March 24, 2015

How Should We Stride In 2015?!

It's March! That means we are literally about thirty days away from the Great Strides Walk for Cystic Fibrosis. This is the walk that every year is put on in multiple locations all over the United States to raise money for research to cure C.F. Why, you ask? Well for one, Cystic Fibrosis has no cure. Secondly, the Foundation gets ZERO funding from the government. That's right, I said ZERO. Every bit of research done is done by donation funding. For our specific Cystic Fibrosis story please Click Here.
Two years ago my aunt Non-Stop Mom and I did a competition to see who could raise the most money, and I ultimately won. She did the walk with a multicolored Mohawk, a Dallas Cowboys jersey, and the words "I lost the bet" on her forehead. I don't remember the totals. However, this year we have committed to do it again and better!! I'm hoping to make this an every year event.

We need your help to come up with a better wager! There are only two items that have already been given the NO. Shaving heads, and karaoke. Everything else is up for consideration! Please help up come up with a great wager for this year!

February 12, 2014

My Inspirational Ink

Since the day my first child was born, I knew I wanted tattoos to always remind me of them. My ink interest started young though. It must be genetic because my brother is into it too!
My first ink was placed February 28, 2007. I picked something I liked. Something I thought I knew the meaning of. I don't know if it means what I thought. I'm actually afraid to find out. On the trip home from the appointment, my husband (then boyfriend), bet me money I was pregnant. I just knew I wasn't. Boy I'm glad I didn't take that bet. Because I was. What I didn't know was where life would take me.
The day Corban was diagnosed, I knew that my next ink would be something symbolic to this new journey. It took me 6 years to get there, and I'm pretty sure that I'm not finished. So after years of being sure that I wanted Corban's newborn foot print being held by a purple ribbon on top of my foot with the words Cure Cystic Fibrosis placed along the length of my foot, I set my sights on finally getting my CF Ink.
One day, while browsing Pinterest I came across a tattoo that just stuck with me. It was simple, yet "elegant".  I knew it was the one the moment I saw it. I remembered years back, and my father and my brother had the family crest put on their arm. I didn't take part though they asked. So I asked my Dad to share this with me. After several times of asking he finally agreed. So just after Thanksgiving, we committed and went to get it done. So my father, my step-mother and myself all share a special tattoo. We had the word Breathe tattooed in the infinity symbol. Jackie and I got it on our left wrist and Dad got it on the top of his hand.
I have so many more in mind for awareness, for memories, for myself. I can admit that I too, fell victim to the one is never enough trap.
So in honor if my inked friends are the two tattoos I have. Even if the first one doesn't mean what I thought it did.

January 31, 2014

It's about time I get better at this

I have seriously dropped the ball here. Maybe I'd have a better handle on life if I actually used the outlets available to me.
Corban has been doing well. We still have bouts with his DIOS. Latest being last night. We have made it halfway through winter and he's only caught pink eye, and a 24 hour bug. He has lost two teeth and has two more loose. They may end up being pulled if they don't come out soon. The adult teeth aren't just shoving them out. Bot surprising since they've been knocked loose 3 times in the last 3 years lol. 
It's coming up on follow up time for his polyps and sinus surgery 2 years ago. March we'll go have a visit with the ENT to see if his polyp warrants removal yet. But before that, we'll have c.f. clinic. Or is it after? I forget.
Something I think someone should develop..odor eaters for little boys. Holy stinky toes.
I'm going to try and get better with this!
Help me with some ideas, what would you like to see here?

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 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 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 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. 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.