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!

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

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

Quick Update

I want to say thank you to all my praying friends.  Nicholas woke up from his nap feeling much better.  He ate a really good amount of food for supper and is back to talking to his friends on the computer.

NO ONE can tell me that prayer does not work.  I love you guys!  I praise and thank God that he is the all-healing physician.  Now we are praying for his lung function test tomorrow.  If his numbers are high enough and the doctors think that he feels well enough, we may be able to go home tomorrow.  We will have to wait and see what God has in store for us.

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

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