Yesterday

Yesterday was one of those days.  I was running on a couple hours of sleep.  (There was a storm the night before.   Usually they don't bother me much anymore but there's still the occasional one that keeps me up).  I noticed my hair is even more white and grey than last time I looked and it's getting thin.  I'm going bald.  Dad had an MRI.  I washed windows.  My computer dindustry.  It wasn't a normal day - I don't wash windows.   

Cade started running a temperature, then it went away.   He's going to get sick, it's a fact. How sick is he going to be when he does get sick?  Is it just the flu or is it something more? When is the sickness going to be the one to put him in the hospital?  

He woke up this morning, no temp and he felt fine so he went to school.  When we picked him up he wasn't feeling good again, by the time we got home he was running a fever again - a high one. 

We may be going to KU tomorrow to see him team. He may be feeling completely fine.  The only thing I know for certain is that I need to call Heather and get my hair problems taken care of.

Life, in General

This really isn't about Cade for once.  He did get an excellent report at his last doctor's appointment.  We were told that he is the healthiest CF patient they have!  So, for all the times it has been a struggle to get him to do treatments, it has totally been worth the fight with him.  We have to really watch him to make sure he takes his enzymes also.  I have found them in the fridge (I have also found his favorite stuffed animal stashed in the fridge), his car seat and I'm sure there are more in hiding places I haven't found yet.


LIFE - Random Ramblings
Last night I was thinking about the 4th of July coming up.  4th of July is my absolute favorite, followed by St. Patrick's Day and Christmas.  Growing up, we always had the annual 4th of July event, alternating years between mom and dad's house and the Johnson's.  It has been so long ago when we actually celebrated "officially," I can't remember who would be hosting the event this year.  Us 3 kids (Beth and Todd were the siblings I never had) spent hours shooting firecrackers - finding snake and crawdad holes, the neighbors mailbox (we didn't know at the time it was not something to do!) and having the greatest time! We learned to ooohhhh, awwwe, and ooooo the fireworks, which a couple of my kids humor me and do it too, the others just roll their eyes.  When we were old enough, we finally graduated and took over from the dads, getting to light the "big" fireworks in the road.  My dad had this hideous slimy, red and white polyester, 1976 bicentennial, 4th of July shirt (it was finally retired a few years ago for a much nicer one).  I would let him wear the nasty polyester shirt every single day now if it had super magical healing powers to make him, "him" again.

We took our 4th of July show on the road 19 years ago.  We all packed up and headed to Minnesota - I'm not sure Beth's neighbors quite knew what to think of it all - running around the back yard waiving the US flag was what finally sent them back inside.  It was the norm for us.  Who knew all of America didn't celebrate like us LOL. 

Times have changed.  The Bostonian's bring their kids back home to carry on the tradition when they can.  My family sets off fireworks randomly all year long.  Our neighbor, Fred, knows one's on it's way to him when he hears the kids yelling "fire in the hole."  We know it was a really good one when we get the call from Martha asking if it was us causing her windows to rattle.  We keep everyone on their toes around here.

Speaking of siblings (random thought here), I also have my little cousin, who really isn't so little.  He's taller than me, and has been for a long time and 5 years younger than me, even though I look MUCH younger than him LOL.  I could refer to him as my younger cousin, but nobody would know who I was referring to.  If I could count how many times people have asked me if being an only child was weird..... I don't know?  Having siblings is weird to me.  I watch my kids, not being able to stand each other one second and then in the next turn into a wild pack of animals protecting their own against an outsider and then right back to not liking each other in the second after - I don't get it.  I have been told of a time when I piled up my toys and laid on them so I wouldn't have to share with Josh Wheeler - we remained great friends even after the toy incident.

That's the "famous" shirt on the right. 

Cade's Feb Clinic

Cade had is 3 month CF clinic checkup the other day.  I always worry a little about going because I just never know what to expect.  He has had a cold and will not blow his nose (which drives me nuts), so I knew he probably had some sort of infection going on but didn't know if it had moved into his lungs and if we had worse problems than we thought.  He ended up having a sinus infection, which didn't surprise me any.  Other than that, he's in great shape! 

A couple of Cade's team are going to be travelling to a conference this spring to get KU set up for clinical trials for meds.  This is super exciting for us!  Cade's doctor has him in mind once he is old enough and they have meds that are for his specific mutations.  One of Cade's mutations is the most common with almost 1/2 of all CF patients having it.  His other mutation is a rare one.  He is only the 40th person to have the mutation.  There have been more obviously but #40 since they have been able to identify it.  He is only the 26th person to have his CF genetic combination! 

He is as ornery as ever - well into his terrible, attitudinal, know-it-all threes.  He's still as sweet, loving and cute as always though.  He will be starting pre-school in the fall even though he has told me he doesn't need to go.  He still asks EVERY day when we're going to the beach and tells us he loves the beach. 

He's into taking selfies