World's Shortest Running Trail

It's tough to see, but this woman was "running" forwards for 10 feet and then backwards for 10 feet and it went on forever and ever. To each his or her own I guess.

Thankful Thursday: Smiles and FDA

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for smiles. Mckenna now smiles on command. She has this adorable little face that she makes that a little resembles a smile, and a little resembles a gremlin. I LOVE IT!

I'm thankful for sweet potatoes. THEY ARE SOOO GOOD!! There really isn't much to say beyond if you haven't had sweet potatoes before, TRY THEM!!

I'm thankful for early bedtimes. This week Ronnie and I got into bed a few nights SUPER early and got really good nights' sleep. It is incredible what a difference a good, long night's sleep can make.

Ronnie's List:

I'm thankful for an inside look of the goings-on at the FDA. I was invited to say a few words about the importance of new drugs for the CF community, and thoroughly enjoyed my time doing so. It's pretty cool to share your opinion with people who hold so much power in their vote to recommend a new drug or it. Cool and scary (that they have so much power).

I'm thankful Mckenna's heartmelts. She has quite a few of them, but I'd say her latest one is her smile. She will now smile when I ask her to and it may be the cutest thing on earth. Sure is getting tougher and tougher to say "no" ;)

I'm thankful for sports. I was asked today what sports I liked and my answer was, "Anything with competition and a ball makes it even better." I just love watching any and all sports at anytime. I like that I don't have to focus on it and can be doing other things while checking in on the game, and I love the games that I'm totally into and can't step away from the TV!

So, what are you thankful for today?

A Tough Choice

Hey Ronnie, I know we've never met, but I have a lot of respect for you and no one better to turn to who could give me some advice. My son [Name Withheld] is 18... the magic age where I no longer have control. His PFTs have been really low for a couple months now, 65% today. Docs think we've mucked around enough and really want to admit him for a clean out. He will not give his consent because it will mean missing the first game of basketball season. Basketball is [Name Withheld] love and this is his last season with this group of boys that have played together since 2nd grade. I know this is very important to him, but waiting to treat can mean perminent lung damage.... I know you know the routine. I was hoping you had some words of wisdom that would help me help him. He has always been a very compliant kid, and knows his disease quite well. Sometimes there is resistance, but he usually makes the best decision in the end. This time Im not so sure. What is it like to be an 18yr old boy with CF? As that boy once yourself, what would you have wanted from your mother... should I push, or let him makes a dicision that could impact his health for years to come? Thanks for listening

......

That's a tough one for sure...

I can only think to give you advice through a story. My freshman year of high school, I earned the spot of a starting running back during my pre-season workouts. I worked hard all summer and leading up to the season all I cared about was football. I then had a check-up about 8 days before the opening game - my lung function had dropped. I was given a "choice" by my docs and by my mom - go in now for a short stay, work my butt off and be ready to go for the second game of the season, or delay the stay, possibly get sicker and end up being forced to go in and miss 2, 3, 4 games or more. I say "choice" because my mom had a good way of getting me to choose what she ultimately wanted most of the time. I think it was a healthy balance of love and fear that I had for her that was the trick 

I chose to go into the hospital and I ended up missing the first game of the year. The coach stood behind the decision of of putting my health first and held my starting spot for me upon my return. I worked my tail off in the hospital and ended up making it a very short stay. My lung function shot up and I felt great. The dangling carrot of that second game was out there, and for me, it worked! I went on to play in every other game that year.

Looking back on my regrets from when I was that age, I never once think about that decision. What I do think about are the times that I didn't put my health first. I have the "what-ifs" and "if only I would haves" that will pop up from time to time.

On the continuum of time, the start of a basketball season is but a speck of dust. Admittedly, it looks like a mountain range to your son, and that is completely understandable. I couldn't fault him for either decision that he would make as it's much easier to be a Monday morning quarterback sitting here today 

I can tell you this, the people in my life now are VERY thankful for the times that I put my health first. When I compare that first football game of the season to my wife's kiss or my daughter's snuggle, it really puts into perspective how insignificant the game, the sport and that time really was.

At 18, you're not only making decisions that will affect your future, but the future and happiness of others.

So, to finally answer your question...As a son, I always expected my mom to be loving, respectful and honest. Kids are always more open and responsive when their parents show empathy and not "I'm the boss" in this situation. (With that said, may I remind you that you are in fact the boss if he still lives under your roof and you're paying the bills).

Hope that little story helped prepare you for your conversation with him and please let me know how it turns out. If there is any other question I can answer or anything else I can do, please let me know!!

Potty Troubles and Triumphs

There are two times it's ok to discuss potty on this blog. For some unknown reason, in the CF community bodily functions are perfectly ok to share, so Ronnie's potty practices are fair game. The other, is Mckenna's because, well, she's a toddler. You're in luck, and today is not about a grown man's toilet troubles and triumphs, but instead about my sweet, innocent and far-less-stinky daughter's.

So a couple weeks ago Mckenna started running to the bathroom door and holding her diaper while making grunting sounds. I ignored it the first time or two thinking she was just being silly. When she kept it up, however, I decided to go ahead and toss her on the potty to see what she'd do. Sure enough, she pooped. I was certain it was a fluke, but praised her and told her what a big girl she was. She was as proud as a peacock. She admired it sitting there and, strangely, pointed and grunted at it (HA! I wish I got the grunt/screams at it on tape. It was like she was mad at it!). Much to my surprise, she did it another time that day, so I decided to keep rolling with it.

I hadn't given any thought to potty training since she is still "young" and not of conventional, American potty training age. How would I do it? Big potty vs. kid potty? Do I use a method? What does it look like in terms of timeline? It wasn't on my radar, so I was totally lost. I started googling (that is my method of seeking parenting "advice"..hehe) and found just about nothing helpful on potty training a 15-month old who was initiating the process. So I just took a few tidbits here and there from the different "techniques" I could find and went with it.

Pretty much I put her on the potty when she gets up and before she goes to sleep for naps and bedtime, as well as before and after we leave the house to go somewhere, and then I just pick random times and sit her on there to see if she will go (if it has been awhile). I tried putting her on more frequently at set intervals, but then she stopped telling me as much, so I just decide to go a bit more casual and she seems to go better with that. After all, she was the one driving the process initially, so I decided to back off a bit and let her continue to drive.

Well turns out she must have been ready because she's doing great. Ever since we started 11 days ago, I've only changed 2 poops (apparently she was really ready to do that on a potty) and she's now about 50/50 for pee. I am so proud of her!

It has been a good learning experience for me too. I've learned that she is very internally motivated, at least for this and I hope for other accomplishments in life as well. I started with a sticker chart and occasional little treats for her. But after a couple days of the sticker chart she was over it, and now I'm left doing it on my own. It's a bit pathetic, but I feel REALLY good to see all those stickers on the chart after what feels like a full day spent in a bathroom...so even though she's not into it anymore, I still do it! HA! As for the treat, I decided I didn't want to go down that path and axed them. She didn't even notice.

It hasn't been all rainbows and butterflies, we are still dealing with some sleep disturbances as a result...you know, the kind that leave you throwing your hands in the air and wondering what the heck you do to "fix" the problem. She was getting up early in the morning by just 30-45 minutes, which I don't mind. I get it. She learned to go potty on the potty. She now poops when she first gets up. So she wakes and thinks, alright, let's get this show on the road. But then last night, she was up at 3:30am AND DIDN'T GO BACK TO SLEEP. 3:30am!?! I don't so much mind for my sake and missing out on a little sleep. But I know that a lack of sleep makes her one cranky kid, and I don't want that for any of us. Not to mention I always feel it's my job to find "the fix" and so it stresses me out to no end. I've tried googling for answers (again, I wasn't kidding when I said it's my go to!) but couldn't find much that was practical for a 15-month old.

We will see how tonight goes. Hopefully last night was just a fluke and she will sleep like a baby (HA! What baby actually "sleeps like a baby'?!) tonight. But in case it wasn't...please feel free to post advice/suggestions.

Here's to another chapter in our little love's life...big girl underwear and bedwetting are in her fast approaching future :)