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

“What’s Up With Nick” in the Spotlight

A few weeks ago, a comment was left on the blog by Ashley at izea.com saying that they wanted to feature this blog on their website as the “September blogger with a Cause.”  Of course I agreed and they posted the blog on their site.  It is a great honor for the blog to be spoken of so highly and I am just so humbled by what has been said.

Here is the link.  Check it out and spread the word!

THANKS ASHLEY!!

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

“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.

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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

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…

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.

Street Legal

This mornin after Miranda’s doctor appointment, we went  to the highway patrol station to get my permit. So if you haven’t gotten the hint yet, i now am able to drive under supervision. Although Mama and Daddy think I’m gonna pull a Nascar move  in Temperance Hall, but I’m not that irresponsible… i think. I’m just kidding I’ll be good but if I’m on the road I’ll try to let you know. Even if I did wanna screw up i couldn’t cause i have Uncle Trey in the Rocky Mount Police Department and have Jeff Collins in the Highway Patrol that goes to my church and then i have a second or third cousin in the sheriffs department so i think I’m covered. Now that i have that all out im gonna say one last thing…. I GET TO DRIVE TO CHURCH TONIGHT WOOOOHOOOOO!!!!!!!!!!!!!!!!!!!!!

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.

Going Home

We are going to the car to go home.  The doctor is happy with his numbers.  He wants to continue with the oral meds for another couple of weeks and he wants to see him in October.  So all is good for now.

Thank you for your prayers!  See ya back in Edgecombe County!

Lung Function

His lung function is up to 58%.  The last time we were here it was 53%.

Clinic Visit

We are in the clinic and waiting for Nick to go back for his lung function test.  His weight was down a bit (107.3lbs) but that was expected because he went to camp without his feeds.  I will post as we go along.

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!

Back From Camp

Nick had a GREAT week!  No blood sugar drops, meds taken, therapies done (for the most part), and no problems to report of.  Not to mention, the program and the speaker were absolutely awesome!  There’s nothing quite like a week at Caswell. 

I will try to post some pics later this week in the photo gallery.  I’m working on a skit and the slide show for their program Wednesday night - have to prioritize!

Thank you so much for your prayers for him and the group as a whole this week.  We definitely felt the Holy Spirit moving and working through us.

Robin

Are We There Yet?

Except for toothbrush, toothpaste, and the kitchen sink, Nick is packed and ready to go to camp.  Miranda is already with my mama.  We will be loading up the vans at 8:30 in the morning.  I am taking my laptop for other things, but if I can get on the internet, I will try to post a picture or two.  :)  I pray that everything will go smoothly and that we all have a great time. 

Some of you have been asked to be prayer partners for me and Nicholas this week.  I ask that you say a special prayer for him in that he is compliant with his treatments while we are there.  He is taking the week off from his tube feeds, so we are going to be focusing on sustaining his weight, his breathing treatments, and his physical therapy while he is on this antibiotic.  He has responded very well to the drug they have him on so we are already encouraged.  

Again, thank you guys for the thoughts and prayers this past week.  If I’m not able to get on this week I’ll be back in a few days.

Hi Ho! Hi Ho! It’s off to Camp We Go….

The doctor just emailed me and told me that Nicholas is growing Staph in his culture - nothing else.  He is growing about 2 million organisms per ml of fluid.  The low end would be 10,000 and the high end would be 20 million, so he definitely thinks it needs to be treated.  There is cause for concern because Nicholas has needed IV antibiotics more than ever this year so we need to be agressive with his treatments. 

Since he is supposed to go to camp next week, the doctor is going to put him on an oral antibiotic.  He wants to see him the next week after we get back.  If there is no change, he will be placed on IV antibiotics.  Another cause for concern is being able to keep up with his breathing treatments and physical therapy while he is at camp.  This is very important to his lungs being able to clear.

So while this is good that he gets to go to camp, we are still not out of the storm.  Having said that - I am thanking God that he is not growing anything new.  The staph is enough of a problem for him.  We are working out a schedule now to try to keep him on track with his treatments while he is at Caswell.  He is really gong to need the support of everybody next week to stay on schedule.

I just want to say thank you to all of you for your thoughts, comments, and prayers.  They are what we really need right now.  Even in the craziness of the week, we have seen God at work.  Nicholas is not growing anything new, he is still going to be able to go to camp, and even though she is having difficulty, Miranda has no cast.  Things could be alot worse and we are thankful for what we have been given.

Good grief!  Now we have to pack…

Tomorrow

Tomorrow (Friday) we find out about Nick’s cultures and what they plan to do - if anything.  Tomorrow will be the deciding factor in whether or not Nicholas goes to camp.  Whew!  What a week!  Praying for clear cultures and no IV antibiotics.

Back at Home

WARNING: bad grammar ahead

Hey this is Nicholas, im back home and doin’ well. im feelin’ pretty good im still a little loopy form the anesthesia, but im wide awake, as soon as i was able to walk i told mama that im hungry and i want i burger from hardees and curly fires to go along with, she said that i needed to slow down and eat somethin’ light before i ate somethin’ like that. After we left hardees  i ate the curly fries like i hadn’t eaten in years and soon to follow was my burger, and keep in mind this is only 30-45 mins after i woke up…. I love my stomach of steel. But anyways i wanted to let you guys all know that im home and doin’ fine and i would also want to thank all of the people for the many prayers for me today.

Nicholas

Going Home

Ok.  He is dressed, he is taking Tylenol, and we are getting our discharge instructions.  So we should be on the way out the door in about 15 or 20 minutes.  I will post again once we get home. 

Thank you all for your thoughts and prayers this morning.  They have definitely been felt by the both of us.  We thank God that this has been a very smooth procedure for him and that he has not been sickened by the anesthesia.  We are glad to be going home. 

In His Grace, Robin