Pay it forward!!

Okay - first I want to say how much you have all already given to us - financially and emotionally throughout our battle against CF.  I love and cherish all of you.

BUT- I am still going to ask.

There is a family with 2 boys (the same age as my 2 boys) and they both have Cystic Fibrosis.  They have both been hospitalized this year.  Christian has been back in for 2 weeks this time awaiting surgery.  Their dad lost his job.  They have 1 car and the payment is months overdue.  If they don't make the payments they are going to lose that car.  They owe 1500.  I  believe that if we pull together we can help prevent this from happening.  I gave what I can today ----WILL YOU????

Check them out.  Her name is Jillian Koroskenyi and she is on facebook.  She has a paypal account at jillybean0319@hotmail.com  I know this sounds crazy but don't you think you could send a little cash their way?  I did and it felt great.  I hope it makes her sleep easier tonight.  Those hospital rooms are bad enough...then add your sweet baby who's sick and has a feeding tube and port...a port that came out last night and was awful.   She deals with this while her husband stays at home to care for their other son with Cystic Fibrosis.  Can you even imagine it?   

Lets make a difference.  Lets start one family at a time and make the world an easier place to be in. 

All my love and thanks!

Sometimes I see

Sometimes I get so accustomed to Cole having CF, I forget just what it truly changes for our family. People ask “how do you do it” or say “it must be so hard” and my usual response is “It just becomes normal. It’s your everyday routine and you stop remembering that it’s not normal.” There are still times though when it hits me just what it means and how our lives have been altered.


Today it was a phone call from my sister to me at work. She is watching the boys for me today and Cole had one of his VERY typical blowout “poop explosions”. As most know, CF poops are horridly foul. For Cole they are also very messy and “explode” out of his diaper onto anything in the same zip code at the time. As his mom, I can usually make it through without any gagging or cursing. Pj gags more often than not, but still handles it very calmly. Chaz doesn’t seem to be too bothered by any of it, and just uses the first wiff to inform us that Cole needs changed if he catches it before it makes itself our way. Nina and mom are so seasoned and in love with Cole, you would never even know it wasn’t normal. Anyway, the best course of action following one of these incidents is a bath for Cole and a nice scrubbing and disinfecting of everything in the vicinity of said explosion.


I have been so blessed that I can still go to work part time and I have my grandmother (and grandfather) to care for Cole. The only other baby sitter we really have is my mom. Jenna has started doing it more, but I believe this is her first true explosion experience. So, when she calls me today she just wants to let me know his poop consistency was off and they had had a blowout. We discussed what had caused it, if there is something we need to adjust or further look into and got off the phone. (Discussing Cole’s poop is a daily thing around our house. A note goes with him every morning letting Nina know what time he got up, had enzymes, ate, what he ate, if he’s pooped, how many times he’s pooped, what his poop was like, etc…you get the picture. Then I get the report back when I pick him up after work. We also talk about his treatments, how they went, if he’s coughing or congested…All an attempt to be proactive and detect something wrong before it gets too bad.) Anyway, back to topic at hand, after getting off the phone I realized just how much daycare really isn’t an option for us. We’ve never really considered it anyway, but I guess I had never thought about this happening in a daycare facility or with a baby sitter. There is no way that a stranger is going to tolerate these explosions. There is no way that Cole would get the care and love that he needs after one of these. There is just no way. It’s funny all the little things we never think about when it comes to the impact on our lives from this disease. The things you just consider “par for the course” and begin to easily overlook as normal.   And honestly sometimes I wonder if I am taking the easy way out by going to part time.  If I need to "toughen" up and be able to do it all...but times like this make me realize that NO- I am doing exactly what I am supposed to.  I am making sure my son is getting the best care and life he can.  It's still a bit disfunctional and we barely make ends meet but we're happy and he's healthy and that is what is truly important to us.

Quick vent....

I have about 5 minutes until I need to start the bedtime routine.  I just have to get this out...

Cole would only eat 3 bites tonight for dinner.  He didn't eat much for lunch to day either.  Tried to do his vest earlier and we only lasted about 10 minutes before he had a complete breakdown.  Then when I tried to give him his meds tonight, he took off running and through a fit.  Thankfully his dad was home so he took over (they always behave better for him!!!)  I know this is just one day and that earlier today he was so easy and compliant with meds but everytime he fights me or we miss something I just freak inside.  What if he starts acting like this EVERY time?  What if, what if, what if!!!!  Some days are just harder than others and some days I'm just weak. 

So much has been going on lately!  Eventually I will find the time to get it all on here. 

What A Day!

I think it will take me awhile to get all this one out.  The day started like most others.  Up around 5am with Cole.  We cuddled on the couch until I had to get up and get ready.  My mom picked me up at 7:30 and we headed to Iowa City.  PJ was staying behind to take care of this kids.  Jenna had to work so she was driving up a little later. 

After Cole was diagnosed and we started going to Iowa City for treatment, the director gave my email address to another cf mom to help welcome me and give me a person to connect with.  She was the head of the parent advisory committee at our clinic.  She emailed me with her story and a photo of her family.  They have twin 5 year old's with cf.  TWINS...can't even imagine that one.  As soon as I saw her today I knew I had seen her and knew her name but it took me a minute to figure out how.  It was nice to finally meet her face to face.  She welcomed us all to the conference and then introduced our guest speakers.  Twin sisters Isabel Stenzel Byrnes & Anabel Stenzel!  They wrote a book called "The Power of Two" and have a movie coming out soon.  I had heard of them several times and knew a little of their story.  They talked about 10 ways to find the power to fight CF.  They were amazing.  Entertaining, informative, funny and full of life and hope.   They have both had lung transplants (one has had 2 - she rejected the first one).  It's amazing how meeting people and hearing their story in person can transform your whole feeling of them...so much more powerful than anything I could have read online.  Their book will mean so much more to me now.  We received free copies of their book and also a children's book called "When will I get over my illness?" about a little boy who asks his doctor when he will be well.  They had to be at another clinic in Minneapolis that afternoon so they were hurried to get on the road after their presentation.

Then we had a "Making the Most of Chest Therapy" session.  It was wonderful.  Clinic is always packed full of things that need to get done and information that needs to be exchanged and it's hard to get it all in.  It was so great to get another "CPT (Chest Physical Therapy) 101" class.  Cole has grown so much since the first time we were taught about this so we were reminded that we need to change and add to what we are doing as he gets older.  One of the PT's went over everything and showed us all the different ways mucus can be loosened and expelled.  We still do manual CPT regularly as well as using the vest.  We definitely have not been doing it hard enough.  I am grateful to have learned that today and not 5 years from now or never.  My favorite Dr. also went over the new lung inflammation treatment guidelines they are using.  There is so much to learn and remember with this disease and they are constantly learning more and more so it is pivotal that we are always learning and relearning all of this.  It was so fun to have Jenna there.  This is exactly what she's studying and being tested on right now so it was crazy that it all fell into place like it did. 

Breakfast and lunch were catered in and everything was free ~even parking :)  During lunch they had a smaller room opened up for the newly diagnosed parents to be able to gather, meet, and ask questions.  A doctor, the director and a couple family's on the advisory board joined too.  We still have a million questions, so it was awesome to have time in a smaller group to be able to ask some of them.  It seems like when we get the chance we always forget so many of them.   I always write them out before clinic, but I still manage to forget to ask some or am too busy trying to entertain and appease Cole to get them out.  There were 2 families of very recently diagnosed babies.  It's amazing how quickly I've forgotten what that felt like...Only 18 months ago that was us.  It's nice to be out of that phase.

After lunch we heard about all of the amazing things our clinic is doing.  I never realized just how great of a clinic we go to.  I am so blessed to have them so close to us.  Some people have to drive hours to get to any cf clinic.  We drive one and we are at one of the finest in the WORLD!  We are the only clinic to have Cf pigs and ferrets.  We are one of 12 to have the accreditation we do.  They are seriously leading the way in changing the way this disease is treated.  It is very exciting to be involved.

Last was all of the latest news that came out of the CF Foundation National Conference a couple weeks ago.  We got to hear all about the newest drugs and treatments.  I knew of some of them but I was still floored by others.  Nebs that fit in your hand and run on batteries.  An antibiotic to take the place of tobi that takes less than 5 minutes to administer and is only needed once a day!!!  Things that will add hours to our day and reduce hours of fighting our children to take their meds.  There are so many drugs in the pipeline right now and so many are so promising.  I can't even go into the vertex drugs...something that could fix the basic genetic mutation.  The possibility that taking a couple pills everyday could make Cole's lungs normal, healthy.  That he could breathe like us.  That we would never again have to think about transplantation or lung disease.  I have all the hope in the world, but I can't allow myself to go there very often or for very long.  It just hurts too much to come back.

Throughout the day we were able to talk with other families, hear their struggles, their advice and their triumphs.  It is easy to forget that our way of life and dealing with and treating Cole's cf will always be evolving and changing.  It's nice to have people who have been there to talk to and go to for advice.  It is wonderful to hear a mom and dad talk about their 20 year old daughter w/ cf and how she is taking care of her own treatments and meds now.  It is scary to hear about a parent's struggles with letting their adolescent begin taking over the responsibility of their care.  It is heartbreaking to hear a mom ask what to do about her 5 year old's embarrassment when he has to go to the nurse for CPT and the kids walk by and stare.  But mostly, it is wonderful to know there are people out there who can help guide us through all these things.

There were 2 families there from our area that we had met at the last Great Strides walk.  It was nice to see familiar faces and get to reconnect with them.  It makes it more exciting to go back next year - we will have met so many more people and feel that much more comfortable.

The day ended with a stop into a friend of the family's room in the hospital.  She was re-admitted last night for chemo, then radiation, then a bone marrow transplant.  I just thought since we were there I wanted to bring something for her to do during her stay - but it was hard to figure out what would be good.  I came up with Itunes gift card.  When we went to the desk to drop it off the nurse said "I'll just walk you back" so we stopped in to see her and and her mom.  I can't even begin to talk about this one.  It's not my story to tell anyway.  I will say that on the way in to the inpatient pediatric oncology floor we walked by a common area, living room type room where a child around 5 was having her birthday party.  There were decorations, and presents and even other children.  No child should ever have to have their birthday party in the hospital.  I bet her parents were just elated to be celebrating another birthday.  Another room had huge paper-cut our snow flakes hanging all over the room.  We think it was a girl from California who has never seen snow so they decorated her room in celebration of her first snow experience soon to be on it's way. 

I think everyone should have to walk through these halls at least once a year.  A rude awakening of what is truly important in life and how lucky we are just to be here at all.

I saw a quote somewhere recently..."remember that you are not guaranteed tomorrow and that today is as good as it gets."  I stopped and thought, "no, it will be better when...." and that's when I really got it.  NO- TODAY IS AS GOOD AS IT GETS.  Try to enjoy every damn second of it.

A little bit nervous...

So, tomorrow I will be attending my first "Family Education Day" at University of Iowa Hospitials (where Cole goes for CF).  Last year we signed up but by this time we were on lock down and I wasn't stepping a foot in a hospital.  I even cancelled his clinic visit that month afraid we would come in contact with H1N1.  Anyway, this is my first time attending something like this and meeting all the other parents and caregivers of cf'ers at our clinic.  I'm nervous.  Nervous that I will hear something I don't want to hear, that all those people knowing what I fear and do on a daily basis will be enough to break me down, nervous I will realize I am not doing enough.  Just nervous.  It's stupid, but when something is so important to you, I think every detail and interaction makes you crazy.  At least it does me.  I'm very excited too!  For all the same reasons.  I can't wait to hear what all was said at the conference this year.  I can't wait to listen to the sisters from "The Power of Two" talk about their lives and finding the power to fight this disease.  I can't wait to hear more about chest therapy and lung inflammation treatments.  Mostly, I can't wait to be surrounded by people who get it....people who I don't have to explain a second of my thoughts and fears to.  People who can teach me and tell me what they have found useful in their lives.  People who maybe some how I can help or make feel stronger, better.  Lastly, I am sad.  Sad that there are that many people who know what this disease does.  Sad that there currently is no cure and that so many people's lives have been cut short because of it.  Sad because we will all leave there tomorrow and go home to our sick children, give them their breathing treatments, chest percussions and medications and still not have the ability to allow them to breathe like the rest of the world. 

Mostly, I am excited and hopeful.  Excited to make new friendships and connections...to find more souls who's paths are like mine.  To meet more people that one day I will stand with and celebrate the fact that our loved one's no longer have a death sentence from this horrid monster called cf.