02.05.2018 awaiting clinic visit at Stanford Clearly its been a year since I've done an update, its not for lack of wanting to - seems in the past I've only done trying posts, when we are battling this or that and I wanted to do an uplifting post and a progress of where things were at but just never actually got around to finishing it and posting it up. Which I regret but part of it or likely most of it - I'm sure - is I didn't want to jinx ourselves and the other part was just focusing on the here and now. I promise I will do more updates in the future, as I feel its important to reflect on the hard times and the easier times.
Over the last year, lots has transpired but mainly just daily living and doing our best to get by and be as productive with our time as possible. Dylan turned 12 years old (about to be 13 in June, which is just hard to believe that we're going to have a teenager). His sister turned 6 but thinks she's going on 15 - ugh but that's a whole other story, ha ha.
Dylan got to attend transplant camp again this past year and actually said he had "fun" and even made a mention if someday he'll be able to be a counselor to kids like him. Not sure if anyone recalls but this is a big step, him being away from us and actually stating he had a good time - yes he still missed us but I think he had less anxiety and more fun this go around.
Christmas was good to him, he got what he wanted and begged for. We got him the new Xbox One S. His last game system he got was while he was in the hospital recovering after transplant, of which it was from a group of friends that bought him an Xbox 360...so this was a big deal, big for us as it was expensive and big accomplishment that he's come this far and had outgrew the old generation game system. It was bittersweet to be honest. In addition, being it was the holiday season and Dylan was in good health, we took the family to "A Christmas Story" musical in San Francisco, it was just nice to get out and be as a family and enjoy this time of year and most importantly not be in a hospital or sick for once.
Winter is typically brutal on Dylan, between asthma and sickness...but honestly this past year was the best year Dylan had ever had in regards to sickness and being hospitalized. Although he had his bouts like anyone else, it was just that - like anyone else. I gauge how he did by how much money we spend on medical co-pays and last year was the least out of pocket we have ever spent in 12 years...I can only hope this past year's trend continues. As I write this, his sister just got over 4 days of that nasty flu that's going around and Dylan to date hasn't gotten it and we're hoping it skips him all together. Its crazy how the normal things like colds and the flu are what keep us regimented and always on high alert. Being immunosuppressed requires this though, you can never let your guard fully down.
2 days ago Dylan was at Stanford for his clinic checkup appointment. His labs were spot on and being that they've been so stable over the course of the last 6 months, they've dropped his Actigal medication completely (which he has been on this med for 12 years of his life) and they've moved his lab draws from every 4-6 weeks to every 3 months - also moved his in office visit at Stanford to once yearly! This is a huge milestone and its one we welcome for him. I knew someday we would get here but when you're in the trenches and trying to dig your way out, its hard to focus on when that day will/might come. Although Dylan will never be completely cured, med free, or out of the woods when it comes to his condition, we appreciate this pinnacle time in his life - where he's just starting to come into his own, that he has less stress associated with persistent lab draws, Dr. visits, and hospitalization.
We have never looked to erase Dylan's past and what he has endured and overcome but we are certainly grateful for this past year and this weeks good news from his transplant team...we can only hope it continues for the foreseeable future - he deserves it, especially as today marks his 7 year Transplant Anniversary.
-Noah
Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge. To get more images put your cursor over the last picture shown on the right, it will scroll to more images***
Over the last year, lots has transpired but mainly just daily living and doing our best to get by and be as productive with our time as possible. Dylan turned 12 years old (about to be 13 in June, which is just hard to believe that we're going to have a teenager). His sister turned 6 but thinks she's going on 15 - ugh but that's a whole other story, ha ha.
Dylan got to attend transplant camp again this past year and actually said he had "fun" and even made a mention if someday he'll be able to be a counselor to kids like him. Not sure if anyone recalls but this is a big step, him being away from us and actually stating he had a good time - yes he still missed us but I think he had less anxiety and more fun this go around.
Christmas was good to him, he got what he wanted and begged for. We got him the new Xbox One S. His last game system he got was while he was in the hospital recovering after transplant, of which it was from a group of friends that bought him an Xbox 360...so this was a big deal, big for us as it was expensive and big accomplishment that he's come this far and had outgrew the old generation game system. It was bittersweet to be honest. In addition, being it was the holiday season and Dylan was in good health, we took the family to "A Christmas Story" musical in San Francisco, it was just nice to get out and be as a family and enjoy this time of year and most importantly not be in a hospital or sick for once.
Winter is typically brutal on Dylan, between asthma and sickness...but honestly this past year was the best year Dylan had ever had in regards to sickness and being hospitalized. Although he had his bouts like anyone else, it was just that - like anyone else. I gauge how he did by how much money we spend on medical co-pays and last year was the least out of pocket we have ever spent in 12 years...I can only hope this past year's trend continues. As I write this, his sister just got over 4 days of that nasty flu that's going around and Dylan to date hasn't gotten it and we're hoping it skips him all together. Its crazy how the normal things like colds and the flu are what keep us regimented and always on high alert. Being immunosuppressed requires this though, you can never let your guard fully down.
2 days ago Dylan was at Stanford for his clinic checkup appointment. His labs were spot on and being that they've been so stable over the course of the last 6 months, they've dropped his Actigal medication completely (which he has been on this med for 12 years of his life) and they've moved his lab draws from every 4-6 weeks to every 3 months - also moved his in office visit at Stanford to once yearly! This is a huge milestone and its one we welcome for him. I knew someday we would get here but when you're in the trenches and trying to dig your way out, its hard to focus on when that day will/might come. Although Dylan will never be completely cured, med free, or out of the woods when it comes to his condition, we appreciate this pinnacle time in his life - where he's just starting to come into his own, that he has less stress associated with persistent lab draws, Dr. visits, and hospitalization.
We have never looked to erase Dylan's past and what he has endured and overcome but we are certainly grateful for this past year and this weeks good news from his transplant team...we can only hope it continues for the foreseeable future - he deserves it, especially as today marks his 7 year Transplant Anniversary.
-Noah
Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge. To get more images put your cursor over the last picture shown on the right, it will scroll to more images***
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