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.