This Man I Know

There's a man I know.

A man I have never met in person, but know wholeheartedly.

This is a man who was born into a family so poor.

A man, who's mother and father, so faithful.

This man lived a very hard life. But a purpose-filled life.

Perfection, Love, Honesty, Purity.

This man did what no one could do.

This man grew up spreading the Word of God.

He spoke to everyone, not just the "good".

He loved the worst of the worst.

This man had friends, 12 good friends to be exact.

This man was betrayed by one.

Much like we may be betrayed today.

This man, no matter the price he paid and who didn't agree with him,

still preached the Word.

Because of this man, and his Honor to the Lord, his life was taken.

His life ended at such a young age.

His life ended still loving, even those that killed him.

His life ended with followers.

His life was hard.

This man is still Alive today.

This man is Jesus.

I speak a lot about the Bible. I speak a lot about God.

Sin needs to be taken away. A new life needs to start.

To do that you need to accept the Lord and Savior in your heart.

Wash away the old, start anew.

No one will ever be perfect. That is why Jesus died for us on that cross.

We sin.

That's life.

But we are forgiven.

GOD IS REAL.

There is Heaven.

There is a Hell.

I love the Lord. Without Him, my kids would not be here, I would not have the life I do.

I trust you Lord, and I love you.

A MAN I AM PROUD TO SAY I KNOW.

Uh Oh!!

Ren woke up this morning with a sore throat. Great. She was looking for throat losanges in the house but didn't have any because of Hunter having strep and taking them all.

Please no strep for her too!!

I am calling tomorrow to set up a re-check appointment for Hunter for Friday to make sure he is rid of the strep cooties but may be making an appoinment for Ren, to get her checked. I'm going to give it until tomorrow morning to see how she is doing.

Hunter is not going to be a happy camper when he comes to realize where we are taking him on Friday. It's just another one of those very dreaded Dr's visits because of how he acts.

Hunter has been feeling better except for this morning there were the belly pains again...not just in him but Ren as well. I swear, one thing hits one kid and then it's just a matter of time for the other one. These kids are like two peas in a pod.

Questions I ask myself then:

Do they need to go poo?

Are they hungry?

So, I had and made sure they both did what they needed to do. Ren was straining, not good. I hate to see her go into a corner and it just takes everything out of her to go sometimes. Sometimes, it even makes her cry. Hunter had no problems though. So, I went ahead and gave them an extra dose of lax. Hoping for it to work.

Bellies still hurt.

I feed them. I feed them good!!! After breakfast, I ask them if their bellies and throats still hurt. Their reply, "Yes." Aaaargh.

So they are due one more dose of lax and I'm going to make it a good one. Praying Rens throat is better after she wakes from naps and both their bellies are better.

It's that guessing game that I hate on trying to figure out and weed out what can possibly be going on. Oh well. I will figure it out sooner or later. Just praying that Ren doesn't have strep but I honestly wouldn't doubt it if she did.

Cystic Fibrosis Foundation: Sweat Test

This in an informational video to show what the sweat test is and how it is used to diagnose Cystic Fibrosis. Raising awareness, one day at a time.

Cystic Fibrosis 65 Roses

Although this video brought tears to my eyes as I was watching, I KNOW for a fact that my Good Lord and Savior will bring us a cure for this disease. I have no doubt in my mind. I post these videos to bring awareness as to what Cystic Fibrosis is and what we go through on a daily basis. Help us find a cure for CF. Please go to CFF.Org and donate anything you can to go to finding a cure for the thousands of innocent children and adults suffering from this disease. Including my two children.

Thank You Lord!

So this is how much my kiddos love church. On Monday, "Mommy when do we go to church?" " 6 days dear." Tuesday, "Mommy when do we go to church?" "5 days dear." On and on.

This morning..."Mommy when do we go to church?" "Today!!" The kiddos were so very happy to be going to church. I can't even begin to explain how happy that makes me!

Other than church, nothing really eventful happened today.

We got home from church and daddy fed the kiddos lunch while I was on the phone with my mom double checking on how to make a turkey--low carb style.

Thanks mom!! :)

Making new foods scare me. A little intimidating. I think more so now, that we spend so much money on meats because of the low carb diet Brandon and I are on. I don't want to mess it up.

So, I got the turkey done. YAY!! We all actually laid down this afternoon for some afternoon snoozes and by the time we got up from naps, the turkey was smelling OH SO GOOD!!!

The meat was falling off the bone and was so delicious. I have to pat myself on the back this time. Brandon said that it tasted better than my Thanksgiving and Christmas turkey I made last year. I think that's good, right?

So tonight, just kicking back and going to play a board game with the kiddos until bedtime. I can't believe that tomorrow if Monday already. Why does it seem like the weekends are going by faster and faster?

All in all, it was a wonderful day.

All I Can Say Is WOW!!!

OK, today was a really good day. It's Friday and kids were behaving well for me today. Managed to get school in and Hunter has his first test on Monday in Bible. He has memorized 2 verses really well, among other things. Reading really coming along too.

Friday nights are grocery shopping nights and we usually grab a bite to eat at either Mc Donald's or Burger King.

Tonight...was Burger King.

No problem!! Hunter opted to go for the the Whopper Value Meal instead of the big kids meal with a toy. Shocker!!!! So we got it for him. Now, mind you not, this is a 6 year old who weighs in at 75 pounds as of last week. I didn't think he would be able to do it.

WRONG!!!

Don't EVER underestimate a child and their appetite!!!!

He finished the whole thing. MAN OH MAN!!

Ren had a big kids meal instead of a regular kids meal and she finished all of that as well.

My little chunk!

Where in the world am I going to find the money to not only keep food in the house now, but when they are teenagers!!!! Is it possible?? I pray that it is and it will be. It's hard enough now to keep food in the house until Wednesday before going back to the store for more.

I'm ok with that though. My kids are healthy, strong kids. That's all I ask for.

Way To Go Hunter!!!

What is Cystic Fibrosis? And Who Does it Affect?

Sweetly Broken - Jeremy Riddle [LYRICS]

This song is me. I hold this song very close to my heart. I love this song with all my heart and soul. I ask you to push play, close your eyes, and give everything you have to God Himself. Let him reign and surrender yourself!!

What Can I Say, Except...It's All Good.

So, good news... Hunter is started to get better each and every day. This antibiotic (omnicef) has really started to work. Treatments upon treatments and his meds, it's going really good. I just don't think the last antibiotic he was on did anything for him still had it the whole time.

Ren has been doing well too. No signs of a sore throat with her and just treatments as well.

So this is great news!!

Yesterday was kinda a rough day with Hunter not feeling well at all, but the mommy (and teacher) in me still wanted to get school in. And we did. Just not to the extent that we normally do. Today, however, was a great day in school. Today, we focused on studying the Bible. He's memorized two bible verses and did a lot of worksheets and I have actually given him "homework" to do as well. My mom kinda thinks that's funny being that he is homeschooled and having "home"work. It did make me laugh!! :)

I wanted BOTH kids to get naps in. I know with Hunter being 6, he wouldn't require one, but with him being sick with Strep, I wanted him to get his rest. They both got some really good rest in today. Yippee!!

I have been able to get some "me"time--nice and quiet, which is slim to none. Haha.

Tomorrow is Friday and I love Fridays because that just means the weekend and I get help from daddy with the kids on the weekend. Not that he doesn't help during the week, I just get to take a break (if you call it that) from everything I do during the week.

I love my hubby for all that he does and couldn't ask for anyone better that works so hard for us and takes care of us all like he does.

I am truly blessed with wonderful parents, a wonderful husband, and the best two children in the world.

Thank you Lord Jesus for all that you have given me.

So Today Was About One Thing...Bleach

This wasn't even all the toys--this was about HALF!!!!

More books--less toys!

So, Hunter has strep right?

My fear is Ren catching it.

The OCD kicked in me today.

Hubby always thought I had it since I am so concerned and worried about having a clean house.

I am one that would clean 3 times a week.

I'm not kidding, I started to think I had it. But I just think it's me wanting things clean, especially since the kids have CF.

ANYTHING AND EVERYTHING.

DIDN'T MATTER.

Well, it kicked in today-BIG TIME! I took all the kids' toys, dumped what I could into the bath, and poured bleach, a lot of it in there. I wanted to get as much of it out of the house as possible. I worked my butt off today.

Considering I just cleaned the house yesterday, since finding out Hunter has strep I cleaned it all again, and again.

Hunter woke up this morning feeling horrible. The first thing he asked for when he woke up was his antibiotic. I felt so bad for him and just wanted to take it from him.

If I could take anything away from the kids, it would be the CF. I used to pray and pray that God would just give the CF to me and let the kids live a normal, healthy life.

That's not God's plan.

These kids are going to serve a very special purpose in this world and do something amazing even having CF.

Gave treatments today between cleaning and antibiotics.

Hunter seems to be feeling better now, but I just hope and pray to God that Ren doesn't catch any of this, let along daddy or myself.

We're not sure if Hunter is a carrier of the strep or not. Not sure if the last antibiotic he was on just didn't kick it out of him or if he is just growing the bacteria and it hasn't hit the worse stage yet.

This antibiotic seems to be helping after just 3 doses. So fingers crossed.

It has been a loooong day and I am actually looking forward to putting the kids down tonight and getting a good nights rest, if that's possible.

Another Antibiotic-Different Child

So Hunter has been complaining of a sore throat since Friday.

Mommy's thinking...Here we go again.

Coughing, sore throat, not being able to sleep because of it.

He was just tested for strep about a month ago and tested positive. Given antibiotics for it and then it either came back or never left. I think it never went away. Last night was the straw for me. He had such a hard time swallowing. I called last night and left a message (with it being Sunday) with the CF Doctor. She calls me back this morning and tells me to take him to the pediatricians office. Ok, no problem. Well, she went on to tell me that there is a virus going around where it causes painful bumps in the back of the throat. Great, huh.

The weird thing is, is that Ren just got off of 14 days of omnicef for a cough that she had. I'm wondering if these kids are passing it back and forth.

Hunter was put on a different antibiotic this time, and praying that it works.

The throat swabs are the WORSE for him. Hunter has severe Dr. anxiety and this time he actually did NOT hit or kick the Dr.!!! This is huge. He still wasn't happy about it and I think if the door was open to the room he would have bolted.

So, we will see where these next 10 days take us with him being on the different antibiotic and praying that Ren does not catch this. He doesn't know it yet, but we are taking him back in 12 days to retested to make sure it is gone.

This is the first year we have had to deal with strep and it's just so weird that he tested positive again.

My kids are so used to pain that I think Hunter was hurting a lot sooner than these past few days, but, weird to say, with as much as they have been through and the pain they go through sometimes, they just live with it until they can't any longer.

I thought having babies that couldn't tell you what was wrong was bad, but it's even worse when you have kids that can talk and tell you what hurts but they don't:

USED TO BEING IN PAIN.

Fear of Drs?

Fear of needles?

Another medication?

I just wish they would tell me so I could fix their boo boos. Before it gets to the point they are hurting so much.

Asking for prayers.

Our Adenture-and YES, it was a Drs Appt.

So, Daddy worked yesterday as he always does and then had to go back in last night to work the midnight shift to have today off for

Hunters appt. Loooong day for me. I thought it would NEVER end. I lay one kid down for bed, the other gets up. Back and forth at least 3 times.

So daddy gets home this morning. Had the kids fed, diaper bag packed and DVD player charged. We were ready.

On the road by 830 for Hunters 1030 appt. We got there right on time. Sign in and he isn't even brought into a room until 1100. OK, patience mommy. The waiting room was packed. Going to be a long day.

The nurse checked his eyes, and noticed that with his left eye, he is tilting his head just a little to the left to compensate for his left eye that has the Duane's in it. His eye muscle will not move the way it should. It doesn't move unless he looks to the right without moving his head and then it shoots upwards. But, his eyesight in general, was perfect. She tells me that his eyes do need to be dilated and then after dilation, the wait would be about an hour before the Dr. calls us in to be checked.

OK, patience mommy, we can deal with that...

So the kids started getting hungry. When aren't they, honestly. No problem. I had packed PB&J for the kids to eat while we were there. NO MEDS!!!! The kids had taken their enzymes out of the diaper bag. They can't eat and they were starving. So, we resorted to a couple bags of fruit snacks for them and held them over for about 5 mins.

So, I'm thinking, we are 2 hours away from home and no meds for them to eat. We have lunch and dinner to go. Hmmmm, lovely.

So, then the lady calls Hunter in to go in for his drops. Well, Hunter in the bathroom Miss. She tells me, "It will only take a min for the drops." By that point, I was just frustrated. I'm like, "Hunter is in the BATHROOM!! You can't give him the drops now." Um, are you serious?!?!

So Hunter finally came back and was screeeeeaming when he was getting the drops put in. Hunter has extreme Dr. anxiety and this did not go well at all. Finally got them in.

I called the kids' nurse and nutritionist while we were there to see if we could just go up a couple of floors in the hospital to pick up some enzymes for the kids so they could eat. Thank you Lord, she called back and we got some meds!!! Yay!!!

The whole appt took 2 1/2 hours. It seemed more like a CF clinic visit rather than an eye appt. I drove home and it was literally back to back traffic. We were lucky to move 50 ft in 45 mins.

My stress level was high.

We finally got home around 4 and what a day. I am beat, hubby is beat, and the kids are WIRED!!!

All in all, it was a good appt. only because Hunters results came back great. We don't have to go back for another 9 months, unless of course his eyes get worse. Okay with me!!!

HOME SWEET HOME--the sweetest words I can say right now.

Stress and Anxiety

That's me in a nutshell. Stress and anxiety. I've had it pretty much since I can remember. Never thought anything of it when I was in my late teens or early twenties. Until...Hunter was born. It all started brewing. I always thought it would be something I could, myself, control...wrong.

Having a child can be stressful in itself. No doubt. I've never really told the story of how Hunter was actually diagnosed. All of it.

When Hunter was born, at that time there was no CF testing with the newborn screening, all was great. He passed the meconium ileus that he needed to, we went home. A couple days later, we noticed his skin turning a yellow color. Jaundice. He had to be put on a machine that would help control it. That got better in time. Hunter was downing 8 oz. of formula 6 or more times a day at a "newborn" stage. Never thought anything of it. Just thought he was a little porker, despite the weight gain that he was not doing. I would literally prop the bottle up in his mouth with a pillow and he would just gulp it down. Until the day came when I sat him up and EVERYTHING came flying back out. Ok. Thought maybe he just got too much at one time, or he just wasn't feeling good. Um...yeah.

Until it happened again, he was gagging. First time mom, not knowing what was going on, hubby at work, and extremely worried. Took him straight to the pediatricians office and they told us to go up to Rockford Memorial Hospital. Through the ER he went straight to the operating room. Come to find out he had a bowel obstruction, part of his intestines removed, and diagnosed with CF at that time, while staying 2 weeks up there. Stress/Anxiety was very apparent.

Ok, so got Hunter under control and then Ren. 5 times in the hospital her first year. RSV when she was 3 weeks old in the hospital on top of bleeding from the mouth. Brandon and I later figured out (NOT THE DR'S) that it was due to not enough applesauce with enzymes. Go figure, who knew?? Hunter was staying with my parents and I told them to go get him tested for RSV as well. He came up positive. So, a child in the hosp with RSV and bleeding and a son 2 hours away with my parents with RSV. Frustrating. Everything in the end came out fine, as it always does with the faith in God.

Fast forward 3 years later. A lot, granted, has happened in those 3 years and I will blog another time about the things that did happen.

I was diagnosed with having anxiety and put on meds for it for anxiety disorder just last year. Is it possible for someone who has a child with a "condition"/CF ( I don't EVER put disease because it WILL be cured) not to have stress or anxiety. I went off of my meds this week and could tell a whole world of difference. Just needed a refill, that's all, and I would rather spend that copay on the kids than myself, BUT it's something I know now I need. Today proved it. I need to take care of myself.

I HATE having to rely on meds. Thinking I can control myself. I have so much going on now, that I know a little bit of help doesn't hurt, especially if I'm taking meds for anxiety disorder.

I guess I would appreciate in knowing if I am the only one. Am I the only one that stresses about their children and the CF? I think not, but how do others deal with it?

Am I the only one that has literally a million things going on in one day and try finding the time to get it all done?? I think not.

Am I the only one who home schools their children and takes on that responsibility myself?? I think not.

Why do I feel so overwhelmed.

I CAN DO THIS

I KNOW I CAN

I wouldn't have taken on all I have if I didn't know I could.

I chose this life, I want this life, I wouldn't give this life I have up for the world itself.

Just feeling like I need to take on the world and not sure if I can.

As long as I can take care of my kids and husband that's all that matters.

Meds, treatments, homeschooling, hockey, the house, meals, naps for Ren. I know I say it a lot but you know what? I am so proud of myself for taking these on. Because I KNOW I can do it

and it benefits my family most of all.

Thanks for listening.

Much Love.

Yes, I Am Also A Teacher

So school has officially started. Started this last Monday. The kiddos are having such a great time with it as am I. Serenity has been really great about giving me the time I need to be with Hunter to teach him. I just give her something to do, as in her own homework. She loves to be included, as any child would be. Sometimes, it gets a little trying, but that's when I realize I need to find a different or new way of teaching.

I think I have found a schedule to go with, I think. At least it's working this week. I have to fit in treatments, breakfast, lunch, schooling, naps for Ren, then figure out what in the world dinner will be that night, and then hockey practice too. It's working though.

I never ever imagined I would be doing as much as I am as a mom. I wouldnt trade it for the world at all. I know my kids are safe, I know they are healthy. They are getting all they need from here at home and outside of home as well.

It's not easy by any means. Some days I just don't "feel" like doing some things. Then, I think to myself, I don't really have a choice. I NEED to. These kids depend on me for so much. I can't let them down as a teacher, nurse, etc., but most of all their mom.

The one thing I want my kids to do when they get older, is to look back and know that their mom did anything and everything for them and their benefit. I want them to be proud, most of all.

Special Moments

Tonight is a night where it's time with the family and the kids. Dinner, baths done, and now playing Dinosaurs. I love the special moments I have like this when nothing is planned but playing. Video taping the special moments to look at in the future and enjoy those special moments.
My kiddos are my life. I think that if anyone knows me or knows of me, they know this. Although I am having a hard time balancing treatments, homeschooling, the house, laundry, etc... these times are to be cherished and I don't need a clean house to do this. Cleaning is saved now for the weekends, and lucky daddy!! :)
I hope to figure out how to post video on here, because I just can't and photos (slideshow), but I will. I want to share these moments with everyone in the world.
These are two very special kiddos that God has blessed me with and it would be selfish of me not to let the world see this.
Time to be a T-Rex!!
Later y'all!!

Hunter...Something A Lot Don't Know

Sure, CF...everyone knows that my son and daughter have it. Well, those that know us anyways. With this disease, it's silent. No one knows unless you tell them.
Hunter was diagnosed at 3 months with CF but then he was diagnosed with something called Duanes Syndrome as well.
Duanes Syndrome affects the eyes. The muscles in the eye do not move the way that they should. This is occurring in his left eye. Noticed this when he was a baby, but was always told that it is normal for his eyes. They said that since he was still so young, his body needed to basically grown into itself. Well, it continued to happen. Hunter was in therapies, so many until the age of 3. Speech therapy, Developmental Therapy, and Sensory Therapy. The therapies seemed to be working, so I thought.
The speech therapy was great for him. He still has a hard time pronouncing certain letters in a word, but what kid doesn't? Or adult for that matter? Homeschooling gives me that extra time with him to work with him.
He still has sensory issues. BIG TIME. I have never seen a child scream and run when he sees a fly. Not just a little scream, SCREAMING, like something terrible has happened. We were in a restaraunt one night, the server sat us at a table by the window. Big mistake. The whole restaraunt turned and looked--he was screaming so bad we had to change tables. Is this normal? Will he ever get passed this? He is starting to affect Ren now. It's hard for because just to get in the van is a chore in itself anymore. God forbid there be a fly or mosquito in there, all hell breaks loose. No one can really understand the extent of this unless they see him going through it.
So, back to the Duanes Syndrome. Most people look at it as if it's lazy eye, but it's much worse than that. He has it in his left eye to where the muscles are so tight that when he looks to the right and up, his eye shoots up. He has to compensate for reading, playing, watching tv and position his body so. He's doing well with it to this point, but if it gets a lot worse, he will need surgery. Having surgery on the eye scares me. What if something goes wrong? What if he's worse than before it? I don't know, all these thoughts run through my mind.
His original eye Dr. last year wanted to do surgery on him that following week. We went to Childrens Hospital where they get their CF care and the Dr. there said it wasn't necessary at this point. It would be more cosmetic than anything. We see his eye getting worse when he goes through a growth spurt. Thank God for second opinions and a mothers gut instinct.
We have this Friday another routine check-up up at Childrens for Hunters Duane Syndrome. I'm praying all goes well and ask for prayers too.

A Day For the Girls

Today I am taking Ren shopping while the boys do their own thing. I think it's about time for some mommy and Ren time and that Daddy spend some time with Hunter.
You know what the weird thing is, is that when the kids are together and we are out, it's a constant "Don't do this, and dont touch that". But, when it's just one on one, they couldnt be any better. Weird. But I'll take it.
Ren and Hunter have both been feeling pretty good. Ren is still on her antibiotic (omnicef) for a cough that she was getting about a week ago. Just keeping up the treatments with both and they seem fine.
Right now as I am typing this, the kiddos are playing hockey in the house. I don't get upset because they are pretty good about not breaking anything...LOL
Daddy still sleeping as it is his morning to sleep in. We rotate Saturdays to sleep in and how I wish this morning was mine. We stayed up kinda late, well, really late last night but it was so nice to spend some time with him. Made us feel "young" again that we made it past 10. :)
I am thankful that the sun is shining and that God has blessed us all with another beautiful day to be alive. Let's make it a good one!!

Marriage: Thru The Good Times And Bad

Today marks the day that Brandon and I started dating 10 years ago. We have been married for 6.
We have been through hell and back in our marriage a couple of times. Almost lost each other a couple of times. But God made sure that whatever obstacle we were going through at the time, we stuck it out. Wasn't always pretty that's for sure.
Having Hunter up at the hospital at 3 months old and not knowing what was going on, then right into surgery, and then staying in for 2 weeks, until he was finally diagnosed with CF. We had no idea what it was or what we had to do. At that point, Hunter was put on the meds he needed to be on and has only been admitted 2 times since then. That's a blessing in itself.
Then came Ren. She was a tough one. She came early by c-section. I went thru hell with complications after that. Then, still with staples in me, we were up at Childrens with her at 2 weeks old being admitted. Now, I'm sorry, but no one knows pain unless they have to lay in a hospital chair with staples in their abdomen for 2 weeks. But...I did it and I would do it again for her. And 5 more times that first year for Ren, she was up in the hospital.
During those first 3 months of her life, nothing worked. Meds...nothing. She was always backed up. No sleep from the pain she was in. Constant vomitting. Couldnt go anywhere or do anything. Sometimes I just wanted to go outside for some fresh air and I couldnt. I will tell everyone, I NEVER want to relive those first 3 months again. It put a damper on my relationship with Brandon. We were just "living" together. Everything was about Hunter and especially Ren. We fought. Bad. We got to a point where something needed to change. We were living in a two bedroom apartment at the time. It was hard. Kids would see us fight. We were just extremely exhausted from no sleep and hospital stays and missed each other.
Fast forward 3 years and we are going strong by the grace of God. We would not be together today if it wasnt for God. I can promise you that. I need Brandon so much in my life and I love my husband with all my heart.
People always think that after they get married, it's going to be peaches and cream, smoothe sailing. And maybe for some it is, but for the majority it just doesnt happen that way. If you don't enter a marriage based on a strong foundation, trust, love, and honesty, I dont know how marriages would last otherwise. Being married is challenging a lot of times.
Lives change within a marriage, lives change when you have kids. Lives DEFINATELY change when you have kids with a condition.
But what shouldn't change or get lost is the relationship a husband and wife have. Need to stick together through the good AND the bad times. Trust in God.

I Love You Hubby of Mine With All My Heart. Happy 10th Anniversary!!

Surf Stars Offer Ocean of Support for CF Foundation – CF Foundation

Surf Stars Offer Ocean of Support for CF Foundation – CF Foundation

Cystic Fibrosis