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!!

Some Great News!

Yesterday was a really great day for us! We went to a new church and we ALL felt really comfortable and at home there. Hunter had a blast in his Class and met some new friends. Serenity, being that her eye was still really swollen from the bee sting on Saturday and doped up on Benedryl went with us into "Big Church" and did really well for us. We brought a coloring book for her and that kept her busy for the most part. She was clapping and singing to the music, it was great. August 12, Chris Tomlin is coming to our church for a concert and cant wait!! Love him so much.
Brandon posted on Craigslist his car that he was trying to sell and got 11 hits for it. We had put so much money into his car and then to find out it had a cracked engine. We just couldnt afford 3000 to put into it after what we already did. He sold it last night!! We are so happy and we can put that money towards another car for him and I can get my van back!
Health wise for the kiddos:
Serenity is doing a lot better. She is still on her antibiotic for her cough but doing well.
Hunter's throat still hurts being that he has strep. I really dont know if the antis are working or not. Going to give it today and if not any better, I will ask the Dr. for a different antibiotic.
We have our regular clinic visit tomorrow up at Childrens so that will make for a very long day. Labs this time and it's going to be hard, considering Hunter pushes the Dr. just for a throat culture.
I will update tomorrow on the kids and the clinic visit.

Interesting but a Great Day!!!

Everything was great today. My parents came over, cooked out and had a really great visit. Perfect day to grill and be outside. The kids were able to play in the sprinkler and just have fun.

So, we were eating and shortly after we were eating, Ren started SCREAMING!!! And then Hunter started screaming. Then I jumped up and was not sure what was going on. A yellowjacket had stung Ren right by her right eye. The stupid bee was following her and then Hunter and then it was coming after me! Stupid bees.

So, we had to all come inside. Ren's eye started to swell and that's when I called the pharmacist. She said to give a dose of Benedryl and Motrin. And of course, no benedryl in the house, due to the fact the kids can't really have it because it dries up the secretions in them, and I had already given her tylenol. Aaaargh.

Then I called up to the on-call Dr. at Childrens and she was so sweet. Love Dr. Nevin. Apparently when she was younger she had stepped into a hive of yellowjackets. Ouch!!! She said that I was right about the Benedryl but she is having an allergic reaction to the sting being she was swelling up and to go ahead and give her some. I did and the swelling has gone down but she still looks like she got punched in the eye. She's feeling better though and that's all that really counts. Always something in the Kunkel house!! :)

We had a great time with my parents and really glad they came over. Don't get to see them very much even though we live only a half hour away. Just things get so busy. Life is busy, for everyone. I miss them at the same time though.

Going to a new church tomorrow. I'm really hoping this one is right for us. It sounds like it is. We are going to get there a little early to talk to the Childrens teachers and make sure they are aware of the kids' CF and that they can't eat any snacks unless it's Cheerios or something of that nature. I hope and pray they respect us and remember, most of all.

Hoping everyone has a great weekend and enjoys the nice weather while it lasts. Storms for the next 5/6 days. Ugh.

Love my parents and love my family.

Another Antibiotic

Ok...Today was quite the day. I have been trying to get back into homeschooling Hunter over the summer to get ahead in 1st grade. A little difficult now that Serenity is getting older. Running around, wanting my attention constantly because I am focused on Hunter. It gets quite trying at times. I have tried to give her things to do. Color, watch a movie, even playing games on the computer. This morning, I decided with the type of morning it was turning into to not do school today. I have decided, which I probably should have a long time ago, to do school while Ren naps now.
This morning started out with me trying to pay bills. Hunter was still sleeping and Ren was already up. I didn't hear her, but found her in the kitchen at the sink. There was water EVERYWHERE, going from the sink to the fridge. I just wish I had 2 minutes to just even pay bills.
Then Hunter wakes up. He had been complaining of a sore throat for the past 2 days and had to take him to Drs. Took him in and they did a throat culture. This kid has severe Dr. anxiety. He pushed the Dr. this time. At CF clinics, he has actually kicked and hit the nurses and Drs when they go in for a culture or labs. I am not able to take the kids by myself to the Dr. I wish I was because then Brandon wouldnt have to take off work. They did a strep test and it came back positive. He's on an antibiotic now as is Ren for her coughing. This is the first time he has gotten strep.
What I'm dreading is the clinic visit on Tuesday at Childrens. Labs this time and it is so hard to get a needle and blood from Hunter. And what makes it worse is that Ren sees him and then she starts flipping out. I can hold her down though. It takes 2 or 3 people to hold Hunter down for labs. This will make for a long day as they will do PFT's and there normal CF team visit.
We live 2 hours away from the hospital and I can't stress how long it is.
So, all in all, the Dr. at the pediatricians office was ok with everything that happened. They tend to understand our situation as we are the only ones that have children with CF that are seen there. They literally are taken aback when they see the Kunkel name on the schedule because they know what they are up against.
So, needless to say, early night for the kids and probably me too.
It's just been very stressful for me lately. I have to figure out a way to get the kids listen (if that's even possible) I'm tired of the disrespect--figure out the homeschooling thing, make sure the kids get their treatments in, be a housewife and everything else.
I know God doesnt put on us what we cannot handle, so I know I can do it. I just need to find a way.

Just a little extra help

Today was a very long day. School with Hunter was very trying as Serenity was in everything and a lot of distractions. Going to make out a schedule this weeken to try and get structure and order in the house--especially during homeschooling. Hunter is doing very well though and is on his way!
Tonight we took the kiddos to hockey practice. Both did awesome, however a little more help would not hurt. I requested to speak to someone about private lessons and got a really good price for some one on one time with an instructor.
Serenity starts her antibiotic tonight--omnicef--for a cough she has had for the past few days. It's weird because it comes and goes. Her doctor just wants her on and antbiotic as a precaution and to get rid of all the bad stuff.
I am going to half to call up to the Hospital again tomorrow to get Hunter on something if his throat doesnt get any better. I really wish he would tell me when he starts to not feel well instead of telling me a day into it. He said he scratched his throat while eating a chip. Hmmm...is it a ploy or not? Going to see what the Dr. says anyways. Better to be safe than sorry in my book.
Not a whole lot more went on today. Just really tired and ready to call it a night already.

Tomorrow, another beautiful day and will see what God has in store for us!!

Breathe Easy

Today was Connor Jones' day to be laid to rest. God called him home and he is breathing easy now and has his angel wings. I continuously pray for the Jones' Family for their loss.

Connor, without even knowing us, has touched our lives in so many ways. Especially me as being a mom to 2 CF kiddos. He has taught me to see the good in everything, he has taught me strength, he has taught me to live life to the fullest, and he has taught me to love those around me. He has touched thousands of people, people he doesnt even know...until now.

As a mom, I have learned to look at my kids and thank God for another day with them. I have learned to hug harder and give an extra kiss. I have learned that my kids are fighters and they don't even know it. To go through what they have been through - Hunter surgery at 3 months old, numerous hospital stays, many pokes with a needle, and Serenity--even more hospital stays (6 in her first year of life) many pokes with the a needle, I know my kids can do this. They know they can do this. Above all, God will do this for them.

I thank God that he brought Connor here. Even though he may be in heaven, he is still here with so many people in our hearts. He is truly and angel and deserves those wings. Breathe easy Connorman, and know that you will be missed by thousands.

Why the Deceivement

When I went onto facebook last night, I was appalled by what I was reading. One of my friends had let people in the CF community know that there was a person out there that was taking not only photos of her daughter and her meds but lying about the fact that she had a child with CF. This not only hurts but is unimaginable to know that someone would go to these lengths to get attention.

Living with CF is no joke. Nor should it be taken lightly as if it's the common cold. So many innocent children and adults lose their lives to this disease every day. And to have someone take someone else' pictures????

Why can't people just be understand that they are given one life and one life only. Be thankful for what you do have, sickness or not. I dont understand this person. Get a different hobby. Stay off of facebook to where people actually ARE friends and can use it as a good source of information.

I have to live with this disease along with my children. What they have to go through every single day just to eat, so many take for granted.

Don't go wishing you had the life of someone else. Don't go pretending to have a life you don't have. Be happy with what you have. God has given you this one life to make the best of it.

First For Everything

So, yesterday we were able to go to my mom and dads house for a really great visit. Mom and I went to a few garage sales and I was able to get a lot of things for the house.
We haven't been to church in a great while and was planning on going back to one we were going to last year, but when we got there...there were only 3 cars in the parking lot. We knew they had a Saturday night service, which is ideal for us, but come to find out no childcare/Sunday School for the kiddos. We were bummed, big time. So looking for another. Finding a church is the hardest thing to do. I want to make sure that not only do the kids have a great time and taken care of (meds, etc. when they are having a snack) but also somewhere where Brandon and I can really learn from.

But today was the kicker. We took the kids for the very FIRST time to the movie theater. We went to go see Toy Story 3 in 3D and the kids schocked both Brandon and I. They sat in their seats and wore their glasses to see the movie and did so well.
Bought Hunter some popcorn that was gone in literally 10 mins. and Ren her own candy and they thought this was the greatest thing. We were nervous about taking them, only because we never had in the past. Now that Ren is 3--she is definately old enough and behaved surprisingly well. Although it was expensive, it was so worth it. I think the last time I was at a movie was 6 years ago while Hunter was in the hospital for the second week after his surgery. A lot has changed since then--mostly the prices lol.

Serenity went without a nap today and having a really hard time with her tonight. Not wanting to eat, crying, and actually wanting to go to bed. We managed to get food in her and bedtime in a bit.

All in all, it was a really good weekend. Not quite sure on what this week holds for us, but I am ready for it.

Tomorrow, starting homeschooling with Hunter again and hopefully getting Ren potty trained. We were so close with Ren a couple weeks back, but had a setback due to her body not agreeing with the Creon and having to go on Miralax a lot. But now, we will conquer it. (praying)

Lord, we just ask that you watch over us tonight and the week to come. We ask for guidance, strength and patience for mommy :) We trust in you Lord with all our hearts and love you so much. Thank you for keeping us healthy and we just ask that you continue to keep us healthy. We ask that you watch over all the sick ones out there and bring comfort and strength to them. We trust you. We love you. In Jesus' name...Amen.

The Bag O' Meds

Going to go out to dinner tonight with my beautiful family and then make a pit-stop at Target pharmacy to get Hunter and Ren their meds.
It's amazing to go out to dinner and bust out the bag of meds. The reactions we get from people is overwhelming. There has only been one woman that has ever asked me "why" they take them.
People, instead of the daunting stares and hush hush of the talking (that we can still hear) why dont you ask. If people would just ask, I would be more than willing to not only explain the numerous meds they have to take but also inform them of this disease, Cystic Fibrosis.
We just do what we have to do and if it doesnt bother me, it wont bother the kids. This is who they are. This is all they know. Nothing wrong with it.
I am so proud of my children in the way that they take their meds the way that they do. They are so much stronger than I ever could imagine being.
There WILL be a cure. We need to keep praying. To think of a day where the kids would no longer have to take 12-15 meds a day just to eat and stay healthy is unimaginable at this point...BUT POSSIBLE.
I am going to stay positive for my children. They feed their energy off of me.
God is good. God is great. He can perform miracles. This I know. This my husband knows. This my children know. They are going to be taken care of no matter what. Jesus Loves Them and they know it.
I love my babies.

Death-So Final

Tonight, my mom called me and told me that one of my cats at home had to be put down. She was in so much pain and so old. It was kidney failure on top of blindness. I know she may be just a cat to some, but she was a part of the family. My cat, B.B., past away a few years ago, and was so hard on me. I think the hardest part with Sissy passing, is that Hunter had grown so attached to her. He was crying and praying to Jesus that he take care of her. He is writing a letter tonight to Sissy and wanting Jesus to come tonight and take it to her.

Death, is so final.

I am at a place in my life where I trust God with everything I have. Especially my kids with them having CF.

I don't understand though, and never will, why some go through so much pain. It's not fair. It never is. I see so many of my friends who are parents of children that have lost their kids to CF and it breaks my heart. Why? Why children??

The only thing I know is that the Lord has a bigger plan for them. Something, we here on Earth, will never understand.

Even though it was my cat that we lost tonight, she was a loved one who was part of the family, just like any child.

My heart just aches. It aches for my parents. It aches for Hunter. It aches for Me. It just aches. I am sad.

I ask the Lord for understanding and strength.

My Kiddos

This is going to be the first blog of many to come.
Just to update on the kids:
Serenity was taken off of Creon last Saturday and put on Zenpep. So far, she has been doing pretty well. Her stools are still a little thick but at least her tummy doesnt hurt like it did.
Hunter will be getting off the Ultrase that he was put back on in about a month to go onto Zenpep. He was on Creon and that did not work for him either.
I get so mad at the FDA for not approving the pancrecarb and ultrase that so many people with CF were using. For so many, those were the only enzymes that would work. I just dont understand it, I never will. All I can do is pray about it, that they do eventually get approved, and do the best I can do to keep these kiddos healthy.