Clinic Visit

Nicholas went to Chapel Hill today. I wish I could say that he got a good report. His weight was 108 (at 5′ 10 and 3/4″ that’s not too good) and his lung function has dropped to 38%. They got a sputum culture, but we’re going to have to wait until Monday to see what he’s growing.

He had a long talk with the doctor and they are going to put him on Homebound for a month. They also talked about long term homebound. Thank you all so much for the prayers you have already sent up. We seem to need them more and more these days. We will keep in touch..

We Had Some Awesome Visitors Today!!!

Some members of the UNC Tarheel football team stopped by to say “Hello” and “Happy Birthday!”  It was awesome!!!

Birthday Pictures

Wanted to share some pictures from yesterday.  Thanks for all the cards everyone!

Updates

Ok…so Nicholas went down this afternoon for his lung function test.  It was up to 54% from 37% a week ago.  I am so relieved that he is getting better.  We are so thankful…that thirty-seven percent scared me a little. 

He’s had a great birthday considering he is in the hospital.  The nurses decorated his door with a sign and balloons.  He got a BUNCH of cards and he has just had a great day.  The cafeteria staff gave him a birthday cake.  My mama went up to visit with my niece and nephew and I think he really enjoyed that.  She took him stuff to eat too.

And I am happy to report that Monica went home today.  We also have another praise…our preacher’s wife, Rosa, had surgery to remove a tumor from her brain today at Duke.  She came through the surgery just great, the doctors got all of the tumor out, and they say that it wasn’t cancerous.  Isn’t God just a wonderful God?  We have had some much good news today. 

I have taken the day off tomorrow so I can go up to the hospital for the weekend.  Can’t wait to see my boys.  Thanks for checking in, for the prayers, and for the cards that Nicholas has recieved.  He told me that he has gotten 37 as of this afternoon.  That is just awesome!  🙂  You guys are the best!

Thursday, November 5th

Today is Nicholas’ 17th birthday.  It is amazing how fast the years have flown by.  It seems only yesterday we were pulling him around in a wagon for entertianment…now he’s driving us around.  When I really sit down and think about it, I feel like I have missed his growing up.  We have all been so busy with school, work, and trying to get through day by day with his illness, that the years are gone and we can’t get them back.

This realization just makes me want to cherish each moment even more.  He is growing up, he needs us less, and that will not change.  It will only get worse for John and I as parents.  While we realize he is growing up and he is becoming more independent, we still know that he is our son and we want to do everything we can for him.  I guess that is the case with all parents.  I don’t even want to think about the fact that my baby girl is 14 and a freshman in high school.  Then that makes me realize that OMG Nicholas is going to be graduating from high school next year!!!  Wow…

So the word from the Hill is that everything is progressing along.  Nicholas is going to be doing a lung function test today so we are praying that his numbers are WAY up from the 37 % he went in with.  Sorry I haven’t posted in a couple of days.  It is hard to post sometimes when I’m not there and I have limited conversations…  🙂  Anyway, as soon as I hear the results of the lung function test, I will post again.

Happy Birthday Nicholas!!  We love you!

Pick me Up

Nicholas has a little pick me up… 🙂

Checking In

It’s been a while since I posted, so I thought I would let you guys know what is going on with Nick.

He has had a REALLY great start to the school year.  He has been struggling with a sinus infection for a few weeks, but he is getting better.  We actually went and played tennis last night. 

He went to Chapel Hill on Wednesday – his weight and his lung function were down, but we contribute that to the sinus infection. 

He has a new special “friend.”  Her name is Ashley and she is good medicine for him. 

We are all busy with life…John is working hard, as usual.  After a long, wonderful life of service, his truck passed away and we had to purchase a new car.

Miranda just celebrated her 14th birthday.  She got an electric, acoustic Fender.  It is solid cedar and it is gorgeous!   

I started work in my new job as a 7th grade Language Arts and Social Studies teacher at  the middle school I attended.  It is so wonderful to be back where I grew up.  I am actually teaching the children of some of the people I went to school with – and that is hilarious.  You can look at some them coming down the hallway and be able to say, “Hey!  I know exactly who your mama or daddy is.”  🙂

Brian and Heather are doing well also.  Heather has a new job and is LOVING it and it is so hard to believe that Kailey will be a year old in a few days.  She is growing up SO fast.

SO…we are all doing well.  We haven’t fallen off the face of the earth.  I have just been so busy.  I’m going to try to do better.  If you have a Facebook, look me up and friend me.  You can definitely keep up that way.  We are so thankful that Nicholas is well and that everything is going along smoothly.  Thanks for checking in.

The 4th of July

Everybody always likes the 4th of July holiday.  After all, we are celebrating the Independence of our country…right? Some people have birthdays on this day so that gives them something extra special to celebrate.  By the way, happy birthday Nancy!  I love you!

The 4th of July holiday holds something different for me.  Fifteen years ago today, John and I were at Pitt Memorial Hospital with Nicholas.  We had been agonizing for months; wondering what was wrong with our precious little baby.  Due to my suspicions as a mother of what he may have, we had been through several doctors and were feeling helplessly at the end of our ropes.  We could see that Nicholas was getting worse and no one would listen to us.  We were not in a relationship with Jesus Christ at the time so we had no peace…no comfort. 

After 6 months of trying to get a doctor that would test Nicholas for cystic fibrosis (cf), Dr. Taylor came in the room at 1pm on July 4th, 1994 and told us what I knew all along.  Nicholas had cystic fibrosis.  See what I didn’t realize was that even though we were not acknowledging that God was in our lives, He was there all along.  He had been with me my whole life preparing me for what we were about to go through as a family. 

Most of you know that my mama and daddy had been foster parents while I was growing up and we had Amie with us for a while.  She had cf and we learned all about the disease, medications, and physical therapy with her.  You can read more here (You should start at the bottom and work your way up.  Later, as an adult, one of my first jobs was with the Cystic Fibrosis Foundation.  God had been preparing me for this day.  He had been with me through all of it and He is still with me today. 

As I look back and see the steps along the roads of my life so far, I feel blessed to be able to see the proof of what my mama and my grandmother had always told me – “everything happens for a reason.”  For whatever reason, God has chosen me and my family to fulfill a task for him.  We may never know what it is.  We may never know who it is for.  We may be doing it now.  It may take years, months, a day, an hour, a moment…All I know is that where ever we go He is with us.  Whatever we go through, He is carrying us.  Whatever is in store for us tomorrow, He has it under control.

As you celebrate this 4th of July, be thankful that we have an independent country.  Pray that our country can stay this way and recover from its burdens.  Be thankful for your family.  Be thankful for your health.  Celebrate your life.  I thank God for the many blessings He has bestowed upon our family.  Things could always be worse than what it is.  We are thankful for the time we have been given.  Tell your family you love them today.  Reach out to the ones you don’t see everyday and tell them you love them too.  Celebrate every moment.

Happy 4th of July everybody.  Thanks for checking in today.

Love in Christ…Robin

Im in Deep… HELP!!!

Im puttin my faith, brain, and will power together to figure how science as far as the big bang theory and how prehistoric species could exist with humans in the biblical since of creationism and time. Although it will neve happen I just want to know more or if it could be possible. Let me know what you think.

A Special Day

Sixteen years ago, at this very moment, I gave birth to Nicholas Scott Griffin.  He was 8 pounds, 4 ounces, 21 3/4 inches long, he had a little hair and he was just beautiful.  It was a wonderful day and everyday since I have thanked God for giving him to me.  He is growing into a wonderful young man and I am very proud to call myself his mother.

I am so glad we got to come home before today.  He went back to school today and I am guessing he’s having a pretty good day – no news is good news!

Happy Birthday Nicholas!  I love you!

Mama

Our Special Visitors

We got such a treat today.  Brian and Heather came to visit with us and of course they brought Kailey.  It was wonderful to see her.  Nicholas nor Miranda have seen her since the day she came home from the hospital.  Mama came in with Miranda while they were here so they got to see her too.  It is amazing how much she has changed since she was born – even in the last week.  I saw her for a bit last Saturday and she looks different from then.  She is such a content little sweetheart.  It was great medicine.  Here are some pictures!

   

A Message From the Heart

Nicholas has a great friend named Monica.  She is 17 years old and she has cystic fibrosis.  We have known their family ever since Nicholas was diagnosed.  Her parents were a great support to us at that time and we have kept in touch over the years.  When Nick was in the hospital in June, Monica was as well.  That was the first time in all these years that they have spent any length of time in the hospital at the same time.  They instantly became great friends.  She has been admitted again this go round. 

I have a MySpace and Monica is listed as one of my friends so we can communicate even we Nick is not in the hospital.  There is a place for journal entries, blog entries, etc.  A couple of days ago, Monica posted a message about how she feels about her condition, her faith, and her relationship with Christ, hoping that others could get a glimpse of what she and Nicholas live with every day.  It really touched my heart.  It is an awesome testimony.  She gave me permission to share it and I wanted to put it up for everyone to read. 

No one will ever understand how we feel. No one will ever know what we go through each day of our lives. We don’t want your sympathy, we don’t need any special treatment from anyone. We are tough because we have grown up only knowing to live this way. Cystic Fibrosis has made us who we are today, we have more respect for ourselves then anyone ever will. It has taught us to be strong! If you give up…it’s over…but that’s not what were about. We are about persevering and making it through each day. I’m not saying that we don’t ever get down, or that our hearts are never heavy. Because you would be surprised how much we think about our disease each and every day. It’s not that we feel bad for us though, we feel guilty. We feel bad that our parents have to pay so much money for our medications, and treatments. We feel like we hold our families back, and our friends as well. At the end of day, all I ever want to do is say I’m truly sorry. And I’m sure my friend Nick Griffin feels the same way.

No, we could not help being born with Cystic Fibrosis and we do get down or worried at times…but I have never wished that I was born any different. God gave me CF because he knew I could handle it, he knew I would keep faith throughout my life. Not only would I be strong for myself, but I would be strong for God, and for my family. There is a reason for everything…don’t you think? If not, well then that is your own opinion. But I know in my heart that I can help people in tough times and trials in their life.

I hate hearing people complain about drama, and boy/girl problems, or any kind of high school crap there possibly is. You should be glad and feel blessed that you were born HEALTHY! God gives you healthy lungs and what teenagers do…they smoke…killing their lungs more and more each day. Just think about it….healthy lungs…and you ruin them. When some people (me and nick) are born with crappy lungs and we would give ANYTHING to have healthy lungs…and you better believe that we wouldn’t be stupid enough to smoke.

And for the teenagers who complain about their “love life” or any kind of teen drama. GET OVER IT! If I have to hear about suicide because of someone having a “broken hear”…I will scream! You have so much to live for, you could be such a good influence on people, and you’re over there worrying about a high school relationship…come on…get a life.

How about instead of spending your time feeling sorry for yourself you actually do something to help people. Something that will be remembered in life. Pick up a bible, read it, learn about God, get to know Him. Because trust me….without my Lord Jesus Christ…I would not be here now, I would not be able to get through each day, and I would not have anything to live for. I live for God, and I know He is my personal Savior! Jesus Christ died on the cross for me….and you as well. He is there for you always, you think you are done with life, and you think that giving up is the answer…think again! God is the answer! You just have to believe with all your heart!

Psalm 30:2
O Lord my God, I called to you for help and you healed me.

People who say…”well then why aren’t you healed yet, there must not really be a God if he isn’t going to answer your prayer right away.” …If you are someone who says that…just listen to me right now….There is a reason for everything, there is a reason God wanted me to be born with CF. Each and every day that I live with Cystic Fibrosis I grow stronger in my faith. I’m never going to give up on God and I know for a fact He would NEVER give up on me. My God is always giving me strength, during my toughest times and all the time. I know God is right by my side during this fight, He will never stray, nor will I.

God is good all the time,
All the time God is good.

=] thanks to all if you truly read this, and let it sink in some.

Clinic Update

Well, things were not so good.  Nicholas’ lung function was 48%.  The doctor was very impressed with the fact that he has been able to maintain his activity level and the fact that he was able to play tennis Monday night.  They wanted to get a culture and while getting it, Nicholas coughed up some blood.  That’s not really a good thing, so Nick has to stop his breathing treatments for a couple of days – which he really needs.  If he coughs up any more blood, we have to call them immediately.  We are going to increase his physical therapy while we wait for his culture results, but it looks like they will probably be admitting him to the hospital on Monday.

I just ask that you please pray for our family.  I really do not have the time to take off work, but I do not feel comfortable leaving him here by himself.  I realize he is almost 16 years old, but nothing is ever done the way it is supposed to when he is here.  Home IV antibiotics are really not an option because he needs physical therapy 4 times a day.  We have a lot of “life” going on right now, so it’s just difficult on all of us when Nick has to go in the hospital.  The bottom line is that he comes first.  So whatever we have to do get him well and keep him healthy, we are going to have to do.

Robin

A Thought

…Death wrapped itself around me till i was stiffled. It stuck to me. I felt that I could touch it. The idea of dying, of no longer being, began to fascinate me. Not to exsist any longer. Not to feel horrible pains in my foot. Not to feel anything, neither weariness, nor cold, nor anything…

From the novel “Night”

I put that up here for a reason because what he said made me think. I mean he basically just said that if he died right then and there he wouldnt have to worry about anything again. You might know this you may not but this thought has crossed my mind a couple of times, which is more than enough. I mean if you have a disease that you grew up with and your in the hospital at least 3 times a year, does I.V. therapy, does treatments at home, and  some many pills a day you cant count on your fingers and toes, you couldn’t tell me that a thought similar wouldnt come across your mind not one time. So i guess the idea of not going in the hospital anymore, no treatments and knowing that my family would be better off finacially sounds good sometimes. But it’s not worth it to quit and give up, just to make it easier on yourself. like the title says just a thought.

love to all, Nick

I have to admit….

I’m pretty upset its about 7:30 pm and I’m talkin to I think i would consider my best friend online through yahoo messenger. He just told me that he might be moving back to Massachusetts with his dad. Now I’ll say that I’m not the most popular person in school nor do i think I will be. Although I don’t have very many friends I do choose them very carefully and he was one that passed that test pretty easily. We have come to know each other pretty well in the last year and a half and i told him that is just stinks to lose a friend like that. In a way I wish i could just say this aint happening but its a reality I cant fix. I’m between a rock and a hard spot, because i want him to see his dad again but i also don’t want to lose a great friends due to a long distance move. I have know idea what God has in store for me now. But whatever it may be I’ll get through it whether i like it or not.

love to all, nick

“Voice Recognition”

This is something we are workin on in school i figured id give you a little taste of what were doing in “Digital Communications”. Although it doesnt look very successful. And yes i posted this at school. 🙂

Hello yes one day a little overlap in Kay not know how notification Johnson and Joh of him to you and I. I. I. I. I. o v

then head own enter

under him and his partially yes in this is stated to baseless and face-to-face of the I have found so I listened to have a but that today and prayer at Boeing italic underline underline underline gold underline and good and distributors to th underline the states that sp expense tax act has been no and loyal reward until Memorial into Memorial oh of him of number of our city’s growth is of the I have been no bubble up in the been hung up on your part of a button of two of the up front of the of the I know for and of him and I and how do you notice that the of the of the of change in the and I have been in the I. I. and in and of I. and no evidence of this for you and of the I. have and when

love to all, nick

For those of you who don’t know what “Voice Recognition” is: This is a program that allows you to speak into the computer rather than type.  The computer types what you say.  It takes a while for the the program to learn to recognize your voice – this also depends on how good the program is.  So when you first start out, what you are saying most-times types out as jibber jabber.  That is what you see above.  It’s pretty cool once you get the kinks worked out.

Done

Hey everybody im at school in 1st period. Im done with all of my work for now and im waitin for the bell to ring, I figured i would tell everybody how im doing. Well im doin ok i guess my next appointment is October 8th I think but, im not sure if i can wait that long because I feel horrible and i have a cold, usually when i get a cold it moves from my head to my chest causing me to go in the hospital again. Although i would like to wait because, Miranda turns 13 on the 28 of this month and i dont want to miss that because thats a pretty big monument and everything. So i guess i have to go because the bell is about too ring.

Love to everybody,Nick

Addicted to Driving?

HELP ME!!!!!!!!!!! I think I’m addicted to driving. Miranda and me have open house today at school and i told mama OOO i get to drive again!!!! I think mama thinks I’m crazy, but i don’t care. At least its a healthy addiction right? It could be worse things. Alot of peolpe say that the excitement of driving wears off after awhile I’ll belive it when i see it.

Permitted to Drive

Well, almost…Today, Nicholas completed the driving portion of Driver’s Education.  School offices are closed on Fridays during the summer, so he has to wait until Monday to get the form he needs to go take the test to get his permit.  I’m sure that’s what we will be doing bright and early Monday morning. 

I remember that I failed my permit test because my Daddy took me and walked around me and stood over me the whole time – I was so nervous.  I missed one question too many.  Needless to say, my mama took me the second time. 

So this serves as my warning.  He will be on the roads Monday afternoon…if he passes – I’m sure he will. 😉

What’s Up

I know, it’s been about a week since I last posted.  We’ve all been getting back into the routine of being home after camp.  We had a great program at church Wednesday night.  I am sorry to say that Nicholas did not give his testimony.  I guess it just wasn’t the right time.  It’s nice to know that he is thinking about the fact that the glory goes to God for all of his blessings in life.  It’s nice to know that he can see blessings in his life and not all the bad stuff.  I am very proud of him for that.

This Wednesday, the 6th of August, we will be heading back to Chapel Hill for a follow-up appointment to see how he is responding to the oral antibiotics.  He seems to be doing pretty well with it.  His cough has lessened and he is doing very well with his treatments.  Hopefully he will not have to go on IV antibiotics because of has been doing better.

We are praying for his lung function to be up, his weight to at least be the same (he didn’t do his feeds at camp last week), and for a good outlook for the start of school in a couple of weeks.  ugh! 😉