How YOU Doin'?

My goodness, I wait way too long to write these. And it's getting more difficult since our computer crashed. So how are y'all? I don't have many followers but I tried to stick with SOMETHING in life.
Welcome to August. This month in our state is generally hot, humid and disgusting. This year...try hot, humid and very wet. My hometown has closed their gates and parts of it are under water. It doesn't appear to be letting up anytime soon, as we're on track for rain for yet another 6 days at least. We have been in a drought, our local lake went from 67% capacity and a water emergency in a nearby city, to nearly 98% in a week or so. We are certainly grateful for the rain, but the must smell, humidity and standing water are all concerns for those of us in the CF Community.
I was taught as a child when you smell THAT smell..the musty smell...it spells mold. Humidity creates lung pressure. And standing water..well, bacteria and bugs love it. I am not going to complain. Mother nature has years worth of dryness to make up for, but EVERYONE is paying for it.
Our school year begins in 7 days. Yes. That is me dancing, whooping, and hollering. I am so excited for school this year. Not only has my second baby made it to kindergarten, but he can stop begging me to go to after school programs with his sister. He can stop asking why he doesn't eat lunch at school. I also know that life will get a little more regulated now. Not that it can ever be 100%, but I'm willing to accept 50-75%. My baby...is nearing 3 and will soon start his own journey to kindergarten. I also have a 4th grader...and that means 2 years left and she's in middle school. I may shed a tear when that day comes.
Now. Our CF drama. We went for our 3 month check up at the end of July. Corban lost weight. While not much, merely 3 ounces, that can be detrimental to someone who is already struggling to keep those pounds. So we're packing on the fat. Not easy for Mom, who is struggling with weight herself. His PFT's dropped a smidge. 4%. This could easily be related to him learning the technique, and being a little stubborn. His blood work all came back great. Vitamin levels are holding, liver enzymes are good, blood glucose is good. His sputum culture, which was actually more like a throat culture came back with normal flora and some Staphylococcus which for Corban is normal. He has developed another polyp in his nose. It's obstructive to his airway in his nostril. We had a sinus surgery done in March 2012, to remove his tonsils/adenoids/polyps and clean out his sinus' because of what we refer to as "CF disease". Which is really just thick, sticky mucus. He had the size of a nickel worth of air in his sinuses then. We have our follow up CF Clinic in September and coordinated an ENT visit with it. That will determine if we do surgery again, or if we can wait a while. Prayers are certainly appreciated there.
Being the mother of not only 3 children, but one with Cystic Fibrosis is stressful. Add school, work, extra curricular activities, a full time job, and marriage and I fear I'm going grey.
Y'all stay dry, and above water. I have a two year old who needs reminded what "Goodnight Moon" is about.

Long time..

Wow. Its has been almost 3 months! Oh my. A lot has gone on. I just got too busy trying to keep everything together, and my focus ended up on life.
The great news is that Corban made it to Kindergarten!! We were worried he wouldn't get to go. But somehow, we pulled it off. He is still behind in a couple of spots, but his teacher felt that he would pick that up quickly once school was back in session. My main concern with school now is a) paying for it..and b) covering ALL of our CF bases. He will be a full day student this year. And i peaked at the prices this year...70$ for the prepackaged supplies for my two school age kids, plus enrollment which is ever climbing. I may need a summer job just for that. Lol!
We have reached the summer time heat and humidity. Which does NUMBERS on Corban...he is having all the congestion, chest pain, and cough. But today we come along with the tummy ache for the last 4 days. And he says his stools are "red" which means its more orange. So I'm just questioning if we're maxed out at our enzyme dose. Or if there's a little more to it.
My daughter will be 9 next week. She is really trying me. Just constantly pushing buttons and testing limits. Perfect example is that she chose not to share computer time tonight and sat on it for two hours. When she was told each time to switch, she would let Corban play for a minute or two and then take it back. Well now she is whining that she doesn't get to play and "when is it gonna be my turn?" It's not. You took your time. Now it's Corban's. I haven't been sleeping well, and my nerves are just shot.  I will freely admit that I am probably not handling things in the best way possible. But I am definitely trying. And I'm going to bed EARLY tonight.
So..my fellow CF parents...what tips do you have for a parent going into a full day school year for the first time? What are some things you had to make sure you had in line for the teachers, office staff, etc.?

Why We Fight CF

Obvious reasons we fight Cystic Fibrosis are our son Corban HAS it, our son Rylan may carry it, and CF is fatal.
I want to show you a day in the life of Corban. And let you in on things he'll deal with in the future.
Let's visit a Monday morning for Corban. I get Corban up at 6 am. He doesn't need to be ready for school until 7:45 am. He usually chooses to eat breakfast first thing. So we start with 4 enzymes, a vitamin D pill, an omeprazole pill ( you may know this better as prilosec.), a nasonex spray in each nostril, two puffs from an albuterol inhaler, and a CF source chewable vitamin. (He has this bottle left and then he has to learn how to take a giant horse pill because they have stopped making this. Once he's finished with his breakfast he gets dressed, brushes his teeth and starts his first round of treatments. Most of the time he does his vest. Sometimes we don't do it in the am, but those are generally bad tummy days. While he vests in the am he does hypertonic saline breathing treatments. Basically just very salty water he's breathing in. Once that's finished he gets to relax before school. There is a big bit of trust required between him and me here, because I leave for work after setting him up.
Once he gets to school its easy sailing until snack. He walks himself to the office and takes his 2 enzymes for snack then back to class. He's only a half day student this year. When he gets home from school, Dad feeds him lunch. Another 4 enzymes. A few hours later snack and another 2 enzymes. I get home around time for dinner, and he usually helps me cook it. He loves cooking. When we get done with the meal and sit down to eat he takes another 4 enzymes.
After a little more play time it's time to get ready for night time meds. He takes Pulmozyme breathing treatment, along with his vest again. And because he's so awesome, he takes another hypertonic saline. He then does a nasal rinse. Last year he had a sinus surgery to first and foremost remove his tonsils, adenoids, and a nasal polyp; but also to clean out his sinus passages when were ravaged with "CF disease" which basically means he was full of thick snot. His nasal rinses began after that to keep him clear. It isn't 100% effective, but does a nice job.
Now, he has yearly blood work and x-rays, but a trimonthly visit to his CF Specialists. Each year his vitamin levels, liver enzymes, and blood sugar levels among more are monitored.
Corban is pancreatic insufficient. Its been said his pancreas simply "doesn't function". This is why he takes digestive enzymes. However, he's not diabetic so I'm lead to believe it must function in small amounts. He will eventually begin dealing with Cystic Fibrosis Related Diabetes. A class of diabetes all its own. Most people don't even know it exists. Imagine my non-surprise. Most people don't even know CF exists.
Over the years, Corban's body will begin to deteriorate. Much like yours and mine, only..much sooner. He'll start to have trouble breathing. His organs will start to go. Unfortunately, I can't touch much on this tonight as it is striking me as much too painful. I promise to address this on a day when I can emotionally handle it. Tonight though, I just hurt knowing that someday I will lose the first boy I ever loved unconditionally. My first son.
Understanding why God gave us this, is beyond me. I know I'm strong enough to handle it. He gave it to me, He'll hold my hand through it. But why he saw fit to give this burden to me...of all people...I'll NEVER understand until I can hold that conversation with Him.
This is why we walk. This is why we plead. This is why I cry. This is why I love.
Please help if you can. We can cure so many other diseases. We can treat so many other diseases to extend the "normalcy"...but CF...inevitably takes over..and claims the life of the person who has it. Please visit Corban's Great Strides page and donate anything you can. This is the only chance we get to help them out. Our cure is in research. Our research is funded by donations. Unlike so many other diseases...the CFF does not get any federal funding. Your help is our tomorrow.

I hate CF..

I really really hate CF. Corban has been sick. He got sick Tuesday morning. Stomach upset, fever, chills, vomiting, headache. All of these things combined make him a sleeper. He just sleeps when he's sick. Really doesn't care to be snuggled or anything. Makes me sad.
He hasn't felt like eating, which is bad. He hasn't felt like drinking, which is bad. No dehydration needed, no weight loss needed. We can't afford it. His health can't afford it.
Today, I took the day off because we had a freak "spring storm". I'm not sure how this was a spring storm..since there is currently ice everywhere... but hey, you take what you can get. Anyway, those storms had some crazy lightning. Which woke Corban up. He kept me up a long while just talking. Telling me wonderful stories, talking about God and how He makes the rain and clouds. Reminding me how I always say that thunder is just God saying hello. But you know what o got from all of that? Snuggle time with him. He has reached a point where I'm doing well to get a kiss in the morning before I leave. Snuggles don't happen. But last nights snuggles rolled over to today. We spent the morning curled up together on the couch watching The Lion King. Rylan even joined us.
As I laid there with him though, I thought " what would I do if I didn't have this?" If God never gave me my kids what would I do? Courtleigh is very independent. Of course she's almost 9. Corban is going on 6, and while I can barely get a kiss out of him...he's by far my most affectionate child. He will tell me 1000 times a day he loves me, lay his head on my shoulder, and hug me. The other two, they're almost like best friends. They will give me hug and kiss and "love you mom" before bed and when I leave in the morning. I love my kids. I really couldn't live without them.
Which reminds me .. my days with my kids are not guaranteed. But it feels like even less so with Corban.
Y'all ... we have GOT to cure CF. I cannot bear losing any of my children. Please go to our website and donate if you can. Without donations we'll never get the cure. The CF Foundation gets no federal funding. No help.
Please help.

Things I Wish People Wouldn't Say

There really are things people should think carefully before they say.. If you're truly curious, ask in an honest "I'm curious" manner. Oh! Also, don't just assume. You know what that does. Most of us ("us" being CF parents/caregivers) are more than willing to divulge you in any and almost all information you could ever, ever want about CF.

Especially for a CF Mom like me(you know, the over-sensitive type), some things are just top notch irritants. Others will send you into a depressive spiral you haven't seen since the day you got the diagnosis. Let's review a couple. Great suggestion from my Buddy over at Real Life Parenting.

1. This is the number one offender for me, personally. "Oh, so he'll have to have special classes. Will you need special teachers for him?" Well, yes, I will need special teachers for him. But the specialty they'll require will be more likely a gentleness about them, flexibility, and sensitivity to particular signs that may or may not be unique to Corban. He will not require special classes. 

You see- Cystic Fibrosis is often confused with Cerebral Palsy. I believe because as someone who is around it daily, I probably slip and call it CF instead of outright Cystic Fibrosis. Now, I have a very very dear friend who has a grandson with CP. He is the coolest kid I've met. Aside from my own of course. However, CP and CF are two very different afflictions. They affect different areas of the body. 

So, no, Corban will not require special classes. He will require what is called an IEP, but that is mainly just to protect him as a student and me as a parent, should he need to be hospitalized (knock on wood) at any point, or fall behind due to illness. This also will address medications in school, special snack and drink provisions, among other things.

2. This one is the second most common in my life. I have heard this every single time I speak to someone about CF who isn't...in the circle if you know what I mean. "Well, I hope he gets well soon."
No. You don't understand. He's possibly as well as he'll ever be. CF is degenerative. As in, he will get worse throughout his lifetime. 

3.  "How do they fix that?" This comes in many varieties. I've heard things like, "so that's like thyroid problems" or "like diabetes with insulin". Many people assume, (there's that word again) that it's just like any other easily "fixable" issue. An ear infection, with proper treatment, goes away. CF never does. CF doesn't have a cure. (Neither does Diabetes.) It has treatments, like diabetes does with insulin. Diabetes is a great example, as it complicates CF.  With CF...you eventually end up with diabetes. Rates are around 50% of all CFers. Corban is pancreatic insufficient.. That means it doesn't work. This is where diabetes falls into place. We have been told, not when but if. Again, not cureable. CF causes deterioration over time, and inevitably claims the CFers Life. 

Our goal with the Great Strides Walk each year is to help continue to raise those funds to research cures. There are studies out there. We just need MORE. There are 2000+ mutations of the CFTR gene. We need a cure for all of them. 

So, to recap, if you don't know...just ask. I'm more than happy to share! Those are the top three offenders that have come across my path in my feeble 5 years experience. Number 3 by the way, is one that on the right day, can send me into a downward spiral.

Give Back to Cystic Fibrosis

Well, I've been trying to plug this page for a long time now, here and there.Corban's Donation Page for CF. You can go there and read a little about Corban, see his wonderful picture, and donate. Donating will help me beat Non-Stop Mom and prevent me from having to wear something absolutely hideous!

Here are a couple of other things going on here locally...

I will be at the Poker Run with Mary Kay. QuarterMania is tomorrow, I know it's short notice, I'm behind.

This is important. Print this flier and bring it with you. If anyone would like to go with me, I can create a list, and call ahead for a table. Let me know. I will be there.

Just another log in the fire....

By now you all know that my son Corban has Cystic Fibrosis. We hate it. He hates it. Society hates it. (Especially when he's having tummy troubles haha.)

Well, today, a friend of mine on Facebook shared this photo. The issue I have with this is....nobody has ever said "enlarged heart or gallstones." Maybe I've been naive? I just don't remember it EVER coming up. My heart quite literally skipped a couple of beats when I saw this.
Just another reason for us to find that cure. I know it's out there...we just have to find it.

Which reminds me that it's been a while since I plugged THIS:
A Challenge that only you can help me conquer!
Go visit this guest post on my pal Non-Stop Mom's blog and read all the way to the bottom for how you can help!
Or you can visit our team page Corban's Crusaders to donate to my team! Help us Cure Cystic Fibrosis, and help ME beat Ames in this competition, so I can make her look SILLY, and y'all know there will be pics!!!

Quest to Kindergarten

 

In my quest to ensure that my baby boy goes to Kindergarten next year, I downloaded a few apps onto my iPod. I don't have an iPad but a friend suggested that I could use my iPod for the same thing. 

Corban is lacking the skills to move on to Kindergarten from Pre-Kindergarten in the fall. He will be 6 in October. Not being able to move on with the rest of his class mates could be quite the blow to his self esteem, which sometimes lacks as it is. He has to be able to rhyme, currently he can only guess a couple if he's lucky. He has to be able to name all the letters in the alphabet. He can't even name all of the letters in his first name.  He needs to understand alliteration which also falls into rhyming. Currently, he is unable to do that, as well.

One thing about CF is that it requires treatment time. That takes about 30-45 minutes for one session. So, I set him up to multitask. The downside? The iPod sounds like poo, since it was dropped and display fell apart. My husband had it fixed for me for Christmas, but the people didn't do it correctly, so the speakers sound muffled. Secondary to this...the vest is LOUD and you're running a nebulizer. I may need to invest in some headphones for him. But, long story short...I will send my little boy to kindergarten this year.

 

Corban is my first boy. When my daughter was in school, she flew through like a breeze, and she still does wonderfully. She reads almost 2 full grades above her current grade. She is picking up math skills, and just all around doing great. I guess I had built myself up to thinking that my son would be the same way. Unfortunately, I didn't take into consideration..not only is he a he; but he is my son....and his father's son..and that combination creates this wonderfully stubborn little boy, who has the ability to be as difficult as trying to squeeze toothpaste out of a tube that has had no cap for quite some time. This has definitely been something a little against us this year. 

With any luck, this will work. Otherwise, I may enlist other troops to get it done. I heard somewhere "raising a child takes a village." Raising a child with Cystic Fibrosis, and my genetics...is going to take an ARMY.

Cystic Fibrosis- Our Story

I originally wrote this as a guest post on my dear aunt's (Non-Stop Mom's) blog. However, I feel it would be a good story to share with you. I have edited to add things as well.

 

In 2004, I gave birth to the most beautiful little girl I've ever laid eyes on. Shortly after her first birthday, her dad split. In 2005, I met my now husband. He took her on as his own, loved her, cared for her, fought for her. For 2 1/2 years it was just the three of us. In February 2007 we find out we’re expecting. Things began rocky. I had what I believe to be the worst case of morning sickness known to man. If I was awake, I was nauseated. Exercising, eating, drinking, asleep…you guessed it. When we finally got to the point to where we could find out what the sex of the baby excitement was tantamount to Christmas morning to a four year old. We both had hoped for a girl, but I figured deep down my husband would want a boy. We hear, “you see that? Looks like a turtle? That’s the penis.” It’s a boy. Much to my surprise, my husband’s face dropped. However, by the time we got home that day he was excited. “I’m going to get to teach someone to wrench on things like I do. He’ll tear his bike apart and put it back together.” There was the excitement I’d dreamed of. Fast forward four weeks, to our next appointment. “The sonogram showed some fluid retention in the kidneys, which isn’t necessarily normal, but it’s not abnormal either. We’d like to do a second sonogram.” Okay, cool. We’ll get to see his chubby little cheeks and cute button nose again. Next sonogram the normal “drink until you think if you even inhale you’ll pee your pants” happens. They take a bunch of measurements, tell you what they’re looking at, we get a couple pictures, done.  The first appointment I attended alone, the OB was out of town.  Let me tell you, there are few things I thought would ever worry me. I never imagined that I would be 25-26 weeks pregnant and terrified. I see the PA and she says, “There were still bright spots on the bowel.” I’m sorry, what?!  This is the first I’ve heard of this. “Well, there are a few things it could be. It could be nothing, or there is a 1% possibility it’s Cystic Fibrosis.” They were going to play vampire that day anyway, so I told them to test it. Now, what they were looking for is whether I was a carrier or not. I was told 7 days for labs to come back and no news is good news. The 7^th day I’m thinking, whew, we really cut that one close. 5:15 pm my phone rings. “You ARE a carrier for Cystic Fibrosis.” Crap. Now we’d have to get my husband tested, but insurance refused to pay for it, and we were too broke to pay out of pocket. We had no choice, but to hope and pray.

October 10, is my husband's birthday, we had spent the day together, and generally just had fun. We weren't due until October 27th. Well, the night quickly turned into tomorrow, and around 4 AM on October 11, I KNEW I was in labor. When my daughter woke up that morning, she was sick. I had to get her to the doctor, her appointment wasn't until 9 am. Hubby was wrenching on his brother's truck, and a repair man was coming out to work on our stove. I was also to work that afternoon, my LAST day before taking maternity leave. We made through everything, and around 11 finally headed toward the hospital. When we got there, they tried to send us home. Now, we lived about an  hour away from the hospital, so I begged for them to let me wait at least another hour. You know how hospitals work.. 2 1/2 hours later they come check me. Now we're not leaving, active labor. Good job baby boy.

October 12, 2007, Corban made a sweeping appearance at 1:36 AM. Nothing like what labor was with my daughter. This was easy. He was 7lbs in all of his beautiful glory. He had passed meconium in utero, so we thought we were out of the woods. He nursed like a pro, except he seemed to always be hungry. He nursed 45 minutes, every 45 minutes. At 10 days, he developed a cough. It took some pushing, but I finally got them to test him. He was given a sweat test that afternoon. Now, typically they say they can’t get a newborn to sweat enough for good results. I reckon he didn’t need much sweat, because he was given a “suggestive positive” two days later. The phone call came while I was gone. I was eating lunch with my mother, and she had a phone call in the office. When she came back out she said “you need to go home right now. That was Matthew.” I knew. I hit the ground. All I could say was No repeatedly.  Suggestive positive meant he could still not have it. The only problem, his number was 112 mmol/L. Suggestive positive would mean he was below 60. At 60, it’s a diagnosis. We were referred to a specialist two weeks later. They did genetic work, and they found two genes. Official diagnosis.  Delta F 508, a very common mutation and Delta I 507, more rare. He was diagnosed as Pancreatic Insufficient in the office. He went on Creon (enzyme replacement) at that point, and will be on it for the rest of his life. Today, he is going on 6 years old. He has had pneumonia twice, tonsillectomy, adenoidectomy, polypectomy, diagnosed with Distal Intestinal Obstructive Syndrome (DIOS), at one point required a PICC line, and he has digital clubbing.

Treatments are a big deal in our lives. Corban takes 3 breathing treatments once a day, and two twice a day. During those treatments he uses a vest, which is a machine that basically shakes him and breaks up the mucus in his lungs. 28 pills on average per day, and a nasty nasal rinse twice a day. Every 3 months, we take a road trip 200 miles north to see the Pulmonologist, Dietitian, Social Worker, Gastroenterologist, and Respiratory Therapist. Despite all of this, he is your typical boy.

 

Corban at 5 years old

 

 This is the equivalent to a Peak Flow, however it is computerized. It tells what volume of air he can release from his lungs. We call it, FEV1. Because it's based on 1% This time, he blew a 98%. He's been as low as 70%.

 

This is an example of digital clubbing.These are his fingers.

 

Corban's Daily Med regimen, minus miralax, and vitamin D. 

All three crazy kids!

 

 

 

We now have another son, who was born September of 2010. He does NOT have CF, but could carry it. He is a definite rival to his brother, in all that they do. Height, weight, eating, playing, wrestling, you name, they argue over it.

 

Corban will live the rest of his life battling CF. I pray strongly each day that he will beat it. His odds are good. But it’s a downhill disease. Right now, the average life expectancy for a CFer is 37.

Here’s where you come in. Each year Great Strides puts on walks all over America. Our Local walk is May 4^th. This is our chance to raise money to fund the research for the cure, as the Foundation runs solely on donation. Nearly 90 cents of every dollar raised goes directly to research.  Just visit www.cff.org/great_strides/Hollenbeck to donate on behalf of Corban’s Crusaders.

Cystic Fibrosis and How YOU can help!

Hey y'all. Great news, our clinic visit on Friday went well. Corban is up 3 lbs, and grown an inch. I got the call this morning that he grew Staph. This is normal for the last year. If he has an exacerbation, we'll get antibiotics, but he's doing GREAT!
So, that being said...not everyone is as lucky as we are. There are parents out there waiting for new lungs, waiting for test results, sitting by their child's bedside as they lose this battle. The ONLY way to stop this is with YOUR HELP!
Oh, and you can prevent me from looking like an idiot at the walk on May 4th. Click here to donate to our team, and prevent glittery hair, moomoos, pig tails, or that horrendous rainbow mohawk!!!
Non-Stop Mom: Do you really want me to look like an idiot? Here's your chance.

My Current Challenge - I need YOUR help.

Hey everyone!! i wish i were as successful in bloggyland as my favorite blogger Ames over at Non-Stop Mom. but since I'm not...go check out my guest post for her about a subject that IS my life. And as is par for Ames and myself, we upped the anty with a challenge. Spread the word!

Non-Stop Mom: Do you really want me to look like an idiot? Here's your chance.