> Tricia has not contacted her donor's family yet. The transplant team suggests you wait about a year before writing the initial letter, so hopefully it will be something that we do soon. Depending on the response (or lack of), we may or may not share anything with the public about our possible correspondence with the donor's family.
> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.
> Yes, I finished "The Story Of Us" a LONG time ago...
> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).
> Janet...you can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.
> Megan...your yellow ae sweatshirt is in our living room.
> Here is the meaning behind Gwyneth's name. We did have a boy name...
> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.
> Cookies are my weakness (along with ice cream)...it's hard to say what is my favorite, but chocolate chip might be it.
> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.
> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.
> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).
> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).
> This is my favorite song at the moment.
> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.
> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.
> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.
> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.
> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).
> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.
> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.
> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.
> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".
> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.
> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.
> Vacation...that is something we're currently making plans for...stayed tuned...
> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.
> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....
> My mom's hand healed up very well...it's not perfect, but nearly.
> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.
> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").
> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.
Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or concerned...as we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!
Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.
We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.
> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.
Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.