Nate
Tuesday, July 14, 2009
Monday, July 13, 2009
Evenings on the Beach
The weather was great last week...cool, dry breezes coming off the ocean...perfect for evening walks on the beach...
Nate
Nate
Thursday, July 9, 2009
Wednesday, July 8, 2009
Tuesday, July 7, 2009
Pool Honeys
I've never enjoyed pools very much...I'm definitely a beach bum in every way. But, Gwyneth has made the pool so much more fun than every before...she loves the water, and we're hitting it up a few times a week, making the most of our YMCA membership. Here are a few pics from the 4th of July (Tricia's freckles are my favorite)...
BTW, I tried something new with my editing and really went for a lot more contrast than normal in most of these photos...was pretty happy with the results.
Nate
BTW, I tried something new with my editing and really went for a lot more contrast than normal in most of these photos...was pretty happy with the results.
Nate
Monday, July 6, 2009
Cousin Kisses
You're just going to have to trust me when I tell you that these two, despite their strikingly different features, are indeed first cousins of common blood...
We're looking forward to years of fun as they grow up together.
Nate
We're looking forward to years of fun as they grow up together.
Nate
Reality
It's not something we often talk about between the two of us. It's certainly not something that we usually feel comfortable discussing with even our closest friends and family. It's not even something that comes up in our recent conversations with Tricia's medical team.
But, the reality is, even with the transplant, Tricia is still very sick, and, without a miraculous, unforeseeable medical breakthrough, her life will not extend beyond a handful of years more.
Yes, we do know of transplant patients who have lived well past the 8 year average life-span post double lung transplant, and certainly, a second double lung transplant is, at least, a very narrow possibility. But, those cases are the exception, not the rule.
Reality for us is that Tricia weekly, sometimes daily, deals with an incredible array of physical issues, most of which we choose not to blog or talk publicly about. Relatively speaking (say, compared to a year ago today), Tricia is doing incredibly well, and we are beyond thankful for each day we've been given. The past few months of maintained health have given us more hope than ever that we might be able to enjoy "normal" for a while. She has truly not felt this good in years, and for us to complain about, or even discuss publicly these health issues would be exhausting, depressing, and would not be reflective of the joy and happiness that we sincerely live each day with.
But, the reality is that Tricia's body is and will forever be in a very frail state (those who live with a chronic illness and transplant can relate, I'm sure)...with every fever, every cough, every strange side-effect a bit of worry creeps in, quickly followed by a prayer to hope that it won't be anything major. And, although she is doing so well for Tricia (and much better than many other double TXers at one year out), her bouts with lymphoma, pneumonia and other illnesses this past year have slowed her progress and kept her from doing as well as we had originally hoped for coming out of transplant surgery.
Of course, to maintain a healthy relationship and a healthy grasp of things known as well as things hoped for, the reality of our situation is discussed between us at different levels from time to time...we are grateful that life and death and all the stuff in between is something we have been able to talk about freely since the beginning of our relationship. But, the truth is, it can be difficult to discuss these things with others who know and love us. To talk about it so seriously usually leads to a deep well of emotions, which makes it difficult to talk. To talk about is lightly just seems to lead to confusion and concern...
But, the reality is, we really only see a small piece of true reality. I cannot know what tomorrow may bring, and I am not guaranteed any more time on this earth than Tricia. We make our adventurous plans and dream big just like anyone else, but we also take advantage of every moment together and live for today, believing that God continues to hold our past, present and future in His incomparibly tight and gentle grip.
I never understood what carpe diem was really all about until recently. We have been given an incredible gift...a glimpse of what life could be like without the miracles...and we don't want to go back to the way things were before, taking so much of life, both the "good" and the "bad", for granted.
It is now 4:36am, and I've already been up with a grumpy 18 month old for an hour. My body tells me that I should be sleeping right now, and a few years ago I would have not been too happy about being up at this time of day. But my reality has changed, as has my perspective, and, although I will never perfect it, I am learning, albeit very, very slowly, to find the joy in each and every situation. I wouldn't trade a single, late-night hour with my grumpy daughter for anything...neither would I trade the reality of crawling back into bed with my sleeping wife in a few minutes.
Nate
But, the reality is, even with the transplant, Tricia is still very sick, and, without a miraculous, unforeseeable medical breakthrough, her life will not extend beyond a handful of years more.
Yes, we do know of transplant patients who have lived well past the 8 year average life-span post double lung transplant, and certainly, a second double lung transplant is, at least, a very narrow possibility. But, those cases are the exception, not the rule.
Reality for us is that Tricia weekly, sometimes daily, deals with an incredible array of physical issues, most of which we choose not to blog or talk publicly about. Relatively speaking (say, compared to a year ago today), Tricia is doing incredibly well, and we are beyond thankful for each day we've been given. The past few months of maintained health have given us more hope than ever that we might be able to enjoy "normal" for a while. She has truly not felt this good in years, and for us to complain about, or even discuss publicly these health issues would be exhausting, depressing, and would not be reflective of the joy and happiness that we sincerely live each day with.
But, the reality is that Tricia's body is and will forever be in a very frail state (those who live with a chronic illness and transplant can relate, I'm sure)...with every fever, every cough, every strange side-effect a bit of worry creeps in, quickly followed by a prayer to hope that it won't be anything major. And, although she is doing so well for Tricia (and much better than many other double TXers at one year out), her bouts with lymphoma, pneumonia and other illnesses this past year have slowed her progress and kept her from doing as well as we had originally hoped for coming out of transplant surgery.
Of course, to maintain a healthy relationship and a healthy grasp of things known as well as things hoped for, the reality of our situation is discussed between us at different levels from time to time...we are grateful that life and death and all the stuff in between is something we have been able to talk about freely since the beginning of our relationship. But, the truth is, it can be difficult to discuss these things with others who know and love us. To talk about it so seriously usually leads to a deep well of emotions, which makes it difficult to talk. To talk about is lightly just seems to lead to confusion and concern...
But, the reality is, we really only see a small piece of true reality. I cannot know what tomorrow may bring, and I am not guaranteed any more time on this earth than Tricia. We make our adventurous plans and dream big just like anyone else, but we also take advantage of every moment together and live for today, believing that God continues to hold our past, present and future in His incomparibly tight and gentle grip.
I never understood what carpe diem was really all about until recently. We have been given an incredible gift...a glimpse of what life could be like without the miracles...and we don't want to go back to the way things were before, taking so much of life, both the "good" and the "bad", for granted.
It is now 4:36am, and I've already been up with a grumpy 18 month old for an hour. My body tells me that I should be sleeping right now, and a few years ago I would have not been too happy about being up at this time of day. But my reality has changed, as has my perspective, and, although I will never perfect it, I am learning, albeit very, very slowly, to find the joy in each and every situation. I wouldn't trade a single, late-night hour with my grumpy daughter for anything...neither would I trade the reality of crawling back into bed with my sleeping wife in a few minutes.
Nate
Saturday, July 4, 2009
July 09 Update
Here's a quick update from our trip to Duke:
Gwyneth is doing very well, and her doctors continue to be very happy with her progress. She has hit several milestones in just the past few weeks, including crawling, sitting up (from her hands and knees), pulling herself to a stand from a sitting position, waving and mimicking babbling (see video below). She is finally off a vitamin supplament that we have been giving her since we brought her home, and we are going to be trying a new formula with more calories to help her continue to gain weight. She weighs over 17 lbs now.
Tricia also received great reports. She feels better now than she has in several years, and since her bought with pneumonia a few months ago, she has not had any major lung issues. All of here tests and scans came back looking good and clean, and her doctors are very pleased with where she is at right now.
I also had an appointment with an ENT to discuss my recent sleep study. The sleep study shows that I have severe sleep apnea...on a scale of 1 to 100, any score of 40 and above is considered "severe"...my score was 92. My suspicion for the past few years is that my tonsils are abnormally huge (which the doctors confirm), and my goal has been to have them removed. After seeing my sleep study report, and learning that I've had three different cases of illness related to or caused by my tonsils in the past few months, the doctor agrees that a tonsilectomy is the best option. I've done my homework and know the nature of the surgery and recovery and am very satisfied to finally have a surgery scheduled. Ultimately, my decision comes down to the fact that my apnea and increased illnesses are both unhealthy for Gwyneth and (more so) Tricia.
All in all, it was a great trip, although Gwyneth is just now getting back to her normal sleep schedule, which always gets messed up when we go to Durham overnight.
Here's a cute video (cell phone) showing some of Gwyneth's progress...
Nate
Gwyneth is doing very well, and her doctors continue to be very happy with her progress. She has hit several milestones in just the past few weeks, including crawling, sitting up (from her hands and knees), pulling herself to a stand from a sitting position, waving and mimicking babbling (see video below). She is finally off a vitamin supplament that we have been giving her since we brought her home, and we are going to be trying a new formula with more calories to help her continue to gain weight. She weighs over 17 lbs now.
Tricia also received great reports. She feels better now than she has in several years, and since her bought with pneumonia a few months ago, she has not had any major lung issues. All of here tests and scans came back looking good and clean, and her doctors are very pleased with where she is at right now.
I also had an appointment with an ENT to discuss my recent sleep study. The sleep study shows that I have severe sleep apnea...on a scale of 1 to 100, any score of 40 and above is considered "severe"...my score was 92. My suspicion for the past few years is that my tonsils are abnormally huge (which the doctors confirm), and my goal has been to have them removed. After seeing my sleep study report, and learning that I've had three different cases of illness related to or caused by my tonsils in the past few months, the doctor agrees that a tonsilectomy is the best option. I've done my homework and know the nature of the surgery and recovery and am very satisfied to finally have a surgery scheduled. Ultimately, my decision comes down to the fact that my apnea and increased illnesses are both unhealthy for Gwyneth and (more so) Tricia.
All in all, it was a great trip, although Gwyneth is just now getting back to her normal sleep schedule, which always gets messed up when we go to Durham overnight.
Here's a cute video (cell phone) showing some of Gwyneth's progress...
Nate
Friday, July 3, 2009
4th of July
Here's a little OBX secret...the absolute best place to watch fireworks is on top of Jockey's Ridge...not only do you not have to fight the traffic and the crowds that invade the beaches that night, you can easily see not one, not two, but three different fireworks displays from the biggest sand dunes on the East Coast! Here's another secret...the best place to park and walk up the dunes is at Nags Head Church.
Along with free parking, there will also be free Boar’s Head hotdogs (seriously some of the best dogs ever), free Seafreeze Slushies (nothing better than something ice cold in the middle of summer) and some awesome free activities for kids (can you say two moon bounces?). Did I mention that everything is free?!?
If you're wondering where I'll be tomorrow evening, you can find me in the parking lot of Nags Head Church.
Hope to see you there!
Nate
Parking is limited, so don't be late!
Wednesday, July 1, 2009
7AM
Leaving at 7am this morning for a two day trip to Duke...lots of appointments, even one for me. Praying for a safe trip, good reports and even a little time with some great friends.
Nate
Nate