Jax's struggle for independence
Donation protected
Jax's Journey Post Kidney Transplant
From the bottom of our hearts , We are so very Blessed to be able to say Our Journey, "JAX'S JOURNEY" is able to continue because of our Fighter Jax. He makes us all so very proud every day!
Since transplant in Nov 2013 Jax is doing fairly good and continues his fight each every day. In Oct and Nov 2014 Jax went into kidney rejection 2 times and was admitted for 2 weeks on very high amounts of prednisone. Jax and his body over the next few months did not take to the medication well. He gained large amounts of weight ( almost double from transplant) and many many other side effects.
With months of appointments we are still to this day working on a balance of medication to help him stay healthy. With his weight gain and meds Jax is now unable to get up to his room on his own and will be needing a chairlift as Geoff can no longer or safely get him up to his room or shower.
As Jax is getting older and fully dependant on a wheelchair, going outside to camp and being outdoors in a manual wheelchair is challenging. Always having mom, dad, sisters, family or friends pushing him in his chair is very hard and not safe. We are still in process with renovations to the house for Jax to get around safely and independantly. We have to date renovated the kitchen and changed the carpet on the main level to vinyl plank.
We are so truly humbled that so many people would like to help Jax gain just a fraction of some independence that we all have. As we go on this journey we are learning along the way just a few of the things so far that could help Jax.......
*A scooter for Jax to go to CAMP :)
* A chairlift to get to his bedroom
* A ramp to get into the house
Numerous people have asked us what they can do to help, and we don't always have answers.
It is so difficult for us to ask for financial assistance, or to even ask for help to do so. Thank you Janise for giving me the courage to do so.
We recongnize not everyone is in a position to contribute and truly appreciate all the thoughts and prayers.
Stollery Christmas 2014
____________________________________________________________
JAX'S JOURNEY
As some of you know or some of you may be just learning about our son Jax, he has endured many medical challenges throughout his 16 years of life. Jax has been diagnosed with Bilateral Hearing Loss ( severe to profound deafness), Spastic Paraplegia which in the last few years has moved to Quadriplegia and Kidney Disease called Focal Segmental Glomerulosclerosis Syndrome (FSGS). All of these medical issues have proven to be very challenging in their own ways to Jax. He has also been through extensive DNA and Genetic testing to see if how and or if all of these medical issues are related to one another . The doctors have yet to find any related syndromes, which are also proving very challenging for them as well.
Jaxs hearing loss has remained stable for the last 13 years. With use of hearing aids, FM systems and lip reading these essential pieces have helped guide him through his schooling and every day life. As a growing child he is currently on his 3rd pair of hearing aids and 3rd FM system.
With the diagnosis of Spastic Paraplegia Jax has progressed over the last 4 years which is now being called Spastic Quadraplegia, leaving him fully dependent on his wheelchair for mobility. He has had many procedures and surgeries to try and help this condition from getting worse. Over the last 4 years he has experienced 6 major surgeries (adding to his total of approximately 40 procedures and surgeries). Jax has had a baclofen pump inserted into abdomen which feeds Baclofen directly to his spinal cord to help reduce spasticity. The spasticity has pulled his hips out of joint which required a double hip surgery to repair & rebuild his hips (joint / socket). It has also affected the direction of his feet which required some tendon lengthening in his ankles. He was receiving regular physiotherapy at the Glenrose Rehabilitation Hospital to help get him stronger and get back on his feet. This was all progressing nicely until his kidney disease caused his legs and feet to swell so much that he could no longer continue.
Now onto the kidneys ...... His diagnosis of FSGS Kidney Disease (high amounts of protein leakage) has been with him since the age of 5 years old. This disease has been in medicated partial remission until December of 2012. This disease landed Jax (and all of us) in the Stollery Hospital for the month of December which after a kidney biopsy and many, many blood tests revealed that his kidneys were indeed in failure. We knew we would face the day when we would hear the words "Dialysis" & "Transplant", but nothing would prepare us for this. After many discussions with our Nephrologist (kidney doctor) we needed to put a game plan together quickly. The doctors were hoping that his kidneys would hold on long enough so he could go straight into transplant and not require dialysis. Unsure of how much longer his kidneys would last Jax underwent surgery on Boxing Day (2012) to insert the Peritoneal dialysis catheter.
After a week of not feeling good at the end of February 2013 it was decided that Jax was indeed to start dialysis. Surgery was scheduled for March 1st, 2013. With training finished the first week of March we were then able to start his 10 hour a night dialysis treatments at home. While on dialysis Jax has endured many ups and downs. Upset stomachs, sore muscles and feeling tired all the time are just a few of Jax’s current challenges that he faces in his current everyday life. Transplant is the next step ……we are ready!!!
Well so we thought..... while at camp in July, 2013 Jax had some issues and had to come back to Edmonton to be admitted for yet another 2 surgeries. 1 for a blockage in his dialysis tube and 1 to give Jax a g-tude so he could get some proper nutrition as he was loosing to much weight and would need to be strong and ready for transplant.
During this recovery period we were given the greatest news of all.....Geoff(DAD) would be giving JAX "THE GIFT OF LIFE"
Transplant would now be in our near future !!
................until September 2013 when Jax got an infection in his leg from a screw that was placed when he had his hip surgeries. This was yet another major surgery and setback for transplant. It was delayed a little bit but Jax needed to be good and healthy.
Transplant was now scheduled for NOVEMBER 13th, 2013.
Post Kidney Transplant and recovery can be found on Jax's Journey Facebook Page!
______________________________________________________
From the bottom of our hearts , We are so very Blessed to be able to say Our Journey, "JAX'S JOURNEY" is able to continue because of our Fighter Jax. He makes us all so very proud every day!
Since transplant in Nov 2013 Jax is doing fairly good and continues his fight each every day. In Oct and Nov 2014 Jax went into kidney rejection 2 times and was admitted for 2 weeks on very high amounts of prednisone. Jax and his body over the next few months did not take to the medication well. He gained large amounts of weight ( almost double from transplant) and many many other side effects.
With months of appointments we are still to this day working on a balance of medication to help him stay healthy. With his weight gain and meds Jax is now unable to get up to his room on his own and will be needing a chairlift as Geoff can no longer or safely get him up to his room or shower.
As Jax is getting older and fully dependant on a wheelchair, going outside to camp and being outdoors in a manual wheelchair is challenging. Always having mom, dad, sisters, family or friends pushing him in his chair is very hard and not safe. We are still in process with renovations to the house for Jax to get around safely and independantly. We have to date renovated the kitchen and changed the carpet on the main level to vinyl plank.
We are so truly humbled that so many people would like to help Jax gain just a fraction of some independence that we all have. As we go on this journey we are learning along the way just a few of the things so far that could help Jax.......
*A scooter for Jax to go to CAMP :)
* A chairlift to get to his bedroom
* A ramp to get into the house
Numerous people have asked us what they can do to help, and we don't always have answers.
It is so difficult for us to ask for financial assistance, or to even ask for help to do so. Thank you Janise for giving me the courage to do so.
We recongnize not everyone is in a position to contribute and truly appreciate all the thoughts and prayers.
Stollery Christmas 2014____________________________________________________________
JAX'S JOURNEY
As some of you know or some of you may be just learning about our son Jax, he has endured many medical challenges throughout his 16 years of life. Jax has been diagnosed with Bilateral Hearing Loss ( severe to profound deafness), Spastic Paraplegia which in the last few years has moved to Quadriplegia and Kidney Disease called Focal Segmental Glomerulosclerosis Syndrome (FSGS). All of these medical issues have proven to be very challenging in their own ways to Jax. He has also been through extensive DNA and Genetic testing to see if how and or if all of these medical issues are related to one another . The doctors have yet to find any related syndromes, which are also proving very challenging for them as well.
Jaxs hearing loss has remained stable for the last 13 years. With use of hearing aids, FM systems and lip reading these essential pieces have helped guide him through his schooling and every day life. As a growing child he is currently on his 3rd pair of hearing aids and 3rd FM system.
With the diagnosis of Spastic Paraplegia Jax has progressed over the last 4 years which is now being called Spastic Quadraplegia, leaving him fully dependent on his wheelchair for mobility. He has had many procedures and surgeries to try and help this condition from getting worse. Over the last 4 years he has experienced 6 major surgeries (adding to his total of approximately 40 procedures and surgeries). Jax has had a baclofen pump inserted into abdomen which feeds Baclofen directly to his spinal cord to help reduce spasticity. The spasticity has pulled his hips out of joint which required a double hip surgery to repair & rebuild his hips (joint / socket). It has also affected the direction of his feet which required some tendon lengthening in his ankles. He was receiving regular physiotherapy at the Glenrose Rehabilitation Hospital to help get him stronger and get back on his feet. This was all progressing nicely until his kidney disease caused his legs and feet to swell so much that he could no longer continue.
Now onto the kidneys ...... His diagnosis of FSGS Kidney Disease (high amounts of protein leakage) has been with him since the age of 5 years old. This disease has been in medicated partial remission until December of 2012. This disease landed Jax (and all of us) in the Stollery Hospital for the month of December which after a kidney biopsy and many, many blood tests revealed that his kidneys were indeed in failure. We knew we would face the day when we would hear the words "Dialysis" & "Transplant", but nothing would prepare us for this. After many discussions with our Nephrologist (kidney doctor) we needed to put a game plan together quickly. The doctors were hoping that his kidneys would hold on long enough so he could go straight into transplant and not require dialysis. Unsure of how much longer his kidneys would last Jax underwent surgery on Boxing Day (2012) to insert the Peritoneal dialysis catheter.
After a week of not feeling good at the end of February 2013 it was decided that Jax was indeed to start dialysis. Surgery was scheduled for March 1st, 2013. With training finished the first week of March we were then able to start his 10 hour a night dialysis treatments at home. While on dialysis Jax has endured many ups and downs. Upset stomachs, sore muscles and feeling tired all the time are just a few of Jax’s current challenges that he faces in his current everyday life. Transplant is the next step ……we are ready!!!
Well so we thought..... while at camp in July, 2013 Jax had some issues and had to come back to Edmonton to be admitted for yet another 2 surgeries. 1 for a blockage in his dialysis tube and 1 to give Jax a g-tude so he could get some proper nutrition as he was loosing to much weight and would need to be strong and ready for transplant.
During this recovery period we were given the greatest news of all.....Geoff(DAD) would be giving JAX "THE GIFT OF LIFE"
Transplant would now be in our near future !!
................until September 2013 when Jax got an infection in his leg from a screw that was placed when he had his hip surgeries. This was yet another major surgery and setback for transplant. It was delayed a little bit but Jax needed to be good and healthy.
Transplant was now scheduled for NOVEMBER 13th, 2013.
Post Kidney Transplant and recovery can be found on Jax's Journey Facebook Page!
______________________________________________________
Organizer
Jennifer Dorward
Organizer
Edmonton, AB