Tuesday, October 28, 2014

Poop and Puke: Not for the Weak Stomached



 The things I think about at night....  Weird and random, I know. 


Anymore nearly every conversation, usually at the dinner table, comes back around to discussing poop.  One of the little boys has pooped on the floor (literally), poop fell out of Cade's diaper onto the floor, Colton pooped his pants, one of them pooped in the bathtub or whatever weird poop story for the day that can be imagined.  The other day as I was changing Cade's diaper I heard David laughing - I had told Cade that he had some really good poop, not something you hear in a conversation every day. 

Changing Cade's diaper is always a treat - you never know what you're going to get.  It's like playing slot machines or opening a Christmas present.  Before we ever knew about CF and that it caused digestive issues, all we knew was that Cade had some really smelly diapers.  We didn't think too much about it other than he could stink up a room.  We didn't know that there was anything wrong with him.  Once we found out Cade had CF, his poop became the news of the day for us.  His poop told us a lot about what was going on inside his body - not enough enzymes, too many enzymes, too much iron, etc.  Before he started taking his enzymes (he was starving, and we didn't know it) his poop was slimy and greasy.  Now every time is a surprise on what we're going to see.  There are always CF poop stories on Facebook from CF patients or other CF parents and I can relate to almost all of them.  Cade's funky poop smell comes from his food digestion problems. 

Now to the puke.  During the first month of Cade's life he would spit up like any other baby.  Throw in the projectile, miss him and whomever was holding him, vomiting at least once a day and that's what we were dealing with.  At a month old we found out his pancreas was not working properly.  When his enzymes were working, the vomiting stopped.  His puke was like our indicator when he needed his enzymes increased.  Projectile vomiting = the need for more enzymes.  He hasn't had many problems since last January.  We haven't had to increase the dosage of enzymes just add another med to help them work. 

Last Saturday night he did this, so this is where the puking part comes from.  He has this weird, random puking that he does.  He has nights where he will throw up completely out of the blue.  We do not know why.  We do not know what causes him to do it.  We do not know when it is going to happen.  Saturday night we were coming back from a softball tournament.  Somewhere along the way Cade threw up.  It was quiet and we had no idea until we got home and was getting him out of his car seat.  He never said a word about it happening.  We never heard it.  Colton never said Cade was throwing up. 

I know all of it has to do with the CF, it is just such a sucky disease!


Now to cheer on the Royals!!!


Thursday, October 16, 2014

The Big Sis




The text I received from my oldest this morning:

Aubrey:  Can there ever be a cure for CF?
Me:  Hopefully someday but no not yet.
Aubrey:  Like is it possible?
Me:  They are working on it and they have the expensive meds that will stop if for some mutations and they are working on stem cell treatments as a cure.  No cure yet but they are working on it.

(I figured she was debating (arguing) with someone about CF with facts that she about knew about CF but wanted back-up.)   

Aubrey:  I'm doing my persuasive speech over it.
Me:  Persuade someone to become a dr or researcher and cure him!
Aubrey:  Okay I will



It is amazing for me that she puts Cade and a cure for him as so much importance in her life.  She doesn't want people to fell sorry for him but she wants to educate people as much as the rest of us to help him.  This is from the girl that was beyond mad when we told her I was pregnant and was convinced that she would want NOTHING to do with him once he was here.  She is now one of his biggest supporters and would do anything for him.







Monday, October 6, 2014

Now is the Best Time to Have CF! Really?!?!




"But medicine has come such a long way!  If you have to have CF, now is the best time!"  HUH?!?  "Aren't you excited about it?"  Yes and no.  Of course I'm glad that Cade has a much better chance than he would have had, even 10 years ago, but I'm selfish and won't be happy until he is cured.  Obviously something isn't working because we're still losing fellow CFer's ever day. 

We have our usual craziness going on today, like we do every day.  This past weekend we watched Aubrey cheer at Homecoming, Blake had a flag football game and Addison had a softball tournament - she was MVP of game 4!!!  Today I have to go have my 3rd mammogram done in the past 6 months to see if everything is "normal."  It really makes you stop and think about your own mortality and how I don't have time for anything but to be healthy.  It is what it is and if we didn't have at least a little more stress in our lives I don't know if we would know how to react!  I know things will be fine, it would just be a little easier if I knew Cade would be ok.  FIX HIM!