Saturday, December 31, 2011
For the past two years for Gwyneth's birthday we've asked our friends and family to forgo any birthday gifts for Gwyneth (really, she has everything a four year old could want/need already) and instead purchase new or gently used preemie clothes for us to deliver to the Intensive Care Nurseries at DUKE and CHKD (the two hospitals that have taken such great care of Gwyneth for us). Over the past three years we've delivered nearly 100 gift bags full of clothes.
Gwyneth is now old enough to begin to understand what we're doing, and we're looking forward to continuing this for many years to come. It's a lot of fun and a great way to teach our daughter that her special day doesn't have to be all about her. Collecting and delivering these gifts has truly become one of the highlights of our year.
We learned from our experience at Duke that every little detail for a family of a newborn preemie can be a huge mountain of stress, including (maybe, especially, considering how hard they are to find) finding preemie clothes. Finding clothes tiny enough to fit a 4lb baby can be very difficult.
Here is a blog comment from a mother who received one the gift bags:
I just wanted to say Thank You! I arrived at the duke NICU today and received our onesie and your letter!! My son keylan, was born 3 wks ago @ 24 wks and weighing 1 lb 8 oz. Your gift really touched my heart. With everything going on, I haven't even thought about clothes. At times I feel so alone, to know their are people that care is truly a blessing!! Christy
Last year, we extended the invitation for our "reverse gifting" celebration of Gwyneth's birthday to our blog readers, and we had several people respond! We'd like to again invite you to participate if you want to. Gwyneth's birthday party isn't going to take place for a few more weeks, which means we have plenty of time to gather as many preemie clothes as possible.
If you would like to celebrate Gwyneth's 4th birthday with us in this way, here are three ways to do it:
1. Donate new or gently used preemie clothes to your nearest hospital Infant Care Nursery in honor of Gwyneth and/or any other preemie that has blessed your life.
2. Mail new or gently used preemie clothes to us. We'll deliver them for you to Duke and/or CHKD. (see mailing address and instructions below)
3. Mail or Email gift cards to us from either BabiesRUs or Target and we'll do the shopping for you. (see email and instructions below)
Thank you so much for considering joining us as we bless other preemie families in celebration of our daughter's birth and life!
105 W. Soundside Rd. (for UPS)
PO Box 302 (for all other)
Nags Head, NC 27959
Click Here for My Email
We have had the most success shopping for preemie clothes at BabiesRUs and Target. You can also find lots of preemie clothes at Online Retailers.
E-GiftCards can be purchased at BabiesRUs Here and Target Here.
Please, keep clothes unwrapped (as in, don't wrap them in wrapping paper). The hospital prefers for gifts to be unwrapped so there are no surprises...we'll make sure to put them in gift bags for you when we deliver them. Also, feel free to include a personal note to the preemie family(s) with your gift.
We'll be accepting donations until the end of January. If you have any questions, please email or leave me a comment. Thanks!
I've got a little buddy named Wyatt (below) who is in desperate need of a heart transplant and is receiving help from COTA, Children’s Organ Transplant Association. Wyatt was born early with his twin brother Davis at Duke several months ago. Davis is healthy and now home with his family, but Wyatt is still at Duke waiting for his new heart. Both of these little guys have been cared for by the same staff who took care of Gwyneth.
COTA's Facebook Page is currently being sponsored. Every time someone "likes" their page, $1 is donated to COTA to assist transplant-needy kids and young adults!
Please visit the COTA page, click "like" and spread the word! Thank you!
Tuesday, December 27, 2011
Monday, December 26, 2011
Saturday, December 24, 2011
Wednesday, December 14, 2011
And, if you haven't yet, check out my Photography Website!
Tuesday, December 13, 2011
And, just in case you're wondering, Gwyneth has no reservations about the jolly old elf. But, as much as she enjoys Santa, she's absolutely obsessed (with no real prompting from us) with Baby Jesus...we have several nativity sets around the house right now, and she loves to play with them and carry Jesus everywhere with her. She also LOVES Rudolph (and any reindeer for that matter)!
Thursday, December 8, 2011
Tricia, Gwyneth and I spent yesterday evening with David and Tammy Molnar. In case you don't know, David is an incredible photographer and a childhood friend. David was asked to shoot us (actually, mostly Tricia) for a magazine article about our (Tricia's) story which is scheduled to be published this December. We'll post more info about what magazine soon!
In the meantime, check out David's Website, Blog and Facebook Page!
Monday, December 5, 2011
Friday, October 7, 2011
So, after over a year of planning, we have returned. I am working with a few local Grenoble churches and their musicians. We'll also be looking to serve the local Cystic Fibrosis community in any way that we can. We are also scheduled to visit Rome for a few days to scout out another mission trip that our church is planning for 2012!
We have good internet access at times, so I will be posting photos and updates from time to time.
Thursday, September 15, 2011
You remember that one time a few years ago when your Cristian Broadcasting Network (CBN) contacted me about running a story about our family? Do you remember that I decided not to allow you to run a story about us because I disagreed with many of the theology and values of CBN? Do you remember that I told you that I didn't want people to associate my beliefs and the beliefs of my family about God, sickness, family values, etc. with your beliefs? Remember how it was a tough decision, and I didn't really tell anybody about it then because I didn't want to look like I was being judgmental?
Well, right now, I'm incredibly thankful that God helped me make that decision, because it is painfully (and yes, I do mean that it pains me) obvious that the God and Bible you believe in are very different than the God and Bible I trust.
A question posed to you, Pat Robertson this week:
"I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore, and, as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he's started seeing another woman. He says that he should be allowed to see other people, because his wife as he knows her is gone...I'm not quite sure what to tell him. Please help."
Your, Pat Robertson's response:
"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again...to make sure she has custodial care and somebody looking after her. If you respect that vow...you say until death do us part...this is a kind of death."
Pat, I am thankful that I know better than to listen to your words and "logic" about marriage and death. I am thankful that I know the Bible and the heart of God well enough to believe with everything I am that God can do amazingly beautiful things in a marriage even when one person is sick and on the brink of death.
Your response to this person comes from a heart that either does not know God's Word or refuses to trust His Word when it doesn't make sense to our sinful hearts and minds. I am disappointed but not surprised. I am a sinful man with an incredibly sinful heart, and I know that I allow my human brain to rebel against the commands and promises of God far too often as well. I know, looking around me, in my church and in the Church (universal) that we all allow Satan to trick us with human logic into rebelling against God's perfect plan.
But, I also know that marriage is sacred, that God hates divorce, and that those who honor their marriage vows despite the difficulties that come with age and poor health are being fully obedient to His Word. I have never once considered leaving my wife because of her illness, not because I am a "good" person, but because I know that God desires that I remain committed to my vows, and because I trust that He works all things together for good for those who love Him and are called according to His purposes.
I don't expect you or the person who asked you that question to ever read this, and I certainly don't expect that my words would ever change your heart or mind about this. But, I want the world to know that there is another way, that those who stay committed to their vows even in the difficult times can come through it with miracles and incredible blessings. The love I have for my wife today is beyond anything I ever experienced during the time we spent together before she became so sick.
Pat Robertson, I love you in Christ, but you are flat out wrong. I know this because the Bible tells me so. My wife would tell you the same thing.
Tuesday, September 13, 2011
Gwyneth is three and a half, and with our Great Strides Walk for Cystic Fibrosis coming up this Saturday, we thought she was old enough to begin helping us raise money to find a cure for CF. Please, take the time to check out Gwyneth's Great Strides Page and consider donating to help us find a cure for CF!!!
Sunday, September 11, 2011
Saturday, September 10, 2011
Thursday, September 8, 2011
For those interested in following CF Education Day this Saturday via the web, we use a free (advertising-funded) website that is not affiliated with Duke to carry the broadcast. The web link is http://www.justin.tv/dukecfcenter and it will be live on Saturday when the speakers are presenting. There is also a text chat window where people at home can type questions. One of our CF center staff will be monitoring the chat and can read the questions aloud when the presenters take questions.
Users at home do not need an account log in to Justin.tv. The chat is open to "anonymous" users, and they will appear as "justintv42738965" or some combination of numbers. This is beneficial in protecting our patients' privacy, but the risk is that sometimes random users (not affiliated with our CF center) will drop by and post in our chat area.
With that in mind, and knowing that we can't control what ads are presented by the service, I do recommend parental guidance if families are watching at home. I would hate for a child to see something that their parents would not want them to view (violent video game ad or similar). It is possible to view the video in fullscreen mode and this may limit the intrusiveness of advertisements.
Sunday, August 28, 2011
Wednesday, August 24, 2011
Sunday, August 21, 2011
Gwyneth's new glasses arrived yesterday! Her prescription changed, and we were told that it would be cheaper to purchase new frames than to change the lenses. So, we let her pick out the color. We decided to try rectangle frames this time, and she picked the purple, even over the same pink color as her old frames. We love them! The color is actually a darker purple than what showed up in this photo, so I'll try to take a better photo for you later.
Monday, August 8, 2011
We will be speaking around 1pm. I will post more information about the other speakers when I receive it.
You are welcome to come for the entire event or just to hear us speak, but they do want you to RSVP. As soon as I have the RSVP info, I will share it here. You can also "attend" the Facebook Event and invite others who might be interested.
Tuesday, August 2, 2011
Monday, August 1, 2011
12:50 - Tricia is being moved to her room. She got her wish to stay on the CF floor. Should see plenty of familiar faces! I still haven't seen her...
9:40 - Surgery went well. Waiting to see her.
9:35am - Tricia is out of surgery. Waiting for the consult with the surgeon.
8:00am - Surgery just began.
7:30am - They just rolled Tricia into the OR. Should be about 2.5 hours.
We report to the hospital at 5:30am (who picks these times?!?!) for a 7:30am surgery. I'll update on this post throughout the day, although we don't expect anything very exciting to happen. Thanks for your prayers!
Tuesday, July 26, 2011
Thursday, July 21, 2011
I've been a huge and loyal Apple customer for 6 years...never once have I had any major issues. Today, I upgraded to the new Apple OS X Lion operating system on my very new work computer. After installing the $29 upgrade, I discovered that none of my Microsoft Office 2004 applications are compatible with Lion.
95% of my work is done using these applications: Word, PowerPoint, Entourage (email), Excel, which means, my nearly brand new Apple computer is now useless to me unless I either want to spend the money to purchase an external hard drive and reinstall OSX Snow Leopard or if I want to spend another $150 for the newest version of the Office suite.
I thought I had done my research, but not once did I read any kind of warning from Apple telling me these issues would take place if I went ahead with the upgrade (yes, there are warnings out there, but I missed them all and none of them were communicated to me during the upgrade process). Apple customer no-service was completely unwilling to take responsibility or to offer me any direct help to resolve this issue. To say I'm disappointed in Apple (as a huge and loyal Apple customer) is an incredible understatement.
All of that to say, maybe this short blog post will keep one of you from making this same mistake and losing faith in Apple.
Now, here's a photo of Gwyneth that makes me feel happy and helps me remember that even Apple can't steal my joy.
Friday, June 24, 2011
Gwyneth had her first visit with a new doctor. She is now officially diagnosed with mild cerebral palsy, which we had assumed for a now. She continues to wear her AFO (ankle braces), but is making great progress. She is falling less and less while walking on her own, and is now able to step up and down short steps.
We're also making plans for Gwyneth to have another dual surgery...eye muscle surgery for her stabismus which has returned, and another ear tube placement as her first set has recently fallen out and she is continuing to experience ear infections. Hopefully these can both happen on the same day in the same ER as before.
While we were at Duke waiting for mommy to get done with her appointments, Gwyneth and I walked over the the gardens for a few shots...
Monday, June 13, 2011
Monday, May 23, 2011
Wednesday, May 18, 2011
This little girl is moving on up from a crib to a big girl bed tonight! Why tonight? Because I finally have time this evening to convert her crib AND I get to sleep in tomorrow in case she decides it's not as much fun as we've made it out to be.
Saturday, May 14, 2011
Monday, April 11, 2011
Wednesday, April 6, 2011
After going all day without a nap, Gwyneth fell asleep a few minutes after taking these shots, and she slept right through the fireworks.