
Saturday, June 12, 2010
The First Wedding Pic Is In!!!

Thursday, June 10, 2010
Flash Me Friday- Open the Door





Inspiring Story from "Jail"
by Marina FinnellSo I've been in the hospital for 11 days now and I am finally getting to go home tomorrow! Well, that's the plan anyways, let's hope that's still the case when tomorrow comes! Oddly enough though, this hospital stay seems like it has gone by quicker than most others do. I am usually in the hospital (or as I like to sometimes refer to it, as "jail" haha) for at least 2 full weeks, but this time, i have been working my butt off like a crazy lady with all of my treatments and exercise and meds that my PFT's have gone through the roof!!!! =] I am sooo excited to be able to make this stay a short one and to get on to enjoying my last summer before I start college in August!!!So when I was admitted to "jail" (hehe) 11 days ago, my PFT's were not so hot, they were below 50% :/ I realize that there are plenty more CFer's out there that are living their daily lives even lower than that, but everyone's story and their CF is different. So I don't want to sound "braggish" or annoying to other people reading this, which is why people write their Own blogs and what not, because it is about them. haha. Anyways, a 50% PFT is really bad for me, it's the lowest I have ever been and if you think about it, it's like only being able to breath with one lung. Blah. The Docs weren't too happy with this number oddly enough haha. So after getting yet another Reality check this year (as I am growing up and moving on in life, I have been getting a lot of reality checks with my CF this last year haha) I have been working my little heart out in here and doing my treatments and meds etc. like a crazy person and I realized, they seriously ALL make a huge difference! After just 4 days of constant treatments, IV meds, and determination, I got my PFT's up from 50% to 67% ! That's huge for me! =]
The next day, I had a bronchoscopy and my first sinus surgery done! Wow, did those two make a difference!!! I feel AWESOME! They sure did clean me out! :) After 9 days of being in the hospital and 4 days after my procedures, my PFT's were up from 50%, to 67%, to now 76% ! :) Whooo! 76% is higher than my numbers have been in at least 6 or 7 years!!! My baseline is usually only around 65% too so I've definitely made huge progress!
Are you ready for the BEST news of all?!?!?! Today, my 11th day in here, my PFT's are up to 79%!!!! So close to an amazing 80, but I will most definitely accept a 79% and my Docs will gladly take them as well! But the hard work and dedication to my CF and my body does not stop here! As I am preparing to go off to college here soon in a ocuple months, this last year and these last couple weeks alone, have been great experiences for me! I now have been able to see for myself what I am truly capable of doing on my own! =]
It's all just so exciting! I had to share this first experience of becoming an adult and dealing with CF all on my own without mommy dictating everything I do haha! Well, RT just walked in and it's time for my last evening treatment of this hospital stay!!! =] Whoo! Approximately 12 more hours and I'm FREE again!!! :)


Wednesday, June 9, 2010
Carry You Through Life...



Tuesday, June 8, 2010
My Second Near-Death Experience



Monday, June 7, 2010
Married Life Rocks My Socks



Sunday, June 6, 2010
An Important Purchase!!!


Saturday, June 5, 2010
Awkward Christmas Gift????



Friday, June 4, 2010
Wisdom from Ronnie's Mom
Dear "Ronnie's mom,"
Thank you for letting Ronnie post this! I would not only like to hear from you more often, I would thrive on it!!! My 18-month-old son has CF. My husband and I want to raise him to be a strong, confident, happy, faithful man of God... pretty much just like your son! Reading Ronnie (and Mandi's) blogs, watching the YouTube posts, and being a part of Cystic Life gives our family so much hope and so much joy. Thank you for blazing a trail for CF moms that follow in your footsteps. The openness with which your family shares their hearts is an incredible ministry! God bless you!
Sincerely,
Name Withheld
Dear Name Withheld:
Thank you for your kind words! Ronnie is an amazing son and I couldn't be more proud. And then, he married an incredible young lady giving me an amazing daughter. My first one! They make a dynamic duo!
I have heard that CF parents would like to hear about how I parented Ronnie, but I truly struggle with that. Really, I'm no expert! I raised Ronnie, much like I was raised, but with a twist. CF was never the center piece. It was worked into our lives as routine. Absolutely, when Ronnie was sick it became top priority to get him better, but then we moved on. I remember a Mom saying to me (who had lost her two young daughters to CF) "You live everyday like it's your last, don't you?" Out of respect, I said nothing, because I had not felt her grief. But I thought to myself, "No, I live everyday looking forward to the next." I must tell you, Ronnie was at times a very difficult child, but not because of the CF. Because he was Ronnie! A resourceful, quick-witted, gregarious young man who never took "no" for an answer. It was contagious! If Ronnie thought he could do it...who were we to stop him?
My parenting style was very "matter of fact!" I didn't beat around the bush. Aerosols and treatments...in those days...hand pounds (P&D), were part of the daily routine. P&D was like brushing your teeth. It's just what we did! When he was young I'd play games with him during P&D. I pounded rhythms like "Three Blind Mice" or "Old McDonald" and he would guess. "I Spy" was another game. As he got older, that time together was used to talk about family, current events, school, etc. Certainly there were many times we talked about CF and I was straight up honest (age appropriate). Were there times when we fought about treatments? Absolutely! Especially the teenage years. I tried reverse psychology, but Ronnie saw right through it! I made deals...want to go out with friends (squeeze in an early treatment), want to miss a treatment (extra treatment the next day). And sometimes...I just got mad at him! I remember asking the doctor when he was in his late teens and it was such a struggle. "When do they wake up?"
There is one area of CF I feel is the most important. Give your child their voice! As soon as Ronnie was able, I encouraged him to communicate with his doctors. Ronnie knew exactly how he was feeling about his breathing, mucus, coughing medicines, poops, etc. Why should I put words in his mouth? Now, that said, knowing Ronnie and some of the crazy things he could come up with...there were times...I must admit...that I'd communicate to the doctor with a brief little headshake, a stare, or a wink, but Ronnie didn't know that. I think that's part of the reason why Ronnie is so outspoken today, not hesitating to give his opinions, likes and dislikes, needs, etc. Empower them and they will take ownership.
I wish you the very, very best. Enjoy! 18months old...such a wonderful age.
Thanks for letting me ramble.
Ronnie's Mom


Thursday, June 3, 2010
First Video on the Way to Cancun!!!
Wednesday, June 2, 2010
Random Wedding Pictures
Tuesday, June 1, 2010
Our First Dance as Man and Wife


Monday, May 31, 2010
Saturday, May 29, 2010
Friday, May 28, 2010
Mooning My Honey- Day 4

