Here are a few pics from the day.
Nate
Showing posts with label Friends. Show all posts
Showing posts with label Friends. Show all posts
Wednesday, July 2, 2008
Commitment
This past Sunday, our family participated in a parent/child dedication ceremony at church. We don't baptize infants, nor do we dedicate children by themselves. The dedication is mostly for the parents of a child. We have committed to raising Gwyneth in a home that is centered on God's love for her. My favorite part of our dedications is when we ask the entire church body to stand with us and pray, signifying that they are supporting us over the next several years in our journey together.
Here are a few pics from the day.
Nate
Here are a few pics from the day.
Nate
Saturday, June 21, 2008
Better Late Than Never!
This might be the cutest thing ever...we don't know these kids, but I hear they're faithful blog readers!
Thanks, Bogart Family!
Nate
Thanks, Bogart Family!
Nate
The White Rose Guitar
Doyle Dykes is one of the most respected fingerstyle guitarists in the world. My dad and I got to hear him play a few years back in Southern CA before either of us knew who he was. Simply amazing.
Taylor Guitars partnered with Doyle several years ago to create a personalized guitar for Doyle based on his own specifications...the Taylor Doyle Dykes Signature Model Guitar. They began producing Doyle's guitar in "black" and "natural" (colors) for the public shortly after.
Beyond his specific musical, electronic and stylistic requests, the most identifiable feature of Doyle's guitar is the white rose of mother of pearl inlaid in the guitar head. Everywhere Doyle travels, he always plays a song he wrote for his daughter called "White Rose for Heidi". Before playing the song, he tells the following story...
When my oldest daughter, Heidi, was four years old, I asked if she wanted anything special from God. We were saying our bedtime prayers. She replied, "Yes Daddy, there is one thing I've been thinking about." "What is that?" I asked. "A rose," she said. "I'd like God to bring me a rose."
The next day, I'd forgotten about it. That night at prayer time, she again asked, "Daddy, how come God didn't bring my rose today?" I felt bad, as well as bewildered. I was really at a loss for words. Suddenly, I said, "Well, maybe you need to tell Him what color rose you want." She said, "Oh, well I've been thinking about a white one." We then asked God to deliver a white rose for Heidi.
The next night, after a concert a few hours away, a little lady, who apparently was "special," walked up to me after everyone had left. She asked, "Are you Doyle Dykes?" "Yes," I replied. "God told me to bring you something from my garden today." She handed me what I thought to be carrots or some other vegetable from her garden that was wrapped in aluminum foil. "Thank you, I'll enjoy eating this," I said. She giggled like a child and said, "Uh...You'd better open it."
I peeled back the aluminum foil to find a beautiful, solitary "White rose for Heidi."
A little over a year ago, on the second Sunday of June, my church presented me with a gift of money that they had collected, telling me to buy a new guitar. I've had the same guitar that my parent's bought for me as a Christmas gift about 15 years ago. It's been a solid, wonderful guitar for many years, but has never been something that was well suited for use on stage, especially in our church building playing with our band...in fact, I've been using a borrowed guitar on Sunday mornings for the past year (thanks, Rich!).
My dream has always been to own a Taylor guitar, and the church's gift not only allowed me to buy a Taylor, but to buy one that I would never need or want to replace.
However, partly because I'm lazy, but partly because I knew owning a new Taylor would be as much a curse as a blessing while we lived in Durham (because I would not have been able to play it very much), I put off making the purchase.
All this past year, Tricia has been bugging me about buying the guitar, but I've just been reluctant to do so until we were home again. I shopped quite a bit, looking for exactly what I wanted to buy...I just never bit the bullet. A few months back, after Gwyneth was born, I remembered Doyle and the story he told about his white rose guitar, and mentioned to Tricia how it would be cool to own one of those guitars. We even looked up a few on the internet.
About a month ago, she began telling me about how cool my Father's Day gift was going to be. I couldn't imagine anything better than her Christmas Gift and Birthday Gift for me this past year. But in the back of my mind I thought that maybe she was trying to get my guitar for me, which was a little scary because I knew the specifications I wanted, and I knew that Tricia didn't know much about guitars.
Despite my best efforts, including some intense questioning when she was coming out of sedation the other day (haha), she wouldn't tell me, even when father's day came and went last week. All she would say is that it was the best ever and that it was waiting for me when we got home.
Well, needless to say, Tricia is basically the best wife ever. She found a brand new, natural white rose guitar for an incredible price. She and my mom had it laying open in it's case for me when we got home yesterday, just in time for me to drool for a few minutes before packing it up and taking it to band practice. It is just about the most beautiful guitar in the world, it sounds incredible (especially compared to my old guitar), and it has some very rich and sentimental significance to me (hi, Gwyneth Rose!).
So, without further ado, here are a few pics of my new White Rose Guitar...
I've named her Emma Claire (or, E-Claire, for short).
I have a few more pics of the guitar posted on my Photo Blog. I'll let Tricia post, on her blog, the pics of me actually seeing it for the first time (I'll let you know when she does that).
A HUGE thank you to my Nags Head Church family...I pray that I can use your beautiful gift to continue worshipping God with you for many years to come!
And, here is a video of Doyle himself playing his beautiful song, "White Rose for Heidi".
Thanks!
Nate
Taylor Guitars partnered with Doyle several years ago to create a personalized guitar for Doyle based on his own specifications...the Taylor Doyle Dykes Signature Model Guitar. They began producing Doyle's guitar in "black" and "natural" (colors) for the public shortly after.
Beyond his specific musical, electronic and stylistic requests, the most identifiable feature of Doyle's guitar is the white rose of mother of pearl inlaid in the guitar head. Everywhere Doyle travels, he always plays a song he wrote for his daughter called "White Rose for Heidi". Before playing the song, he tells the following story...
When my oldest daughter, Heidi, was four years old, I asked if she wanted anything special from God. We were saying our bedtime prayers. She replied, "Yes Daddy, there is one thing I've been thinking about." "What is that?" I asked. "A rose," she said. "I'd like God to bring me a rose."
The next day, I'd forgotten about it. That night at prayer time, she again asked, "Daddy, how come God didn't bring my rose today?" I felt bad, as well as bewildered. I was really at a loss for words. Suddenly, I said, "Well, maybe you need to tell Him what color rose you want." She said, "Oh, well I've been thinking about a white one." We then asked God to deliver a white rose for Heidi.
The next night, after a concert a few hours away, a little lady, who apparently was "special," walked up to me after everyone had left. She asked, "Are you Doyle Dykes?" "Yes," I replied. "God told me to bring you something from my garden today." She handed me what I thought to be carrots or some other vegetable from her garden that was wrapped in aluminum foil. "Thank you, I'll enjoy eating this," I said. She giggled like a child and said, "Uh...You'd better open it."
I peeled back the aluminum foil to find a beautiful, solitary "White rose for Heidi."
A little over a year ago, on the second Sunday of June, my church presented me with a gift of money that they had collected, telling me to buy a new guitar. I've had the same guitar that my parent's bought for me as a Christmas gift about 15 years ago. It's been a solid, wonderful guitar for many years, but has never been something that was well suited for use on stage, especially in our church building playing with our band...in fact, I've been using a borrowed guitar on Sunday mornings for the past year (thanks, Rich!).
My dream has always been to own a Taylor guitar, and the church's gift not only allowed me to buy a Taylor, but to buy one that I would never need or want to replace.
However, partly because I'm lazy, but partly because I knew owning a new Taylor would be as much a curse as a blessing while we lived in Durham (because I would not have been able to play it very much), I put off making the purchase.
All this past year, Tricia has been bugging me about buying the guitar, but I've just been reluctant to do so until we were home again. I shopped quite a bit, looking for exactly what I wanted to buy...I just never bit the bullet. A few months back, after Gwyneth was born, I remembered Doyle and the story he told about his white rose guitar, and mentioned to Tricia how it would be cool to own one of those guitars. We even looked up a few on the internet.
About a month ago, she began telling me about how cool my Father's Day gift was going to be. I couldn't imagine anything better than her Christmas Gift and Birthday Gift for me this past year. But in the back of my mind I thought that maybe she was trying to get my guitar for me, which was a little scary because I knew the specifications I wanted, and I knew that Tricia didn't know much about guitars.
Despite my best efforts, including some intense questioning when she was coming out of sedation the other day (haha), she wouldn't tell me, even when father's day came and went last week. All she would say is that it was the best ever and that it was waiting for me when we got home.
Well, needless to say, Tricia is basically the best wife ever. She found a brand new, natural white rose guitar for an incredible price. She and my mom had it laying open in it's case for me when we got home yesterday, just in time for me to drool for a few minutes before packing it up and taking it to band practice. It is just about the most beautiful guitar in the world, it sounds incredible (especially compared to my old guitar), and it has some very rich and sentimental significance to me (hi, Gwyneth Rose!).
So, without further ado, here are a few pics of my new White Rose Guitar...
I've named her Emma Claire (or, E-Claire, for short).
I have a few more pics of the guitar posted on my Photo Blog. I'll let Tricia post, on her blog, the pics of me actually seeing it for the first time (I'll let you know when she does that).
A HUGE thank you to my Nags Head Church family...I pray that I can use your beautiful gift to continue worshipping God with you for many years to come!
And, here is a video of Doyle himself playing his beautiful song, "White Rose for Heidi".
Thanks!
Nate
Friday, June 20, 2008
Remembering Haley Palmer
Hmmm...seems the video does not want to work here, so Read the Story and Watch the Video of Haley's family and community remembering Haley.
Nate
Nate
Sunday, June 15, 2008
Dads
I believe that, perhaps, the most influential factor of being a great dad is having a great dad. Fortunately, I have had 27 years of that kind of influence.
I'm pretty sure that Tricia has been just as fortunate.
Thanks to everyone who has/is wishing me a happy first father's day! I really appreciate it! Make sure you check out Tricia's Blog Post from early this morning.
Thanks!
Nate
I'm pretty sure that Tricia has been just as fortunate.
Thanks to everyone who has/is wishing me a happy first father's day! I really appreciate it! Make sure you check out Tricia's Blog Post from early this morning.
Thanks!
Nate
Friday, June 13, 2008
Choose To Be
When your life involves Cystic Fibrosis, it also involves death. Unless a CFer dies in another premature way, they will die because of their CF, until a cure is found. And, there's no way to know when.
CF is an unforgiving disease that takes no prisoners. Nobody chooses to be a CFer, and there is no easy road for a CFer, even the most healthy. Death is a harsh reality, and those who choose to ignore it tend to die much younger than they should have. To attempt to prolong death means considering incredibly painful and risky surgeries, medications, and other treatments.
And, it's incredibly unfair and unpredictable. The same common cold that might kill one "healthy" CFer might go unnoticed with another. The same drug that could help prolong one life could irreversibly damage another. Some are diagnosed early and live for 30+ years without any major issues, while others aren't diagnosed until their 30's and die a few months later.
When Haley was born 12 years ago, her parents were probably told that their daughter had a 50/50 chance of living to see her late 20's. She didn't even make it half that far. Yet, there are a few thousand other 12 year old CFers living right now who will survive into their 30's.
In the time we've been at Duke during the past 6 months, no less than three people we have met and known personally at Duke have died because of their CF.
One was in her early 20's, just months removed from her second double lung transplant, the first one having failed her after only a few years.
Another was much older, diagnosed just last year, hoping to work her way onto the transplant list before her body gave out on her.
The human will can only take one so far...unlike most cancer and many other diseases, CF is one that simply cannot be "beaten", and even the most determined person can't do a single thing about it when their body turns against them.
Yet, despite all of this, I have never witnessed a CFer complain. I've never heard a CFer say, "I can't". I've never seen a CFer not be able to smile. I've never known a CFer who didn't love and care for others more than themselves.
Perhaps it's the closeness to death that gives these people so much life. Maybe it's the pain and frustration that causes them to find such joy. All I know is, at the end of the day, they are blessed if they choose to be.
And those of us who know them are as well.
Nate
CF is an unforgiving disease that takes no prisoners. Nobody chooses to be a CFer, and there is no easy road for a CFer, even the most healthy. Death is a harsh reality, and those who choose to ignore it tend to die much younger than they should have. To attempt to prolong death means considering incredibly painful and risky surgeries, medications, and other treatments.
And, it's incredibly unfair and unpredictable. The same common cold that might kill one "healthy" CFer might go unnoticed with another. The same drug that could help prolong one life could irreversibly damage another. Some are diagnosed early and live for 30+ years without any major issues, while others aren't diagnosed until their 30's and die a few months later.
When Haley was born 12 years ago, her parents were probably told that their daughter had a 50/50 chance of living to see her late 20's. She didn't even make it half that far. Yet, there are a few thousand other 12 year old CFers living right now who will survive into their 30's.
In the time we've been at Duke during the past 6 months, no less than three people we have met and known personally at Duke have died because of their CF.
One was in her early 20's, just months removed from her second double lung transplant, the first one having failed her after only a few years.
Another was much older, diagnosed just last year, hoping to work her way onto the transplant list before her body gave out on her.
The human will can only take one so far...unlike most cancer and many other diseases, CF is one that simply cannot be "beaten", and even the most determined person can't do a single thing about it when their body turns against them.
Yet, despite all of this, I have never witnessed a CFer complain. I've never heard a CFer say, "I can't". I've never seen a CFer not be able to smile. I've never known a CFer who didn't love and care for others more than themselves.
Perhaps it's the closeness to death that gives these people so much life. Maybe it's the pain and frustration that causes them to find such joy. All I know is, at the end of the day, they are blessed if they choose to be.
And those of us who know them are as well.
Nate
(Bump) Haley Palmer
Haley passed away just a little while ago. Please, take the time to visit her site and leave an encouraging message for her family. CF is a horrible disease, but we can make a difference together.
I've been watching Haley Palmer's Story, and, though many of you are already aware of her, I thought I'd mention her for those who aren't.
Haley is 12, with CF and in desperate need of a transplant, but first, she is in critical condition because of other issues. Her family remains hopeful, praying for the same kind of miracle that Tricia and Gwyneth received.
A few of our family who have also been following Haley's blog have noted how much Haley reminds them of Tricia at that age, and I have to agree (from what I've been told of Tricia at that age).
I know that Haley's family would appreciate your thoughts and prayers right now.
Thanks!
Nate
I've been watching Haley Palmer's Story, and, though many of you are already aware of her, I thought I'd mention her for those who aren't.
Haley is 12, with CF and in desperate need of a transplant, but first, she is in critical condition because of other issues. Her family remains hopeful, praying for the same kind of miracle that Tricia and Gwyneth received.
A few of our family who have also been following Haley's blog have noted how much Haley reminds them of Tricia at that age, and I have to agree (from what I've been told of Tricia at that age).
I know that Haley's family would appreciate your thoughts and prayers right now.
Thanks!
Nate
GearUp4CF.org
Our CF/TX friend, Eva (65redroses.livejournal.com) is helping her dad raise money for CF in a really cool way.
Bill Markvoort is joining GearUp4CF to raise money for the Canadian Cystic Fibrosis Foundation by riding across BC, Canada. The 10 day ride begins in just a few days, so don't miss out on this opportunity to support CF research.
Eva put together the video below to help her dad raise as much money as possible to help find a cure for CF. Check it out, and please, consider Clicking Here and sponsoring Bill by donating the the CCFF today!
Thanks!
Bill Markvoort is joining GearUp4CF to raise money for the Canadian Cystic Fibrosis Foundation by riding across BC, Canada. The 10 day ride begins in just a few days, so don't miss out on this opportunity to support CF research.
Eva put together the video below to help her dad raise as much money as possible to help find a cure for CF. Check it out, and please, consider Clicking Here and sponsoring Bill by donating the the CCFF today!
Thanks!
Friday, June 6, 2008
Another CF Story
To look at her, you'd never know Meagan VanEngen is living with Cystic Fibrosis.
But the vibrant, happy and successful 18 year old takes 12 medications daily, underwent six surgeries in just six years, from 2001 to 2007, and is prone to four-week stints in the hospital with lung infections several times a year.
On Friday, May 31, the Maple Valley High School senior took to the stage — graduating with a 3.992 grade-point average as co-valedictorian of her class... (Read More)
Have fun at LU, Meagan! Let us know if you need anything!
Nate
Thursday, June 5, 2008
The Trip Home
The trip home went very well. Gwyneth slept most of the time, so we only had to make to pit stops on her account to change a few diapers. Tricia drove the whole way, so I got to sit in the back seat and keep Gwyneth happy when she was awake. Our car was loaded from top to bottom everywhere but our three occupied seats...we had already sent two car-fulls home with our parents last week...I have no idea how in the world we accumulated that much stuff. Below is our car with just Gwyneth's stuff (99% of which has been given to us by you crazy blog readers).
I was told that the OBX community was buzzing about us coming home (which still amazes me), and that several local businesses and churches had "welcome home" signs up for us, so we took the "scenic" rout home through Manteo, and sure enough, in Manteo, Nags Head, Kill Devil Hill and Kitty Hawk (where my parents live), there were several signs and banners. Here are a few...
My Grandma's house (our old house...thanks, Mark and Sue!)...we stopped to see Grandma and Ralphie! Grandma was excited to finally hold her great-granddaughter, and Ralphie was licking Tricia like she hadn't been gone a day.
Mama Kwan's...basically my favorite restaurant ever...you'll probably see me there sometime later this week!
Make sure you check out my Dad's Blog and Andy's Blog to see what else was waiting for us!
While we're not in our own home yet, it is incredible to be far away from the hospital and back on the OBX. I'm looking forward to going to work later today for the first time in months (outside of working from my computer in Durham). Tricia is ready to take on her first day by herself as a mommy.
Looks like we'll be seeing a lot of blog readers on Sunday, many of whom just happen to be in town on vacation.
Later!
Nate
I was told that the OBX community was buzzing about us coming home (which still amazes me), and that several local businesses and churches had "welcome home" signs up for us, so we took the "scenic" rout home through Manteo, and sure enough, in Manteo, Nags Head, Kill Devil Hill and Kitty Hawk (where my parents live), there were several signs and banners. Here are a few...
My Grandma's house (our old house...thanks, Mark and Sue!)...we stopped to see Grandma and Ralphie! Grandma was excited to finally hold her great-granddaughter, and Ralphie was licking Tricia like she hadn't been gone a day.
Mama Kwan's...basically my favorite restaurant ever...you'll probably see me there sometime later this week!
Make sure you check out my Dad's Blog and Andy's Blog to see what else was waiting for us!
While we're not in our own home yet, it is incredible to be far away from the hospital and back on the OBX. I'm looking forward to going to work later today for the first time in months (outside of working from my computer in Durham). Tricia is ready to take on her first day by herself as a mommy.
Looks like we'll be seeing a lot of blog readers on Sunday, many of whom just happen to be in town on vacation.
Later!
Nate
Tuesday, May 27, 2008
$983.40
That's how much Lisa Leonard raised for the CFF yesterday! Too cool!!!
Thanks, Lisa, and all those who made a purchase, for helping us find a cure for CF!
Nate
Thanks, Lisa, and all those who made a purchase, for helping us find a cure for CF!
Nate
Monday, May 26, 2008
Memorial Day
As I was sitting in a waiting room while Tricia was at clinic today, an older man (maybe my grandfather's age) was sitting nearby. He was wearing what looked like an Army hat with a bunch of pins.
After a few minutes (he was sleeping when I walked in), I asked him if he was a veteran. He said he was, and I told him, "Thank you for your service to our country."
He looked a little taken aback for a second, then smiled and said, "Thank you."
He then told me that it was about 20 years after he got out of the service before somebody actually said something like that to him.
That's a horrible thing.
If you are a veteran, or your are/have been military family at one point in time, my family would like to say thank you for all that you have done to keep our country safe and give us the freedoms that we are enjoying today.
God bless you.
Nate
After a few minutes (he was sleeping when I walked in), I asked him if he was a veteran. He said he was, and I told him, "Thank you for your service to our country."
He looked a little taken aback for a second, then smiled and said, "Thank you."
He then told me that it was about 20 years after he got out of the service before somebody actually said something like that to him.
That's a horrible thing.
If you are a veteran, or your are/have been military family at one point in time, my family would like to say thank you for all that you have done to keep our country safe and give us the freedoms that we are enjoying today.
God bless you.
Nate
(Bump) Monday, Monday, Monday!
This Monday (May 26/TODAY!), our friend and personal jeweler (haha), Lisa Leonard is going to be donating 20% of all sales ordered from her website today to the Cystic Fibrosis Foundation!!!
If you're looking for something different and very cool, Check It Out! Below is the piece that she helped me design for Tricia a few months ago!
Thanks, Lisa!!!
Nate
If you're looking for something different and very cool, Check It Out! Below is the piece that she helped me design for Tricia a few months ago!
Thanks, Lisa!!!
Nate
Sunday, May 25, 2008
Blogroll (+1)
Somebody asked me a while back who's on my blogroll. Without telling you everything about myself, here are a few blogs I check out daily (even though I've already mentioned them before)...
> All the blogs of my family (at least those I know are blogging). Check out My Dad, Uncle Andy and BIL Terry if you like church ministry related stuff. Check out my SILs Megan and Janet if you like some very funny stories and insights on family life.
> 65Pounds4Pattysue because 1) he's raising money for the CFF with Tricia as his inspiration, and 2) because he's very funny with his stories about tight pants and such.
> It'sTheLittleThings because she's super creative, a good photographer and has a beautiful family...I always smile when I read her blog.
> JessicaClaire because her photography is amazing and she's basically the nicest person ever.
> LivingLifeBreathlessly because she's a good CFer friend, I love South Africa and we get a sneak peek at what the post-TX life is like two months into the future...
(I left this last one off the first time...meant to post it)
> TheLockwoodFamily because they really need your thoughts and prayers right now...
There are a few more on my list, but they'll be kept a secret. Whose blogs do you read?
Nate
> All the blogs of my family (at least those I know are blogging). Check out My Dad, Uncle Andy and BIL Terry if you like church ministry related stuff. Check out my SILs Megan and Janet if you like some very funny stories and insights on family life.
> 65Pounds4Pattysue because 1) he's raising money for the CFF with Tricia as his inspiration, and 2) because he's very funny with his stories about tight pants and such.
> It'sTheLittleThings because she's super creative, a good photographer and has a beautiful family...I always smile when I read her blog.
> JessicaClaire because her photography is amazing and she's basically the nicest person ever.
> LivingLifeBreathlessly because she's a good CFer friend, I love South Africa and we get a sneak peek at what the post-TX life is like two months into the future...
(I left this last one off the first time...meant to post it)
> TheLockwoodFamily because they really need your thoughts and prayers right now...
There are a few more on my list, but they'll be kept a secret. Whose blogs do you read?
Nate
Wednesday, May 21, 2008
Answers
Wow! You people really know how to ask some questions.
There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.
I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.
To make it easier, I split these up into categories.
Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.
Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!
Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).
Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.
Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.
Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.
I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.
Thanks!
Nate
There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.
I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.
To make it easier, I split these up into categories.
Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.
Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!
Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).
Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.
Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.
Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.
I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.
Thanks!
Nate
Friday, May 16, 2008
Yard Sale Tomorrow!!!
Be there or be square!
There is some seriously good stuff to take a look at...here's an email I received a few days ago from one of the organizers...
We have more clothes than WalMart!! We have microwaves, a convection oven, computers, printers, lots of kitchen and household stuff, washing machine and the list goes on and on.
We are also having a raffle:
a 42 piece tool set
2 gift certificates from hair dressers
an autographed photo of Mickey Rooney
limited edition photo of Lucille Ball
a gift certificate for free car detailing
a gift certificate for house cleaning
agift certificate for tupperware
an autographed CD from Coastline Band.
I'm going to do my best to try to make it out there at some point for a little while. Hope to see you there! The weatherman just said it's going to be a "Beautiful Day!"
Nate
Thursday, May 15, 2008
Thank You!
We should be at the hospital right now getting ready to bring our baby girl home...I've set this post to automatically be published at noon today.
We want to make sure that we say "thank you" to the NICU staff at Duke for all they have done to help make today possible. There were not many people who truly believed that Gwyneth would survive and grow to be this healthy so soon, and we all of the human credit to the doctors, nurses, respiratory therapists, physical therapists, occupational therapists and the rest of the Duke Intensive Care Nursery staff for making us all believers in miracles.
We especially want to thank our primary nurses, Susannah and Noel. While the entire staff is wonderful, these two have given us very good reason to miss our daily visits to the nursery, as they have invested in our lives in an incredible way. We'll miss you, and we look forward to visiting in the future!
Thanks.
Nate
We want to make sure that we say "thank you" to the NICU staff at Duke for all they have done to help make today possible. There were not many people who truly believed that Gwyneth would survive and grow to be this healthy so soon, and we all of the human credit to the doctors, nurses, respiratory therapists, physical therapists, occupational therapists and the rest of the Duke Intensive Care Nursery staff for making us all believers in miracles.
We especially want to thank our primary nurses, Susannah and Noel. While the entire staff is wonderful, these two have given us very good reason to miss our daily visits to the nursery, as they have invested in our lives in an incredible way. We'll miss you, and we look forward to visiting in the future!
Thanks.
Nate
Wednesday, May 14, 2008
40 Minutes of Sunshine
(written on 5.13.08)
So, I received an email from Jessica Claire a few months back telling me that she was following our blog and wanting to know if we'd be interested in having a photo shoot with her...
Don't know who Jessica Claire is? That's OK, because neither did we...until I checked out her blog and discovered that she's basically one of the best photographers in the world (according to popphoto.com, and I agree).
Anyway, Jessica has family in the RDU area and was in town this weekend for a visit...and, of course, we said "YES!" to her offer. This kind of opportunity doesn't come around very often!
The forecast for yesterday was "partly cloudy with a 20% chance of rain". It was raining and cold when we woke up. It was raining and cold when we left to drive to meet Jessica.
As we pulled up to the shoot location, the clouds parted and the sun came out. For 40 minutes, the weather was perfect.
As we entered Elmo's Diner for a late breakfast, the sun disappeared...it never showed it's face again for the rest of the day.
And, we all got to spend some time with Gwyneth later that morning as well! That's what I call a perfect Mother's Day/Birthday gift for Tricia.
Here's Jessica with Gwyneth...
Thanks, Jessica! The Photos (amazing!) and the time spent getting to know you (also amazing!) are such a wonderful gift!
Nate
So, I received an email from Jessica Claire a few months back telling me that she was following our blog and wanting to know if we'd be interested in having a photo shoot with her...
Don't know who Jessica Claire is? That's OK, because neither did we...until I checked out her blog and discovered that she's basically one of the best photographers in the world (according to popphoto.com, and I agree).
Anyway, Jessica has family in the RDU area and was in town this weekend for a visit...and, of course, we said "YES!" to her offer. This kind of opportunity doesn't come around very often!
The forecast for yesterday was "partly cloudy with a 20% chance of rain". It was raining and cold when we woke up. It was raining and cold when we left to drive to meet Jessica.
As we pulled up to the shoot location, the clouds parted and the sun came out. For 40 minutes, the weather was perfect.
As we entered Elmo's Diner for a late breakfast, the sun disappeared...it never showed it's face again for the rest of the day.
And, we all got to spend some time with Gwyneth later that morning as well! That's what I call a perfect Mother's Day/Birthday gift for Tricia.Here's Jessica with Gwyneth...
Thanks, Jessica! The Photos (amazing!) and the time spent getting to know you (also amazing!) are such a wonderful gift!Nate
Tuesday, May 13, 2008
Birthday Fun!
Tricia is at a hair salon with one of her favorite nurses (hey Lindsy!) getting her hair done...Lindsy has some wild (but fun) hair...I'm very interested to see what Tricia looks like when I pick her up from PT in a little while... It should be nice for her since she hasn't had anything "professionally" done with her hair since Early January.
Tricia's birthday gift came in this morning after I had dropped her off with Lindsy! She knows what she's getting, but didn't think it would be here this early. She'll find out when she gets home later today, and she'll be very excited as she's been thinking about getting one ever since she found out she was pregnant.
It's a glider (for those who may not know), basically the ultimate rocking chair...perfect for a mama and baby to spend some peaceful time together.
Nate
Tricia's birthday gift came in this morning after I had dropped her off with Lindsy! She knows what she's getting, but didn't think it would be here this early. She'll find out when she gets home later today, and she'll be very excited as she's been thinking about getting one ever since she found out she was pregnant.
It's a glider (for those who may not know), basically the ultimate rocking chair...perfect for a mama and baby to spend some peaceful time together.
Nate
Monday, May 12, 2008
65Pounds4Pattysue
Meet Ben Roberts, a CFHusband blog reader.
I received an email from Ben a few weeks ago. Ben has come up with a hilariously awesome idea to both lose weight and support for the CFF in honor of Tricia called "65Pounds4Pattsue". Ben has set a goal, beginning today, to lose 65 lbs in one year or less by getting people to sponsor him by donating directly to his CFF Page and ultimately raising $5000 for CF research! Every penny goes directly to the CFF!
He has begun blogging about his experience, and has already had several members of his family, including his wife, join him in his quest. Check it out Here and at least consider cheering him on by leaving an encouraging comment.
Tricia and I have committed to donating $1 for every pound that Ben loses over the next year!
Way To Go Ben!!!
Nate
I received an email from Ben a few weeks ago. Ben has come up with a hilariously awesome idea to both lose weight and support for the CFF in honor of Tricia called "65Pounds4Pattsue". Ben has set a goal, beginning today, to lose 65 lbs in one year or less by getting people to sponsor him by donating directly to his CFF Page and ultimately raising $5000 for CF research! Every penny goes directly to the CFF!
He has begun blogging about his experience, and has already had several members of his family, including his wife, join him in his quest. Check it out Here and at least consider cheering him on by leaving an encouraging comment.
Tricia and I have committed to donating $1 for every pound that Ben loses over the next year!
Way To Go Ben!!!
Nate
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