My Biggest Fear......

 

 

I came across an article and video this morning, Raising a Family with Cystic Fibrosis.  The dad is a CF dad and pretty much summed up what I have been thinking since July 25, 2012 when I opened Cade's newborn screening letter -

              “My biggest fear is that I outlive my children – simple as that; that shouldn’t be.
               And I don’t want that to happen. That’s where it begins and ends with the fear.
               I don’t want that to happen.” - Pat Randle, CF Dad.

I don't know the guy and had never heard of him until this morning.  He said what we all think but don't want to say out loud. 

I will continue to spend my days researching and raising awareness and doing whatever I have to do until Cade is cured because he WILL outlive us.

Never Say Never

As I was driving home from Christmas shopping last night (while my husband was napping) I was thinking about the new "miracle" drug that will help all with CF, including Cade.  The last great treatment, Kalydeco, could only help a small population of CF patients with specific mutations.  Kalydeco is almost $31,000 a month!  I have no idea how much this new drug will cost, but Cade WILL have it if it is what he needs to keep him healthy. 

When you have a child, things change.  When you have a child with an incurable, terminal illness things REALLY change, the way you think changes.  After we found out how much the Kalydeco was a month, we knew there was no way we could afford it.  You hear about people doing WHATEVER they have to do to help their sick kids stay healthy.  In the car tonight my thoughts went back to when we found out about Kalydeco - could we get it on the black market?  Would we have to go overseas to obtain it every few months?  We would do it if Cade needs the Kalydeco or if he needs the new drug.  Hopefully, we won't have to resort to these means of getting his meds, but................

I have done more praying in the past 864 days than I have in my whole life.  I pray not for a cure for Cade, at this point, but for him to be healthy on a daily basis and thankful when we make it through another healthy day.

Anyone who has ever said that they "would never," my hope is that they never have to.

November CF Clinic

Cade had a excellent check-up today!  I'm going to brag about how good it was, while I can, because I know at any time the bottom could drop out and we could be at the complete opposite end of how his health is doing.  His lungs sounded good, his oxygen level was at 97% and he is continuing to gain weight.   

He was a super brave boy today.  He had blood drawn and didn't cry.  He had a flu shot and didn't cry.  The blood tests that had already come back were so good that he gets to quit taking his extra iron!  We should find out by the end of the week or early next week the rest of his test results.  He laid on the floor and watched a movie while we were in clinic.  The doctor did the check-up on the floor with Cade! 

Cade's Pediatrician Appointment



Cade had a check-up with his pediatrician today.  This was his 2 year check-up that should have been done back in July - ooops!  He has his team at KU and I forget that he is still a regular kid that needs to see a regular doctor for regular check-ups.  He is back in the 25% for his weight and height (he was in the 10% at his 18 month check-up).  He's in good shape.  He sounded good and looks good. 

This was the easy doctor appointment.  Next week he goes to see the KU team.  It's going to be a long one.  In addition to seeing his regular team, he also has to have a chest x-ray (to see how they look and compare them to previous images), have the dreaded blood work done (to check vitamin levels and all that good stuff) and a flu shot.  Needless to say, he is NOT going to be happy.


To be continued next week.............

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!!!

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.

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!

Enzymes Do More Than Just Digest Food!



These are what the "beads" look like in Cade's enzymes.

 

We have known, since Cade was 6 weeks old, that he would have to take pancreatic enzymes with every meal and every snack to help him digest his food.  The mucus has blocked the pancreatic duct from being able to get the natural digestive enzymes to his food.  We have also known that we needed to do a finger sweep of his mouth to make sure that none of the "beads" from the capsule were still in there when.  When Cade was a baby we would open a capsule and dump the beads into a spoonful of applesauce.  We used to get some really weird looks from people when he was a baby.  Here we were feeding him applesauce with a spoon and giving him meds.  When we would put salt in his bottle...... well, you can imagine.

 

He has been doing really well, for the most part, taking his meds whole and swallowing them.  The other day though he was keeping his mouth closed after breakfast and was talking through clenched teeth.  I finally realized what was going on - he had decided to become a chipmunk and store the pill in his cheek.  The outer capsule disintegrated and the beads were breaking down the inside of his mouth!  Because his mouth hurt, obviously, he had a few days where it was almost impossible to get him to eat, let alone take his meds that he HAS to have. 

Through all of the pain in his mouth, his love for cat food never really went away though.  I wonder if he needs to have enzymes when he eats it???     

SAHM

A normal day around here

I saw an article about a SAHM.  WTH?  SAHM took me a while, like LMK, IDK, IDC (Aubrey was the 1st to send me a text and used IDC.  I thought she misspelled IDK.).  SAHM = stay at home mom, ohhhhh.  Yep, that's me now, not what I had ever planned to be.  I couldn't wait to retire, but quitting to being a SAHM is just not the same.  I didn't get to finish my career.  I thought someone who got to stay home with their kids had one of the easiest job in the world.  I was home during the summer with the kids which was no big deal.  We played a lot, went swimming, hung out - being home wasn't my "job."  HA!  Being a stay at home mom is tough.  When you see the "soccer" moms on tv that look perfect and have a full breakfast, lunch and dinner ready for their family - I'm sure they exist somewhere, but definitely NOT here!  I don't have time and my kids would wonder what was wrong with me.

It has taken some (ok A LOT) of getting used to, but when the boys say they like being with mom all day and the older kids like knowing I can bring them lunch or whatever they may have forgotten at home that morning, it makes it worth it.

Well, Cade just pushed the button to END his vest before it was finished (I guess he has other things better to do) so it's back to SAHM for me.

Meds suck

I'm sitting here with Cade while he's doing his after-nap treatments.  It's during the afternoon treatment times that I have the most "down time" if you want to call it that.  Both of the little boys are still not awake from their nap, the big kids are still at school and it seems like this is when I have the most time to think about things.  Today as I was getting everything ready for the 30 minutes - the neb cups, mask, breathing meds, chocolate milk (Cade's with meds in it), enzymes, and a snack - I thought how much his enzymes suck (I really wanted to say they are a pain in the ass, but I won't).  Ya, ya, I know, it's only 1 pill and it keeps him healthy and he would be in really bad shape without it and all that stuff, but............ for Cade it's like the size of a small boulder and in the back of my mind I have to wonder if this is going to be one of those times where it is a struggle to get him to even take it.  There have been times when we watched him put it in his mouth, take a drink and we assumed he swallowed it, only to find it in his chair with him after he has finished eating.  This 1 pill has to be taken every time he eats or drinks something.  The enzyme works for about an hour, which is fine except for times like now when he kids get home from school an hour after he has taken his pill, are eating a snack and Cade wants some too.  We don't want to give him too many enzymes in a day especially since he is on a rather high dose, for his age, anyway.  So the dilemma is, do we give him another pill or wait since we will be eating dinner soon and he will have to have one then?  This is how it kinda is throughout the day - when did he have his last enzyme?  Was it within an hour or was it longer?  Does he need another one?

Yes, I am truly thankful that Cade does have all these meds.  I couldn't (and don't want to) imagine how life would be for him if he didn't have them.  I'm just having one of those moments where I would do anything for him to not have to go through all of this. 

Treatment Time



Having some fun and taking selfies while Cade's doing his treatments.

While we are sitting here doing Cade's vest and breathing treatment, I started wondering just how much time do we spend in a year doing treatments.  We do his treatments in the morning after he wakes up and in the afternoon after he gets up from his nap.  Right now we spend between 15-16 days a year total doing treatments!  I don't mind getting to spend the time with him but I know he would rather be doing just about anything other than sitting there.  The big kids are really good about hanging out with Cade while he's "hooked up".  Some days are easier to get him to want to do his treatments, some days are just a complete struggle.  Cade has figured out how to turn his machine off and has no problem with doing so.  He has his cheering section when he finishes and will call you out if you're not clapping for him!

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.

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!

Colton's Big Entrance

Daddy's little buddy.

 

When we had Colton........ well, I should have known from the very beginning what a ride it was going to be. 

On the morning of June 6 I was helping David move trucks.  I was so pregnant that the steering wheel of the dump truck was under my stomach.  We hurried home after we finished since I had a normal check-up that afternoon.  No big deal.  We left the older kids at home and told them that we were just going to the doctor and would be right back home.  HA!  Luckily, they called my mom to come get them so they could go swimming at my parents house.  At the check-up we were told that I was being sent straight to the hospital and we were having a baby in a few hours!  WHAT!  I was in a panic.  We're dialing phones as we were walking out of the doctors office and people in the waiting area were congratulating us.  We hadn't brought anything with us, didn't have a bag packed at home and were just in general, not prepared.  I had to argue with a nurse who was trying to tell me that we were having the baby earlier than we were supposed to and David wouldn't have made it back in time.  He made the trip home, packed a couple bags and made it back right about the time I was headed out the door of my room to have this baby.   

3 hours after having Colton he was taken to the NICU in Joplin, I was in Pittsburg.  I hadn't got the chance to hold him, touch him or hardly even look at him before he left in an incubator with complete strangers staring at me with a grim look on their faces.  I had a C-section and was still a little out of it from all the meds.  It really didn't hit me for a few more hours what was really going on.  He was having trouble breathing.  We didn't know if he was going to make it or not. 

We were in the NICU for a week.  When we finally made it home, I held him pretty much for the first 3 months of his life.  David had to ask if he could ever hold him.  I was pretty generous - he got him for about an hour during the evening each night.  No, I wasn't that bad.  I did share Colton more than that (once in a while).  Hmmm...maybe this is why he has sharing issues now?  Yes, he was spoiled then and still is, just ask anyone that knows him and I won't deny it. 

When Colton was about 6 months old we found out he was going to be a big brother.  Biggest, and turned out to be, best surprise ever. 

Little did we know that a stay in the NICU was going to seem like no big deal 13 months later.

Into the Unknown We Go..................

Hello!  Let me give you some background about where Cade's Cause came from. 

I am a 40 year old mother of 5 ages 16, 11, 8, 3 and 2.  I taught 7th grade science for 15 years, so I have thousands of "kids."  I am now a stay at home mom to my two youngest - Colton just turned 3 and Cade will be 2 shortly.  Some days I think teaching 7th graders was easier than a 3 and 2 year old LOL!

When Cade was 25 days old we were given some devastating news.  We were told Cade has Cystic Fibrosis.  I wish I could say he "had" Cystic Fibrosis, like he had gotten over it, like a cold, but he still has CF and always will.  I will get into that day at a later time.

Cade's Cause was started when my son was 2 1/2 months old.  We had just lost our home in a storm and had a baby with a disease we really knew nothing about except life expectancy wasn't the greatest.  A friend, actually one of my kids from my babysitting days, was kind enough to start a fundraiser for Cade as we were overwhelmed with the cost of taking care of a baby with CF and not having a home.  Friends and family rallied around us and away we went. 

This past April when the "cold water challenge" was the rage (jumping into cold water to raise awareness and money for different groups, foundations or causes), unknowing to us, we had people jumping for Cade's Cause and the Cystic Fibrosis Foundation!  Cade's Cause, yet once again, raised awareness to more people about CF.

In May, I tried to do the 31 days of May with a daily fact or story about CF for Cystic Fibrosis Awareness month and made about 20 of the 31 days.

So............... this is where Cade's Cause has lead me to - a blog.  I'm still not too sure what a blog is, so into the unknown we go.