Thursday, December 30, 2010

Looking Back 2010--WOW

Honestly, where does the time go? Another year gone. Kids another year older as am I. So much has happened in this last year that has brought my family through hell and back but we did it. We did it because God saw that we were going to be ok.

Hunter and Ren, neither one, was admitted this year into the hospital. The first for this to happen. They are healthy, healthy kiddos. A lot of antibiotics for the kiddos, just this time of the year.

Serenity, has learned so much through this year. Age 3. She looks up to her older brother for everything. "He" has the answers for everything. Not the case when they both get into trouble for doing something though, then it's all Hunter. lol Ren is starting to step out of her brothers shadow a bit and become her own person. A little girl who loves little girl things. Now, this is just recent, so I'm proud of her for just wearing a pink bow at this point. She loves painting her nails and putting on lip gloss. My little princess.

Hunter has been through a lot this year himself. Age 7. He has seen his baby sister grow into a little girl who is attached to his hip. Sometimes it's good...sometimes not. He is her protector and will protect her forever. He has done unbelievably well in homeschooling. Making A's and B's. And NO momma does not go easy on him. He's such a smart young boy. He has found himself. He loves to skate and play ice hockey. Now interested in Karate. Ice hockey both kiddos love and do together but I think they will have their own sport to do as well. Hunter is a lot like daddy. Loving, giving heart, who loves God. He has been nicknamed "preacher boy". He prays all the time, especially for Ren to be good. haha I couldn't be more proud of him.

Brandon and I have been through a lot this year, but have stayed strong through the hurdles. The hardest thing this last year was moving. The house we were in was mold filled. We had to get out for the kids' sake, well and ours too. Packing boxes and yet no house was even found yet. No money to move, just had what we had. God blessed us with a healthy new home and one that is even more affordable. No matter what we go through, I promise you, God has seen that we always have what we need (not what we want) and that our needs are always met.

So, looking back I can say this has been a really good year. Hard, yes. But it could have been a lot worse.

I have my wonderful husband, two healthy kiddos, a loving family. What MORE could I possibly want??

Tuesday, December 21, 2010

Amazing Grace ( My Chains are Gone)

I had to post this again. I love God and am blessed that He gave me my family and friends. Healthy kids . I love you Lord and I this song means a great deal to me personally. As I start to tear up, I know God is holding the baby that I lost, in Heaven and going to celebrate Jesus' birthday together. For all that is lost here on earth, EVERYTHING is gained in Heaven.

Wednesday, December 15, 2010

Albert King - 1981 - Born Under A Bad Sign

This is my absolute fav Blues singer...Mr. Albert King!! I love the blues. It's so amazing how much emotion is felt through blues. My choice of music for sure!! Enjoy!!

Tuesday, December 14, 2010

Clinic Visit...Not CF Clinic and What A Joke!!

So today we had an appt. about an hour away with the kids' "new" pediatrician. Even though we live that far away from their pediatrician, we opted to stay with this clinic being the nurses and Drs. know them and have known both the kids since day 1.
Today was a little interesting though. We have seen this Dr. before when their regular Doc was out, so today we had to spend $30 for the kids to be seen by him for their yearly check-up. I'm sorry, but when the kids are being seen every 3 months at the CF clinic, the last thing I'm concerned about is their peds office and being seen once a year.
Hunter asked me 3 times last night if they were getting shots at all. I said no. The fear that these kids feel with Drs. is something I will, nor most, will ever comprehend. I told them both that all we needed to do was talk. Their other Dr. decided to retire. 2nd one in 2 years.
This Dr. is definitely one that I don't prefer, but we need one so insurance will cover the kids' meds. Then a state program picks up the remaining copay, so that way there their meds don't cost a penny for us.
This Dr. has told me many times that I know more than him. Um...yeah, these ARE my kids. I know CF Dr. He tells me something that we should be doing but I will not do because we know what is best for our kids. I just nod. Uh huh, ok Doc.
He told me today that my kids are on the verge of being overweight based on their BMI. Excuse me Dr., my kids have CF and I will keep their weight on and up as long as I humanly can. My kids are not overweight, I will never see that. They're strong and they are fit and they need the "back-up fat" as I call it in case of any hospital stay or sickness. I won't back down, I don't care who it is. It upsets me a little because my kids understand what being "overweight" is. Can you please NOT say that while my kids are in front of you?? You don't understand, not one bit. Ren is 45 pounds and 3 and Hunter is 7 and weighs 77 pounds. My kids eat, nothing wrong with that. Period. But they are NOT fat.
This visit was a waste of time and money. They just wanted our money for the copay for the kids. They are in need of money. My kids are fine and healthy and here this Dr. that knows nothing about CF is telling me what I need to do. I just wanted to go.
So, the kids are fine. Went to my parents house after and saw my mom and my older brother which was nice. We are always remembering the old times and I miss the fact that we all live so far apart. But I guess that's life. At least we got to have fun with Uncle Dan before seeing him again on Christmas.
A very tiring day for us all and I think we are all just going to call it an early night. A lot of driving as it is always. But at least, if anything, the kids got what they needed and did need this appt. for their meds.
Day done and goodnight all!!

Thursday, December 9, 2010

Some Good News At Least

Hunter has been on Omnicef for two weeks now with this stuffy nose, non-draining, thing he has going on. The antibiotic FINALLY started to kick in within the past few days. Along with the antis come treatments and allergy meds as well that I think has helped. So that is GREAT news for us.

Serenity, I really don't have much to say about her but that she is doing really, really well.

Homeschooling is still a priority in this house. It has to be the best decision we have ever made. Hunter is scoring A's and B's in Math, Science, Grammar, Bible, and History. It makes me so happy that he is doing so well.

Got a call this morning from the kids' nutritionist with the results of their labs they had done a couple weeks ago. Both kids are showing low levels of Vitamin D. Out of 40, Ren scored 35 and Hunter scored 36. So now they are taking supplements for that. One more thing added to the meds list. I guess I'm just thankful that it wasn't anything major. ALTHOUGH, their next visit, which is January 18, they need to do labs again. Not good. It's so hard with all the screaming, kicking, and hitting oh and Hunter praying to Jesus that he saves him. He was crying out to Jesus that He saves him. It was the funniest thing in the world, but shows me how much he still, even at 7, how hard it is for him to be doing all of this.

I've just been so unbelievably tired this last week for some reason. I could just sleep. I just WANT to be able to sleep. So much going on. I just keep going and hubby is the sweetest thing on the weekends to let me sleep in. He knows what I have to do during the week with the kids, and maybe I'm just exhausted by the time Friday comes. I don't know. Some days are good and some are not, as with most moms. I just have to snap out of this funk I'm in and turn things around, which thanks to my mom and talking to her I am doing.

My kids are doing well. Hubby is well as am I. What more can I ask for? Well...sleep maybe.

Alvin and The Chipmunks: The Christmas Song

Love Love Love it!!

Tuesday, December 7, 2010

Time and Change

Where does the time go? Life seems to be getting more and more crazy. Treatments, meds, homeschooling, feeding them, then before I know it it's dinner time and there goes another day. These days are going by way to fast. My kids are growing up right before my eyes and the only thing I ever want them to remember is how mommy worked so stinkin hard for them and for them to be proud of me. But, it seems like there is just not enough time in the day to "just play". So, that's changing. I'm finding more one on one time with the kids and it's truly amazing how they act after. It's almost like a changed child. I think all the acting up was them wanting my attention. Although I give it to them in many different forms during the day, it's never just "mommy and me." It's nurse or school teacher. The thing I realized was that it's never to late to make that change. Yes, the light bulb came on for me!! I get so wrapped up in the things the kids need and lose focus on what they are really wanting from me. It's HARD!!
On a different note, Hunter is doing better. I think, well I know, the antibiotic (omnicef), has finally kicked in for him. And with the help of one of my really good friends (Melissa), your advice on getting the nite light vicks vapor has been going every night and now Hunter is able to sleep a good nights sleep. Ren is jealous that she doesn't have one. Thankful she doesn't need it at this point. He wakes up every morning and just says "I got sleep last night mommy." Thank God! Thanks girl!!!
Christmas is quickly approaching and I just want to remind everyone as I have to remind myself, it's NOT about the gifts or the number of gifts. The true meaning of Christmas is when God Himself gave us the gift of Jesus. That's all. Now, of course my kiddos are going to get something, don't get me wrong, but not so much this year. They will know and understand what God has given to us to save us, Jesus. We lose focus on that this time of season. I just want people in the back of their minds to keep Jesus in it and rell your children about the true meaning of Christmas. One year, Hunter and I even mad a birthday cake for Jesus!! It was the best thing.
I just want to thank everyone for their support when I am going through a really hard time. I have taken on an awful lot and trying to constantly change everything as my kids are changing. Homeschooling takes a lot. I HAVE to make sure and you better know I don't go easy on my kids when it comes to school. Hunter has been grading A's and B's, couldn't be more proud of him. Everything just takes such a toll on me that I am tired all the time and hoping for Friday when it's just Monday. I need to change my outlook on that as well AND I will.
I love my babies and I absolutely adore my husband who has stuck by me through the very thickest of thick and the thinnest of thin. Always there to provide and make sure that we have what we NEED not really WANT. He's amazing and anyone would truly be lucky to know him personally. I love you Brandon!!

Monday, November 29, 2010

What the H**l is Going On!!

So in the last post, I posted about the nasal problems we have been having with Hunter. His Dr. says it's "normal" with having CF. If it's not the gut or the lungs, now we have the nose??
So he was put on Omnicef, because of a possible sinus infection. He has been on it for a week now with no luck. First they said allergies, ok I can deal with that. But he's taking zyrtec, singulair, AND nasacort. This happens like every single year. I called the nurse this morning and she called me back this afternoon. I explained EVERYTHING that was going on and what his Dr. was wanting to do if this antibiotic didn't help. I requested maybe a different antibiotic. He can't go back on bactrum, since he's been taking it so much. I just don't understand it. She said that she would talk to the Dr. and get back to me after speaking with her. Surprise, surprise, no call back. I called her and left another message. I'm getting mad.
I also spoke to the nurse about both of the kids' culture results. Hunters, suprisingly, came back normal but now Ren had something that showed up. Don't ask me the name, all I know is that it starts with an S and she had it last September too. So she may be going on something too. It's the time of year, it's the season. It hits these kids like you wouldn't believe. But, then again, I'm sure most of you completely understand.
When he breathes through his mouth, he's ok. But when he breathes through his nose, it sounds so stuffy. Nothing drains from it though. It sounds like it is so impacted with "junk".
Please, anyone that has dealt with this, please let me know.

Friday, November 26, 2010

Kutless - Strong Tower

Need I say more?? Thank you Lord for being my Strongtower. No matter what!!! I love the Lord and not ashamed to share His word or music!!

Thursday, November 25, 2010

So Thankful!!

Plain and simple.
I am thankful for my wonderful little family, my mom and dad, my brothers and extended family. My kiddos are healthy, had a great turkey dinner tonight!! Even though my brother and his fam had been sick and my dad came down sick, it was just us. But... it was awesome!!! I made the turkey and garlic and cheese mashed potoates, we also had green bean casserole. YUM!!
I'm just thankful for my kids so much and my husband. I love them with all my heart.
And I thank the Lord above for providing us with the things we need, not necessarily want. He is good all the time.
Hope everyone else had a wonderful turkey day!!

Tuesday, November 23, 2010

Cystic Fibrosis - Awareness

God Bless my babies for being so strong and fighting the fight. God Bless all the thousands of others out there, young and old, for fighting the fight. We will find a cure. We will. God has a special purpose for my kids. God has a special purpose for everyone. They are amazing and I envy them. I look up to my kids even though they look up to me. They are both so much stronger than I will ever be.

I love you Hunter and Ren with all my heart.

Love, Mommy

What A Day!!

So a lot has happened since I was last online. We moved and love the new place. Mold free!!
I'm still homeschooling, potty training Ren now and she is doing so well. She's almost there. And just busy being a mom, adminstering meds and doing treatments.
Today was the kids' CF appt up in Chicago. 8am appt. which meant leaving here at 5:30. The only reason I made it this early was because it was a reschedule and this was the only time available before the Thanksgiving. Blah!
Hunter and Serenity both did their PFT's first and they both did really well. Talked to their Dr. about a problem with Hunter that has been an issue for the past couple of months. His sinuses have been HORRIBLE!! He's on the nasacort, zyrtec, and on singulair. His Dr. seems to think their is something going on, maybe a sinus infection. He's now on Ominef and praying this knocks it out of him. She is going to check his culture and see if pseudemonous is growing, and of course, if that's the case, he will be put on Tobi. But if the culture comes out negative and the anti isn't working, she will switch antibiotics. We have a return appt. in 6 weeks and if he is still not any better, she will refer us to an ENT. Then come to find out that his results from the PFT went from the mid 90's like they normally are down to 84. I'm concerned but know and was reassured that it could very well be something going on with his sinuses causing him to work harder when he breathes and affect him. His nose sounds full, but it is so dry. Nothing will come out. So, one step at a time. The last time he was on Tobi was when he was 3 months old. I remember it being VERY time consuming though.
Ren is doing extremely well. Both kids are in the 95% on their growth charts. I'm a proud momma and proud of us parents that kick butt to keep our kiddos at their very best.
And at the very end of the appt. we had labs. Not good. Ren had to get poked twice. Hunter started crying and screaming because Ren was. He was yelling at the lady "She's my best friend!!" Then when it was Hunters turn, when she got the needle in, he was calling out Jesus' name. "Jesus!! Jesus!!" Wanting Jesus to save him. I had to chuckle but then got "the look" from Hunter because he saw me smile. Yikes. The lady asked if he is a kicker and of course I said yes. I wonder...will they ever be ok with any of this stuff in the future?
I will post a lot more now that I am back online. Hope all is well with everyone!! Love to all my friends and family!!

Wednesday, September 29, 2010

Still In The Process

So, we have been to about 10 houses now, numerous phones calls made, and we are still looking.
Ours boxes are getting full, no new house yet.
The kiddos are excited, as I would be too if I were a kid, to get out and move to another house.
Something new. Something Healthy.
My nerves are getting the best of me right now. Stress/anxiety, frustration like you wouldn't believe.
Trying to get everything in that I need to during the day and still needing a house to live in within a couple of weeks.
It's so frustrating and I'm so stinkin tired.
But...I know what we need to do so I keep on keeping on.
We have a house tonight we are to go see at 6 and Brandon and I have been praying so hard that this is "the one." It could be. Brandon took pics of the house after work one night and the outside is very nice. I just pray the inside is just as nice.
I just want the looking to be over.
This weekend we are meeting with our landlord and will be telling him why we are leaving and on a short notice. It helps that we are on a month to month lease too. Being that he lives next door, we are going to ask his wife come too. Ask them if this is something acceptable that they would live in. I think NOT. Frankly, I don't really care. It's NOT acceptable to me.
My kids need to be healthy. I know we are doing the right thing. I just wish it didn't take so long.
The Lord has not failed us yet. The Lord will NOT fail us. He knows where we need to be and where we are going to be. I guess I would just like a "short-cut" and for Him to just tell me and skip all the other nonsense. If it was only that easy. That's where trust and faith come in. We trust Him, I trust Him.
Please pray for us.

Monday, September 27, 2010

Waiting For That Right House

This has NEVER been so hard to do. Looking for a house, a nice house, that we can afford. It seems like all the houses that I do find are in the most horrible part of town (Rockford).
I am up in the morning on the computer looking, also in the papers, and it's what I'm doing by the time it's time to go to bed at night.
And I can thank my landlord for putting us in this position. I am still upset, but moving past that and just doing now what I have to do to get us out of here. I was hoping to be out by the end of this month which is Friday, so we didnt have to pay another month's rent here. I don't think that's going to happen at this point.
I know God has a plan for us. I know there is a house out there that is healthy for us to live in. It's just a matter of waiting on God's timing and not mine. I know He has never failed us before and He's not going to start now.
It's getting colder out now and starting to wear sweatshirts and socks in the house. I will NOT turn that heat on. We have portable radiators that we spent good money on last year and looks like we will be putting them to good use until we get out of here. At least there's not 3 feet of snow on the ground...yet.
We are inviting my lovely landlord and his wife over this weekend and going to tell them we give our 30 days notice. I can't WAIT for him to ask why. We will see how that turns out.
Saturday, we are also having Hunter's 7th birthday party. I can't believe my little man is going to be 7!!! Little craziness is always good!! :) Right??
I thank the Good Lord above for keeping Hunter and Ren so healthy. I thank God for letting me have the responsibilty of taking care of His children. I have a lot to be thankful for in the midst of all that is happening. Maybe that's what God wants me to see?? I see it and I appreciate it.
Not going to be as mad the way I was last week. Don't get me wrong, I'm still upset, I just have to put that energy into finding a house. (And baking a birthday cake!!) :)

Tuesday, September 21, 2010

Being absolutely SO MAD

Is it really possible to be so mad at someone you just can't stand it?? Um...yes. And I am talking about my LANDLORD.
We have lived at this house for 2 and a half years now and it really is a beautiful country house. Everything we wanted. 3 bedrooms, 1 1/2 bath, an extra room for the kiddos play room, and an office for a price that couldn't be beat.
Promises, Promises.
Our dryer has no vent to the outside to let the air out while the dryer is going. So, where does it go but in the house. He promised us he would have a hole drilled in the side of the house to allow the ventilation to go to the outside. Never done. After 2 1/2 years. And yes we have repeatedly told him about the ventilation. His answer..."Well, it helps heat the home in the winter, hahaha." Not a friggen joke Mr. Landlord.
While I was cleaning the downstairs bathroom yesterday, I looked up. And what do I see??
All on the walls and ceiling going into the basement. Unacceptable. And the fact that he won't/hasn't done anything about makes me even more mad. Now, because of his laziness, I have to spend time (that is very hard to come by these days) to look for another house. Thanks Mr. Landlord, if that's what you want to call yourself. I took pictures of everything that is wrong with this house and the mold of course.
My kids have CF!!! He knows this. I don't care if they didn't, this is unacceptable. But they do, and I guess it makes me even more mad. He doesn't care. THESE ARE MY KIDS' LIVES YOU ARE MESSING WITH AND NOW YOU MUST MESS WITH ME!!!!
Now, I wonder if this has been causing damage to them. If it's on the walls, you know darn well, it's IN the walls. We have to be out of here before the cold weather hits because I am not turning the heat on and letting us breathe that crap in. I am so mad!!!!!
Starting to pack tonight. Haven't found a place yet, but come the end of next week we will. By November 1st we are out of here and then I am going to send in the papers I get (after contacting the Dept. of Health) and have someone actually come out and look at this house to see how bad it really is.
Unacceptable. Some, unfortunately, are just in it for the money. Sad.
Asking for prayers beyond belief and overtime here for us that we find a place withing the next week.

Sunday, September 19, 2010

Time Is Of The Essence

I was going to blog tonight, plans changed. My little girl came up to me and wrapped her arms around me and asked me to play with her. The computer has NO comparison to my babies. So, I will blog tomorrow. Hope everyone had a great weekend, we did. Some things going on with the kiddos but will let everyone know tomorrow. (They are showing sign of being "back up." Both of them. We are upping the doses of Miralax for both of them. BIG TIME.
But, for now, time for me to go. Just asking for prayers that my kiddos can get out what they need to.
Love to ALL!!

Thursday, September 16, 2010

NEEDTOBREATHE - Washed By The Water (video)

This band is amazing. This song is amazing. Take a listen. Let God in. He loves you.

Tuesday, September 14, 2010

A Parents Decision--It's OUR Decision

So... I wish I could feel comfortable enough of sending Hunter to public school. Well... I don't and I have very good reason for feeling this way. We enrolled him into a public school when he was aged 3 and in pre-school. Thought, this is great. Hunter in school, Ren will be taking naps, and I get some ME time. Well, the time comes to asking Hunter how school went. Teachers, friends, everything great. I ask him, "Did they give you your meds?" "Well, yeah mommy. I had to ask them."

NOT ACCEPTABLE!!! Especially when you put so much time into making a plan that the State is to follow to make sure any "special needs" kiddos get what they need.

This didn't happen once, twice, but on a continuous basis.

I even spoke to his teacher about this as well as the nurse. Are you serious. Can this be?? A plan that HAS to be followed by law, not be taken seriously by the Board of Education?

Yes. It happened, too, too many times. I was fed up with it. Sure, I could fight it. I could and I would have. I would have won.

I got to thinking, even if I won and the school was in the wrong, could I still trust them with my sons health.

Simple answer...NO.

This wasn't only my decision, but Brandon and I both made this one together.

Homeschooling it was. I could do it.

SSI for both kids, which meant, I don't have to work. Brandon works a full-time job and supports us very well and the insurance is excellent.

I can do this. I can and I will. So, I am.

Mornings...treatments for both. That doesn't go bad since cartoons are on.

Breakfast next, then school. Sometimes, I decide to pick up some around the house before school.

Schooling takes most of the day. Some days are better than others. It's hard to teach when your kid is sick, but I do. To an extent.

I figure, if he was in public school he would be out a long time because of a sickness. At least I am still teaching him, even when he is sick.


I home school during the summer as well. I still give them the time to have fun but even during the summer they get school.

Again...better to be ahead than behind. This helps them for when they do get sick.

Lunch comes and then naps for Ren.

School for Hunter.
Then, 2 more rounds of treatments before bedtime.

The days do get hard. (mom you know :)) The kids go outside and have extra-curricular activities to be with other kids and socialize.

I have to say that even though the decision was mine and Brandon's to home-school, never, and I mean NEVER in my life have I ever gotten so much negative feedback for doing something that we felt is right.

I'm saying certain family members, their Dr's. It got to be ridiculous.

You guys are not here every day and have to second guess if YOUR child got his meds to be able to eat that day. If he did eat, did he get his meds. If I EVER have to doubt the integrity of someone or their capabilities of watching over my children when I am not there, I'm taking them out of the situation.

I'm their mom. I am here to protect them, their health.

No one will ever understand what a parent has to go through on a daily basis with a child with a condition, let a lone 2, to make sure they get what they need to succeed in the world today.

If you're not going through it and you have something negative to say, keep it to yourself.

You don't have a clue.

My children are our lives and I will make sure, with all that I have, that they will be the most successful in whatever they want to do.

Friday, September 10, 2010


Websters Definition: A composition in verse or prose intended to portray life or character or to tell a story usually involving conflicts and emotions through action and dialogue and typically designed for theatrical performance.
Drama is everywhere. EVERYWHERE.
I remember growing up and being in school and drama consisted of who's talking behind who's back and who's making up lies to make themself look and make themself look better.
You know what I finally realized?
No matter how old you are or where you are at, someone is continously causing drama.
It never goes away.
People tend to think a way of themself. Some have this picture in their head of who they are but aren not. Some, even put themself on a pedistal, higher than everyone else--thinking they are better than everyone else around them. Some continuously live a life of nothing but lies.
Lies...they believe.
Maybe it was the way they were brought up and taught as a child and live that life today as an adult.
It is something that affects a person/people in a way that changes them forever. You can pretend not listen or just turn away. But... it is still with you because words you can't take back.
I honestly believe that with some, they are perfect in their own eyes. The only way they can stay that way is to cause drama with others to make them feel better about themself.
This is something that WILL ruin a relationship over time.
A person can only take so much.
The word is Drama. It should be called LIES!!!
These are people that will live lonely lives, thinking that they are in no wrong. They are perfect. They believe their lies.
I feel for these people. These are people that are going to be by themself one day, thinking, where are all the people that once loved me and listened to me?
What happened.
Answer: DRAMA

Tuesday, September 7, 2010

Just Over It Already

So, the family is still sick.
Hunter was put on Cipro Saturday and he has had side effects that people don't normally get. He gets really intense nightmares. He woke up Saturday night screaming at the top of our stairs, while Brandon and I were downstairs, crying too. We go up to find out he was still sleeping but awake. His response to why he was up..."I need to check on Ren". Ok, I went into Ren's room to make sure she was ok and daddy laid him back down. Later that night, around 2:30 or so in the morning, he comes running into our room screaming again. What the heck is going on?? Laid him back down. Same thing happened Sunday night as well as last night. I called his Dr. and she said in all her years she has never had a call about nightmare being associated with Cipro. Um, well excuse Miss nurse, our kids have been firsts for an awful lot of things with that hospital and CF. The Dr. wants him off Cipro for a few days and put back on Nasacort to see if maybe it's post-nasal drip that is causing his coughing. So that's where we're at at this point. We will see if he sleeps through the night tonight being off the Cipro.
Ren, is all congestion and coughing from time to time.
I as well as daddy are in the same boat with this stinkin cough and the nasal congestion. I have been sick now for 5 days and wondering how long this will last.
We were sick and didnt do a whole lot of anything over the holiday weekend. We were to go to my mom and dads to celebrated my mom's birthday but had to postpone that. Miss them and I was so diappointed that this happened. I'm praying this weekend we will be able to get together.
I'm just ready for us all to be over this already.
I'm hoping for the post tomorrow will be some happier news.
All in all, we are all ok and no kiddos in the hospital with any respiratory problems because of whatever this is. So, that is good.
Dear God, please cut us a break. Please just let us all get better. Please comfort us tonight and let us all get a good nights sleep that we are so in need of. We trust You Lord. In Jesus' name, Amen.

Thursday, September 2, 2010

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.


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.


Tuesday, August 31, 2010

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.

Monday, August 30, 2010

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.

Sunday, August 29, 2010

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.

Friday, August 27, 2010

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.


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?

Thursday, August 26, 2010

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.

Tuesday, August 24, 2010

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.



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.

Monday, August 23, 2010

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:
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.

Friday, August 20, 2010

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.

Thursday, August 19, 2010

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 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.

Wednesday, August 18, 2010

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.

Tuesday, August 17, 2010

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!!

Monday, August 16, 2010

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.