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!! ***
Thursday, November 26, 2009
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.
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