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.
Tuesday, August 25, 2009
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.
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