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.
Monday, September 28, 2009
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.
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