Thursday, September 30, 2010


So I really do promise that this blog won't be a daily life really isn't that interesting that anyone would want to hear from me that often!! This has just been a full week. With road trips, doctor visits and birthdays, I apparently have a lot to purge! I want to start this post by giving everyone a quick look into a 'typical day' of someone with CF...(this was taken directly from

Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there is no “typical” day. However, each day most people with CF:
- Take pancreatic enzyme supplement capsules with every meal and most snacks (even babies who are breastfeeding may need to take enzymes).
- Take multi-vitamins.
- Do some form of airway clearance at least once and sometimes up to four or more times a day.
- Take aerosolized medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.

Sounds easy, right? *INSERT LOUD BUZZER SOUND HERE* Nope. Not at all. Some kids with CF can take upwards of 50 pills a day and have to take hours out of their busy little lifes to sit and do treatments EVERY DAY. It sucks. CF sucks. Every 3 months (and that's if they are 'healthy'), CF'ers visit a care center for regular appointments. These appointments take us 3-4 hours, depending on whether or not lab tests and x-rays need to be taken. You meet with social workers, dieticians, respiratory therapists, pulmonologists, pharmacists, and CF specialists. Your room is literally a revolving door the entire time. At each appointment a throat culture is done to make sure there are no icky bugs growing in their little lungs. You can not imagine the anxiety that races through my body when that 241 phone number shows up on my caller ID after our appointments to tell me the results of those cultures. Unfortunately, in Ry's short little life we have already had 3 of those calls start with the words "I'm so sorry to tell you this, but..." Pseudomonas is one of those nasty little bugs that you are coached from Day 1 to watch out for. 3 times Rylan has cultured positive for pseudomonas. Pseudomonas can kiss my @ss. I.HATE.IT. Pseudomonas is an awful bacteria that basically settles into the thick mucus trapped in her lungs. And once it sets up house, it's pretty hard to get rid of. Here is a fun little quote I stumbled across online, 'Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF.' Yep. I.HATE.CF.

August 31st was one of 'those calls'. Bless our pediatrician's heart. He sounded more upset that I was. So, on September 1st we started the 1st day of the pseudomonas regime. 28 days of HARDCORE antibiotics and increased vest treatments.

Here's Ry in her fills with air and shakes violently to help break up that mucus. And STILL always smiling.

We do 30 minutes of vest in the morning along with an Albuterol nebulizer (opens up the airways) and then when the vest is done we start the TOBI nebulizer (antibiotic to kill the pseudomonas). This takes about 55 minutes. Then she takes the Cipro (oral antibiotic to kill the pseudomonas). Twenty minutes after lunch comes another 30 minute vest treatment with the Albuterol nebulizer again. Later after dinner and another dose of the Cipro comes a 3rd vest treatment. Again we give her another Albuterol neb, followed by a Pulmozyme neb (loosens the mucus), and then another round of TOBI. This last treatment takes another 55 minutes. Some days if we have time and she is up for it, we squeeze in a 4th vest treatment just for good measure. Between all of that and sterilizing everything, you are looking at 3-3.5 hours of stuff each day. Have I mentionned that Rylan is 2?? Yeah. That doesn't all go over so good...

On to the good news, WE ARE DONE with that round of meds. So now we wait...we wait to see if and when the pseudomonas rears it's ugly little head again. Our CF center here in town and the CF center at the University of Minnesota have each given us different options on further treatments and how to move forward. It's enough to make your head swim. Since there is no 'black and white' when it comes to CF, most times you just have to pick a path and travel down it to see if it works. That's a heavy burden to carry when you're the one picking the path FOR someone else. Especially when that someone else is your baby. I don't want to make a wrong choice. My husband sure doesn't want to make a wrong choice. So, for now we wait. We have 28 days to decide which clinic to listen to and which path to travel down.

Little Miss Pumpkin Muffin opening up her Olivia the Pig birthday present in the car. Her exact quote, "I lub you Olibia"

Wednesday, September 29, 2010

Happy Birthday Sweet Little Princess!!

So I’ve decided that last font hurt my eyes, so I promise before the next post I’ll tinker around a bit and find something fun to look at, yet easy on the eyeballs...***we have a friend that had lasik eye surgery and when she was recovering in the office directly afterwards, kept telling the nurse ‘my balls itch’. She didn’t quite realize what she was saying until the nurse starting giggling. Ha! I so love that story...everytime I see the word 'eyeballs', that's what I think of!***

Two years ago today, my sweet little Rylan came into our world in a fit of high pitched squeals and screams...little did I know our house would sound much the same 2 years later! Barry, being the diligent husband he is, was holding a cold washcloth on my forehead the entire time (most likely to prevent having to watch anything). I remember the second the nurses took her over to the incubater to get her all bundled up, covering my eyes with that washcloth. Everyone in the room kept urging me to look over at her but I just couldn't bring myself to do it. Looking back, the obvious explanation would be that I was remembering the delivery of our son...Kohen was born 2 months early and was in the hospital for 46 days. His daddy never got to 'cut the cord' and his mommy didn't get to hold him until he was 9 days old. So, maybe this time around I was just scared? Scared that if I looked at her, I would see something that would make them wisk her away from me and start poking and prodding her and giving us scary outcome after scary outcome?? Or maybe on some weird, deep, subconscious level, I knew. I knew that she was 'different'. Different in the most beautiful of ways. 'Different' in a way that I will never be able to describe. Different in a way that when I look into her eyes, I see an old soul. I see a soul that has some sort of secret to share. A secret that SO many people in this world just don't get. I don't see 'chronic' or 'progressive', or even 'CF'. I see something I wish I had. I see courage and optimism. I see unwaivering love. I see someone that may have a 'label', but will most definitely NEVER let that 'label' define them. I see my baby girl. I see MY mom, I see my husband's mom, I see Barry and I and the love we share. I see SO many things that I wish I could put into better words...but most of all, I see my Ry Ry. Happy birthday little princess. Here's to many, many, MANY more magical birthdays!!! Mommy LOVES YOU!!!

Tuesday, September 28, 2010

Here it is!!!

So here it is bloggyland! My 1st official post. I have been playing with the look/layout and cutesy little fonts for this thing for so long, and just now finally getting around to actually posting something. Can you say COLD FEET??! Call it nerves, procrastination, or a combination of the two (I'm going with the latter...), I've finally taken the leap! This blog (much like my life) can best be described as a work-in-progress, so bear with me please. I am not going to promise to be the best writer on the block. Heck, I just had to google whether to spell 'bear', bare or bear??! (Hey! Would YOU have known which to use??) So to all you English teachers that may stumble across this blog, you've been warned...But really, my true intentions for starting this blog aren't to impress, but to hopefully educate and enlighten the few brave souls that choose to follow it. (That, and by purging all my thoughts out on this poor keyboard, I can only hope to somehow clear my head on a regular basis!) AND, if I can make just one more person a supporter of this cause, then MISSION ACCOMPLISHED!!