no dressing change included.
We had a lovely, warm fall day. The girls hung around the pool and the hottub, ate a lot of food and cotton candy (we rented Kourtney's favourite - a cotton candy machine). One of our friends, local singer/songwriter, Chris Janz, wrote a song for Kourtney and serenaded her in our backyard. There weren't too many dry eyes around the circle. (Chris is planning to record it - maybe it will be a hit soon).
The day turned out to be a huge success and everyone including Kourtney had a wonderful time.
EPO UPDATE
We still have not received any news about Kourtney's new medication so we are still waiting to hear from the Minister of Health and also the companies that make EPO to see if they will give a compassionate supply to Kourtney. Keep praying!!
A Big But!!! We did manage to get Kourtney started on it on Saturday. I was at work looking through my emails, I was telling one of the nurses about our whole situation with the EPO. She told me that her mom was on it but her mom died in May. She had cleaned up most of her mom's stuff but wasn't sure what to do with the EPO left over. I think God had told her not to throw it out. So...we have enough to get Kourtney started on it and last us 3 weeks. God answers our prayers not like we expect him to but in His Time and In His Ways. Thanks for your prayers and your continued prayers.
Monday, September 14, 2009
Epo...
Before I start my rambling I have to say that our Canadian Health care system has worked in our favour over and over and over again. The services and supplies we get are top notch and I am so thankful that our government supplies everything we need and more for Kourtney.
Unfortunately though most of the services we have received have not been approved with out many phone calls, letters and sometimes even pictures of Kourtney, attempting to prove that Kourtney warrants the services that are rendered. We have faced these challenges over the years with medication, dressing supplies and also home care. There have been many phone calls back and forth to Victoria attempting to be "heard". We have learned over the years that red tape is a natural part of receiving services, products and medications that Kourtney needs. Once again we are in the middle of the battle and feeling a little frustrated by all of this.
As you all know we have been battling severe anemia issues with Kourtney for over a year. Kourtney's hemoglobin, although higher than before, still was not coming up despite the iron infusions. It was a bit puzzling for everyone that she wasn't responding to the iron like she was supposed to. The AH! HA! moment arrived for the hematologist when her blood work from December 08 finally showed up on his desk after sitting on someone 's desk for 9 months. Kourtney's EPO levels were very low so her production of red blood cells was at a halt. Finally, an answer to the very life altering problem, but down deep I knew that this was the start of another long drawn out process that we had faced many times. The hematologist told us he would look after getting the medication for Kourtney, and all I could think in my head was, "good luck with that". He was going to get Kourtney on it the next week, and I was a little leary that this could happen so quickly. Sure enough, a week later, there was a long answering machine message from a very tired hematologist. He had worked long and hard to get the medication for Kourtney. You have to understand that hematologists are highly specialized and there are only a few in North America. He was treated like a peon by someone sitting at a computer telling him that Epo is not an eligible benefit through Pharmacare.
I really hoped that Dr. Davis would have broken through, but nope . . . off to Plan B. Plan B takes many phone calls, hearing many no's, but pressing on despite the rejection. I spent 2.5 hours on the phone attempting to talk to someone who could help me, with no avail. I then called my trusty MLA and right away the ball started rolling to get approval for this medication.
Then I talked to Dr. Davis and we finalized our game plan and by the end of this week Kourtney will hopefully receive her first dose of EPO.
If Kourtney was in kidney failure, she would qualify. Dr. Davis joked with me and told me he could put her on some meds that would make her blood work look like she was in kidney failure, but then he would have to get approval for those meds. He has a dry of a sense of humour but I totally appreciated his willingness to work with me on this one. As a nurse I have worked with many doctors over the years and know how rare Dr. Davis and Dr. Courtemanche are for going above and beyond for Kourtney.
So . . . I am asking you if you have time send up a prayer for this situation . . . it will drastically change how Kourtney is feeling.
Unfortunately though most of the services we have received have not been approved with out many phone calls, letters and sometimes even pictures of Kourtney, attempting to prove that Kourtney warrants the services that are rendered. We have faced these challenges over the years with medication, dressing supplies and also home care. There have been many phone calls back and forth to Victoria attempting to be "heard". We have learned over the years that red tape is a natural part of receiving services, products and medications that Kourtney needs. Once again we are in the middle of the battle and feeling a little frustrated by all of this.
As you all know we have been battling severe anemia issues with Kourtney for over a year. Kourtney's hemoglobin, although higher than before, still was not coming up despite the iron infusions. It was a bit puzzling for everyone that she wasn't responding to the iron like she was supposed to. The AH! HA! moment arrived for the hematologist when her blood work from December 08 finally showed up on his desk after sitting on someone 's desk for 9 months. Kourtney's EPO levels were very low so her production of red blood cells was at a halt. Finally, an answer to the very life altering problem, but down deep I knew that this was the start of another long drawn out process that we had faced many times. The hematologist told us he would look after getting the medication for Kourtney, and all I could think in my head was, "good luck with that". He was going to get Kourtney on it the next week, and I was a little leary that this could happen so quickly. Sure enough, a week later, there was a long answering machine message from a very tired hematologist. He had worked long and hard to get the medication for Kourtney. You have to understand that hematologists are highly specialized and there are only a few in North America. He was treated like a peon by someone sitting at a computer telling him that Epo is not an eligible benefit through Pharmacare.
I really hoped that Dr. Davis would have broken through, but nope . . . off to Plan B. Plan B takes many phone calls, hearing many no's, but pressing on despite the rejection. I spent 2.5 hours on the phone attempting to talk to someone who could help me, with no avail. I then called my trusty MLA and right away the ball started rolling to get approval for this medication.
Then I talked to Dr. Davis and we finalized our game plan and by the end of this week Kourtney will hopefully receive her first dose of EPO.
If Kourtney was in kidney failure, she would qualify. Dr. Davis joked with me and told me he could put her on some meds that would make her blood work look like she was in kidney failure, but then he would have to get approval for those meds. He has a dry of a sense of humour but I totally appreciated his willingness to work with me on this one. As a nurse I have worked with many doctors over the years and know how rare Dr. Davis and Dr. Courtemanche are for going above and beyond for Kourtney.
So . . . I am asking you if you have time send up a prayer for this situation . . . it will drastically change how Kourtney is feeling.
Saturday, September 12, 2009
RANDOM . . . information
School started this week and surprisingly enough everyone settled into their new routines very well. Lexi and Jennifer seemed to like this new schedule and were even spotted laying side by side on the forbidden red couch. Jennifer was taking all the left over school supplies off our coffee table and Lexi was happily chewing pens pencils and erasers.
Shaelyn enjoyed her first day of school,loves her new teacher and is with her nice little group of friends. Kourtney was greeted with hugs from a variety of friends. I was able to drop her off with peace of mind that she was good hands with Tammy, her teacher's aide. She has also decided that she will only ride her wheelchair into the school, park it, and only use it during the heavy traffic times during the day. When she walked into the school the janitor yelled at her and told her to quit running in the school. What an amazing team at the school . . . that is exactly what she needs; a place where people feel comfortable around her and her sarcastic side can be unleashed.
Wednesday was the first full day of school and then Kourtney had a voice lesson right after school. I saw my child transform that day into the old Kourtney. She stood up straight at the microphone and seemed quite mesmerized by her voice teacher who is up for the challenge of getting Kourtney's voice trained.
WARNING . . . this next part is very random and really you don't have to read it if you don't want to.
This is where the random part comes in . . . and the part of my life that I know I have had to let go of because I can't keep up with trying to be someone who I am not . . . In the past I would have been highly discouraged but at the end of the day I was able to laugh almost to the point of tears.
I had worked a night shift Tuesday night and it had been extremely busy. I left my cell phone at work. I woke up around 2:00 and was pleased that I would have time for some coffee before picking up Shaelyn at school. I put the dog outside but it was raining so hard that she didn't want to do her business. Instead of taking time to walk with her outside I left her in the house. She escaped up the stairs and pooped and peed in the living room and family room and then promptly hid under the couch. In between my sips of coffee I tried to lure the dog out but every attempt failed. I managed to pull her out and she yelped like I was strangling her (the thought never even crossed my mind).
I ventured out in the pouring rain with dog in tow, Lexi wearing her harness through one of her legs, me wearing a waterproof jacket that wasn't waterproof. I was soaked and, of course, late picking Shaelyn up from her first day of school. I introduced myself to her new pregnant teacher who probably was a bit frightened by the thought when I told her I was a mat nurse. Shaelyn was the only one patiently waiting and I was gently rebuked by her as we walked home. Then we talked about her first day of school and I told her we had to hurry home because Kourtney had a voice lesson at 3pm (15 minutes away). Shaelyn wanted a snack so I told her to grab something quickly. She wanted popcorn but I told her that popcorn wasn't quick. I got home and . . . no Kourtney. I couldn't reach her on her cellphone and was worried she was trying to get a hold of me on my cellphone. I finally got a hold of her teachers aide. Kourtney had left a 1/2 hour ago, on the bus . . . I had no idea where she was. Meanwhile the the popcorn was being popped in the microwave by Shaelyn( did I not tell you not to pop the popcorn!!!!) and wet Lexi was running through the house. I was calling Kourtney's voice teacher and only got an answering machine message. Kourtney showed up at 5 minutes to 3. She jumped out of her wheelchair and an excited Lexi and Jennifer ran out to greet her. Shaelyn and I attempted to herd the animals into the house but they decided that it was playtime. I ended up chasing Lexi and grabbed her but she squirmed away and slipped onto the pavement and started yelping. Then the girls were mad at me.
Finally 3:10 we were in the van on our way to downtown Abbotsford. Do you think I could find the building?? Downtown Abbotsford is a whole 3 blocks and I could not find it. After a few loops around in the pouring rain I found it. There was a tiny parking spot to fit my van into. Parallel parking is not my gift, so the van was parked with the back end sticking out onto the street. The girls knew at that point not to say anything to me although I was totally in parking violation. We raced into the building and all of us were soaked.
So we walk in at 3:20 and introduced ourselves to Kourtney's voice teacher. He looked a little shocked at the disheveled looking group as we walked into a very trendy studio. He told us that we could all stay in the room and we sat down. I handed him the crumpled soaked registration form that promptly ripped when I handed it to him. Wow did I feel like a loser! During the voice lesson Shaelyn sneezed and farted at the same time. The only redemption during that time was Kourtney's easy smile, her solid voice and her bright eyes. He saw potential and wants to work with what she has.
Although it was torment getting there, we all walked away from the voice lesson with a sense of relief that we actually made it (no dents in the van and no parking tickets). I also have come up with a new Wednesday plan. Last year I probably would have been devastated and cried my eyes out, but I have learned that life happens and I am just thankful that my daughter was able to stand up straight and has the opportunity to train her voice and do what comes naturally to her.
Shaelyn enjoyed her first day of school,loves her new teacher and is with her nice little group of friends. Kourtney was greeted with hugs from a variety of friends. I was able to drop her off with peace of mind that she was good hands with Tammy, her teacher's aide. She has also decided that she will only ride her wheelchair into the school, park it, and only use it during the heavy traffic times during the day. When she walked into the school the janitor yelled at her and told her to quit running in the school. What an amazing team at the school . . . that is exactly what she needs; a place where people feel comfortable around her and her sarcastic side can be unleashed.
Wednesday was the first full day of school and then Kourtney had a voice lesson right after school. I saw my child transform that day into the old Kourtney. She stood up straight at the microphone and seemed quite mesmerized by her voice teacher who is up for the challenge of getting Kourtney's voice trained.
WARNING . . . this next part is very random and really you don't have to read it if you don't want to.
This is where the random part comes in . . . and the part of my life that I know I have had to let go of because I can't keep up with trying to be someone who I am not . . . In the past I would have been highly discouraged but at the end of the day I was able to laugh almost to the point of tears.
I had worked a night shift Tuesday night and it had been extremely busy. I left my cell phone at work. I woke up around 2:00 and was pleased that I would have time for some coffee before picking up Shaelyn at school. I put the dog outside but it was raining so hard that she didn't want to do her business. Instead of taking time to walk with her outside I left her in the house. She escaped up the stairs and pooped and peed in the living room and family room and then promptly hid under the couch. In between my sips of coffee I tried to lure the dog out but every attempt failed. I managed to pull her out and she yelped like I was strangling her (the thought never even crossed my mind).
I ventured out in the pouring rain with dog in tow, Lexi wearing her harness through one of her legs, me wearing a waterproof jacket that wasn't waterproof. I was soaked and, of course, late picking Shaelyn up from her first day of school. I introduced myself to her new pregnant teacher who probably was a bit frightened by the thought when I told her I was a mat nurse. Shaelyn was the only one patiently waiting and I was gently rebuked by her as we walked home. Then we talked about her first day of school and I told her we had to hurry home because Kourtney had a voice lesson at 3pm (15 minutes away). Shaelyn wanted a snack so I told her to grab something quickly. She wanted popcorn but I told her that popcorn wasn't quick. I got home and . . . no Kourtney. I couldn't reach her on her cellphone and was worried she was trying to get a hold of me on my cellphone. I finally got a hold of her teachers aide. Kourtney had left a 1/2 hour ago, on the bus . . . I had no idea where she was. Meanwhile the the popcorn was being popped in the microwave by Shaelyn( did I not tell you not to pop the popcorn!!!!) and wet Lexi was running through the house. I was calling Kourtney's voice teacher and only got an answering machine message. Kourtney showed up at 5 minutes to 3. She jumped out of her wheelchair and an excited Lexi and Jennifer ran out to greet her. Shaelyn and I attempted to herd the animals into the house but they decided that it was playtime. I ended up chasing Lexi and grabbed her but she squirmed away and slipped onto the pavement and started yelping. Then the girls were mad at me.
Finally 3:10 we were in the van on our way to downtown Abbotsford. Do you think I could find the building?? Downtown Abbotsford is a whole 3 blocks and I could not find it. After a few loops around in the pouring rain I found it. There was a tiny parking spot to fit my van into. Parallel parking is not my gift, so the van was parked with the back end sticking out onto the street. The girls knew at that point not to say anything to me although I was totally in parking violation. We raced into the building and all of us were soaked.
So we walk in at 3:20 and introduced ourselves to Kourtney's voice teacher. He looked a little shocked at the disheveled looking group as we walked into a very trendy studio. He told us that we could all stay in the room and we sat down. I handed him the crumpled soaked registration form that promptly ripped when I handed it to him. Wow did I feel like a loser! During the voice lesson Shaelyn sneezed and farted at the same time. The only redemption during that time was Kourtney's easy smile, her solid voice and her bright eyes. He saw potential and wants to work with what she has.
Although it was torment getting there, we all walked away from the voice lesson with a sense of relief that we actually made it (no dents in the van and no parking tickets). I also have come up with a new Wednesday plan. Last year I probably would have been devastated and cried my eyes out, but I have learned that life happens and I am just thankful that my daughter was able to stand up straight and has the opportunity to train her voice and do what comes naturally to her.
Sunday, September 6, 2009
The Last Week of Summer
The last week of summer has been jammed pack full of appointments activities and projects. Sometimes I ask myself, "How do we do it?"I am just thankful that there is McDonald's and Costco to help out with the meals. At this moment I am sitting on the bed in an isolation room in the hematology clinic at Children's. Kourtney is hooked up to an IV getting a iron infusion.
Sunday August 30th . . . We had the worship teams from church over for a barbecue. The total number of people at our house was 55 (cat and dog made it 57). The weather turned out perfectly (sunny and warm). We provided the house and pool and the rest was done. Sounds easy enough, but little did people know that Todd and I did a whirl wind cleaning before the guests arrived. The deck had been redone that week, the out side of the house painted, needless to say the house was in a complete uproar inside and out. Todd worked diligently to get the stairs for our deck finished but unfortunately he couldn't get them done. We had to rely on a dumb waiter system to get the hamburgers and smokies down from the barbecue to the the "crowd" of people.
We then had Monday to regroup ourselves, had some friends over and then . . . Tuesday morning we had a trip to Children's Hospital to see the physio and have a family meeting with the psychologist. The meeting went well until the end . . . Shaelyn told the Dr. that she would prefer not to come back to a meeting like that because it was boring (at least she is honest).
After the appointments we headed to the PNE. We had fun, although Disney World had spoiled us so much that it was actually difficult for us to enjoy the rides at the PNE. Todd even hurt his knee riding on the wooden roller coaster trying to hold onto Shaelyn, who clearly was enjoying herself. Our caregiver, Brittany, got picked out of the audience to be the BC babe in the lumber jack show, which thrilled the girls, and Kourtney was able to get her picture taken with a local TV personality, Tamara Taggart, (she recently was on Regis and Kelly).
We crashed that night at the glitzy Hyatt hotel in downtown Vancouver. Early the next day Todd took Kourtney to her optometrist appointment at Children's. Shaelyn and I stayed back at the hotel and had a luxurious breakfast at McDonald's and then went swimming at the hotel. She was thrilled to have time alone with me, sat on my lap, kissed me on the cheek and told me she wished she was in kindergarten again so we could spend alone time together. After the eye appointment the girls and I went to Robson Street and hit the stores in search of a new backpack for Kourtney. The first store was Lush, where Shaelyn knocked over the displays in the store. We then moved on to the Claire's store. As soon as we were greeted by the sales associate I knew we were in trouble when Shaelyn said out loud, "Is that a boy or a girl mom?" Unsure myself, I could not respond. After two stores Kourtney had to make her selection quickly as Shaelyn began her whining, stating she was bored. We found "the backpack" and went back to the hotel where Todd was nursing his swollen knee.
We picked out glasses for Kourtney and then went on our way home (she looks sophisticated). When we got home Kourtney had a fall down the stairs and blistered her right hip and was sitting in a pool of blood . . .
So here I am, Friday Sept 4th a Children's Hospital . . . So to make a long story short we came to Children's Hospital 2 hours earlier as the blood loss she encountered during the fall was significant enough to lower her hemoglobin and possibly do a blood transfusion. As it turns out though, it is higher than it has been all summer . . . so when she said she felt good 2 weeks ago, it was when her hemoglobin was most likely at it's peak. We also got some other blood tests back from . . . get this . . . December '08. We found out her EPO levels were critically low . . . so this means that Kourtney will start on EPO shots that will most likely raise her hemoglobin significantly in the next couple of weeks. I cannot believe that it took over 9 months for the results to end up on the right desk. I am just glad that airplanes aren't run like hospital labs. I am not sure whether to feel resentment or joy that there is something else that will work to increase her hemoglobin other than just the iron. I don't know what we will do with all the extra energy that she will have.
We have an hour left at the hospital . . . and hopefully will have no more appointments until October 9th!!! YAY!! YAY!! The first month of school unhindered by appointments. What a great way to kick off a school year.
What does the fall look like . . . for the Kujawa's????
Kourtney will be starting voice lessons, and will hopefully do yearbook and drama at school. Shaelyn will be doing skipping and choir. Todd will be back at the same school under "new management" and in the same position with every 2nd Friday off. I will stay in my current position in Maternity and looking forward to some Northview church staffer deliveries.
Our next home improvement project will be our kitchen reno . . . we called in an expert who has given us a design that we would have never thought of ourselves. We asked him if he is also a professional marriage counsellor. He said he could be with all the kitchen's he renovated.) The whole kitchen will be gutted . . . no stone left unturned. I am so looking forward to having a user-friendly kitchen and hosting large groups at our house The deck stairs got finished yesterday with a good old fashioned stair raising, custom wood stairs, wide and easy to get up and down no more dumb waiter.
We are gearing up for another year . . . we feel that normalcy has once again been restored in our home and feel relieved that we have overcome a very difficult year.
Sunday August 30th . . . We had the worship teams from church over for a barbecue. The total number of people at our house was 55 (cat and dog made it 57). The weather turned out perfectly (sunny and warm). We provided the house and pool and the rest was done. Sounds easy enough, but little did people know that Todd and I did a whirl wind cleaning before the guests arrived. The deck had been redone that week, the out side of the house painted, needless to say the house was in a complete uproar inside and out. Todd worked diligently to get the stairs for our deck finished but unfortunately he couldn't get them done. We had to rely on a dumb waiter system to get the hamburgers and smokies down from the barbecue to the the "crowd" of people.
We then had Monday to regroup ourselves, had some friends over and then . . . Tuesday morning we had a trip to Children's Hospital to see the physio and have a family meeting with the psychologist. The meeting went well until the end . . . Shaelyn told the Dr. that she would prefer not to come back to a meeting like that because it was boring (at least she is honest).
After the appointments we headed to the PNE. We had fun, although Disney World had spoiled us so much that it was actually difficult for us to enjoy the rides at the PNE. Todd even hurt his knee riding on the wooden roller coaster trying to hold onto Shaelyn, who clearly was enjoying herself. Our caregiver, Brittany, got picked out of the audience to be the BC babe in the lumber jack show, which thrilled the girls, and Kourtney was able to get her picture taken with a local TV personality, Tamara Taggart, (she recently was on Regis and Kelly).
We crashed that night at the glitzy Hyatt hotel in downtown Vancouver. Early the next day Todd took Kourtney to her optometrist appointment at Children's. Shaelyn and I stayed back at the hotel and had a luxurious breakfast at McDonald's and then went swimming at the hotel. She was thrilled to have time alone with me, sat on my lap, kissed me on the cheek and told me she wished she was in kindergarten again so we could spend alone time together. After the eye appointment the girls and I went to Robson Street and hit the stores in search of a new backpack for Kourtney. The first store was Lush, where Shaelyn knocked over the displays in the store. We then moved on to the Claire's store. As soon as we were greeted by the sales associate I knew we were in trouble when Shaelyn said out loud, "Is that a boy or a girl mom?" Unsure myself, I could not respond. After two stores Kourtney had to make her selection quickly as Shaelyn began her whining, stating she was bored. We found "the backpack" and went back to the hotel where Todd was nursing his swollen knee.
We picked out glasses for Kourtney and then went on our way home (she looks sophisticated). When we got home Kourtney had a fall down the stairs and blistered her right hip and was sitting in a pool of blood . . .
So here I am, Friday Sept 4th a Children's Hospital . . . So to make a long story short we came to Children's Hospital 2 hours earlier as the blood loss she encountered during the fall was significant enough to lower her hemoglobin and possibly do a blood transfusion. As it turns out though, it is higher than it has been all summer . . . so when she said she felt good 2 weeks ago, it was when her hemoglobin was most likely at it's peak. We also got some other blood tests back from . . . get this . . . December '08. We found out her EPO levels were critically low . . . so this means that Kourtney will start on EPO shots that will most likely raise her hemoglobin significantly in the next couple of weeks. I cannot believe that it took over 9 months for the results to end up on the right desk. I am just glad that airplanes aren't run like hospital labs. I am not sure whether to feel resentment or joy that there is something else that will work to increase her hemoglobin other than just the iron. I don't know what we will do with all the extra energy that she will have.
We have an hour left at the hospital . . . and hopefully will have no more appointments until October 9th!!! YAY!! YAY!! The first month of school unhindered by appointments. What a great way to kick off a school year.
What does the fall look like . . . for the Kujawa's????
Kourtney will be starting voice lessons, and will hopefully do yearbook and drama at school. Shaelyn will be doing skipping and choir. Todd will be back at the same school under "new management" and in the same position with every 2nd Friday off. I will stay in my current position in Maternity and looking forward to some Northview church staffer deliveries.
Our next home improvement project will be our kitchen reno . . . we called in an expert who has given us a design that we would have never thought of ourselves. We asked him if he is also a professional marriage counsellor. He said he could be with all the kitchen's he renovated.) The whole kitchen will be gutted . . . no stone left unturned. I am so looking forward to having a user-friendly kitchen and hosting large groups at our house The deck stairs got finished yesterday with a good old fashioned stair raising, custom wood stairs, wide and easy to get up and down no more dumb waiter.
We are gearing up for another year . . . we feel that normalcy has once again been restored in our home and feel relieved that we have overcome a very difficult year.
Tuesday, August 25, 2009
The Glimmer of Hope
I posted a link about the bone marrow transplants that are being done in the states for kids with Recessive Dystrophic EB (Kourtney's type of EB). I really feel that I need to update you on where we stand in the process of all of this.
2 years ago we were sent information about the Liao family. They had 2 boys with RDEB and in a mom's desperate attempt to make her boys well, she went out on a limb and convinced a hematologist to try a stem cell transplant on her eldest son with RDEB. We followed this story with interest and in Spring 2008 there was an article in the Vancouver Sun that suggested that this boy had been cured of the RDEB. As we did more research and talked to more doctors we were very encouraged that the bone marrow transplant was successful. There was a clinical trial that was being put into place and they were looking for more participants. This of course sparked our interest and we began emailing the nurse at a hospital in Minnesota. We found out that the transplant alone would cost 1 million dollars but if there was a sibling bone marrow match the cost would be 500,000 dollars. So last summer we all got tested at Children's Hospital. We found out that Kourtney and Shaelyn were HLA (bone marrow) matches to each other. We were so amazed by all this and really felt that the door was being opened up for us to go to Minneapolois to get this done (as most of you know Shaelyn was diagnosed with RDEB through amniocentesis which carried a 100 percent accuracy rate, and we were highly encouraged to abort.) We did not think that this was a coincidence and even felt more led to pursue the clinical trial.
A couple of months later we began to hear criticism about this trial as one child died during the preparation for the bone marrow transplant. The other criticism we heard was that Mrs. Liao was just saying her son was doing better, but clinically he wasn't doing better according to the "twitter for doctors". I could understand the skepticism but also felt that she must have been encouraged enough to put her 2nd child with RDEB through the same procedure. It was very difficult for me to evaluate all this information but I felt very strongly that I needed to pursue this. I had all my papers ready to send to Minneapolis and then Kourtney got sick last August.
Over the last year we have gotten to know a hematologist at Children's Hospital (which to me has been a divine turn of events). He has close contact with what is going on in Minneapolis but has cautioned that bone marrow transplants are very nasty and according to him, the clinical benefits for kids with EB do not outweigh the risks associated with a bone marrow transplant. Yet he has not seen Kourtney without her bandages so I am not sure if he really understands how nasty EB is.
Over the last year I have emailed the nurse in Minneapolis and did not hear a reply so I was under the impression that the clinical trial had been discontinued. This last month there has been a update on CNN on the Liao family and also there have been two other children featured in newspapers who have had the bone marrow transplant done with successful results.
Although I would love to take Kourtney down to get this done I also realize that there are huge implications for doing this. At this point Kourtney is not strong emotionally and physically to have this done. I also know that I, myself, have "few" reserves left after our year spent in the hospital and don't feel emotionally ready to be in a city in the states without any support around. Kourtney and I experienced loneliness being at Children's Hospital and could not imagine being in a city where we didn't know anyone. The money thing is a huge drawback, although it could be done with fundraisers, we could sell our house and downsize, but we still have to keep in mind that this procedure has been proven not to be a cure for EB, but it does help with the symptoms of EB. We would still have to have a special bathtub and a dressing room, I couldn't imagine starting from nothing again especially when our home is so designed for Kourtney's special needs.
In all honesty I believe it will happen one day but it will happen at Children's Hospital and it will be covered by our health care. I believe there will be a clinical reason to get it done and that reason is her anemia issues that I blogged about a month ago. A bone marrow transplant would replace her tired worn bone marrow with healthy under worked bone marrow.
Right now....we will just take it one day at a time. I know that when the time is right it will be made very clear to us. We want to have HOPE but we want to have "clear" direction when we need to pursue this. I hope this clarifies this for anyone that is wondering and for those eager to fund raise. We are holding back at the moment until we know the time is right. (We would know the time was right if 500,000 fell out of the sky, but at present that has not happened).
We just need continued prayer and support for our family. Although Kourtney is doing soooo much better we are still facing the tween years and many more battles to come. We are hoping we have seen the worse and could not imagine it getting any more difficult.
2 years ago we were sent information about the Liao family. They had 2 boys with RDEB and in a mom's desperate attempt to make her boys well, she went out on a limb and convinced a hematologist to try a stem cell transplant on her eldest son with RDEB. We followed this story with interest and in Spring 2008 there was an article in the Vancouver Sun that suggested that this boy had been cured of the RDEB. As we did more research and talked to more doctors we were very encouraged that the bone marrow transplant was successful. There was a clinical trial that was being put into place and they were looking for more participants. This of course sparked our interest and we began emailing the nurse at a hospital in Minnesota. We found out that the transplant alone would cost 1 million dollars but if there was a sibling bone marrow match the cost would be 500,000 dollars. So last summer we all got tested at Children's Hospital. We found out that Kourtney and Shaelyn were HLA (bone marrow) matches to each other. We were so amazed by all this and really felt that the door was being opened up for us to go to Minneapolois to get this done (as most of you know Shaelyn was diagnosed with RDEB through amniocentesis which carried a 100 percent accuracy rate, and we were highly encouraged to abort.) We did not think that this was a coincidence and even felt more led to pursue the clinical trial.
A couple of months later we began to hear criticism about this trial as one child died during the preparation for the bone marrow transplant. The other criticism we heard was that Mrs. Liao was just saying her son was doing better, but clinically he wasn't doing better according to the "twitter for doctors". I could understand the skepticism but also felt that she must have been encouraged enough to put her 2nd child with RDEB through the same procedure. It was very difficult for me to evaluate all this information but I felt very strongly that I needed to pursue this. I had all my papers ready to send to Minneapolis and then Kourtney got sick last August.
Over the last year we have gotten to know a hematologist at Children's Hospital (which to me has been a divine turn of events). He has close contact with what is going on in Minneapolis but has cautioned that bone marrow transplants are very nasty and according to him, the clinical benefits for kids with EB do not outweigh the risks associated with a bone marrow transplant. Yet he has not seen Kourtney without her bandages so I am not sure if he really understands how nasty EB is.
Over the last year I have emailed the nurse in Minneapolis and did not hear a reply so I was under the impression that the clinical trial had been discontinued. This last month there has been a update on CNN on the Liao family and also there have been two other children featured in newspapers who have had the bone marrow transplant done with successful results.
Although I would love to take Kourtney down to get this done I also realize that there are huge implications for doing this. At this point Kourtney is not strong emotionally and physically to have this done. I also know that I, myself, have "few" reserves left after our year spent in the hospital and don't feel emotionally ready to be in a city in the states without any support around. Kourtney and I experienced loneliness being at Children's Hospital and could not imagine being in a city where we didn't know anyone. The money thing is a huge drawback, although it could be done with fundraisers, we could sell our house and downsize, but we still have to keep in mind that this procedure has been proven not to be a cure for EB, but it does help with the symptoms of EB. We would still have to have a special bathtub and a dressing room, I couldn't imagine starting from nothing again especially when our home is so designed for Kourtney's special needs.
In all honesty I believe it will happen one day but it will happen at Children's Hospital and it will be covered by our health care. I believe there will be a clinical reason to get it done and that reason is her anemia issues that I blogged about a month ago. A bone marrow transplant would replace her tired worn bone marrow with healthy under worked bone marrow.
Right now....we will just take it one day at a time. I know that when the time is right it will be made very clear to us. We want to have HOPE but we want to have "clear" direction when we need to pursue this. I hope this clarifies this for anyone that is wondering and for those eager to fund raise. We are holding back at the moment until we know the time is right. (We would know the time was right if 500,000 fell out of the sky, but at present that has not happened).
We just need continued prayer and support for our family. Although Kourtney is doing soooo much better we are still facing the tween years and many more battles to come. We are hoping we have seen the worse and could not imagine it getting any more difficult.
Sunday, August 23, 2009
Mom....I feel Good!!
1 year ago I remember sitting in church with a very heavy heart. I knew that something was very wrong with Kourtney and I knew I needed to take her to the hospital. Our experience at Children's Hospital turned into the most traumatic experience of our lives as we watched an infection ravage her body and cause pain beyond anything we could ever imagine.We watched our daugter change from a care free dancing queen to a quiet, bitter child that would could not move without a lot of pain. Enough said.
Kourtney's skin has settle down dramatically so this summer our goal was to get Kourtney walking straight and walking more. We came up with plan to get her moving everyday. She had to walk or go swimming, that was the deal. The plan seemed like a good idea, but Kourtney viewed this as torture and decided to not just cry, but wail every time we (Mona, Lorraine, Todd, Brittany, Lexi, Shaelyn, Grandma/pa and myself) would suggest a walk or to go swimming. Any available energy that she had was used up in her protest.
As the summer progressed there was less exercising going on. Walking outside was difficult due to the heat wave and trying to get Kourtney to swim became a battle . No matter what was suggested, Kourtney had already decided that she couldn't do it and came up with every excuse not to. The protests were loud as she attempted to make everyone around her feel sorry for her, how could we make this poor child move. We all knew that the longer you stay in a position the more "stiff" your body becomes and her little body was becoming more stooped. Add this to the sedentary lifestyle further added to her predisposition for depression.
This habitual charade that she performed was exhausting and unrlenting. I was beside myself and I knew that we were at a crossroads with her. If I didn't push her she would lose her ability to walk and if I did make her walk she would throw temper tantrums and make me feel guilty for making her do it. After our trip to Children's and finding out her hemoglobin was so low, I had a guilty moment and thought I was pushing her to hard but I wasn't going to let my guilt stop my child from walking. There was no way really for me to know if she was in pain or if she was just being stubborn, my mom's intuition knew it was more Kourtney just being terribley stubborn. Daughter like mother I knew my stubborness had met it's genetic match!!
When Dr. Courtemanche came out I asked him for advice. He told me that I should push her. He said that we need to learn to hate the disease and fight it every day and not let Kourtney give in to it. With that advice I was bound and determined that Kourtney would start walking even if it was baby steps. I started making "little" changes in the way things were done around the house, sitting on a exercise ball when wathcing TV, not putting her feet up when in her recliner chair, I even stopped one of her pain meds to see if that would help with her energy levels.Kourtney continued the protest but we all perservered. One night there was a lot of yelling, screaming, and many tears between the two of us. I finally asked Kourtney, Do you want to walk? She said yes . . . and I told her I would have to continue on pushing her.
After that talk Kourtney seemed to "perk up". She was phoning friends and making plans to do things. We also went to the pshyciatrist at Children's, and came up with a plan for spending quality time together. The pshychiatrist was insightful, pratical and was able to direct us in this transitional period. Kourtney's antidepressant was also increased. I was skeptical that this plan was going to work especially when her hemoglobin was so low and continued to gear up for the battle.
Last Sunday Kourtney woke up and told me "mom I feel good today". Her eyes looked different, she was happy, she was moving around better and attempting to do activities. This week the old Kourtney is back, she is intereacting with people, giggling with the puppy and not crying every morning when she wakes up.The change? I don't know. It is very possible it is the combination of everything, but whatever it is we are loving having our old Kourtney back. It has been one full year and we can honestly say....she is back. We are encouraged that the baby steps that she is taking are helping and we continue to endure as a family.We are optimistic that Kourtney does have it in her to continue fighting this disease. She is a trooper and we are extremely happy to have our child back.
Kourtney's skin has settle down dramatically so this summer our goal was to get Kourtney walking straight and walking more. We came up with plan to get her moving everyday. She had to walk or go swimming, that was the deal. The plan seemed like a good idea, but Kourtney viewed this as torture and decided to not just cry, but wail every time we (Mona, Lorraine, Todd, Brittany, Lexi, Shaelyn, Grandma/pa and myself) would suggest a walk or to go swimming. Any available energy that she had was used up in her protest.
As the summer progressed there was less exercising going on. Walking outside was difficult due to the heat wave and trying to get Kourtney to swim became a battle . No matter what was suggested, Kourtney had already decided that she couldn't do it and came up with every excuse not to. The protests were loud as she attempted to make everyone around her feel sorry for her, how could we make this poor child move. We all knew that the longer you stay in a position the more "stiff" your body becomes and her little body was becoming more stooped. Add this to the sedentary lifestyle further added to her predisposition for depression.
This habitual charade that she performed was exhausting and unrlenting. I was beside myself and I knew that we were at a crossroads with her. If I didn't push her she would lose her ability to walk and if I did make her walk she would throw temper tantrums and make me feel guilty for making her do it. After our trip to Children's and finding out her hemoglobin was so low, I had a guilty moment and thought I was pushing her to hard but I wasn't going to let my guilt stop my child from walking. There was no way really for me to know if she was in pain or if she was just being stubborn, my mom's intuition knew it was more Kourtney just being terribley stubborn. Daughter like mother I knew my stubborness had met it's genetic match!!
When Dr. Courtemanche came out I asked him for advice. He told me that I should push her. He said that we need to learn to hate the disease and fight it every day and not let Kourtney give in to it. With that advice I was bound and determined that Kourtney would start walking even if it was baby steps. I started making "little" changes in the way things were done around the house, sitting on a exercise ball when wathcing TV, not putting her feet up when in her recliner chair, I even stopped one of her pain meds to see if that would help with her energy levels.Kourtney continued the protest but we all perservered. One night there was a lot of yelling, screaming, and many tears between the two of us. I finally asked Kourtney, Do you want to walk? She said yes . . . and I told her I would have to continue on pushing her.
After that talk Kourtney seemed to "perk up". She was phoning friends and making plans to do things. We also went to the pshyciatrist at Children's, and came up with a plan for spending quality time together. The pshychiatrist was insightful, pratical and was able to direct us in this transitional period. Kourtney's antidepressant was also increased. I was skeptical that this plan was going to work especially when her hemoglobin was so low and continued to gear up for the battle.
Last Sunday Kourtney woke up and told me "mom I feel good today". Her eyes looked different, she was happy, she was moving around better and attempting to do activities. This week the old Kourtney is back, she is intereacting with people, giggling with the puppy and not crying every morning when she wakes up.The change? I don't know. It is very possible it is the combination of everything, but whatever it is we are loving having our old Kourtney back. It has been one full year and we can honestly say....she is back. We are encouraged that the baby steps that she is taking are helping and we continue to endure as a family.We are optimistic that Kourtney does have it in her to continue fighting this disease. She is a trooper and we are extremely happy to have our child back.
Sunday, August 16, 2009
A Tribute to My Man!!!
13 years ago I became MRS Kujawa. I knew Todd was the man for me after the first bike ride he took me on. Todd was a muscular mountain man and I was a petite prairie girl. He suited me up in his bike gear, including biking pants, and let me borrow his sister's bike. My pride kept me from telling Todd that I had never had ridden a bike on anything but a flat prairie road (the strawberry shortcut and the 4 mile gravel road at our farm). After about 1/4 km on the hilly roads of Maple Ridge I told Todd that I needed to rest (and puke). As I assumed the position to puke beside a tree Todd gave me a huge hug and told me that I was wearing his biking pants backwards. After that bike ride and many more bike rides to follow Todd exuded a lot of patience despite my lack of cardiovascular health. Soon though I got better at riding my bike and could manage the hills a lot better, although to this day he can still go up a hill faster then me and always waiting for me at the top.
When we first got married I was working in Dialysis and Todd was finishing his PDP at SFU. After 4 months of marriage Todd had his first day as teacher on call in Langley and was looking forward to putting his first paycheque towards a new bike. That same day I paid a little visit to the Doctor's office as I was "missing something" that month. Sure enough the pill had failed us and we were expecting.The bike plans were put on hold and buying a house became a top priority.
13 months into our marriage we became parents. That was the day that our marriage was put on hold and our focus was put onto our special daughter that God so gentley placed into our lives. For years we neglected each other as we were so exhausted. The tension between us was evident. Todd became very introverted and I became more frustrated as I dealt with many exhausting situations. It is only by the Grace of God that our marriage survived as we led a very empty existence. Todd threw himself into fixing up our home and perfecting his landscaping skills, and I dealt with all the frustrations of caregivers, teacher's aides, dressing supplies, surgeries and etc. The one thing that would always bring me back to the "Todd I knew and fell in love with" was when life got really rough, he would pull out his guitar and sing. Music became the window to the soul of our family and to this day it is very important to us. Anyone who comes and visits knows this especially if they sit in our backyard. (Todd has created a musical sound studio with outdoor speakers in our back yard.)
What tears you apart can also hold you together. That seemed to be our life together as a married couple. Only Todd could really understand my struggles and understood what I was going through but yet we only were connected through our daughter and too exhausted to be anything more to anybody else. It was coexisting through our circumstances and watching our marriage suffer but unable to fix it.
Life changed considerably for us last year as we watched our little girl endure so much pain. As most of you know I had a breakdown. The one thing that I will never forget and am humbled about is how my husband stood up for me during that time. Many people that were close to me told me I was angry, crazy and sick. My husband never once put me down for how I was feeling and got me the necessary help I needed. My husband fought for me and that to me is a sign of true love and commitment. We both knew that we had neglected each other over the years as Kourtney's care was so consuming for the two of us. We knew that time away was mandatory.
Our trip to Mexico was our 2nd honeymoon. Todd and I reinvented who we are as a couple and re-engergized ourselves. Since December we have become so much more in tune with each other's needs. Todd has taken more responsibility with Kourtney's care and I have realized that my husband needs more of me instead of obsessing about Kourtney. Todd has also enjoyed playing and leading worship at church and looks at this as his time away. He always has a project on the go but my needs and his family's needs comes first. He truly is in charge of his family and leads us all to be better people.
Todd and I laugh more together and enjoy the new animals together. He greets me every morning with a cup of coffee and a smoothie. We go out on dates more and plan family events. The one thing I know is that my husband not only loves me but he adores me. He fought for me! He loves me despite my imperfections and struggles. No matter what we have gone through Todd has always risen above life's circumstances and is always waiting for me at the top of the hill.
I love you Todd!! Happy Anniversary!!
Saturday, August 8, 2009
THE DOCTOR VISIT
Every cloud has a silver living . . . and today it came in the form of 6 foot 4 surgeon riding his bike for 4 1/2 hours from Vancouver . . . just because his little patient asked him to come out here. We did a dressing change and I do believe he was appreciate of the relentless nature of Kourtney's disease; seeing her in her own bathtub and dressing room. He was a little envious when he saw the dressing supply room, brimming full of fresh supplies (better stocked than his office). In a clinic it is easy to surround yourself with the professional wall; I'm the doctor and you're the patient. I do believe that once you see a patient in their own environment you understand how the disease affects them on a more personal level. This became very apparent when an excited Lexi bounded into the dressing room and played hide and seek with Kourtney's dressings. The visit was a positive experience for all of us, but it was Kourtney that thanked him over and over again for coming out.
We also had took Lexi to her first puppy training class. I was convinced that she she was the worst behaved puppy in Abbotsford. She decided it was a social time and sniffed all the other puppies and the owners seemed a little horrified by this overly social butterfly. She did not respond to the food snacks that were supplied. We were told that we had a puppy with very "fine" taste buds and that we would have to get some other treats for her. Oh my! Oh my! Her favorite puppy though was Woofie, a havenese/poodle cross...cute. We have 7 classes left to get her trained so I'm going to have to break down and get some raw liver treats for the princess.
Friday, August 7, 2009
Anemia of Chronic Disease
Today was a very discouraging day for Kourtney and I. Kourtney had blood work drawn before her iron infusion and we found out that her hemoglobin is in her boots still and has remained unchanged since her blood work from last month. This is the shortest amount of time between iron infusions and the least amount of change. This means her anemia has gone from iron deficiency anemia to Anemia of Chronic Disease(ACD).
Basically the best way to describe ACD that Kourtney has enough iron stores, yet her bone marrow is so overwhelmed that it cannot work hard enough to transfer the iron from circulating iron to "stored" iron. It is the stored iron that the body uses not the circulating iron. Only in the last few years has ACD been understood at a molecular level and fortunately for us there are ways to increase the hemoglobin. Kourtney still needs the iron but the levels need to be monitored so that the iron does not accumulate in her system and cause toxicity in the heart and liver.
If there was a bright side to our day, it was the hematologist that was covering for Dr. Davis. He was from London and has treated many children and adults with EB. He was very impressed by Kourtney's growth and development and her skin. He said that we had to be grateful that she was able to have IV's because in most children with EB it is very difficult to find veins. His wife is a nephrologist (a kidney doctor), they have a good understanding of ACD so he was going to speak to her about how much iron Kourtney needs to be on and also about getting her started on EPO (a hormone produced by the kidneys to make red blood cells). EPO is what athletes use when they "blood dope". Kourtney's kidneys are working well but giving her EPO will help stimulate RBC production. So.....hopefully it will help. The hematologist is looking at a long term goal for Kourtney and wants to monitor for the next couple of months before starting Kourtney on this. He is speculating and giving us some Hope that Kourtney's hemoglobin may stabilize on its own, since her skin has settled down so much over the last 6 weeks.
Yes, Kourtney's skin is doing well, but she does find it hard to walk and really enjoy life like she used to due to her anemia issues. We have to push her to play Wii or walk around the house. Lexi makes her smile and she is able to bend down far enough to scratch her head. When we arrived home from Children's today Lexi nuzzled up next to her and gave her a huge leg hug . . . it made her feel so good. Kourtney remains very stooped when she walks but straightens out considerably after a swim in the pool or playing on the Wii.
Yesterday Lexi went and to the "groomers". As Todd put it, she looked like someone from the Gaither Homecoming Tour. Her hair was so fluffy and soft. Tomorrow we are starting doggie school. It will be a family learning curve to get this puppy trained. She has been very good, but we want to make sure we get her trained right and we are all on the same page.
Basically the best way to describe ACD that Kourtney has enough iron stores, yet her bone marrow is so overwhelmed that it cannot work hard enough to transfer the iron from circulating iron to "stored" iron. It is the stored iron that the body uses not the circulating iron. Only in the last few years has ACD been understood at a molecular level and fortunately for us there are ways to increase the hemoglobin. Kourtney still needs the iron but the levels need to be monitored so that the iron does not accumulate in her system and cause toxicity in the heart and liver.
If there was a bright side to our day, it was the hematologist that was covering for Dr. Davis. He was from London and has treated many children and adults with EB. He was very impressed by Kourtney's growth and development and her skin. He said that we had to be grateful that she was able to have IV's because in most children with EB it is very difficult to find veins. His wife is a nephrologist (a kidney doctor), they have a good understanding of ACD so he was going to speak to her about how much iron Kourtney needs to be on and also about getting her started on EPO (a hormone produced by the kidneys to make red blood cells). EPO is what athletes use when they "blood dope". Kourtney's kidneys are working well but giving her EPO will help stimulate RBC production. So.....hopefully it will help. The hematologist is looking at a long term goal for Kourtney and wants to monitor for the next couple of months before starting Kourtney on this. He is speculating and giving us some Hope that Kourtney's hemoglobin may stabilize on its own, since her skin has settled down so much over the last 6 weeks.
Yes, Kourtney's skin is doing well, but she does find it hard to walk and really enjoy life like she used to due to her anemia issues. We have to push her to play Wii or walk around the house. Lexi makes her smile and she is able to bend down far enough to scratch her head. When we arrived home from Children's today Lexi nuzzled up next to her and gave her a huge leg hug . . . it made her feel so good. Kourtney remains very stooped when she walks but straightens out considerably after a swim in the pool or playing on the Wii.
Yesterday Lexi went and to the "groomers". As Todd put it, she looked like someone from the Gaither Homecoming Tour. Her hair was so fluffy and soft. Tomorrow we are starting doggie school. It will be a family learning curve to get this puppy trained. She has been very good, but we want to make sure we get her trained right and we are all on the same page.
Thursday, August 6, 2009
SHAE SHAE...
The weather in Abbotsford has cooled. So last night we thought we would go for a family walk through the trails around our house. Shaelyn was confident that Lexi could come and walk with us on a leash. I was a bit leery but also felt that the sooner we could leash train Lexi the better.
We could not believe how well Lexi did on a leash, but what amazed us more was our Shae Shae. She held on to the dog and never once got frustrated when Lexi would stop and attempt to sniff a pole. Shaelyn just kept pulling her along. We were surprised at the patience Shaelyn portrayed and the endurance of the little puppy. We even stopped at the park and Lexi went for a swing and even went down the slide on Shaelyn's lap.
As much as we think Lexi is Kourtney's dog, Shaelyn has really taken to her and loves to "mother" her. She is our Dr. Doolittle.
Tomorrow we are headed to Children's for blood work and iron infusion. We are praying that the IV goes smoothly and that her hemoglobin has increased.
We could not believe how well Lexi did on a leash, but what amazed us more was our Shae Shae. She held on to the dog and never once got frustrated when Lexi would stop and attempt to sniff a pole. Shaelyn just kept pulling her along. We were surprised at the patience Shaelyn portrayed and the endurance of the little puppy. We even stopped at the park and Lexi went for a swing and even went down the slide on Shaelyn's lap.
As much as we think Lexi is Kourtney's dog, Shaelyn has really taken to her and loves to "mother" her. She is our Dr. Doolittle.
Tomorrow we are headed to Children's for blood work and iron infusion. We are praying that the IV goes smoothly and that her hemoglobin has increased.
Saturday, August 1, 2009
The Latest BUZZZZ....
Last week we welcomed another new member to the family . . . a kitty named Jennifer. The first week was absolute chaos as Lexi became confused with this moving "play toy" and any training that we taught her was thrown off. Jennifer was wild and seemed to enjoy taunting the strange new puppy. The success we had with potty training Lexi turned into instant failure and many wet cleanups. Shaelyn and Todd concurred that poop was a lot easier to clean up then pee. This pet thing was not Todd's idea and he maintains that fish are much easier to take care of.
This week though, the drama has settled down and Zazu, Lexi and Jennifer have found themselves "their order" in the animal kingdom or shall I say the "food bowl" order. It is now a common site to see all of them "partaking" in each other's food and water bowls. Lexi and Jennifer eat side by side, Zazu hisses at the two of them but has not ever attacked the two little intruders.
We are experiencing one of the warmest summers on record. Last week the temperature climbed to 38 degrees. We have never been so thankful for our pool and a/c. We have had a ton of pool parties and friends and family over.(check out the pictures of who has been in the pool).
Shaelyn is looking more and more like a Barbie doll with her dark tan, bleached blond hair and long, long legs. She loves having her friends over and entertains almost everyone who comes to the house. She has done skipping camp, she went to camp Stillwood and is looking forward to a soccer camp later this month.
Although the hot weather has left Kourtney home bound she is doing really well. She has been swimming everyday and her skin continues to improve dramatically . . . to the point that she can get in the bathtub without dressings on and she doesn't even shed a tear. We are now really doing a lot of physio with her in the pool and she plays her Wii everyday. Her recent swabs have shown that the infections have backed off completely. She has been off antibiotics since June . . . longest time she hasn't had to take them. She is feeling a bit of cabin fever and is looking forward to doing something fun . . . like camping. Planning is in the works. A lot of planning!!! Kourtney and Shaelyn both have gotten stung by wasps. Kourtney had minimal reaction but Shaelyn's bites swelled up.
After Kourtney's last trip to Children's Hospital in July, we were told she may need a blood transfusion if she didn't start perking up in the next couple of weeks. Much to our dismay Kourtney did not perk up and her skin, despite looking better, was taking a long time to heal. The emails started going back and forth to Dr. Courtermanche (the plastic surgeon). We had a day arranged at Children's for a blood transfusion and also a dressing change so he could see the progress of her skin. We didn't want to tell Kourtney until closer to the time, but Kourtney's keen eyes one day caught one of the email titles. Kourtney was so upset that she decided to email Dr. Courtermanche. She told him she wasn't coming there for a dressing change and if he wanted to see her skin he could come out to Abbotsford. Todd and I read the email after it was sent and although we were horrified at first, we applauded her for being her own advocate and taking matters into her hands. To make a long story short, the "Big City Doctor" is making his way out to hick town, Abbotsford this weekend to see his little patient . . . all because she asked him. After that we will decide if she should be transfused or if she could just have more iron. I can't say enough about Dr. Courtermanche. He truly has been a huge gift to our family and has really carried us through this last year. I have learned a lot from him and he has been there through the stressful times. He says it like it is and keeps an open door policy to our family no matter what we encounter. Even when I ended up in the hospital he stood by our family and never once belittled us for what we were going through.
Todd and I are doing well. We definitely both can recognize when we need to take a step back from Kourtney's care and let each other take over the responsibility. We also have really loved having my 2nd cousin, Brittany, around working at our house playing with the girls and being a huge helping hand. We are also thrilled that Brittany's mom, my cousin Leanne and family have moved to Abbotsford. They have supported, mentored and been there for us over the last year. They have become very committed to our family and very sensitive of the "special needs" of our entire family.
Life is going well and we are anticipating it to continue to be on the upswing. We continue to covet your prayers and support . . . we love getting emails.
This week though, the drama has settled down and Zazu, Lexi and Jennifer have found themselves "their order" in the animal kingdom or shall I say the "food bowl" order. It is now a common site to see all of them "partaking" in each other's food and water bowls. Lexi and Jennifer eat side by side, Zazu hisses at the two of them but has not ever attacked the two little intruders.
We are experiencing one of the warmest summers on record. Last week the temperature climbed to 38 degrees. We have never been so thankful for our pool and a/c. We have had a ton of pool parties and friends and family over.(check out the pictures of who has been in the pool).
Shaelyn is looking more and more like a Barbie doll with her dark tan, bleached blond hair and long, long legs. She loves having her friends over and entertains almost everyone who comes to the house. She has done skipping camp, she went to camp Stillwood and is looking forward to a soccer camp later this month.
Although the hot weather has left Kourtney home bound she is doing really well. She has been swimming everyday and her skin continues to improve dramatically . . . to the point that she can get in the bathtub without dressings on and she doesn't even shed a tear. We are now really doing a lot of physio with her in the pool and she plays her Wii everyday. Her recent swabs have shown that the infections have backed off completely. She has been off antibiotics since June . . . longest time she hasn't had to take them. She is feeling a bit of cabin fever and is looking forward to doing something fun . . . like camping. Planning is in the works. A lot of planning!!! Kourtney and Shaelyn both have gotten stung by wasps. Kourtney had minimal reaction but Shaelyn's bites swelled up.
After Kourtney's last trip to Children's Hospital in July, we were told she may need a blood transfusion if she didn't start perking up in the next couple of weeks. Much to our dismay Kourtney did not perk up and her skin, despite looking better, was taking a long time to heal. The emails started going back and forth to Dr. Courtermanche (the plastic surgeon). We had a day arranged at Children's for a blood transfusion and also a dressing change so he could see the progress of her skin. We didn't want to tell Kourtney until closer to the time, but Kourtney's keen eyes one day caught one of the email titles. Kourtney was so upset that she decided to email Dr. Courtermanche. She told him she wasn't coming there for a dressing change and if he wanted to see her skin he could come out to Abbotsford. Todd and I read the email after it was sent and although we were horrified at first, we applauded her for being her own advocate and taking matters into her hands. To make a long story short, the "Big City Doctor" is making his way out to hick town, Abbotsford this weekend to see his little patient . . . all because she asked him. After that we will decide if she should be transfused or if she could just have more iron. I can't say enough about Dr. Courtermanche. He truly has been a huge gift to our family and has really carried us through this last year. I have learned a lot from him and he has been there through the stressful times. He says it like it is and keeps an open door policy to our family no matter what we encounter. Even when I ended up in the hospital he stood by our family and never once belittled us for what we were going through.
Todd and I are doing well. We definitely both can recognize when we need to take a step back from Kourtney's care and let each other take over the responsibility. We also have really loved having my 2nd cousin, Brittany, around working at our house playing with the girls and being a huge helping hand. We are also thrilled that Brittany's mom, my cousin Leanne and family have moved to Abbotsford. They have supported, mentored and been there for us over the last year. They have become very committed to our family and very sensitive of the "special needs" of our entire family.
Life is going well and we are anticipating it to continue to be on the upswing. We continue to covet your prayers and support . . . we love getting emails.
Monday, July 20, 2009
New Photos
There are a few new photos in the Photo Album. Lexi, Who's Been in the Pool, and The Pool all have new pictures. Check out some of the other albums if you haven't already.
Wednesday, July 15, 2009
WHO LET THE DOG OUT?? OR IS IT WHO LET THE CAT IN??
The other morning at 0300 we were awakened by the very mournful cries of ZAZU wanting to come into the house. He has been banned from our house until he gets used to the fact that Lexi is Queen. So far there have been hisses through our sliding door and a growl from Lexi. We have to make sure the coast is clear of Zazu before Lexi can go outside in order to avoid an attack.
Our days seems to be filled with making sure Lexi does her business before she is allowed upstairs in the rest of her castle. The song by the Baha Men seemed to come to mind over and over again "Who let the Dogs Out? Surprisingly enough she is getting the "hang" of it. We are conditioning her to ring a bell to tell us she has to go to the bathroom. So far Pavlov's dogs are apparently are a bit smarter then Lexi...it will just take a lot of time and consistency.
Kourtney has come alive over the last few days. She is giggling more then usual especially when Lexi is on her bed with her. Her dressing changes are a lot smoother and her skin is improving daily. She also has her new faster wheelchair. She even managed to beat Shae on her bike . . . which caused Shae to became very upset. Kourtney laughed so hard at Shae during her defeat that it intensified Shae's anger. Todd and I shook our heads wondering where this behaviour comes from (Todd of course).
The Kujawa's are doing well. It is amazing what a white ball of fluff can do. Lexi has brought so much joy to all of us. Her master though is Todd. She listens to him and gets very excited when he walks in a room (I know how she feels). It is neat to see how she respects him and is so willing to please him. Shaelyn is our consistent pooper scooper. She is always willing to get her shovel to scoop it up. Thanks Shae. Kourtney calms Lexi down and so far Lexi hasn't even attempted to bite her. I am the one who fills in the gaps with her and enjoys playing with her.
Todd has just finished up a change house for our pool visitors. It looks very modern. We will post some pictures to the blog in the next couple of days.
Life is good . . . the Kujawa's are loving summer!!!
Our days seems to be filled with making sure Lexi does her business before she is allowed upstairs in the rest of her castle. The song by the Baha Men seemed to come to mind over and over again "Who let the Dogs Out? Surprisingly enough she is getting the "hang" of it. We are conditioning her to ring a bell to tell us she has to go to the bathroom. So far Pavlov's dogs are apparently are a bit smarter then Lexi...it will just take a lot of time and consistency.
Kourtney has come alive over the last few days. She is giggling more then usual especially when Lexi is on her bed with her. Her dressing changes are a lot smoother and her skin is improving daily. She also has her new faster wheelchair. She even managed to beat Shae on her bike . . . which caused Shae to became very upset. Kourtney laughed so hard at Shae during her defeat that it intensified Shae's anger. Todd and I shook our heads wondering where this behaviour comes from (Todd of course).
The Kujawa's are doing well. It is amazing what a white ball of fluff can do. Lexi has brought so much joy to all of us. Her master though is Todd. She listens to him and gets very excited when he walks in a room (I know how she feels). It is neat to see how she respects him and is so willing to please him. Shaelyn is our consistent pooper scooper. She is always willing to get her shovel to scoop it up. Thanks Shae. Kourtney calms Lexi down and so far Lexi hasn't even attempted to bite her. I am the one who fills in the gaps with her and enjoys playing with her.
Todd has just finished up a change house for our pool visitors. It looks very modern. We will post some pictures to the blog in the next couple of days.
Life is good . . . the Kujawa's are loving summer!!!
Thursday, July 9, 2009
Lexi, a big vein, and increased retic count
We drove all the way to Falkland, BC to pick up the newest member of our family, Lexi (short for Celexa, an anti depressant medication). A female purebread bichon frise puppy. She was welcomed with open arms to all of us, except of course ZAZU (he has been banned from overnights since he pooped on Kourtney's bed . . . YUCK). The lady that sold Lexi to us had her sleeping in a kennel and going potty outside before we got there. So far so good . . . she has pooped and peed outside. She lets us know by giving us a little dance. She slept quietly in her kennel last night . . . not a peep or poop out of her. The anticipation and arrival of this puppy has been the best anti depressant for all of us so . . . thus the name.
Kourtney and I had to leave Lexi on Wednesday to go to the hospital for more appointments and another iron infusion. Good news . . . her skin is getting better so much now that there was a nice big vein on her arm to start the IV in. They got it started on the first try and the iron infused over the next 4 hours. Her hemoglobin is low again. What I have learned is that iron is actually stored in the skin so when there is chronic skin loss, the iron stores are also lost, therefore creating a low hemoglobin (her skin was really bad before our trip to Florida). The good news is her Red Blood Cells (her retic count) is higher than they have been which means she is capable of making these Red Blood Cells, they just need more iron. The hematologist is now considering starting Kourtney on EPO which will help with RBC production. (EPO is what athletes use when they "blood dope").
Kourtney's skin continues to improve. We have finally have found a combo of dressings that not only protect the skin but help with healing. We call it the horizonal-vertical method. If you are interested I will explain (I am talking about dressings, for you with the overactive imaginations).
So far our summer has been full with lots of pool parties, a fun visit with cousins from Edmonton and the Jonas Brothers concert. Although we will not be going anywhere far we have lots of fun plans this summer.
Thanks to all my friends and family for all the birthday well wishes. Todd and the girls brought in a birthday cake for me into work today, and I have received many wonderful cards and gifts . . . thank-you everyone. Tomorrow, Todd and I are taking off to Harrison for the night. Mona and Bev will be taking care of the 3 girls (Lexi included). We are now on day 4 with the puppy and it is going very well. She sleeps in her kennel at night and is very quiet. She loves playing with the girls and will take her rest time sitting with Kourtney. Very cute.
Kourtney and I had to leave Lexi on Wednesday to go to the hospital for more appointments and another iron infusion. Good news . . . her skin is getting better so much now that there was a nice big vein on her arm to start the IV in. They got it started on the first try and the iron infused over the next 4 hours. Her hemoglobin is low again. What I have learned is that iron is actually stored in the skin so when there is chronic skin loss, the iron stores are also lost, therefore creating a low hemoglobin (her skin was really bad before our trip to Florida). The good news is her Red Blood Cells (her retic count) is higher than they have been which means she is capable of making these Red Blood Cells, they just need more iron. The hematologist is now considering starting Kourtney on EPO which will help with RBC production. (EPO is what athletes use when they "blood dope").
Kourtney's skin continues to improve. We have finally have found a combo of dressings that not only protect the skin but help with healing. We call it the horizonal-vertical method. If you are interested I will explain (I am talking about dressings, for you with the overactive imaginations).
So far our summer has been full with lots of pool parties, a fun visit with cousins from Edmonton and the Jonas Brothers concert. Although we will not be going anywhere far we have lots of fun plans this summer.
Thanks to all my friends and family for all the birthday well wishes. Todd and the girls brought in a birthday cake for me into work today, and I have received many wonderful cards and gifts . . . thank-you everyone. Tomorrow, Todd and I are taking off to Harrison for the night. Mona and Bev will be taking care of the 3 girls (Lexi included). We are now on day 4 with the puppy and it is going very well. She sleeps in her kennel at night and is very quiet. She loves playing with the girls and will take her rest time sitting with Kourtney. Very cute.
Tuesday, June 23, 2009
A Burnt Bag of Popcorn
Today we had the pleasure of hosting Shaelyn's grade 2 class at our house (just the girls). Hosting 12 eight year olds seemed like a daunting task so I called on the expertise of my mom in law to help with crowd control. The girls all walked with us from school to our house. Before we took off the pool cover I sat all the kids down and gave them the rules of the pool. The girls played for a long time in the pool but soon the hunger pangs began to settle in and it was time for an after school snack, or should I say an after school buffet feast.
All the children brought a treat to share. There was everything from donuts, fruit, chips, and one mom even bought all the girls Slurpees.The food was gobbled down surprisingly fast. Then they went swimming again. One little girl had lost her invitation and wanted to come but she didn't have her bathing suit, so she needed to go home to get it. She came about an hour late and brought with her a bag of half burnt, half popped microwave popcorn. She jumped in the water (and nearly drowned - Bev and I to the rescue. I jumped in with my clothes on), and was unaware of what a commotion her bag of popcorn caused. Despite the many leftovers from the buffet, this bag of popcorn became the most popular item on the table. Like bees to honey, and flies to sticky paper these girls inhaled pungent smelling popcorn like they hadn't eaten for a week. The odour still resides in my nasal cavity and I am bit sickened by the smell.
As odd as this sounds there is a sense of reality that hit home to me. I am not referring to the gluttony these kids displayed, although it was fascinating to see the consumption that occurred. (My own child would score high on this list). I thought about how in life we are attracted to the sweetness of what life offers. The more we stuff ourselves with material goods the more we think we will be happy, but what we don't realize is what sustains us is that half-popped, scorched bag of popcorn. To be able to find the sweetness of life through our struggles makes us genuine, credible and likable. I have learned this over the past year, especially through the vulnerability of this blog. I was afraid to show my true feelings but by doing so it has opened me up to many new relationships that I thought I would never have. As difficult as the struggle has been our lives, we have acquired a "new taste" that we would have never developed if we didn't have these struggles. I don't know where we would be but being scorched on life's journey has opened ourselves up to many new opportunities.
Yesterday I was thankful for that little girl's contribution to the party. She helped bring perspective to what people really crave in life, a simple gift from the heart.
Monday, June 15, 2009
How's Kourtney Doing???
I was talking with my friend Shirley today. Her son Mason has a severe seizure disorder. Her life is on a constant roundabout and recently has taken a huge U turn. Mason has just recently been diagnosed with autism, her husband is facing unemployment, selling/buying a house, and to add to this flurry, her step dad passed away suddenly. We talked for about an hour and then she asked me, "How's Kourtney doing?" My answer was a cautious, "good", knowing that in an hour Kourtney was going to be home and I would have to endure the complaint of the day. Shirley understood that the word "good" is relative and continued to ask me what makes her good. I attempted to answer her questions regarding Kourtney's emotional improvement, but still I did not feel I was really answering her question. What makes Kourtney good?
I decided to google the words wellness and health according the World Health Organization.
Health is generally defined as being "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity" according to the World Health Organization (WHO). [1][2].
I believe that I can say Kourtney is doing good because she has achieved a sense of "well being" despite her skin disorder. Although Kourtney's skin is not doing great, her pain is not as excruciating as it was. A decrease in pain factors into every aspect of her life. If I look at pictures of her from one year ago, it is very difficult for me to say she is doing well today. But everyday is an improvement and every dressing change gets easier and more tolerable for all of us. My perspective for Kourtney's " wellness" had to change, and that helps Kourtney face her days better.
Being a dialysis nurse for 13 years has helped me understand that wellness is also a frame of mind, and people with chronic illness cope the best when they stay well mentally. So my answer to Shirley's question should have been ... Kourtney is well.
Then she came home......
Kourtney was in the house before Shaelyn and I got home from Shaelyn's school. Shae was happy, happy, happy, (most likely because we are going to Costco for supper). As soon as we walked in the house Kourtney was in tears calling for me. Here we go again . . . I noticed that there were a few items thrown on the floor. Our cat, Zazu, was beside himself meowing like he needed to protect her but didn't know what to do. I then tried to pry out why she was upset and finally she spilled out what was bothering her. We then chatted . . . amazing how getting things off your chest helps . . . instead of sulking, Kourtney picked up her book and started reading it and switched into my happy studious little girl. WOW - how different from a few months ago when the only thing she could do was watch TV and fall asleep before the show ended. ZAZU decided after all that he needed to drown his sorrows in Shaelyn's fishbowl.
Kourtney's eyes are a lot happier these days and she is not consumed so much with the bath dragon. She is swimming in our pool and loves sitting in the sun and is even sporting a tanned face.
The rest of us are doing well and loving the hot spell. We are having fun in our warm pool and enjoying having our friends and family come over.
I decided to google the words wellness and health according the World Health Organization.
Health is generally defined as being "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity" according to the World Health Organization (WHO). [1][2].
I believe that I can say Kourtney is doing good because she has achieved a sense of "well being" despite her skin disorder. Although Kourtney's skin is not doing great, her pain is not as excruciating as it was. A decrease in pain factors into every aspect of her life. If I look at pictures of her from one year ago, it is very difficult for me to say she is doing well today. But everyday is an improvement and every dressing change gets easier and more tolerable for all of us. My perspective for Kourtney's " wellness" had to change, and that helps Kourtney face her days better.
Being a dialysis nurse for 13 years has helped me understand that wellness is also a frame of mind, and people with chronic illness cope the best when they stay well mentally. So my answer to Shirley's question should have been ... Kourtney is well.
Then she came home......
Kourtney was in the house before Shaelyn and I got home from Shaelyn's school. Shae was happy, happy, happy, (most likely because we are going to Costco for supper). As soon as we walked in the house Kourtney was in tears calling for me. Here we go again . . . I noticed that there were a few items thrown on the floor. Our cat, Zazu, was beside himself meowing like he needed to protect her but didn't know what to do. I then tried to pry out why she was upset and finally she spilled out what was bothering her. We then chatted . . . amazing how getting things off your chest helps . . . instead of sulking, Kourtney picked up her book and started reading it and switched into my happy studious little girl. WOW - how different from a few months ago when the only thing she could do was watch TV and fall asleep before the show ended. ZAZU decided after all that he needed to drown his sorrows in Shaelyn's fishbowl.
Kourtney's eyes are a lot happier these days and she is not consumed so much with the bath dragon. She is swimming in our pool and loves sitting in the sun and is even sporting a tanned face.
The rest of us are doing well and loving the hot spell. We are having fun in our warm pool and enjoying having our friends and family come over.
Monday, June 8, 2009
BIG FEET=Small feat
These last few weeks we have been stuffing Kourtney's feet into her old runners. Buying shoes for Kourtney is not an easy shopping outing for us. If there is one thing that I grieve is that she is unable to wear sandals, flip flops or really pretty shoes. It is interesting how this aspect bothers me. We have to buy shoes that are generally very expensive and name brand like NIKE, Sketchers and Airwalks.
Our last shoe shopping spree was successful at Payless. I found out that at Payless you actually pay more if there isn't a bogo sale. But if I wait for the sales, there are no name brand shoes to be found (I think they hide them until the sale is over. Last week I went to Payless during the bogo and looked for shoes and there were no shoes her size that would work. I had a grieving moment over the cute flip flops but sucked it up and attempted to go through my mental thankful list....!!
The other very difficult part about buying shoes for Kourtney is she has tiny feet. She was a size 13 forever and of course this limits the "cool shoes" without Dora or Princess's on them.
This weekend Todd and I knew that Kourtney needed new shoes because her old ones were very smelly. Despite washing them and Febreezing them, the smell did not go away . . . so today I made it my mission to buy some new running shoes for Kourtney. I went to my one "constant" store,The Shoe Company, and instantly found some cute, trendy shoes. I bought 2 pairs both a size 2, I texted Kourtney at school and told her I would bring them to try them on. She phoned me back and told me that she would appreciate it if I did not text her during class because it was disruptive to the class. (oops silly me). I took them into her and she tried them on . . . and they did not fit . . . she needed a size 3. I had to go back to the store and trade them in for a bigger size. This made Kourtney so happy because now officially her feet are bigger than Shaelyn's.
I share this because it is the small feats in life that can bring so much joy and satisfaction to Kourtney (most women are happy to have small feet). Kourtney's reality and my reality as a mom are so different from so many other children. We seem to have developed an appreciation for the small things in life. Every milestone Kourtney has achieved has not been easy but we rejoice that she can acheive them. We don't worry about what kind of grades she gets we are just happy she gets to school. We don't scold her for wanting to stay up late to watch her favourite TV show we are thankful she has enough energy to stay up. We are thankful when she calls us in the middle of the night to put a blanket on her, we are relieved she isn't puking or having pain. It is the small feats in life that are the big feats for us. It is a refreshing way to live and important reminder that we need to be thankful for everything.
Our last shoe shopping spree was successful at Payless. I found out that at Payless you actually pay more if there isn't a bogo sale. But if I wait for the sales, there are no name brand shoes to be found (I think they hide them until the sale is over. Last week I went to Payless during the bogo and looked for shoes and there were no shoes her size that would work. I had a grieving moment over the cute flip flops but sucked it up and attempted to go through my mental thankful list....!!
The other very difficult part about buying shoes for Kourtney is she has tiny feet. She was a size 13 forever and of course this limits the "cool shoes" without Dora or Princess's on them.
This weekend Todd and I knew that Kourtney needed new shoes because her old ones were very smelly. Despite washing them and Febreezing them, the smell did not go away . . . so today I made it my mission to buy some new running shoes for Kourtney. I went to my one "constant" store,The Shoe Company, and instantly found some cute, trendy shoes. I bought 2 pairs both a size 2, I texted Kourtney at school and told her I would bring them to try them on. She phoned me back and told me that she would appreciate it if I did not text her during class because it was disruptive to the class. (oops silly me). I took them into her and she tried them on . . . and they did not fit . . . she needed a size 3. I had to go back to the store and trade them in for a bigger size. This made Kourtney so happy because now officially her feet are bigger than Shaelyn's.
I share this because it is the small feats in life that can bring so much joy and satisfaction to Kourtney (most women are happy to have small feet). Kourtney's reality and my reality as a mom are so different from so many other children. We seem to have developed an appreciation for the small things in life. Every milestone Kourtney has achieved has not been easy but we rejoice that she can acheive them. We don't worry about what kind of grades she gets we are just happy she gets to school. We don't scold her for wanting to stay up late to watch her favourite TV show we are thankful she has enough energy to stay up. We are thankful when she calls us in the middle of the night to put a blanket on her, we are relieved she isn't puking or having pain. It is the small feats in life that are the big feats for us. It is a refreshing way to live and important reminder that we need to be thankful for everything.
Wednesday, June 3, 2009
SWIMMING
Yesterday Kourtney and Shae had 5 friends over between the 2 of them. It brought a lof of peace joy awe to hear that Kourtney joined her friends in the pool. Despite being tired last night there was a different look in her eyes. It has been a rough year, we have learned that we need to celebrate the "small steps"
Just to let you know that we will be welcoming 2 new females to our home in the next couple of weeks. Jennifer and Lexi. (details to follow).
Just to let you know that we will be welcoming 2 new females to our home in the next couple of weeks. Jennifer and Lexi. (details to follow).
Monday, June 1, 2009
SWINE FLU????
Last night the temperature outside was 29 degrees Celsius. Despite air conditioning the house felt warm. Todd came and sat beside me, shaking vigorously, stating he was cold. I immediately hooked him up with my two favourite drugs, Tylenol and Ibuprofen and he went to bed. A couple of hours later I went to bed and lay beside him, he was like a heater. He told me his whole body ached . . . so I immediately went to the font of all knowledge . . . "google" and I loooked up swine flu. He had all the symptoms, except the coughing.
We went to our family Dr. who concurred it could be the swine flu until he looked in Todd's throat and all thoughts of swine flu dissipated. Once again the strep invasion has reared it's nasty symptoms and has caused Todd to get sick. He just could not even imagine what it was like for Kourtney to have it on her body.
So, now we are all undergoing treatment for strep once again in our household. I just got over a yeast infection from my last course so now I am armed with acidophiles.
Yesterday Kourtney went swimming (with a fair amount of coaxing). She enjoyed it and only complained the water was cold. She is doing quite well right now, we just are hoping and praying that this continues. Generally the summer brings relief especially
when she goes swimming.
Kourtney just got a cell phone with text messaging on it!! We have unlimited texting, for a month. I think it would be awesome if all of you could text her with encouraging messages, she would love it. Her cell phone number is 604-996-3047. I will make sure the ring is off so she won't beinterrupted at school. You can send pictures or video messaging also.
We went to our family Dr. who concurred it could be the swine flu until he looked in Todd's throat and all thoughts of swine flu dissipated. Once again the strep invasion has reared it's nasty symptoms and has caused Todd to get sick. He just could not even imagine what it was like for Kourtney to have it on her body.
So, now we are all undergoing treatment for strep once again in our household. I just got over a yeast infection from my last course so now I am armed with acidophiles.
Yesterday Kourtney went swimming (with a fair amount of coaxing). She enjoyed it and only complained the water was cold. She is doing quite well right now, we just are hoping and praying that this continues. Generally the summer brings relief especially
when she goes swimming.
Kourtney just got a cell phone with text messaging on it!! We have unlimited texting, for a month. I think it would be awesome if all of you could text her with encouraging messages, she would love it. Her cell phone number is 604-996-3047. I will make sure the ring is off so she won't beinterrupted at school. You can send pictures or video messaging also.
Friday, May 29, 2009
Carpe Diem!!!
Carpe Diem!! Seize the day! Pluck your feathers! Enjoy the moment! Today was one of those days. Todd and I both had the day off and we cleaned, cemented, cleaned, organized, cleaned more, did laundry, cleaned and mulched. We even to managed to score a nice cell phone plan deal and I will know be introduced to the wonderful world of Blackberries!!!
The day ended with one of the least painful dressing changes in months (about a 2 for pain). I want to be optimistic that we have reached a new "stage" with Kourtney's skin but the infections still lurk around and can play havoc with her skin. But today was a Carpe Diem day and I am thankful for it!!!
The day ended with one of the least painful dressing changes in months (about a 2 for pain). I want to be optimistic that we have reached a new "stage" with Kourtney's skin but the infections still lurk around and can play havoc with her skin. But today was a Carpe Diem day and I am thankful for it!!!
Wednesday, May 27, 2009
Home for a WEEK
Our lives have been relatively quiet since our return home. We started our "summer parties" on Saturday by celebrating Mom Kujawa's birthday. WE are anticipating many more "pool parties" in the month of June. The year end school parties seem to be a "hot ticket" as Kourtney is already getting asked about them.
Todd has been busy with outdoor projects. The plans he has for our backyard are amazing. He loves doing the work.
Kourtney has settled back to school, her pain is much less and dressing changes are becoming more manageable. I do believe that seeing her friend Megan really helped Kourtney and gave her so much Hope. I also picked up a great dressing tip from Megan's mom, it seems to be working very well.
Shaelyn is singing in a musical this weekend and enjoys skipping. She is anticipating the birth of Mona's cat's kittens. She has even made a bed for the kitten she will get.
I still am in awe at the generousity of the Make A Wish program. We were so spoiled. I am so thankful our family was able to have that oppurtunity. We also loved having Laura along as our "older daughter". She was great with the girls and my girls adored her.
Must run...I am going off to work.
Saturday, May 23, 2009
Unpacked and Put Away
Yesterday I unpacked the suitcases and began putting all the stuff away. Mona did a spring cleaning in our house while we were gone so it was most delightful to put stuff away into a tidy house. I unpacked one suitcase full of souvenirs given to us at "Give Kids the World" (the village where we stayed), the girls received daily gifts including DVDs and Disney World gifts.
Our whole family was treated like royalty from the time we left our house with the firetruck escort, to the time we landed in Abbotsford (and all the stops in between including Orlando, Toronto and Calgary). We were able to go to the front of the line for all venues and for all the rides at Disney World, Universal Studios and Sea World. Shaelyn took full advantage of this for riding on roller coasters and the Tower of Terror. She even was on first name basis with one of the workers on the Aerosmith Rock'n'Roll Roller Coaster. He let her sit in the front car a few times in a row. I had to remind Shaelyn many times that she was a very fortunate child to ride so many times as most people had to wait up to 30 minutes for 1 ride. I did have a goal one day of trying to make her puke, but unfortunately Shaelyn did not meet the height requirement for all the roller coasters I was planning on taking her on at Sea world. Instead Laura and I braved the 2 very large roller coasters, including the Manta where you're hanging beneath the track (see picture).
Kourtney did very well despite the pain and the hot humid weather. She giggled on the teacups as Shaelyn spun her around. They stayed on for 2 back to back rides. She braved Splash Mountain, Kali River Rapids and even the Tower of Terror (the name says it all). She added to her Minnie Mouse collection and wore her mouse ears with pride. I saw my little girl return many times. The pain and the fear vanished while we were there. It was definitely magical.
Our whole family was treated like royalty from the time we left our house with the firetruck escort, to the time we landed in Abbotsford (and all the stops in between including Orlando, Toronto and Calgary). We were able to go to the front of the line for all venues and for all the rides at Disney World, Universal Studios and Sea World. Shaelyn took full advantage of this for riding on roller coasters and the Tower of Terror. She even was on first name basis with one of the workers on the Aerosmith Rock'n'Roll Roller Coaster. He let her sit in the front car a few times in a row. I had to remind Shaelyn many times that she was a very fortunate child to ride so many times as most people had to wait up to 30 minutes for 1 ride. I did have a goal one day of trying to make her puke, but unfortunately Shaelyn did not meet the height requirement for all the roller coasters I was planning on taking her on at Sea world. Instead Laura and I braved the 2 very large roller coasters, including the Manta where you're hanging beneath the track (see picture).
Kourtney did very well despite the pain and the hot humid weather. She giggled on the teacups as Shaelyn spun her around. They stayed on for 2 back to back rides. She braved Splash Mountain, Kali River Rapids and even the Tower of Terror (the name says it all). She added to her Minnie Mouse collection and wore her mouse ears with pride. I saw my little girl return many times. The pain and the fear vanished while we were there. It was definitely magical.
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