Friday, January 18, 2013

Exercise Starts Early!!

Thursday, January 17, 2013

Thankful Thursday: Spunk & RC Choppers

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 my parents. They have been the BIGGEST help with Ronnie in for a tune-up. I cannot say enough about how much help they've provided.

I'm thankful for a healthy 15 month checkup. Mckenna had her 15 month check up this morning and passed with flying colors. She's still our little peanut at just 18lbs 9oz and 28.75 inches tall, but she's healthy as can be and we are so thankful for that!!

I'm thankful for spunk and happiness. Mckenna is such a delight. She is full of energy and is a happy kid. She is such a blessing.

I am thankful Ronnie is getting better. His numbers are on the rise and hopefully will be back up to par in no time!! I'm thankful he works so hard and is willing to "do some time" to be his best for us!!!

Ronnie's List:

I'm thankful for remote controlled helicopters. My father-in-law got me a late Christmas/kill some time in the Hole gift in the form of an RC chopper. Creating different challenges like landing the chopper on top of my IV pole provides something to do besides slave away on my computer or watch TV :)

I'm thankful for understanding docs. Since the transition to the adult team here at UMC, they have gotten better and better with each stay. They are definitely putting more faith in me and starting to respect the "expertise" of my disease that I bring to the table. The transition was a little rocky at first, but I'm thankful that it's gotten better and better.

I'm thankful for the iPhone. The iPhone provides another great way to kill time. From games to FaceTime to searching for the latest and greatest apps, I've spent quite a bit of time on my phone. How did I ever survive without one?? ;)

So, what are you thankful for today?

Tuesday, January 15, 2013

Hemoptysis Episode and Children


I posted some questions on your blog a few weeks ago about how you manage having a baby with all the CF stuff. Thanks again for your response. : )

Here's another question: are you ever concerned about Mckenna's safety or your safety if you have a hemoptysis episode? For instance, if you were alone with her and you had a bad bleed? I have had periodic hemoptysis for nearly 20 years and had an embolization last year, but I still have random bleeds. For instance, last night I coughed up 1/4 cup, but I have no other symptoms of being sick right now. My husband and I have been discussing adopting a baby, but that does seem like a pretty big concern to me.

In addition, here's one more question. Do you feel safe traveling internationally if you are prone to bleeding? I have a lot of anxiety about it and don't really go anywhere too exotic for fear of an emergency. I saw that you went to Singapore, so I was wondering how you made that work.

If you could shed some light on how you deal with this scary and frustrating CF problem, I would really appreciate it. : )



I hope your Christmas season was a good one and that you are enjoying the new year thus far :)

To be honest, I've never been very concerned about having a massive hemoptysis and being alone with Mckenna. If it happens, it happens. There is always a neighbor or 911.

Bleeding on a flight is always a slight concern, but I do my best to avoid sudden movements as to control the already increased pressure in my lungs and I sit in the aisle. I used to prefer the window, but now I like access to the bathroom if and when I have a bleed. 

Most places have decent enough healthcare if you were to have an emergency. Singapore has top notch healthcare. I've also however spent a lot of time in China and they have no clue what CF is :)

Here's probably the best way to answer your question - I don't let my health dictate what I do or do not do. If I want to do something, I put myself in the best position to succeed, and I do it. I'm not going to let the chance of having a massive hemoptysis stop me from spending time alone with my daughter, or pursuing a family in the first place. I won't let the possibility of a bleed prevent me from seeing some of the most beautiful places in the world.

As long as I'm putting myself in the best position to succeed and working my butt off every day to be healthy, I'll reward myself with life!! :)

Hope that helps.

Monday, January 14, 2013

A Talking Machine

Mckenna is a talking machine these days. It is pretty incredible. It seems like most days she learns at least one new word, sometimes more. She has always been a chatty cathy - even when she's not using words, she's rambling in Mckennaese. But in the last few weeks, her vocabulary seems to be exploding.  She knows names, body parts, foods, verbs, prepositions, adjectives, you name it. Some of my favorite recent words are:

Gigi - Gigi is the name of my mom's mom (my Grammy). But Mckenna just learned the word when my parents good friends came into town and the wife, Wendy, wanted to try on her choice "grandma name"for size. So we told Mckenna her name was Gigi. Well you hear Mckenna searching around their house and ours for her beloved Gigi. 

Bird - Or "buhhd" to Mckenna. I'm not sure where she picked up the word. But I started noticing it when we were outside and she pointed to a bird feeder and said "buhhd". Perhaps Papi taught her the word on one of their many exploratory walks around the house together.

Please - "PUWEEEZ". Mckenna pulls this one out ALL the time now. She is still learning that "please" is polite, but it's not then a given that you get it. "That." "No." "PUWEEEEZ." "Up." "No." "PUWEEEEZ." "No, honey. Good job. That's polite, but it doesn't mean you'll get your way."....that's what my days look like now.

Medicine - "Memin" - This one really melted my heart. Mckenna touched Ronnie's PICC line and he told her not to, that it was "ouchy for Daddy." He then told her what this PICC was for, "it gives daddy medicine..." he said at some point. A couple minutes later he said, "Mckenna, where doesn't daddy's medicine go?" And Mckenna pointed at his PICC and said, "Memin." Ahh so sweet, Dr. Sharpe in the making.

Rio - With my parents recently moving back, Mckenna quickly got to know their dog, Rio. They have a love/hate relationship. She loves him. Loves to see him. Call for him. Bring him his toys. But Rio is a bit of a nut job! He moves fast. He often knocks her over as he runs past. He gives her lots of kisses, which she likes about 50% of the time. And even for all the complexities in their relationship, there is one this for sure...Mckenna LOVES to say "RIO!" She wanders around looking for him all the time. "Rio!" "RIO!" She calls. It is so cute.

And last, but CERTAINLY not least (in fact, it's the BEST one)...

I love you - "La lou" or "Ah La lou" - You want to talk about a heart melter!! "Please" doesn't mean she will get her way, but boy if she knew what "I love you" can do! Ha! She said it for the first time to Ronnie. He wasn't here and we were FaceTiming together. Before getting off the phone Ronnie said, "Mckenna, I love you," and clear as day, "La lou" she said back. I watched Ronnie melt to mush.

Our little Chatty Cathy is going to give us a real earful before we know it, I think. She comes from a long line of talkers (her Gigi, Nana, and Mommy are all talkers). So she comes by it honestly. As of now, I'm just enjoying hearing more and more of what's going on in her little mind. She is such a fun, goofy, vivacious, little spark plug! I love it!!