Happy Christmas!

Luke 2:1-14

1 In those days a decree went out from Caesar Augustus that all the world should be registered. 2 This was the first registration when Quirinius was governor of Syria. 3 And all went to be registered, each to his own town. 4 And Joseph also went up from Galilee, from the town of Nazareth, to Judea, to the city of David, which is called Bethlehem, because he was of the house and lineage of David, 5 to be registered with Mary, his betrothed, who was with child. 6 And while they were there, the time came for her to give birth. 7 And she gave birth to her firstborn son and wrapped him in swaddling cloths and laid him in a manger, because there was no place for them in the inn.  8 And in the same region there were shepherds out in the field, keeping watch over their flock by night. 9 And an angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were filled with fear. 10 And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. 11 For unto you is born this day in the city of David a Savior, who is Christ the Lord. 12 And this will be a sign for you: you will find a baby wrapped in swaddling cloths and lying in a manger.” 13 And suddenly there was with the angel a multitude of the heavenly host praising God and saying,

14 “Glory to God in the highest,
and on earth peace among those with whom he is pleased!”

Happy Christmas!

 

Monday, Sept 27th

Things have been going as well as can be expected over the past couple of weeks.  Nick has committed to increasing his exercise and he has REALLY help up his end of the bargain.  We bought him a new bike and helmet and he has been adding up the miles.  He’s hated the rain today.  I think it’s the first day he’s not ridden since he went to Chapel Hill.  We have always told him that sitting around doing nothing will make you feel worse and I think he finally believes us.   He feels better and his appetite has dramatically increased! I don’t know where in the world he puts all the food.

He was supposed to start homebound today, but he was having stomach issues.  I told him he ate too much food yesterday.  🙂  His teacher will come tomorrow.

Please continue to pray for him as he works on getting his treatment schedule fine tuned.  He still has issues with getting everything done.  Thanks for all the thoughts and prayers and as always…thanks for checking in.

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..

eh…

This past week hasn’t been a great one for Nick. He hasn’t been feeling well and he has had a LOT of stomach issues.  He’s going to try to go back to school tomorrow.  He has to go back to Chapel Hill on Wednesday for a follow-up visit.  We have no idea what the numbers are going to show us.  I’m not sure I want to know.  John will be taking him so I can work.

Please pray for Nick as he continues to work on getting back into the swing of things – doing all of his treatments AND going to school.  One or the other is hard enough, but both of them together is a real problem for him.

Thanks for checking in…

What’s Up With Nick

Nicholas has begun his SENIOR YEAR! I know…where does the time go? He has has a rough summer and a rough go getting started with school. It is so exhausting for him, but he is determined to go and stick it out. We are having a hard time getting into the swing of things AND keeping up with his treatments.

His lung function is not the best in the world. He is hovering around the low 40’s and his weight continues to be a struggle.  We began a new inhaled antibiotic a little over a month ago.  We did see his numbers go up, but only time will tell if it was a one time thing or if it will be a welcome trend for us. We are praying for the latter.

I have been a terrible blogger.  I have to blame part of that on Facebook. So many of our friends and family are facebookers now that I have let the blog go to the wayside. Now that we are back in school, and I have a classroom website, I will make an effort to get over here and post as well.

I promise, if nothing else, to post regularly when he is in the hospital. I wish I could say we would be doing the whole hospital thing less, but I don’t feel that will be the case. Only God knows the answer to that one.  We have many more friends now that we know on a personal level that are dealing with this disease as well.  We ask that when you say a prayer for Nick and our family, that you say a little prayer for them as well.

As always, thank you for your prayers and your support! (especially those of you who check the blog everyday to see that I have not posted. 🙂 )

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.

Pictures from NC Children’s Promise

Nick with Jake Owen

Jake Owen visits with Nick

Nick on 96 Rock with Blade

The Latest…

OK…because Nicholas has a fever, he is on droplet and contact precautions.  This means of course that you have to wear a gown and gloves and a mask when you come to visit.  Well, because of that, he cannot do the lung function test.  If there is ANY chance that he has the flu or any other bacterial infection, he could blow the germs into the machine and the technician can’t clean every surface of it.  So we can’t do the test…so he can’t go home.  Not to mention that the doctor is not comfortable with his being out of breath.

If Nicholas were to get the flu, it could be very bad for him…She says she feels much more comfortable having him here so they can watch him.

SO…he will be here at least until Monday.  I guess we will do it all over again on Monday.  If he is off droplet precautions, he can do the lung function test.  It will ultimately determine when nick can go home.

Friday, November 20th

Nick has not had a good night. Yesterday was SO awesome! he was on the radio for the NC Children’s Promise. He met so many people and he has been promised concert tickets and an autographed Marty Fish tennis racket.

He texted me at 1:30 this morning to tell me that he was carrying a low grade temperature. This morning he told me he was short of breath and he was coughing more and coughing up junk.

The doctors are running a bunch of tests. They are testing for flu, H1N1, and they are going to check just to make sure he doesn’t have an infection in his port a catheter. They are pretty sure he doesn’t.

I just talked to the doc. The nurse didn’t tell her that Nick was short of breath. He is on precautions now because of the fever. All visitors have to wear a gown, gloves, and a mask. He can’t leave the room until he is off precautions or until he is discharged until he has been without treat temp for 24 hrs. The doc also said that if his lung function was below 50, he probably would not go home. Needless to say he is not happy. They are so busy here so he still has not had the test yet. Praying for good results!

Update – Tuesday, November 17th

OK…so the doctor on service at Chapel Hill called me.  Well, she had Nick call me.  She wanted Nick to go down for another lung function test today.  His lung function was back down to 50 and she is not happy with that – neither are we.  They are going to add a 5th antibiotic (yeah, I know) and start him on prednisone.  Now I don’t know if he will be able to come home on Friday… 😦

I’m sure we probably won’t really know anything until Thursday or Friday, but I’ll keep you posted.  Praying for a miracle people, because I need that boy to get better so he and John can come home.  This has been the hardest time in the world for all of us.

AND, Monica is not doing the best in the world either – they may re-admit her.  She will find out tomorrow.

Sunday, November 15th

Yesterday was a great day here on the Hill.  We watched the Dookies lose to Georgia Tech and then we watched and heard the Tarheels in an awesome game against Miami.  It was the best game ever!  Nicholas needed a pick-me-up because he wasn’t feeling the best in the world yesterday morning.

Other than bood sugar issues, he’s had a pretty good weekend.  They have added another antibiotic.  This one is inhaled through a breathing treatment.  He hasn’t been able to tolerate it in the past because he has floppy airways called bronchialmalaysia.  With his airways already being this way, breathing the drug would make his airways collapse and he would cough more.  They wanted to give it another try because it would put an antibiotic directly in the lungs.  Tobramycin is a popular drug and he has taken it through his IV, so we know he is not having a reaction to the drug itself.  He seems to be tolerating it pretty well so far.  He is doing his regular breathing treatments to open up the airways, then the therapist comes in for his chest pt, and after all of that, he gets the inhaled TOBI.

The doctors are hoping this will help to get his lung function back up at least into the 60’s.  Nobody likes the fact that they have been remaining down in the 50’s for a while.

So today, I am praying for continued weight gain, that the inhaled drug will help to open his airways more, that his lung function will climb higher than the 50’s, and that he can come home on Friday as planned.  Thank you all so much for your prayers and support.  It means a lot.

Robin

They Came Baaaack!!!

The football players were making their rounds today before the game tomorrow!!  It was SO cool!  Go Heels!!

Tuesday, November 10th

Sorry I haven’t posted lately…busy, busy, busy.  🙂  Hospitalizations are a process for Nicholas.  They place him on high dose antibiotics, a fierce regimine of physical therapy and excercise, and they monitor his weight.  Unfortuantely, that makes it difficult for all of us because we just simply have to wait to see how he progresses.

The doctors are concerned because he is not gaining weight.  We weighed right at 112 pounds when he went in and he dropped to 111.  He has been at 111 pounds for over a week now.

He also continues to have blood sugar issues.  They are doing a glucose tolerance test today, so it will be interesting to see what the results are from that test.

The doctors say that he will probably be there for the full three weeks.  Tomorrow is Veteran’s Day so there is no school.  I will probably be going up for the day, and then I will be back on Friday.

That’s all I have for now.  If anything changes, I will let you know.

Robin

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!

Tuesday, November 3rd

Talking to Nicholas and John yesterday and last night, things went well yesterday.   Nicholas went to the playroom yesterday when John left for work so he has been occupied with the playroom and his birthday present.  As far as I can tell, things are progressing as they should.  He is getting two IV antibiotics and physical therapy four times a day.  While I was on the phone with him last night, he had gotten a bunch of mail delivered to him and he was reading through it.  I really appreicate that and so does he.  He LOVES to get mail so thank you all for doing that.

Hopefully, today, he will try to start of some of his school work.  It’s kindof hard to concentrate on stuff like that when you are feeling so well.  So today I am praying for continued progress in his lung function and lung capacity, weight gain, and that he feels better so he can work on school assignments.  I also pray for continued strength as I am separated from him, for John in his traveling back and forth to Kenly to work, and that this will all be over quickly so we can all be back under one roof.  I pray for Miranda too eventhough she is happy to be in her own house and in her own bed.  She is usually living with my mama or John’s mama or someone else while Nicholas is in the hospital so that is a praise for her.  🙂

Thanks for checking in today.  I’ll post when I know more.

Pick me Up

Nicholas has a little pick me up… 🙂

Sunday, November 1st

First of all happy birthday to my sister-in-law, Stephanie!  Hope you have a great day.  We love you.

Nicholas had a pretty good night.  His blood sugar was 68 this morning when they checked it, so they went ahead with the tests.  THANK GOD!!!  Now we are waiting to get a urine sample…

We are beginning to notice that his cough is getting a lot wetter.  It sounds bad, but it is really a good thing.  It means that the junk in his lungs is already starting to break up and move.  The doctors are please with that news.

John has gone to hunt down his birthday present…this is the second year he will have been in the hospital on his birthday.  He wants a PSP with the Grand Turismo bundle.  He went to Walmart – they were sold out.  The specialty shop in the mall near here has it, but it doesn’t open until 1pm.  So now he is back in Durham looking at Target.  I guess it’s better than sitting here in the hospital all day.

So that’s what’s going on so far today.  Ashley is on the way up here to visit today, so that has made him feel better already.  If anything else happens, I’ll post it…