October 11, 2013

6 years..where did it go?

It's October 11, 2013. I know to most people that's nothing significant. However, for our family...it marks the beginning of chaos. In a good way.
Daddy's birthday is October 10. In 2007, we had a simple celebration, stayed up a little later than normal...the next day i was scheduled to take maternity leave at work after a 3 hour shift. Little did I know, I wouldn't be making it to that shift.
I woke up very early on the 11th, with a belly ache. I just figured it was from being too active, so I went to take a hot bath, and relax. I looked at the clock, 4:32 am. I managed to lay down a little longer but had Sears coming to work on my stove around 8. When Courtleigh got up she had a fever. My brother in law showed up with his truck for my husband to work on, so needless to say it was already a might bit chaotic. I knew I was probably in labor. I also knew that the contractions weren't consistent and that Courtleigh NEEDED to go to the dr. So I called my mom. i told her I wasn't comfortable taking her alone just in case. But when we got to the dr's office she told the doctor "she's in labor and won't admit it."
We made it back, Courtleigh had a rough cold starting. Well stove repairman and brother in law show up by then and I decided to say something to hubby. Around noon Mom took Court, and Matt and I headed to the hospital. They wanted to send me home, we lived 45 minutes away I begged them not to. Well their hour deadline came and went quickly and by the time they made it back, congratulations you're not going home. We got a room made a couple calls, and got ready for the show. Soon i was given the option of pitocin or breaking waters. I opted for an epidural and breaking of waters. This is when we learned that Corban had "cured his own ecogenic bowel". The dr's worried he'd inhaled the meconium and warned us about it. It was about 9 pm. I napped a little, begged for food a little, napped some more and finally around 1:15 a resident came in and said they were gonna get ready. Well, by getting ready she meant get the show on the road. So I did what had to be done and before my OB could make it in the room we had a third visitor. Corban Matthew was born October 12 at 1:37 am. He had his lungs suctioned, a bunch of tests done, and they handed him to me. He was perfect. his nails had grown into his skin but i trimmed them later. For ten short days we simply got to enjoy our baby. Then he got sick.
He started a nasty cough. I took him to the pediatrician on my birthday, where we found out that in the time he should have been gaining a pound  he had lost nearly a pound and a half. The woman told me there was NO WAY this baby had Cystic Fibrosis (i knew i carried it) that he was sick because I brought him home to a sick sister. I did finally convince her to order the sweat test and at 12 days old we were told he was "suggestive positive" with 112 milliequivalents per milliliter (mEq/L). At 60, it's considered a diagnosis. October 28, he had blood work drawn to confirm what we already knew. Corban had Cystic Fibrosis. 2 more weeks later in November we knew his genes. Delta F 508, the most common mutation, and Delta I 507. This one is more rare. Confirmation. He was diagnosed with EPI, which is basically Pancreatic Insufficiency. It doesn't work. Our baby wasn't even a month old and was on medication every time he ate.
In 3 and a half hours, my Corban will be 6. Tomorrow he'll have a party with all his friends.
For me...I have always wondered why God picked me. Why did He think I was worthy? But the thought occurred to me, had he been born just ten years earlier, his chances of surviving to 6 were HALF what they are now. And 20 years earlier, his chances would have been considered nil, as the average life expectancy was 3. God didn't just pick me. He picked when, where, who.
As I tucked my 5 year old into bed tonight, I was reminded that he was made special..just for me. Nobody else on this Earth could have been his Mommy but me. And I rejoice, because I have one of the most loving little boys. He may have the stinkiest feet in the world, crusty socks, salty kisses, and sometimes a lot of gas to share..but He. Is. Mine. And I love every fiber of his being. Right down to that pesky mutated CFTR gene.
Happy 6th Birthday tomorrow, Corban. I love you to the moon and back.

August 7, 2013

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.

June 24, 2013

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.?

April 23, 2013

just junk

As my dear friend Non-Stop Mom calls it, the following will be a "brain dump". Just the random things floating through my head. They may be serious, they may not be. Just gotta get it out of my head and somewhere else.
Much like a lot of other people I went Saturday evening to Cowtown for the Civil War Days. That was fun, my husband however, didn't share my enthusiasm for the event, and did fairly well at showing it. He claims he didn't know I liked things like this...but when given the opportunity to drive to Kennesaw Mountain while we lived in Georgia with his family. I jumped. And when they wanted to climb the mountain, I went with excitement because at the top was a beautiful view, and civil war cannons. I spent a LONG time in the museum, where there were civil war artifacts. I watched the reenactment they put on, with a smile on my face and blood coursing through my veins. I love this part of history. It was so "revolutionary" for lack of a better word. It changed our path. It changed history. I love it, and I hope that someday my children will share my love of it.
I had a meeting Thursday evening, and it was during the course of this meeting and Friday morning that I realized that I've had my past all wrong. I've lived my life believing that the man I lost my virginity to, was my first love. And that must have been why I was so screwed up. However, I find that not to be the case. While yes, I did love B.D. (initials only here.) and I would have given up life for him, he was NOT my first true love. That was lust. C. E. was actually my first love. This man, he did it all. He gave me almost everything a girl could dream of. The love, the romance, the simple things, support, encouragement, and when the time came for him....he gave me freedom. All the while, I was horrible to him. I treated him so badly at the end of our relationship, that almost 12 years later...I'm ashamed of it. And I cannot apologize enough to him for how I behaved, and how I must have hurt him.
C. left a road of shoes that are hard to fill. My husband is not a romantic. He doesn't buy flowers, I sometimes think he has no feelings. He doesn't know how to show them.  I like to dance. I like to express my love in written ways. I like to quote songs. I like to feel attractive (even when I'm not). I like to be swooned. I like to FEEL important, needed, wanted. My husband isn't that person. I think he got the short end of the stick in this relationship. You see, I expected that once I found someone who would love me, and share with me, and take me on....I'd get the romance, the love, encouragement, support...the simple things. However, I married someone who isn't like that. He's not into the flowers, dancing, kissing, holding hands, snuggling on the couch, romance, THAT love. It's just not him. I don't know if it's because his dad wasn't around to show him that it was okay to do that...or if he just hates it. But it really tears me down sometimes. When I need it the most, he can't give it to me.
We have what I call a poisonous relationship. He hates me, and I hate him. He loves me (I think) and I love him (I know.) There have been events in our house lately that just make me wonder.

Off to other things. I need to get my butt in gear fundraising for CF...which is another thorn in my side. My life is just full of chaos. When I was younger I thought...being an adult would be peaceful, because I would be different than my parents. But you see, I'm just like my parents. I'm a mixture of the two of them. Every day is some kind of chaos. And not because of a schedule, but mostly because I'M in it.
So tonight, I'm going to put on my depressing playlist and just sit here and cry. I have reached my limit of able to cope well. I just cannot do it anymore.

April 16, 2013

Who Has the Positive Strep Test?

That's right. MY kid.
Corban was sick last week, Tuesday and Wednesday. He bad complained of his neck hurting but in that typical mom fashion of mine I chalked it up to sleeping weird. He is my weird sleeper.
Well today when I got home from work one of the first things he said was "My neck hurts." In a groggy almost tear filled voice.
As luck would have it, our doctor's office is open until 6. So we go racing into town (a 45 minute drive) to make it in time. Corban is tortured by the throat culture every time we go to clinic. Well since the glands are swollen behind his throat they wanted a swab. I had to hold him down. He got mad at me of course and his tears broke my heart. However when the Dr walked into the room and said "so..who has the positive strep test?" I was thankful I held him down. Apparently my children didn't get my strep genes. When I was a kid and got strep, I would complain of a sore throat and spike a fever. Not. My. Kids. No fever. No sore throat. Just straight on to all the 'side effects'. My daughter got the rash. Corban gets the gigantic lymph nodes.
Antibiotics can be our friend. I'm only happy that its just strep. I was afraid it would be much more.


I know we all know about the tragedy in Boston yesterday. I know that we're all in an uproar about it. I know that it was wrong, and that I am so mad about it, you could probably compare me to a tornado... I. am. Livid.
What in the world?! My husband was telling me some of the things he was hearing on tv. I followed it a bit yesterday. Up until the point that I found out an 8 year old had been killed. Then I was devastated and even more angry. Then this morning, on one of the briefings from CNN, i saw an article that was something like "what we know". In another area, I saw that there was a 2 year old injured. And then I read, that the 8 year old boy's mother, and sister were injured. His sister was 6. Corban's age. The 2 year old...Rylan's age. and the 8 year old...my daughter's age.
This floors me. I know that terrorists don't care who they hurt, whose life they take, and they feel no remorse. But in my heart..I'm thinking who ARE you!? How dare you!?  I want to take from them. I want to hurt them like they've hurt others. I want them to FEEL what that father feels. I want them to FEEL what other families are feeling! HOW DARE THEM!
I know..I know.. they're terrorists. They didn't care about a single person when they flew the two planes into The World Trade Center, and one into the field in Pennsylvania. They didn't care enough even about their own families, and took their own lives. I get it. I really do. They will never show remorse. But just like the man responsible for the theater shooting in Colorado, and the shooting in Arizona, or Newtown (which hit me hardest.) someone is responsible for this tragedy. And my soul wants them to pay for it. I know that they will.  Just not likely on our terms.
This is why, my friends, on more than occasion I have considered homeschooling my children. This is why I HATE watching the news, this is why I'm so paranoid about where my kids and who they're with. In my mind, they're safest with me.
I am outraged, by this mindless act. And all those people commenting on the local news story, "falseflag" and all that junk...falseflag this. PEOPLE FREAKING DIED. WHO CARES about whether it's a conspiracy. Some stupid facebook page that was "created friday", or whatever other stories you can come up with. Please stop. SHUT your fingers up, keep your nasty comments to yourself (much like Westboro can do) and let people grieve. They need to. Your nasty, hateful comments will do NO JUSTICE to the fact that three people lost their lives. One a little boy...How would you feel if someone took your little boy away? How would you feel if someone wrecklessly took your wife, and your son, and your daughter and hurt them? Would you be angry? You bet. Would you hurt? You bet. Would you want justice? YOU. BET.
Yep, this post isn't helping anyone. It's not giving you knowledge, it's not teaching you a lesson, it's not anything. It's a giant rant, from a mom, a wife, a daughter, a sister, a friend. Have compassion. Love people. Help people. Do the right thing.
Guys, all I'm saying is.... this is getting old. I heard a joke once, about a father and his kids in church. The kids are giggling and the dad whops one on the back of the head and says "Hey. God don't think stuff's funny." Folks...God doesn't think this is funny. God is crying tears just like the rest of us. His broken heart, out on his sleeve, just being trampled by careless, idiotic acts of nonsense. And this isn't about guns, it isn't about banning this and that. I just want to yell at the people who have said "well when are we going to ban bombs, and backpacks, and hoodies? when are we going to ban  *insert whatever here*. Nothing change. It will all remain the same. Violence, vigilance, and tragedy. That's what the world has come to in less than 100 years. It won't last much longer folks. Not at this rate.

April 13, 2013

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.

April 11, 2013

I found a lump..

Okay okay I know its not CF Related but CF doesn't encompass my life. I'm also a wife, a daughter, an employee, a friend.
Let me give you a little back story. In June 2012 I had a total hysterectomy. While it's referred to as "total" that merely means that my cervix was taken as well. I have one ovary. I do not take hormone replacement therapy. I LOVE my hysterectomy. There's certainly something to be said for KNOWING that you won't randomly begin bleeding like a stuck pig. Therefore I could deduce two things. I was not on or near my period, nor am I possibly pregnant.
I had noticed a tender spot one morning as I got dressed and really thought nothing of it. Until a few days later it was accompanied by a lump. I had mg husband verify I wasn't crazy. It was there. Lucky for me I was able to get in to my Dr the next afternoon. She looked, prodded, determined there was no infection and because I'm not nursing it wasn't a clogged duct. She scheduled me with an imaging office. That was today.
Now. I know that breast cancer has a history in my family. I know for sure that my grandmother had it when I was about 10 or so. So my alarms were going off to say the least. Something else I had to consider, I was blessed in this area. A little too much. I prayed about it, fretted about it and then basically just let go. If it was, it was. If not, even better.
I arrived at the clinic in my typical fashion. Running behind. They got me in quick, did the ultrasound and that was that. I learned that mammograms are not done on women under 30.
I also learned that at the moment and hopefully forever...I do NOT have any markers of breast cancer. However I should keep an eye on this "lump" that was diagnosed as "dense glandular tissue" and see my doctor should anything change or anyone else in my family be diagnosed with breast cancer. To say the least it was a relief. However, it did open my eyes.
Ladies, please do your self-exams. Please don't be afraid to look silly if you find something. The peace of mind is more than that feeling.  I don't want to diminish in any way the fact that cancer is very real. I definitely have a different sense of admiration for anyone who has gone through this or is currently going through treatment for breast cancer. You are my heroes.

April 10, 2013

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.

April 7, 2013

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.

April 5, 2013

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.

April 3, 2013

My Pizza Addiction

My reason to live really is my kids. Even though currently, they are really testing my sanity. But sometimes I think that God put me here to love Pizza.
Wednesday nights can get a little chaotic. The kids have AWANAS and I have Bible Study. I generally get home around 4:30, and would be able to get dinner done before church. Tonight, I just didn't feel like cooking, so I ordered a pizza. I was introduced to Casey's pizza as a teenager, when my family lived in a small town that didn't have a pizzeria. I learned to love it. When we moved back to our current city, we didn't have access to Casey's Pizza. I LOVE pizza. Pizza is easy, pizza is quick, and under most circumstances, I don't really have to lift a finger for pizza. The downside to pizza, though, at least in our household, is it's "gassy". Pizza is greasy. Grease equals gas in a CFer.
For a normal meal, Corban would take 4 enzymes, and that would be enough. For pizza, I typically give him 5 just to help counteract the grease. The good thing is that most times it works great. It seems that as days go by, I can find a million things to add a notch on the "Things I Despise About CF" rack. I hate that foods that I absolutely adore, give my son a tummy ache. I hate that the tummy ache means he'll have gas. I hate that I have to rub his tummy at night to help him sleep, or he'll never be able to sleep. I purely hate CF.
I love my children.
Although, quite off topic, I think they're intentionally trying to drive me insane. It's an hour before it's time for church. The boys are screaming and throwing things, and my daughter is BUGGING me about making scarves with old t-shirts. I don't think she quite understand that there are criteria that has to be met before we can do such a thing, like the shirt needs to be cotton...not spandex, or polyester. I can't wait until bed time tonight....SILENCE. Yes, that is what the Dr. ordered.

March 28, 2013

5 Things You Didn't Know...

About CF.

There's really nothing exciting going on in our household right now. Just typical day-in day-out routine. So here are 5 things you probably didn't know about CF.

1. There's a third type of diabetes.
Did you know that? Yep. CF related diabetes. Until my son was diagnosed, I had NEVER heard of it.
50% of people diagnosed with CF end up with CFRD. Oh, and...unlike types 1 & 2...they can't just help it along with insulin.

2.  They are THISCLOSE to curing CF for double Delta F 508 mutations. That would lead to the cure for all the other mutations!
The basic defect in my son's mutations is that the salt receptors are MADE, they just don't get placed where they are supposed to be, thus CF. Kalydeco, and VX809, are both aimed toward correcting that salt receptor!!

3. Every day, someone is born with CF and someone dies from CF.
Do you see why we need the cure?!

4. Salty ocean air is supposed to be great for CFers. It helps them breathe better.
It makes sense, the defect is that salt doesn't pass through the cells like it should. Hypertonic Saline is salt water with lots of salt. Please though, tell me why I live in KANSAS?

and ...  I'm going to double this one up. Because they play together.

5. 1 in 400 couples, both people carry mutated genes and don't know it. 1 in 31 people carry cf, and don't know. For every couple in which both parents are carriers, there is a 25% possibility that EVERY child they have will have Cystic Fibrosis.

Now then, visit Corban's website to donate to the Cystic Fibrosis Foundation and help make more tomorrows everyday.

March 24, 2013

Oh the sounds... of music?

One of the things about Cystic Fibrosis that really sucks...is pancreatic insufficiency. Corban needs enzymes. Today..we had a catastrophe.
After church, was the girls' tea party. We had our niece and nephew, and my daughter's half sister. Corban and my nephew went with my mother after church. Now, generally we have a stash of enzymes at any place where Corban spends a good amount of time. For those...just in case moments. Mom did have a stash. However, said stash had been depleted more than we knew.
By the time that the tea party was over and I got out there to pick him up, he had announced he was starving and eaten all the fruit he could stand. (Enzymes not required) Well he apparently just could NOT wait to eat the chili and was served a bowl without enzymes.
Now - before you chastise me... yes. He's 5. Yes there were adults present, and yes..someone could have said okay we need to resolve this. That fact is behind us as it has already happened and nobody can change it.
Corban didn't eat all of the chili...and quickly made it known that he didn't have enzymes. Under normal circumstances where he'd gotten them he would of course get gas. The difference is...the smell.

I am surrounded by testosterone. There are 3 males in my home. Gas is not abnormal. Neither is hysterically laughing about said gas. Especially not with Corban. I promise you that it is not. The chili must have been fairly fat free because the ensuing tummy ache we just knew we'd deal with.. never happened. We did experience what Corban calls his "special music". Which is not very pretty. One started tooting... and the other followed suit. A couple hours later it is now a trio with my husband 'playing' along.
The thing about a CF toot...it STINKS. He has made the house smell horrible. And as I walk by his bedroom... wow. Plug your nose.
The lesson here...maybe Corban should carry a med-pack for those just in case moments, and perhaps an air freshener.

March 19, 2013

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!!!

March 15, 2013

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.

March 14, 2013

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 7th 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 4th. 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.


Anyone who has followed me long enough, has probably noticed posts disappearing and the general look reforming.
I want to take this moment to let you in on my secret. I have decided to switch gears. This blog has always been more about my selfish rants, than about anything in particular. I could be doing so much more. So I'm going to gear this blog from now on to a collection of life as a Mother. A mom of 3, who battles not only 3 kids, but CF and a spouse who battles his own addiction.

With that being said...I'd like to reach out a little bit. I would like to do a couple of things.
  • A Q&A, with you asking, and me answering.
  • Tell me something you would like to know about Cystic Fibrosis
  • Anything else you'd like to see me write about.

Ready. Set. GO!

March 12, 2013

Stress eats away at.....

What? It certainly doesn't eat away my fat cells. Though, I wish it did.

Tonight was Parent Teacher Conferences. I knew my daughter would do great. She always does. She's almost a straight A kid. She needs to work on her listening and direction following skills, as well as her fiddling habits. Sad to say, she gets that from me. I fiddle when I listen. I cannot sit still, and it helps to draw pictures.

My eldest son on the other hand...he's a handful. Stubborn mister Corban. He's doing well, but I know he could do better, and if he doesn't...well he may not make it to Kindergarten this year. His teacher is amazing. I have the utmost respect for her, and great faith in her abilities. It's mine I question. He doesn't quite grasp rhyming. He can only name visually a handful of letters in the alphabet. When he should be able to name them all, and if not...then at least all of the ones in his first name, right? Nope. Corban has his mind set in his ways and honestly, that's my fault. Let me explain why.

The day Corban was diagnosed with Cystic Fibrosis, I was enveloped with a large feeling of guilt. In my mind, it was kind of my fault that he has it. I carried it. So that began a vicious cycle. He was taken from sleeping in his own bed until he was ill, to sleeping in our bed every night. I mean he had a bed, and he slept in it maybe 13 days until he was 3. To this day I struggle to keep him in his bed. He has a temper beyond belief. For years, I have blamed this on the medication. A prime example of this is this evening. His sister and I were working on Rhyming words with him, and he got upset because bed and baseball didn't rhyme. He repeatedly punched the couch and screamed quite literally as high pitched and loud as he could. It's so frustrating for me, since I don't know how to reprimand it the appropriate way...I don't necessarily let it go, but I can't really do anything about it without teaching him it's okay. So again, he basically gets away with it.

I know my guilt is something that I have to put aside. I have to accept that this is what God has handed me. It's really hard to do, even 5 years later.

We definitely have our work cut out for us with him..and his younger brother is watching with a learning eye.

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.

March 8, 2013

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.