Anything...

Anything to make my kiddos happy. As of today, and I am living for TODAY, life is good. My kids are healthy, going to the air show tomorrow, and spending time with hubby tonight. What more can I ask for. More to post tomorrow as today was none the less "normal". Besides the treaments and the meds. Love all my family and friends.

A 'Best' Hospital for Cystic Fibrosis Kids - US News and World Report

A 'Best' Hospital for Cystic Fibrosis Kids - US News and World Report

Sleep Tight Goodnite Bite

My daughters little saying as she goes to bed. She took it from Sleep Tight Don't Let the Bed Bugs bite! Last night was quite the night. Brandon had to work the midnight shift so he would be able to go to the Rockford Air Show with us this afternoon. A very long night for me to start. Laid Ren down, then Hunter. Then Ren again and then Hunter again...and again. I felt like I was going back and forth all night. Until 11 when I went in to check in on them and they were sound to sleep.
When you look at your child as they are sleeping, I swear you see them in a whole new way. So peaceful and innocent. Dreaming princess dreams and flying fighter jets. It seems as if all the wrong they did during the day didn't even matter anymore. My kids are tucked in. Safe and sound.
The kids have been quite the handful lately and makes it even harder when Brandon is working and I have to do it by myself. It makes me, honestly, give single moms out there a lot more credit. Especially if they take care of little ones at home with a condition.
I am just thankful that this is a very rare thing that I do it by myself and I do have the help of Brandon. Just for sanity sake at night time.
I've learned to kinda keep that saying, "Don't sweat the small stuff" in tha back of my mind. Things that happen during the day are bound to happen. But at night, when you see your little ones sleeping so peaceful and sound, I just thank God that they are here at home in there beds, snug as a bug.
As my daughter would say after tucking her in, sleep tight goodnite bite. Life IS good.

The Guessing Game

Yesterday was going good. Kids feeling great, no belly aches-no headaches. We left for hockey practice last night and when we got into the van after the kids were done, Hunter started to get sick. His face was flush, he was sweating profusely, complaining of his belly hurting now and his head. It's like, What the heck happened?
All through hockey he was fine.
Had to pull over twice to let him out of the van, due to the bag we had in there having a HOLE IN THE BOTTOM!! Smart huh? Check the bottom of puke bag before it's needed.
So we get home and he's no better. He goes to lay on the couch and daddy takes the stethoscope and makes sure he hears movement in his belly to make sure he's not getting backed up. He falls asleep on the couch, no dinner, nothing. Not normal for Hunter. Exhausted.
We take him up and lay him down. He throws up again. What is going on?? All these thoughts race through your mind.
Why is he throwing up? IS he getting backed up? Is he sick with a bug? Why did he shake and get all sweaty? Why was he getting headaches every day?
It's all a guessing game, especially when your child is just crying and complaining of everything hurting. Trying to figure out what is going on so you can help.
He woke up this morning, belly still a little upset. He ate very little breakfast but was able to keep it down. Have the windows open-fresh air.
Now...no belly and no headache. Poof gone.
I'm not complaining, praise God, but the heck happened?? Was it the air conditioning? Was he overheated?

Hmmm... the guessing will continue .

CF Won't Run Our Life!!--Being Grateful

I think it's just busy, busy, busy and maybe it's getting to me? I don't know. I could just crawl into bed and sleep for a while. I can't stand not being busy though. It, in a weird way, keeps me going and going.
Kids are doing treatments now and as I look at them, I love them so much. I am grateful that my kids are healthy. I am grateful that my kids aren't in the hospital. I am just grateful to have them to hold and cuddle and give kisses to. I am grateful to be able to discipline them. I am just grateful that God has blessed me with these kids. The CF could always be worse for them and they could be going through rough times, but I am so grateful that even though we have times where we do have to go to Childrens or bumping up the lax, that it doesnt last for too long. It's able to be controlled.
Growing up I always imagined having children. Always saw healthy kids being born. Very rarely did I ever see any kids with any type of disability or disease. I thought that people just had healthy kids. I had always heard that being a mom was a hard job. But honestly, until you have a child with a disease that takes your whole day TO keep healthy and give meds so they can eat, no one will ever understand how hard it is for us moms who do this on a daily basis.
But to look at my kids, I see them. I don't see CF. I know it's there, but we are fighting it and my kids live a normal life. Just have to re-adjust it for some things that's all.
There will be a cure one day and my kids will be cured. I know God is good and He does miracles. I thank God for keeping them healthy and pray that He continues to watch over them.
I could have lost both my children-Hunter once as well as Ren. My kids are miracles and a true gift from God. Thank you Lord for trusting me to be the mom You know I am and to take care of your children.

Moms Are So Busy

So yesterday was a good day. For the most part. Hunter has been complaining of an awful lot of headaches and his belly hurting. My first thought...getting backed up. His headache got better but his belly was hurting all day until this morning.
Last night, the kids had hockey practice, their first one-with a personal coach. What a difference it made. They are going twice a week now. Our next session is tomorrow night. They are so excited.
But this morning, Hunter slept until 8:45, which is anything but normal. He's an early riser. I was going to give him until 9am to wake up but he woke within that time. Being that he still had not stooled, but only once yesterday, I loaded him with lax today. It's helped and he feels so much better.
When the kiddos were on antibiotics, I backed them off of the lax because it caused diarrhea. They were doing good for a while after they finished the antis but I know now, that they need to be at what they were before. They both are on 3 capfuls of miralax a day.
Sometimes, which is really hard for me, Hunter pretends he is sick. I'm guessing for attention. Ok, so with a mom that isn't dealing with their kids having a disease, it may not be as big of deal. But, you dont do that when you have CF. Brandon and I explained the story of the "Boy Who Cried Wolf", he got it and understood it, but how does a mom know if their kid is telling the truth? From a simple headache to seriously being under the weather.
So, I just treat it as though he is telling the truth and give him what he needs of course. But now I see Ren, pulling some things. Whenever Hunter needs tylenol, she all of a sudden gets a headache or something hurts, or her tummy hurts. It really is hard.

Cystic Fibrosis

What a Wonderful Day!!

Today started out like any other Sunday. Wake up early, get breakfast in for the kiddos and us, take showers, and go to church. Today seemed somewhat different though. Looked so forward to going to church and wondering what the topic was going to be about today.
"What Lies Within". Being hurt and damaged by people but being able to cut the rope, forgive, and move on with my life even if that means the person that caused the damage never took responsibilty.
Quoted by Ralph Waldo Emmerson "What lies behind us and what lies before us are tiny matters compared to what lies within us."
Being damaged happens to everyone, by someone or something. It just depends on how you deal with the situation and let go. I learned today that if I/we are damaged, we can justify the "no relationship" with that person. But to forgive that person is the main obstacle that I have to deal with. Very touching and will be reading up on verses 2 Samuel 13-19 this week that tells about King David and his family. Very weird as it is almost like a soap opera, but it's amazing of how things back in that time, are related to every day life now.

After church we came home, ate lunch, and my parents came over. It was so great to go shopping with my mom and Serenity while the boys stayed home. Bought a lot!! Brandon just smiled. I don't get to do it very often so when I do, I go ALL out. I at least buy something for him. :) LOL

Everyone is exhausted after today. I think it will be an early night. Brandon just took the kids to WalMart to pick up a few more things for this week and I actually get alone time. It's so quiet, it's almost weird. But I like this. I need this time. More.

Kids start their personal hockey training tomorrow night. Mondays and Wednesdays for both kids. Gonna get expensive, but honestly, I dont care. It's something they love and something they are good at and I can't wait to see them grow. Excited about that starting.

Tomorrow starts a whole new week and we will see what comes upon us. I know that with the Lord by my side, it's going to be a great week!!

Money, Money, Money

Does it ever stop. Having to spend money. Um...NO!!! Our computer, which is only 3 years old and a really nice one, has been going cukoo on us. Shutting down while I am typing or doing whatever on it. Been happening for a couple of weeks now, and it was either throw the friggin thing out the window or take it to Best Buy to see what's going on. So...we opted for Best Buy. They said that the motherboard is bad and when that goes completely, the computer will be useless. Great huh. $650.00 on a computer and it's just a matter of time. Something to do with the surges. Could have been the storms. So now we are computer shopping. Most likely for a laptop instead of desktop. I NEED the computer as I do it for CF things and the kids use it for school. Not what we were expecting to hear today.
So, it's always like one thing after another. When does it stop, does it ever.
Brandon and I made it through our first week of our low carb diet and I have to say it went well. The weekends are the hardest part. Just a lot of "extra" meat, which isn't cheap, to have on this diet. So, we re-budget the budget. It's worth our health.
My discipline lately on the kids has been pretty good. We believe in spankings in our family. I grew up with them (A LOT I may add) and so did Brandon. The whole timeout thing and 1-2-3 thing we tried, but has not worked. So, I resorted to what we grew up with--spankings.
They are listening better, still have their moments...they are kids.
All, in all it's been good.
I just hate spending our savings on things that were supposed to last years. It's so frustrating because you never know what the future will hold. That's where faith comes in huh? God has always taken care of us before and has ALWAYS made sure we get and have what we need. God Bless!!

The Mom In Me Has Come Out

Ok, so I am beginning to blog more personal and about my feelings about life, kids, etc.
So here we go.
As a mom of 2 children with CF, I always thought I would never treat or raise my kids differently than any other parent to their child. I was doing so good for a while until I saw that what I was doing was going in the wrong direction. I always, and still do discipline my kids. But I have seen that they have been spoiled by me mostly. I give in a lot. A lot of times, I will take the kids to the store and buy them a toy for no reason, no more than $3 but they have gotten so used to it that they expect it now. When my parents have the kids overnight, we go to pick them up the next day, and because they were "good" they expect a toy of some sort, a "prize". This last time we didnt get them one.
I have come to realize that maybe subconciously, I WAS treating them differently and not knowing it. I would discipline but maybe not to the extreme to where they would actually "learn" from their mistake. I would buy them things without every imagining they would ever "expect" it from us or even my parents.
I guess, deep in the back of my mind, I know I could have lost my 2 kids many times but I still have them here. I guess I take in all the stories of parents losing their little ones at such an early age. I guess I just want them to live having the best and anything they wanted. But...it's not the right way.
I have come to realize that disrespect from my children is not teaching them right. I have learned that them "wanting" all the time, toys and anything else they see, and buying it for them doesnt teach them anything.
I am dealing with this not only with Hunter who is 6 but Serenity who is 3. Ren is the worst, I think. Not only because she's a girl, but I've taught her some things, like shopping and buying and having what you want.
Reality has set in this week with the kids. I can't blame anyone but myself for their actions. It's not their fault. They act on what they are taught.
My kids will know discipline. They will know how to be thankful. They will work for anything they want.
I'm sure it will still be in the back of my mind...but my kids are still here, they are so healthy, AND they will be around for a LONG time. I need to teach them the right way, not the way as to giving and giving because they have CF. They are kids, they are "normal" in my eyes. They deserve to be taught like any other child and that is what I am going to do.
So, I have started the buckeling down this week and the kids are NOT happy. I guess what I am most tired of is the disrespect. The not listening. Things they know that are right from wrong. Things are changing.
We are home all the time. Homeschooling, CF therapies, and just regular kid stuff, we are always together. They have their Sunday school and they have their hockey. They have their time with others.
So, tomorrow is a new day. I pray for strength and patience from God and for him to give me what I need to make sure these kids are thankful for every day they have.

What is Cystic Fibrosis?

Eating Healthy With 2 Children That Have CF

Sounds impossible right? Wrong. I swear by the low carb diet that Brandon and I are doing.

I hit my peek with weight. I cannot possibly, in my eyes, gain anymore. Nothing is worst than going to a clothing store, picking out a pair of pants, and none fits. Something had to be done.

Having 2 children with CF, honestly got the best of me this past year. I think, most in part, by homeschooling and the kids being home ALL day with me and me fixing their meals. A munch here, a munch there. Oh, did it all add up. The weekends are the worst though, and thing will be our first weekend on the carb diet. We have our hopes set high and know we can accomplish this.

As any parent with CF knows, the fattier the better. McDonalds was actually on our weekly meal list as well as ordering pizza over the weekend and any other day during the week I just didn't feel like cooking. I am doing this for me now. My kids will always get the things they need, I just do it in a different way. 20 carbs a day, exercise. I'm ready to lose the weight. 40 pounds and I will be on top of the world. I have to be happy with myself and within myself and lately I have just felt like a huge oompaloomp. I want my energy back, I want to be able to run and have fun with the kids without getting out of breath. I want it so bad that I am going to get it. I can see it's in reaching distance.

I HAVE TO DO SOMETHING FOR ME AND NOT GET LOST IN THE WHOLE CF THING AND STILL TAKE CARE OF MYSELF AND FEEL GOOD.

I don't anyone to get the wrong idea. My kids are still going to have McD's and fried foods and veggies/fruits. But I dont have to. I've come to realize that.

For me, this is an eye awakening. I do and do for the kids but never do anything to take care of me. Feel kinda selfish in a way. I know that I want to be around for a long time...if anything FOR my kids. Diabetes runs so high in my family. My mom is going through it right now and has lost so much weight on this diet and does not take any medications for her diabetes because she took chrage of her life. About time I do the same for myself.

If anyone wants to know more about the low-carb diet, I would be more than willing to share with you. It's not a carrots and celery diet by no means.

I have to stay around. I'll be dipped if I let food be in control of me. I am in control...I have taken control, finally.

A Total Lifestyle Change

So, today began Brandon's and my Low Carb diet and I have to say....I love it. It's a little strict but to see the outcome of it and the loss of weight I (we) will have, I can't wait. Eggs and the choice of bacon for breakfast, tortilla with chiken lunchmeat and cheese, tomato, and lettuce, and grilled chicken for dinner with a salad. Have to keep count of all the carbs, and has to stay 20 or under and I'm so proud of myself for the first day!

I want to be around a long time for my children. I am their basic "do everything to stay healthy" lifeline. I am the one that calls drs. for appts., calls insurance, homeschools, and just be a mom to 2 kids. I want to lose at least 40 pounds and I know I can do it. I know Brandon can do it.

The support I have from my parents is great. They have been there with this diet and still will continue with it. A lifestyle change. It's been so hard to feed the kiddos the foods that they need, and anyone that knows anyone with CF, it's the BEST and the fattiest foods in the world.

Today was a good day, I can't complain.

I enjoy coming on here and blogging. Writing. Letting my feelings out. Don't we all need to do that?

As for Hunter and Ren, doing very well. I can't complain and by the grace of God they are still healthy. Praise God.

Don't Get Lost In the Business Of Life

You think you have all the time in the world. You think that time is on your side. Time goes by so fast and before you know it, your kids have grown up so much you long to start it all over again. Hunter and Serenity got to spend Friday night with my parents and all day Saturday. Which in turn, allowed Brandon and I some much deserved alone time to just be together. It's so weird that when your kids are with you, you are in "parent mode", but when they are not and it's just you and hubby... It's more like "best friend" and just acting goofy mode.

Although most of the time over dinner was talk about the kids, never seems to fail, they are such a part of us that we can't just go one evening without talking about them.
Friday night we had a blast. We went to Chipotle and came home. Stayed up until about 1 or 2..which is super late for us, and had such a great time.

We went to pick the kids up at Nana and Papas that next day and it seemed like months since I saw them last. I missed them. They had such a great time and it gave my mom and dad some quality time with the kiddos.

We went to church today, and I wonder why we had never found this church before. It's our third time going and man, God is speaking to us. It's kinda funny because it's right across the street from where we used to go.

Tomorrow, Brandon and I are starting a low carb diet. Have seen so many people do it and lose so much weight. Especially my parent. I'm sorry, but my parents look good!!! I'm so proud of them. My mom has diabetes and she was so determined not to take meds/shots that she was going to lose the weight instead and she did it. My dad completely supported her on this and he lost a lot of weight as well. I just want to be healthy and have energy again. It's so hard being at home with the kids during the day and not munching here and there, but I'm ready to do this. Besides the fact that the kiddos have CF--high fatty foods and ALL the good stuff. Brandon and I kinda lost control for a while, but regaining it. Please pray for us as we go through this.

Tomorrow starts yet a whole new week. Excited to see what it brings us.

I guess what I was trying to say in the very beginning, is never lose who you are. If you are married and have children, you still need time for yourself to make you feel good and time with your hubby. Don't get lost in the business of life. Life is too short to worry about things that are already out of our control and God already has planned out.

Have fun with life and enjoy it!!

Love the Chaos

Today has been good. Kids have actually listened to me today, which makes things a lot easier. They have been very healthy and very grateful for that. Tonight, Nana and Papa, get to take the kids for an overnighter and get to spend time with them. The kids couldnt be more excited. It's weird being a mom. It's like during the day, they could drive you bananas. But when you check on them at night and they are sound to sleep, it's so beautiful. And I ALWAYS get a little sad when they are not in the house. It's always too quiet.

I love the chaos I have because without it, my kids wouldnt be here. I love the "listen to me" "get back here" and the "dont do that's". Because if I didnt have those I wouldnt have the kids.

I just thank God every day for all the great things he has done for my family and I.
I look forward to spending a nice evening with Brandon and taking the time out we need for each other. Sometimes we get lost with all that is going on throughtout the day. This will be good for us. A great way to start a great weekend.

Frustrated but OK

I am at the point to where I am so frustrated. I am trying so hard to get this CF commercial off the ground and have made so many phone calls, emails, etc. and every response I get is to either "start smaller" or "we can't do that". The feeling I have inside is to the point where I just don't get it. Why not be a part of something so great that would bring awareness and help all those out there with CF. I'm just disappointed in some people. I have to bring myself to the realization that I cannot do this on my own and control the way others think or feel. God has to lead me to the right people. I think for now, I am overwhelmed with the commercial thing. I am going to take a break and pray about it. I've contacted the local CF Chapter here in Chicago to see about doing something smaller to raise money for research. I'm just the type of person that has to do something/anything- about something that means so much to me. We will see where this takes me. I appreciate and love all the support that I have gotten from the CF community and will continue to fight, till the day I die, for a cure.

I love my kiddos to death and I look at them and am so grateful that God has blessed me with them. Life is hard, no one ever said it was ever going to be easy. But I know that as long as I have the Lord on my side and know that He is my strength, I can do it. I will do it. These kiddos deserve the best life possible and I know the He will provide.

I love my family and my CF family as well.

Life Is Good

Life definately has a lot of surprises. Many bumps in the road, obstacles to overcome, and the feeling of the worlds weight on your shoulders.
At this point in my life, I am happy. I can honestly say that I am happy. My kiddos are healthy, I have a husband that loves me very much, God has provided for us in ways we will never understand.
I look at my kids every day and I stop in awe sometimes to know that my kids are such a gift from God. God has always made sure we have what we need to keep the kids healthy and bless us with such knowledgable Drs. I know at times, I may not agree with the Drs, and a lot of times I am right with how I feel. I thank God that he gave each mother that instinct to know what your child needs and the timing He does it on.
I love my parents with all my heart and very blessed that I have them. I love my Husband and children. But above all, I love the Lord Almighty who has made it possible for me to wake up this morning and enjoy another day with my family.

God Is Great!

This was quite the busy weekend our little family had. Brandon has been out of a car since last November so we have been sharing the van. It's something we've been used to before, the one car thing, so it wasnt ALL that bad. I told him Friday night to go on a look for a car, just a shot in the dark and he ended up finding one!! We took the fam on a mini road trip as it was a couple hours away and headed up to see the car on Saturday. Brandon has a new car and I have my van back. I am so elated that now the kids and I can get out of the house and go to the park or visit Nana. :)
It was weird because the whole trip up to see the car, Hunter started complaining of belly pains. I though maybe he gets car sickness like I do. But after thinking about it, it happens on every long car ride. He doesnt want to go poo in a public bathroom. He holds it in. I couldnt believe it we figured it out. Poor kid. So we are going to make sure we have those toilet covers for him whenever we go out. He was hurting sooo bad by the time we got home. It started to concern me, because at home he is fine. It makes total sense.
We went to church yesterday and the service was amazing. The kids had a blast in their sunday schools. We can't wait to go back next week.
Today, back to Monday. Kids running me ragged, cleaning the house, laundry to do, got the kids clean. I am beat.
I am still wanting to do the commercial for CF and am actually in the midst of emails to tv stations to find someone that will tape the commercial for charity. I am asking for prayers with this because this is something I really want to accomplish for everyone out there with CF and to bring awareness.

I plan on blogging more often. Our computer has a mind of it's own and wants to work when it feels like it. Busy week this week and love to share it with you all.

Have a great Monday and God Bless.

On A New Venture

So, I have been thinking about an idea that I have had for a few days now. Only mentioned it to my parents and hubby. I am looking into and making contacts on how to get a commercial done for Cystic Fibrosis. I have prayed about it and really put some thought into it, being that life is so busy right now for me as it is. It's been pressing on my heart and I feel deeply that this is something I am meant to do. It's something that I feel people need to be aware of more so than people already do. And not very many know about it. I have ideas and can see in my mind how I want it to be done. I just pray and pray now that someone will say yes as far as taping the commercial itself for charity.
We need awareness. We need funds for research. We NEED the faces all around the world to be shown on this.
I am just asking for prayers and guidance that God takes me into the right direction and to come into contact with people that have light and open hearts to do this for the 70,000 people with CF out there that need to be heard.

On a medical note regarding the kids: Hunter is coughing now but his throat is getting better and better every day.
Serenity is still having her coughing episodes but still doing well. We did 3 treatments yesterday and doing another 3 today. Have to get the junk out of them.

Tonight is hockey practice and kids are excited about that. I actually have to contact the person that is willing to do private lessons with them and set something up for next week.

Feeling a little tired but so much to do. It's what keeps me going! :)

Clinic Visit Today

Woke the kids up this morning around 6:30 to get ready and leave by 7:30 to drive 2 hours up to Chicago for their clinic visit at Childrens. I was falling asleep in the van due to me only getting about 3 hours of sleep last night.
NOTE TO SELF: Do NOT drink Pepsi before going to bed.
We made it right on time and checked in. Went and had the kids do their PFT's.

Hunter Stats:
Lung function was 94%
In the 98% for his BMI

Ren Stats:
In the 99% for her BMI
Spo2: 97

So, we thought the kids were going to do labs today and we were so happy to find out that we could wait until the next Clinic visit in October. YAY!! It was 3 hours that we were in there for and then their Dr. tells us, "Well, since you are already here, Ren needs an updated chest x-ray." Ok I thought...better than labs. An hour and a half sitting in the waiting room for our number to be called. Ren did so well though when it came time for her to do it.
Needless to say, we were ready after that to just go. We were tired and so hungry. By the time we got home, I think it was around 4pm. So good to be home.
All in all, glad we went today, got it done with great outcomes.
Thank goodness for portable DVD players and McDonalds!!