What’s Up With Nick

Nicholas has been going back to school since the beginning of the new semester.  Things have been going very well.  We have even been able to push is appointment back.  And believe it or not, he is going to be trying out for the Tennis Team!  This has been a dream for him for quite a while now and I believe he is going to be able to do it.  He is LOVING school.  He has all of his favorite subjects: Art, Strength and Conditioning (weightlifting and fitness), U. S. History, and Biology.  He is in absolute heaven I tell you.

He is continuing to use the new inhaled antibiotic every other month – I think this is one of the main, BIG differences in his life.  Aside from the fact that he has really matured and gotten more serious about his meds, his treatments, and his life in general, he FEELS GOOD!  His cough is almost completely at 0% – which we haven’t been able to say in a very long time, and he is able to do things he hasn’t been able to do in a few years now.  His stamina is growing and I think he is doing so much better over all.  He had been becoming short of breath at the thought of doing anything and now he is going, going, going…

Thanks for all your thoughts and prayers guys.  They really mean the world to us and they are WORKING!  Keep up the good work and thanks for checking in.

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!

Getting Settled

Well we’ve been home for a little over a week now.  We are so loving being home.  Nicholas seems to be adjusting to being back home more smoothly than usual.  He is doing really well with keeping up with his meds, physical therapy, and other treatments.  John has taken him fishing this week while he has been on day shift.  He goes back on night shift next week so we won’t see much of him except on the weekend.  😦

I am praying that we can keep Nick active enough that he will continue to do well so he can enjoy the rest of the summer and have a good start to the school year – if we can ever get the end of this year straightened out.

We are also praying for me in respect to a job.  I never thought I would be worried about a job at the end of my education, but here we are.  Please pray for our state government.  They are working to pass a budget.  Our counties are on a hiring freeze until they can pass one.  Education is taking a beating right now.  I won’t go on about this one ’cause it will put me on my soapbox.  🙂

I just ask that you continue to pray for our family and I thank you for your prayers for us so far.  Coming home from the hospital does not mean that everything goes away like a regular illness.  There is still a lot of work and maintenance to do to keep Nicholas healthy.

Love to all…Robin

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

Home At Last!

Believe it or not, we finally left Chapel Hill around 5:00. I know…long, unimportant story. We stopped in Wilson to pick up a few things and then went home and unpacked the car. I mean…literally, we threw everything in my room, used the bathroom, and then got right back into the car to go get my baby (Oscar). Oscar is our miniature Dachshund and I missed him SO much. My daddy was not too happy to give him up I think. My mama is in Florida so it was just daddy and Oscar hanging out. I think he’s going to be kinda lonely until mama gets back.

Then we stopped at Brian and Heather’s house to see them and Kailey. Gosh she is growing up so fast. We finally got back home around 9:30.

I have almost completely unpacked everything and I am waiting for John to get home. He doesn’t get home from work until 1:20ish – AM.

Thank you all so much for your prayers for Nicholas over the past three weeks, but especially over the past couple of days. It has been kind of rough and we couldn’t have made it through without your prayers and God’s gift of grace.

We are now praying that Nicholas will continue to strengthen now that he is home. He has got to work on building his strength and stamina back up. He is really looking forward to the holiday so he can get some swimming in at his Aunt Kim’s house before the fireworks and homemade icecream. He has talked of nothing much else today.

He is not scheduled to go back until August 5th, but I will keep in touch through the blog so you guys will know “What’s Up With Nick.”

Love to you all,
Robin

Still Waiting…

We are showered and packed and ready to go.  All the paperwork is ready, but no lung function test yet.  He said he would be here around 11 am but, alas, nobody…

God bless America!!!  They just came in and said that he is going to try to squeeze us in between 1:30 and 2:00.  UGH!!!  Patience is not a virtue of mine – can you tell?  Please pray that our anxiousness will be calmed and that they will hurry and come get him for the test so we can go home!

I will let you know anything new as soon as we can.  🙂

We did have some good news on top of all this…Nicholas’ weight is up to 116.9 pounds!!!!!!  Almost back to his all-time high!  I had to leave on a good note.

Robin

Going Home…Unless Something Happens…Which I’m Sure It Won’t

OK…so the doctors came in this morning and said that because this is the end of three weeks of antibiotics, as longs as his lung function is up, we should go home today.  Let’s put it this way, they are already working on his paperwork.

Words cannot express how happy we are at the prospects of going home.  This go around seems much longer than the normal three weeks and we are SO ready to be home with the whole family under one roof.

When we get his test results and the final word, I will post again.

Robin

Wednesday, June 17th

Today has been pretty much the same as yesterday.  Nicholas went down at 1:30 for a lung function test.  His numbers were up – from 46% to 55% – he was pushed very hard; to the point that he was having chest pain, so the person who does the test is going to talk to the doctors to let them know how the numbers were obtained and the condition of Nicholas when they were done.

At this point, I believe that we are still going to be here, but it will be interesting to see what the docs say.  His appetite has increased dramatically.  He is eating more and more on top of his feeds at night.  He even at during his feeds last night.

That’s it for now.  I will post more as it becomes available.

Robin

Tuesday, June 16th

Sorry I didn’t post yesterday.  There really wasn’t anything different to report.

Everything seems to be going as planned.   The new medicine for Nick’s appetite seems to be working.  He is eating A LOT.  He has been able to tolerate the new vitamin they gave him, and his weight is up a bit.  They will be doing another lung function test tomorrow to see what his progress is.

John left to go to work and home yesterday and Miranda will be coming up on Thursday to stay with us for a few days.  John will be back to visit on Sunday and will take Miranda back with him.

Thanks so much for all the thoughts, calls, emails, posts to Facebook, and most of all for the prayers.  They are felt everyday.

Love to all…

Yep…We Are Going Home!!!

Nicholas just went down for his lung function test.  His numbers are back up to 57% and we are going home!!  Thank you God!!!  Our prayers have been answered and my family is going to all be under the same roof when we go to bed tonight!

Guys, you have no idea how wonderful it is to know that you have a support system of friends and family that are praying for the same things you are.  Love just emanates around our family and it is very much felt and appreciated.  We are nothing without God and you all are a part of the life He has given us.  We are blessed and we are so thankful.

Maybe we will get to see you around Edgecombe County this weekend!

Robin

What the Doc Said

Well the doctor came in this afternoon and said they were very pleased with Nicholas’ lung function today.  They think he may be fine to go home in time for the weekend.  They are going to repeat his lung function on Thursday or Friday just to make sure, but hopefully things will be the same if not better and dwe can go home on Friday.

They are also pleased with the fact that Nicholas is gaining weight.  He was up to 10 and a half pounds today.  We just have to get him through the next week of food.  After a while, due to the antibiotics, he loses his appetite.  Finding things to get him to eat becomes a scavenger hunt.  🙂  So we will be focusing on that this week too.

We are all so excited!  I can’t wait to have my whole family home under the same roof and to sleep in my own bed.  Thank you for your prayers, calls, messages, and cards.  They are so appreciated.  We love you all dearly!

Robin

Lung Function Update

Nicholas went downstairs this afternoon for his repeat lung function test.  The test says that his lungs are functioning at 54%.  That’s down from 57%, but it is still pretty good.  We haven’t seen the doctors yet.  I think they are waiting for all the retests to be completed.  Regardless of what they say, we are thankful for the improvement.  God has truly blessed us.

They will probably retest nick again on Thursday, so those results will decide whether we can go home early or not.  We are praying that his numbers will continue to rise and that we can all be home together this coming weekend.  It would be a wonderful gift.

He is getting to the point where he is getting tired of the food and the antibiotics are causing him to begin to lose his appetite.  This is normal for him, but it doesn’t make anything easier.  He is hungry, but at the same time…he doesn’t want what they have up here.  It is very frustrating for him.  At least he is feeling better and he has been going to the playroom more.  He is exercising now and I hope he will go to the playroom this afternoon.  Getting out of this room is one of the best things for him.

That’s really all that’s going on.   I will post more when I know more.  🙂

Robin

Lung Function

The Griffin’s are thanking God for answered prayers. Nicholas went down for a lung function test this afternoon. His lung function was up!  Last Thursday his lung function was 44%…today it was 57%!!  God is so good.  Nicholas says that he is beginning to breathe easier and he is feeling a little better as well.

This is such great news!  Thank you all for your thoughts, cards, and prayers.  Please continue to pray for Nicholas.  This MAY mean that he can come home earlier than the anticipated three weeks.  🙂  So keep those prayers a comin’!!

Robin

Going Home!!

No side effects from the new med!!  Nicholas has been de-accessed and has just gotten out of the shower.  As soon as I pack up a few last items and the computer, we will ready to go.  We are waiting for a cart to take everything down.  We should be home soon.

Today has been another day of good news that we are so thankful to God for days like these are great gifts.  We can’t wait to go home and be family under one roof.  Thank you everyone for the prayers, calls and the cards for Nicholas.  I think he got a card almost every day that he was here.  It was wonderful.

Love to all, Robin

New Update with Praises!!!

God is trying to tell these doctors that HE is in control…Nicholas’ lung function is up to 62% – the highest it’s been since November of 2007.  AND his weight is to an all-time high of 116.5 pounds!!!  We are still waiting on the new medication to come.  Just thought I would share the great news.

Early Treats for Halloween

Treats come in all shapes, forms, and sizes.  Well, today they came in BIG ones.  Some of the Carolina football players came by to visit with the children in the hospital.  They didn’t even ask us if we wanted them to come – they just said “send them down to Nick Griffin’s room!  It was such a treat!  One of the guys had made this HUGE play a few weeks ago and when I told him I knew that was him, he gave me this big ‘ole bear hug.  It just made my day.  These guys were just big, squishy teddy bears.

A special thanks goes out to the hospital recreation services, for coordinating visits like these, and to the football players themselves for giving their time to make the day of sick child. (and to an old grandma who is a HUGE fan as well) 🙂  Oh! and they all signed his favorite hat! 

A special thanks to #42 Robert Quin, #18 Jay Wooten, #9 Marvin Austin, #98 Darrius Massenburg, #75 Garrett Reynolds, #32 Ryan Houston, and last, but not least, #82 Todd Harrelson.  These guys were so nice and it seems like a treat for them as well.  We wish them the best of luck during their game tomorrow against Boston College.  GO HEELS!!!

19 Thousand!!!!

19,000 i cant believe it. When Mama started this blog back on July 2, 2007 we would have never guessed it would have gotten this far. We thought that only a few people would read the blog, but we have gone international. I just want to thank everyone who has read this blog and has passed it on to your friends and family.

love to all, nick

Lung Function

Today Nicholas went down for his lung function test.  His numbers are up to 59%.  This is up 11% from Wednesday.  We are very pleased with his progress so far.  His weight is up as well.  He weighed 112.5 pounds today.  This is a new high for him.  We are so thankful that things are going well for him and ray that we will be able to go home soon.  We haven’t heard anything different so I feel like we are sticking to th original plan of 3 weeks.  Hopefully we can get back to the high 60’s where he used to be.

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