Albert King / Cold Feet

The Legend.

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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!!

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!!

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!!

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!!

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.

I HATE THIS. I HATE CF.

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!!

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!!

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!!

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.

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!!) :)

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??

MOLD!!!!

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.

UNACCEPTABLE.

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!!

NEEDTOBREATHE - Washed By The Water (video)

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

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 REFUSE FOR MY CHILDREN TO GET BEHIND.

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.

DRAMA

DRAMA:

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.

Drama.

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.

Drama.

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.

Drama.

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

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.