It has been 720 days since my wife saved my son’s life with a kidney transplant. If someone told me four years ago that I would be celebrating this day, I would have thought they were crazy. But here we sit… after over fourteen operations, weeks in the hospital, huge insurance-paid bills and countless tears, we find ourselves “here” and these days “here” is pretty good.
This past year has seen Ryan flourish and he has accomplished many milestones. First and foremost is his eating. Ryan made huge strides in wanting and being able to eat, but we always had his NG feeding tube in as a backup. If he decided not to eat, we just pushed some formula though his tube and we knew he was OK. If he wouldn’t take some medicine, we just pushed it through his tube and went on our way. We had developed a plan at the beginning of this year to wean him from his tube over the course of several months. We would slowly get him use to taking all is medicines by mouth and get him used to more foods and meats over time. That changed on a cold Tuesday in February. After his feeding tube fell out overnight, Ryan decided it was time to be rid of it and decided to start eating and taking his meds by mouth… with the help of Swedish fish. We haven’t had a feeding tube in since. His blood labs are better than they have ever been and we now only have to see the Nephrologists every twelve weeks. Ryan is now taking to two anti-rejection meds a day and an antibiotic three times a week, down from seven meds a day this time last year.
As we all got used to the eating Ryan, we quickly realized that he had become just a “normal” three year old. While the wonderful people and childcare at Child’s Way had allowed him to get to this point, we all could easily see that he no longer needed their services. In June, he started normal daycare and he is doing well adjusting to this new world.
We had planned to carry on our tradition from last year of going to Idlewild Park today to celebrate our second year transplant anniversary or "kidneyversary" as we call it. However, Ryan is fighting an occasional high fever and a cough that just won’t seem to go away, so we spent the day getting blood drawn for labs and visiting our pediatrician. Our best-laid plans are always subject to our top priority, Ryan’s health. We realize that this type of thing comes with the territory, but it doesn’t make it any easier.
To help commemorate Ryan's "Kidneyversary", we created a video slideshow that you can view at: http://vimeo.com/5228200 We have also updated the pictures in the "Pictures" section.
Stephanie and I will occasionally allow ourselves to look back at our journey so far. We often wonder how we made it through those times and will forever carry the scars that brought us to where we are today. We are so grateful to our families, friends, co-workers, employers and caregivers who have helped us to get “here.” Please know that you are also a large part of our journey and we know that you are celebrating with us today. We know too that there are families out there struggling everyday with issues much larger than ours and wish them every bit of strength we can offer.
Our goal has always been to get to “normal” or as normal as this family could be. We have struggled, had some ups, downs and detours, but believe that “here” is pretty close to “normal.” I wrote this last year on our first transplant anniversary and still believes it holds true:
June 18, 2007 changed our lives forever. Ryan, Stephanie and I all have the scars to prove it. We will, however, never let that day define us. We know this experience has only made us all stronger and our love for each other deeper. We look forward to the many transplant anniversaries to come.
I would like to leave you with a the last paragraph from a book titled "All In A Day" that Ryan received from Gloria, his nurse at Child’s Way. It reads: "This day will soon be over and won't be back again. So live it well, make it count, fill it up with you. The day's all yours, it's waiting now... See what you can do."
The Walker’s will continue to “see what we can do.”
With Love,
Erin
