Sunday April 5, 2009

Today has been pretty quiet.  The docs came in this morning while we were still asleep.  They left us alone – except for Nick of course.  Things are clicking right along as expected.

We had a couple of visitors today.  Christian and her mom came up to visit.  Please pray for their family.  For those of you who do not know the situation, John and I have known Christian and her family for a very long time now.  Christian had her daughter Lily Claire by c-section at just 24 weeks.  She weighed 1 pound and 7 ounces…I think.  A few weeks before she was born, Christian and her husband were told that Lily had cystic fibrosis like Nick does.   Being a preemie is hard enough on a precious little baby, but having cf on top of that just makes things more difficult.  Lily is here in the NICU.

Pray that Lily’s lungs will continue to heal so they can take her off that horrible respirator.  Pray that Christian and Travis can find some peace in all that is going on in their lives.  I pray that God will place a peace in their heart that helps them to know that there is a reason for everything and that God will continue to bless them through Lily.

I guess that’s all from the Hill today.  John will be going home later this evening so it will be just me and the Nick-meister.  🙂

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.

Good Night

Last night was a much better night of sleep for both of us.  We are still having respiratory department issues, but they are never resolved when we are here so unfortunately, we are forced to live with them.  Other than that, things are going along as they usually do.  We just have to let the antibiotics and the physical therapy do its job.  He will be having another lung function test on Monday to see of he has improved after this first week of antibiotics.

Nick’s friend Monica, (who also has cf) is having a bronchoscopy today and is coming into the hospital.  Will you guys say a prayer for her?  She has been really sick alot lately and she is not feeling well at all.  She has been in the hospital more that Nicholas has this year.  She is very worried and tired of being sick.  I can’t imagine what her family is going through.  BUT the one thing she has on her side is that she is strong in her faith and she knows that God is there with her every step of the way.  She is such a fighter.  Our thoughts will be with her today.

Getting Settled

The usual things are going on…answering questions, getting his medication straight and on schedule, starting his IV meds, getting his food scheduled, blood tests, physical therapy scheduled, respiratory treatments scheduled.  The normal stuff.  🙂

We had a pretty good night.  I went to bed at 11 – he went to bed around 1:30.  Then he woke up bright and early to doctors poking, breathing treatments, physical therapy.  Now we are already on the second round of breathing treatments and physical therapy.  They will be drawing blood two times this afternoon to check his IV medication levels.  The school teacher has been this morning to start getting everything straight so he can keep up with his school work.  He has his own computer now so he is in heaven.  🙂

I also just found out that Nicholas has volunteered me to participate in a study here at the hospital.  He has done it several times before.  All you really do is breathe into a tube.  It collects the condensation from your breathing and they use it to test for whatever they test for.  It’s pretty cool actually.  Anything to help find a cure – I’m game.

If anything interesting happens, even if it doesn’t, I will post every day.  Thanks for your thoughts and prayers.

Hittin’ the Road

We got the call saying that Nicholas’ room is ready.  We are packed and getting ready to go.  I’ll post his room information when we get there and get settled.

Robin

Update

Mama emailed my doctor this mornin and told him that i wasn’t feeling too good and he emailed her back within a couple of minutes. He said that he would recommend starting another oral antibiotic. So he called in a prescription for Augmentin 875mg twice a day so thats a pretty big dose. Im hoping that it will hold me off for a couple of more weeks, Im prayin it will but God only knows.

Love to all, Nick

Role Reversal and Tarheel Football

Saturday, Nicholas had a real treat.  He and John were given tickets to the first UNC football game of the season.  Except for the rain that came later, it was a great day.  They had an awesome time.  (Michael thank you for the tickets and tell whomever gave them to us thank you too). 

This also gave Nicholas the chance to VISIT someone in the hospital while he was there.  His great friend, Monica, has cystic fibrosis and she is in the hospital now.  She battles with her lung function like Nicholas.  So they dropped by for some fun with her and the nurses. 

Here are some pics from the day…