To Sports..... Or Not To Sports

We spent this past weekend at a 12U World Series softball tournament.  Our girls got 4th out of 28 teams - not too bad!  I love watching the kids play ball.  Being the middle of July, it was hot.  We took Cade with us.  I feel bad because usually Cade has to stay behind, especially when it is hot out or if it is during the middle of cold or flu season.  We decided to go ahead and take him with us this time.  He likes watching the girls play ball and is a lot like his mom - he likes to yell loudly and cheer them on (which absolutely mortifies his sister while she's on the field).  Somebody has to be the loud one! 

Cade is supposed to be active and we have been told that it will help his health to have him involved in as many sports as we can.  I sat there wondering how we are supposed to have him play football, baseball or even golf when they are played when it is HOT.  His little body gets hotter just by doing half of what the rest of us do.  We make sure to have lots of water and Gatorade, lots of salty snacks and keep the "cool" towels in ice while we're outside.  He doesn't know that he is different from the other kids (which I hope he never does feel different) and tries to keep up with them.  He doesn't like to have to sit still when the others are on the go - pretty normal for a 2 year old.  But do you know how hard it is to try to explain and ration with a 2 year old that they are too hot and need to settle down?  It's almost like - here Cade, have another lick of salt and dunk yourself in the cold water, I know you don't mind.

Today we were at a friends house visiting (miss you Ang!).  I walked in their house and it felt like I had never missed a day being there.  Anyway, Cade was getting hot just from going out the door and right back in to check on me.  Yes, he is a total momma's boy.  The other kids were playing, running around and doing ok, temperature wise.  He did get a brownie, which he talked about the whole way home!

This is one of those things where the older he gets, the more we will have to adjust to his needs.  I don't ever want to have to tell him that he can't do something.

CF, Not Your Average Genetics

There are so many unknowns with Cystic Fibrosis. 



Here goes the teacher part...........

CF is a recessive trait, meaning a person has to have the recessive CF gene from both parents.  In "basic" genetics there is a 1/4 chance of a recessive trait showing up in offspring.  If an individual has a dominant and recessive gene then they are carriers of CF, in this specific trait.  A dominant gene does not always mean it is a better trait, a recessive gene does not mean it's a bad trait, just a dominant has a better chance of showing.  Brown eye color is dominant to blue eye color, having 6 fingers is dominant to having 5 fingers (yes, it's true),  if you can roll your tongue that's dominant, etc.  You have your straight dominant and recessive, then you get into the co-dominance......   Google genetics.  It's pretty interesting.

There are 23 pairs of chromosomes in each cell in your body.  Here is chromosome 7, where Cade's CF gene is located.  That one little spot is what is causing such a problem.  CFTR gene

OK, enough of the genetics lesson for the day. 

 

CF is one of these diseases that doesn't follow genetics like it is supposed to.  No two people have the same exact symptoms, even if they have the same genetic combination.  Cade is a rare one - one of his mutations, 48% of the CF population has, but with his second mutation he is only the 40th person in the world to have.  He is only the 26th person in the world to have the 2 mutation combination he has.  As much as it sucks that he has this disease, I think it's kind of neat that he is so unique and stands out.  (From a science standpoint, yes, I'm weird like that.) 

 

So, a person who is just a carrier of CF shouldn't have any CF symptoms.  Doctor's will not tell you, as a carrier, it is impossible to show any symptoms of CF.  Not so much.  Through reading articles and researching CF I have found many carriers of CF DO show symptoms - some respiratory, some digestive.  But that's not possible, hmmmmm. 

 

Cystic Fibrosis could be the disease that disproves genetics as we know it. 

 

 

My Little Mini-Me

Yesterday my little man turned 2!  2!  It doesn't seem like it was that long ago that I finally saw him for the first time.  Colton was about 6 months old when I thought I had something wrong with me.  Little did we know when we went to the doctor there would be a little someone waving at us, saying hi mom and dad, when we had the ultrasound.  I think we rode the whole way home stunned and excited at the same time.  All of my kids were baldies when they were babies.  Then Cade came along - lots of dark hair and dark eyes - my little mini me.  Most parents count fingers and toes, I couldn't get past all the hair.  He is stubborn and hard-headed but he is the sweetest little boy anyone could ask for AND he is completely spoiled - he is the baby of the family.   



After we brought him home I remember thinking he had a weird smell to him.  I don't know what the smell was.  I told my mom and she said I had said the same thing about Colton, which I don't remember.  I think I may have know there was something different about Cade from the very beginning, I just didn't know at the time what it was.  Of course we now know it's the CF salty smell.   
 
We were told from day one of his diagnosis that he would have hospital stays.  We are almost 2 years into life with CF and have tried (and succeeded - so far) to keep him out of the hospital.  Cade knows exactly where we are when we pull into the parking garage at his doctor's office.  He becomes a completely different kid when we're there.  He is quiet and reserved and you can tell he is not happy to be there.


Sitting here with him while he does his vest and nebulizer treatments, I think about what all I would do to keep him healthy.  Some days are easier, having him do his treatments, than others.  The other kids are good about hanging out with him when he's "hooked-up" too.  He is so smart and I hope he has the opportunity to use his knowledge when he gets older.   


We take life day by day, but here's to many more years (hopefully most of them hospital free).  Happy Birthday Cade!