Cade's Latest Check-up

Cade had a check-up last week and I realized I haven't posted anything in quite a while.  When I looked, it has been over 6 months which means he has been doing really good and there has been nothing new to write about!  He had gained a pound and grew 3/4 of an inch since August.  The team was telling him he's going to be the next Shaq with that kind of growth - poor kid got the short (pun intended) end of the stick where height is involved.  For the most part his meds stayed the same with the exception of his Pulmozyme (the expensive inhaled breathing med).  He DOES NOT like it for whatever reason.  I don't know if it is the taste, smell, how it makes his mouth feel - not a clue.  He only has to do the Pulmozyme once a day now but they are going to try doing an inhaled saline solution which may cause lung spasms???  We will start out with 2 Albuterol treatments before the saline, so we'll see how that goes.  Dr said the Pulmozyme isn't doing him much good if he won't do it anyway.....

CF really sucks

I haven't posted anything since February.  That's a good thing.  It means it has been pretty uneventful around here.  But.........

To be honest, I am SO over this disease.  We are only almost 3 years into it and I am so sick of it.  Maybe I have had my hopes set too high, but I wanted a cure by now.  I know they are getting closer and closer every day but I wanted it done yesterday.  I hate knowing the potential this disease can do to Cade. 

The stress is taking it's toll on all of us (ask Steph or Heather the state of the color of my hair).  The older kids always have some activity going on and we can't always make it to everything they do all the time.  They understand why we aren't there but I know they wish we were.  Since I left a job that I really actually liked and liked the people I saw every day to became a SAHM, David has been left to be the total provider for the family - stressful.  He doesn't complain about it but I know it wears on him.  As for me, I have become a total introvert.  It took me a while to realize what was wrong with me.  I don't mean to come across as snotty or stand-offish or unfriendly - becoming an introvert (and not intending to) was my way of dealing with all of it.  It was easier for me to avoid people and not have to deal with what was going on with Cade.  Thank you to all of you that have stuck by me and are understanding through all of this.  Even as stressful as everything is we wouldn't change it to be able have Cade as healthy as he has been.

We try to let Cade have as normal of a life as he can.  He plays in the dirt, he rides in the tractor, he plays ball, he drinks out of the dog bowl, poops in the yard (he'll kill me for this one some day), eats food off the floor - he's a boy.  Even with all of his normal boy things, he's still a little boy that takes lots of meds and spends lots of time doing treatments, time that could be spent doing whatever ornery thing he could think of. 

February Doctor Visit

Check out those cheeks!

Little mister had a really good check-up today!  He has gained 2 pounds since November, oxygen level was good, lungs sounded good and he is finally in the 60% for his height to weight.  The only problem he has developed nasal polyps.  They aren't large enough to cause him any problems yet but by spring he may need to start taking a nasal spray (we'll see how well this goes over).  We will find out next week if his pseudomonas or MRSA has returned in his lungs (fingers crossed they haven't). 

Nasty Bugs

 

 

 

 

Strep and pneumonia have hit our house :(  It shouldn't be that big of a deal, more meds and breathing treatments for the boys.   BUT...... now both of them are on meds and both are doing breathing treatments - 3 times a day each!  Colton is in seclusion with cartoons, Thieves oil being diffused with juice and crackers.  His temp is under control right now.  Cade has the run of the rest of the house.  He likes it but also doesn't understand why Colton isn't playing.

1st ER Trip

Yesterday was the day.  The day for Cade's 1st trip to the ER.  No, it had nothing to do with his CF but with his head and a rock.  The rock obviously looks better than Cade does.  Initially the doctor said it looked like 4-5 stitches or staples if it was in his hair.  Once they got it cleaned up it looked a whole lot better than what they thought (and what we thought) and were able to glue it back together.  He has some road rash down his face (not sure how???) but he was back to his usual rambunctious self by late afternoon yesterday.  A normal kid with a normal ER visit!

I'm not sure which is worse - the trauma of yesterday or the worry of today that he doesn't fall and split it open again.