tag:blogger.com,1999:blog-22751386571299929722024-03-13T08:43:05.496-07:00Making Strides To Cure FoundCystic Fibrosis Awareness, Fundraising, and HopeAliciahttp://www.blogger.com/profile/14286911362296016524noreply@blogger.comBlogger147125tag:blogger.com,1999:blog-2275138657129992972.post-50162003771473575462016-05-07T18:41:00.003-07:002016-05-07T18:44:04.065-07:002016 Great Strides Walk!
The 2016 Great Strides Walk in Jacksonville is over and we are so glad we went. The Jacksonville walk is probably the smallest walk we've been a part of, but it was really enjoyable.
Great Strides was held at the University of North Florida campus and let me tell you, it's just beautiful. Definitely makes me want to retire and go back to school! I'll probably never do it, but I'd like to do The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com1tag:blogger.com,1999:blog-2275138657129992972.post-73929623556740670092014-12-02T18:59:00.000-08:002014-12-02T18:59:14.251-08:00Subaru Fall Classic Half Marathon Report
I run long distances for several reasons. For starters, it's something not everyone can or would want to do, so that allows me to be unique. Secondly, it's a way to at least combat my weight issues (which are legion on some days). Third, it hopefully lays a foundation for Samantha learning how to use running and other activities to help her health. That one really goes for all of our kids. The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-88449944631971445642014-11-30T03:44:00.000-08:002014-11-30T03:44:07.446-08:00Grateful on the last day of November
I love Christmas season. I’m currently basking in the warm
glow of our family Christmas tree on November 30th. The cat is
playing around the base of the tree and ventures up the middle every now and
again (we really have to stop that from happening). We haven’t put any gifts
under the tree yet, even though we’ve bought a few already. I’ve got a cup of
coffee on my side table next to me. It’s The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-50664404619153585262014-09-01T08:36:00.000-07:002014-09-01T08:36:15.555-07:00Adjusting to a new Climate
Alicia and I were talking this morning about what success would look like this week. Alicia mused that, "I'd be happy if we could just keep both kids in school and not home sick this week!" Clearly our standards aren't too high! LOL! But seriously, our kids are obviously still trying to adjust to the different climate in Florida.
In fact, we all are. I'm trying to train for a half marathon and The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-79783945837401127322014-06-25T06:30:00.001-07:002014-06-25T06:30:10.688-07:00Hospital Stay #3 Day 2
Movers will be here any moment, so I don't have too long to write, but I wanted to update friends and family members so you can know how Sam is doing. I also want to lay out a few frustrations so you can know how to pray for me (or tell me to calm down and get over it).
We finally got the PICC line in her around 12:30pm yesterday. As Sam was not actually scheduled for any procedures (because The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-65663226398830734412014-06-24T08:06:00.001-07:002014-06-24T08:06:10.290-07:00Back in the Hospital
Sam Waiting semi-patiently for her PICC line
I forgot to post about Sam being discharged from the hospital back in March, so this post looks a little funny if you don't know the background. She hasn't been in the hospital since March, when the last post was written. I just got so excited posting pictures on Facebook about her release last time that I forgot to make a blog post about it. The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-71431521392192795202014-03-28T05:01:00.003-07:002014-03-28T05:01:35.980-07:00Numbers don't Lie
Alicia and I were very confident going into yesterday's PFTs (Pulmonary Function Test). Samantha has been very literally bouncing off of the walls for the last few days and her oxygen saturation numbers have been at her baseline (95 or above) during the same time. The only thing we needed to have bounce back were the disappointing PFT numbers, which were at 80 on Monday, a saddening 20 points The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-23108510949692303302014-03-27T13:05:00.001-07:002014-03-28T05:01:57.918-07:00Mom's Intuition?
I need to start finding out how other hospitals work, but CFers at our hospital only do PFTs on Monday and Thursday. This can be such a bummer because if you don't hit that magical #, you know you're here for another 3 or 4 days before you can even test again! Well, Monday's pfts (see last post) revealed we would be here for a while, but Sam is doing SO well we were hopeful to see a Aliciahttp://www.blogger.com/profile/14286911362296016524noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-11718342589061298242014-03-26T05:30:00.003-07:002014-03-26T05:30:45.676-07:00Diagnosis Day PT II: PFTs
Last May when we were admitted, Dan and
I swapped almost every other night and that brought great comfort to
Sam so we’re doing that again for the most part. Due to the timing of day
commitments as the week goes on, it made the most sense for Dan to
stay the first night. I arrived around 11:30 or so this morning and they
had moved her pft time up to 12:45 from 1:40. Earlier the better to
me!The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-2558554448281576182014-03-25T20:46:00.001-07:002014-03-25T20:46:21.449-07:00Diagnosis Day
The title of this post is a little bit of a misnomer. The
fact is that it was about 36 hours or so before we were told everything about
Samantha’s situation. Most of that process was due to the need to do PFTs
(Pulmonary Function Test), something that Alicia will talk about in the next post.
Since this was the first time we had been admitted to a
hospital via an emergency room visit, I The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-53975345029023480962014-03-24T03:07:00.000-07:002014-03-24T04:22:47.913-07:00Sleepless in Milwaukee, PT II
I realize that I'm writing now not so much to report to the greater CF community about what's going on as I am to make sure I report everything that happens to Alicia without (a) calling her in the middle of the night and (b) not forgetting anything.
Since I went back to sleep around 2:00am, Sam has had her second antibiotic dose. That was around 3:30am. Periodically before that her O2 The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-31612836490382427362014-03-23T23:29:00.000-07:002014-03-23T23:29:10.025-07:00Sleepless in Milwaukee
The Bottom Line Up Front is that Samantha is back in the hospital. The real reason I'm writing this post is a bit more lengthy to explain. Bear with me.
Sam has been getting a little sicker over the last several days, and finally Alicia and I decided that we needed to get her seen. Honestly, I just assumed the ER staff would do a breathing treatment, see her O2 saturation stats come back to theThe Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-37974609604744467502013-06-14T04:05:00.000-07:002013-06-14T04:06:20.968-07:00Almost ABPA
One of the things that made Samantha's recent hospital stay so confusing and frustrating was the reason that she what got her in the hospital in the first place. Actually, to make it more concise, it was the lack of knowing what got her in the hospital that was confusing. At first, everyone thought it was a bad asthma attack that triggered what basically amounted to a fight between her lung's The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-19997447438704422612013-06-11T09:00:00.000-07:002013-06-11T09:00:05.668-07:00First hospital Stay Recap
We are extremely grateful at the Smith household. Not only has Samantha recovered very nicely from what put her in the hospital (we are still waiting on final results on that issue), but she has rebounded so well that her PFTs are higher than when she went in and she's gained over 5 pounds! Yes, things are good. It's amazing what two weeks of antibiotics and steroids will do for you.
Before The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-4666963154917370062013-05-20T13:52:00.002-07:002013-05-20T13:52:51.454-07:00Taking Advantage of a Hospital Stay
As you know, Sam is in the hospital and will probably be in for the next week or so (read about her stay here). My question for the CF community is: Do we do a big fundraising campaign to take advantage of the situation? Cystic Fibrosis is on the minds of all of our friends, family, coworkers...everyone...because of his hospitalization. We've had a few dry years as far as fundraising goes and The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-4037327781248983632013-05-18T08:17:00.001-07:002013-06-09T17:05:55.734-07:00Sam is in the Hospital
For those of you who aren't "friends" with me or Alicia on Facebook, Samantha is in the hospital in Milwaukee, WI, for a tuneup. I'm posting about it in more detail over at my personal blog: www.navychristian.org.
The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-10528567207939407872012-08-06T23:05:00.000-07:002012-08-06T23:05:00.146-07:00Chicago Marathon and Cystic Fibrosis
Dear friends of Samantha,As you know, our daughter Samantha has cystic fibrosis, a disease that, without a cure, will spell her early death at the age of 37. I hate that with a passion that has driven me to do some pretty crazy things…like sign up to run a marathon! Yep, you heard that right. I'm running a marathon! This year I'm signed up to run the Bank of America Chicago Marathon on October The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com1tag:blogger.com,1999:blog-2275138657129992972.post-25909964037541601162012-04-10T13:09:00.000-07:002012-04-10T13:09:23.658-07:00Hannah and the Chance for Cystic Fibrosis
For those of you who don't know, Alicia gave birth to our second daughter, Hannah Grace, on the 9th of April. You can read about her first day with us here. A few people have asked me in the run toward her birth about cystic fibrosis, and if we were concerned that Hannah may have it. Since the pediatrician just came in to discuss getting the newborn screening done, my mind has wondered back toThe Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-37143413298977007202012-03-29T10:00:00.000-07:002012-03-29T10:00:04.869-07:00Why I wear red Shoes
Ever since I started my training for my first half marathon back in 2009, I have worn running shoes that had at least a hint of red on them. The picture above is my newest pair that I purchased to start training for the Chicago Marathon for this October. I don't expect these shoes to last me until October since I'll be putting a lot of miles on them by that point, but they will get me through The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-11903025737013890632012-02-24T06:04:00.000-08:002012-02-24T06:04:00.367-08:00She's so Skinny!I was at Wal Mart with my daughter trying to spend her Christmas money a week ago or so. Her sno-globe had broken and she wanted a new one. Well, it was her money, so guess she can have one if she wanted it. Anyway, we were looking around the store when an older woman saw Sam and me walk by. I think Sam's size startled her.
She did a double take and said, “She's so skinny!”
“Yes she is,” I saidThe Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com3tag:blogger.com,1999:blog-2275138657129992972.post-86762690850456983992012-02-22T17:49:00.000-08:002012-02-22T17:49:19.551-08:00Chicago Marathon!
I'm running the Chicago Marathon! I'm so stinking excited. Not only am I running in one of the biggest races in America, but I'm getting to represent my favorite foundation while I'm doing it. So on October 7th, I'll be running 26.2 miles for the Cystic Fibrosis Foundation and my daughter, Samantha, who has cystic fibrosis.
Word will be coming forthwith on fundraising, training programs, and The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-35924167419548583922012-02-21T07:55:00.000-08:002012-02-21T07:55:00.852-08:00Hard to Stay FocusedLet me be frank for a moment. Samantha barely seems to have Cystic Fibrosis on most days. Since her adenoid/tonsil removal, which also involved a sinus surgery, she has had very few symptoms (cough, drainage, etc). Her weight is still frustrating, but she's energetic, healthy, and active. In short, most people wouldn't know that she had a disease that will kill her by the time she reaches the ageThe Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-177887657399002432012-01-10T07:53:00.000-08:002012-01-10T07:53:00.097-08:00Fired UpI hate Cystic Fibrosis.
A very haunting thing showed up on our doorstep Sunday Morning. We get the paper every Sunday. I'm accustomed (at least in football season) to promising myself I'll read it, but never getting around to it. Well, this weekend was the same, until Alicia saw what was on the front page. I didn't read the article right away because I saw how powerful it was and the effect it The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com2tag:blogger.com,1999:blog-2275138657129992972.post-77361034881410950282012-01-02T10:36:00.001-08:002012-01-02T12:41:50.066-08:00How to Approach the New YearI've been thinking a lot about cystic fibrosis lately, mostly because of a situation facing Samantha right now. Her weight has been a struggle since she was born. I think her previous doctor would talk to us about her weight at every visit. She was always too far under 50%. We moved here to North Chicago a little over a year ago and checked in with the wonderful CF team at Children's The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0tag:blogger.com,1999:blog-2275138657129992972.post-9654475231383153982011-10-09T08:33:00.000-07:002011-10-09T08:33:00.573-07:00Samantha's SurgerySamantha is still recovering from a 3-procedure surgery. None of it is anything new for you CFers. She had pretty much the usual gammut of things. They took her tonsils, her adinoids, and they did a sinus surgery, opening up her right side.
Since this was Samantha's first surgery, Alicia tried to prepare her as best as she could. She made a cake, and Timothy even read a book about tonsils!
&The Navy Christianhttp://www.blogger.com/profile/15116964729906856912noreply@blogger.com0