Cade's Check-Up

                              

My aunt posted this on her FB page tonight.  She does a really good job of sharing posts and information I, or others, have written about CF trying to help get the word out to others who may have the connections we need.  I have read this one before, and like a lot of things never really paid attention to it and never really thought about it.  This is Cade.  He looks perfectly fine on the outside, but inside is completely different. 

Two weeks ago we went out to eat.  Cade looked fine but we found out he obviously wasn't.  He wouldn't eat anything (it was Chicken Annie's!) - onion rings, chicken, the bread - nothing!  He looked like he was drooling a little blood, it was just weird.  When we got home all he wanted to do was lay around (totally not normal).  We worried all night after he went to bed what the night was going to be like and what the morning was going to bring for all of us.  He woke up the next morning like the healthy kid that we're used to seeing.  Not a clue what was going on with the little nugget. 

In the back of my mind I have always wondered when the "sickness" would happen.  Last night, in one of the groups I have joined, someone finally asked the question to others.  From the 60 some people that commented, the average age when lung function began decreasing and things started going down hill was around 9.  Obviously you can't get an average from 60 people but it gave us an idea.  Of course it could start tomorrow or it could be 16 years down the road. 

Cade had a regular check-up today with his CF team, minus one.  Our nurse, that has been with us since day one (literally) and has taken care of all of us, retired recently.  We missed her and it was weird being in clinic and not having her there.  He has gone through a whole range of emotions when we have gone to clinic.  He has started crying when we entered the parking garage, sat almost statue-like during clinic, glared at everyone he saw...... But today was a really good day for him.  He was happy, playing, giving hi-5's, showing off - the Cade we see every day. 

On a good note, his lungs were clear (which he nodded like he already knew), O2 level was at 99% and we will find out in a week if he cultured any bacteria or anything from his lungs.  For his age he is short (5th percentile) and skinny (25th percentile) but for him he is short and fattish (he's weighing in at almost 26 lbs) - heavyweight here.  He has a knot of the side of his neck that we noticed a while back.  Cade's doctor thinks it may just be a lymph node but when she felt it it was harder than she expected.  Ultrasound in a month if it doesn't go away to find out what it is - hopefully nothing.  Other than that, Cade doesn't have a scheduled check-up for 3 months but it will be a not happy one for him - chest x-ray and lab work. 

Cade has a Bug Bite!

I'm not happy that Cade has a bug bite because I know how miserable it is for him.  But, I am super excited because it makes him more of a normal kid.  Weird, I know.  Colton looks like he has been bitten by almost every bug in the county.  I have wondered if it was Cade's meds or his saltiness that has deterred the bugs.  I douse Colton with bug spray to the point he probably wonders why everyone else doesn't smell as wonderful as him.  I usually don't put anything on Cade because he has never needed it and I didn't want him to breathe any of the bug spray.

It is the little things, that you don't think about, that can sometimes be the most exciting. 


Other than his bug bite, Cade is doing really well (knock on wood).  He has a check up in a week so we will see how he is really doing.  Even though he is doing good, I feel like I can never truly let my guard down and be completely comfortable since we don't know when the not so good day will come.  He has hit the terrible 2's and is really good at it - temper tantrums, screaming, all of it.  With Cade in the 2's and Colton in the trying 3's I am guessing we're either going to have some full blown WWE or UFC going on around here before long.  We have had some minor skirmishes over toys, who ate the last cookie, who got to the door first, etc. - all the really important things to fight over.  At least they are all about safety at the moment LOL!

July 31

There are a lot of dates that I can't remember anymore.  Luckily, I have my daily planner that I write EVERYTHING down.  July 31, which was yesterday, is one that I have remembered for the past 2 years and probably will forever, without ever needing or wanting to write it down. 

2 years ago yesterday, July 31, Cade was diagnosed with CF.  Second worst day of my life.  The first was 6 days earlier - the day I read his newborn screening letter saying he hadn't passed the CF screening.  Cade's team has been right there with us from day one, helping in any way that they can.  When we left CF clinic a few hours later, our lives had completely changed by some disease we knew very little about.   

In May, I tried doing the CF Awareness 31 days of May.  I made about 1/2 of them.  This was one of the posts that describes the day:

You worry about all of your kids all of the time. When you get the confirmation that your 25 day old child has an illness and words associated with it are disabling and terminal it creates a whole new level of worry. A worry until you make yourself physically, mentally and emotionally exhausted - and it doesn't go away.

When we received his newborn screening letter saying that Cade needed more ...tests for CF I was devastated. I realized I was emotionally withdrawing from him because I thought he would die in a short time and didn't want to be emotionally close to him. As his mom that made me feel even worse for even thinking that. That feeling only lasted for a couple of days and never returned.

After the doctors told us that Cade did have CF, David and I decided right then that we would do whatever we had to do to keep him healthy. There have been times when we have had to keep each other going, not get down and stay positive. We will continue to do anything and everything we can to keep him with us as long as possible.