Merry Christmas ~ 2016!

Merry Christmas!

It's hard to believe, once again, that it is really December!  As I look back over this year, like most people at this time, I can see so many blessings and things for which to be thankful!

Pete continues to do well.  He just keeps on going.  He is so so close to finishing our bathroom remodel that he took on himself.  He has worked on it in stages, and we are really in the final stretch.  My vanity has taken up the front hall for a long time, but it will be in place soon.  He put down leftover hardwood floors, and they look wonderful.  He is still working on getting his right foot/leg to run.  At times, he ran up through our neighbor's yard which is an incline.  It was funny to see three dogs and a boy in pajamas running with him.  One dog would try to protect him from the other dogs' jumping, and she would end up cutting him off.  So he got lots of physical therapy that way too.  He still loves being a pastor and has also been back to Israel two times this year.  I saw a picture of him yesterday that reminded me of how he used to walk/run.  And for a minute, I felt sorry for me.  Then I remembered that I need to remember how he was in the hospital and be so very thankful that not many people can tell he suffered four strokes.  We are truly blessed by the recovery God made happen.

Andrew is a fifth year senior.  He added another major and took Chemistry and Biology this semester and ended up with the final exams on the same day!  He had one more cross country season left, and we enjoyed watching him run and cheering for him and his team.  He had some disappointing meets when he was sick or very tired, but he also had a couple of great races.  One landed him as Sun Belt Runner of the Week.  I have all of his articles in a previous post.  But I was extra happy for him, as he works so hard and doesn't get to see what he could really do when his body and health won't cooperate.  He was on Charlotte Today with one of his doctors and was able to run and win a road race benefiting Levine Children's Hospital where he had his first IVIG infusion a few years ago and continues to go to clinic.  We added a new doctor recently who has been very helpful, and he goes back to him next week in Winston.  The following week he has two specialist check-ups in Charlotte.  He has been featured in The Appalachian and The Winston Salem Journal recently and has been able to share some of his story.  Andrew has such a great outlook on his medical issues and hearing him talk to reporters and anchors has really helped me be more thankful for the blessings and thankful for his attitude.  He missed his infusion medicine until after Easter due to Blue Cross Blue Shield issues, and I struggle with the unfairness of that.  But God kept him from getting pneumonia.  And though it did cost him, as his immune system went down and made him susceptible to sickness and he got sick, he pushed through better than he should have been able to.  And we know that was God.  He still has one more indoor season left, and we hope to make most of those meets ~ even the ones far away!

Peter is a real senior who changed his major and hopes to graduate next December.  He works on the days he does not have class and has helped me with some major projects at home lately.  He still keeps us laughing, in person and by text.  He is a huge help when I need him.  Will works with our neighbors still.  He graduated in the spring, a year late.  God worked in that situation so much, with teachers and the principal,  ~ and I know we don't even see most of what He did.  Then Will got his CDL and has been able to drive dump trucks and other big machines.  Our neighbors have been a huge blessing.  I have seen Will take apart vehicles and put them back together (kind of like Goober on Andy Griffith that time!), so I know God has given him talents.  And we pray he will use them for the Lord,

Sam is still our little happy person.  He had a rough start to his year in a lot of ways, but those things have vastly improved.  And we are thankful for that too!  He goes to Appalachian two times a week to learn to read.  And we are seeing great progress there ~ finally some hope after asking everyone for years for help, especially after learning of that event (a possible stroke) before he was born.  We constantly have to keep up with his diabetes, but he helps a lot with that ~ and everyone else in the family does too.  He was able to spend an afternoon and evening with Laura recently, and that was so special for him.  He doesn't have many people who can take him and take care of him.  We had a road race in October to benefit JDRF and raised over $8500 for juvenile diabetes research.  Thanks to all of you who helped with that in any way!  Our goal was to raise awareness and raise money.  We have about 270 t-shirts out there somewhere with the warning signs of Type 1 diabetes and hope our efforts may prevent even one tragedy of a late diagnosis.

It seems every year for the past few to several years that I tell myself that I will do better in the year to come.  And then all I can see is where I did not.  So I am really making an effort to be thankful and let God show me how to order my steps to do what He has for me to do.  Things are going to be different this year.  I know they are, and I am waiting for Him to show me.  Instead of being anxious, I am try to wait with anticipation fully knowing that He loves me.  I still work at Blue Ridge Pediatrics in the back, and it has been such a blessing in so many ways for the past seven years.  I took over some of Pete's cleaning jobs after his stroke, so I have a pretty full plate.  But I have great helpers and look forward to that time spent with them.

One of my favorite scriptures during Christmas is Isaiah 9:6,7

"For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.

7 Of the increase of His government and peace
There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this."

And Luke 2:1-20 ~

Luke 2King James Version (KJV)

2 And it came to pass in those days, that there went out a decree from Caesar Augustus that all the world should be taxed.

2 (And this taxing was first made when Cyrenius was governor of Syria.)

3 And all went to be taxed, every one into his own city.

4 And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:)

5 To be taxed with Mary his espoused wife, being great with child.

6 And so it was, that, while they were there, the days were accomplished that she should be delivered.

7 And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.

8 And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

9 And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

10 And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

11 For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

12 And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, 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, good will toward men.

15 And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.

16 And they came with haste, and found Mary, and Joseph, and the babe lying in a manger.

17 And when they had seen it, they made known abroad the saying which was told them concerning this child.

18 And all they that heard it wondered at those things which were told them by the shepherds.

19 But Mary kept all these things, and pondered them in her heart.

20 And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.

It's the best story next to that one of Easter ~ when this baby died for our sins.  Without Christmas, there would be no Easter.  And without Easter, Christmas would not be anything special.  But oh how special it is, because Jesus did come to save.

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One more thing...We have a Christmas special tomorrow, and it ends with "That's My King" by S.M. Lockeridge.  I love this, and it gives me chills.  If you don't know Him.  If He is not your King, please find Him today.  He already knows you.  He already loves you.  He already died for you.  He is just waiting for you to meet Him.

My King

The Bible says my King is the King of the Jews. He’s the King of Israel. He’s the King of Righteousness. He’s the King of the Ages. He’s the King of Heaven. He’s the King of Glory. He’s the King of kings, and He’s the Lord of lords. That’s my King.

I wonder, do you know Him?

My King is a sovereign King. No means of measure can define His limitless love. He’s enduringly strong. He’s entirely sincere. He’s eternally steadfast. He’s immortally graceful. He’s imperially powerful. He’s impartially merciful.

Do you know Him?

He’s the greatest phenomenon that has ever crossed the horizon of this world. He’s God’s Son. He’s the sinner’s Saviour. He’s the centrepiece of civilization. He’s unparalleled. He’s unprecedented. He is the loftiest idea in literature. He’s the highest personality in philosophy. He’s the fundamental doctrine of true theology. He’s the only one qualified to be an all sufficient Saviour.

I wonder if you know Him today?

He supplies strength for the weak. He’s available for the tempted and the tried. He sympathizes and He saves. He strengthens and sustains. He guards and He guides. He heals the sick. He cleansed the lepers. He forgives sinners. He discharges debtors. He delivers the captive. He defends the feeble. He blesses the young. He serves the unfortunate. He regards the aged. He rewards the diligent. And He beautifies the meek.

I wonder if you know Him?

He’s the key to knowledge. He’s the wellspring of wisdom. He’s the doorway of deliverance. He’s the pathway of peace. He’s the roadway of righteousness. He’s the highway of holiness. He’s the gateway of glory.

Do you know Him? Well…

His life is matchless. His goodness is limitless. His mercy is everlasting. His love never changes. His Word is enough. His grace is sufficient. His reign is righteous. And His yoke is easy. And His burden is light.

I wish I could describe Him to you. Yes…

He’s indescribable! He’s incomprehensible. He’s invincible. He’s irresistible. You can’t get Him out of your mind. You can’t get Him off of your hand. You can’t outlive Him, and you can’t live without Him. Well, the Pharisees couldn’t stand Him, but they found out they couldn’t stop Him. Pilate couldn’t find any fault in Him. Herod couldn’t kill Him. Death couldn’t handle Him, and the grave couldn’t hold Him.

Yeah! That’s my King, that’s my King.

Amen!

THAT'S MY KING!!!!!  The One we celebrate at Christmas!

Merry Christmas!  

Love, 

The Vandenbergs

Wednesday

Just a quick update.

Andrew had a bad seizure last night, and it was the first one he has had in over a year.  We were surprised and disappointed, but he just got up and kept on going today; so I did too.  I know God loves Andrew, and He wants what is best for Andrew.  And I will hold onto that.  I picked him up around lunch time and took him to the library.  He has two classes this afternoon.  I am keeping an eye on my phone, because he was still so tired.

Peter and Sam were here to help me.  Peter and I were cleaning up from scraping the ceiling in my bedroom, and one of them yelled for me.  I was upstairs cleaning something in the bathroom.  Sam kept Andrew from hitting his head on anything, and Peter got Andrew's emergency medicine and called 911 - which he cancelled before they sent someone.  Andrew was on the couch for a while exhausted, and Lucy made sure she was curled up at his feet.  It is funny to see a 95 lb dog curl herself up like that and look concerned.  We just made sure Sadie did not lick him.  When he went to bed, I slept in a sleeping bag on his floor - just to make sure.  Our doorbells are old and don't work, but we have not needed them in a long time. I will get another one just in case.

He has been exhausted.  At conference, he felt like he could have collapsed during the race and has never said that.  He did not run his best time, but he ran a decent time.  Last Friday, he ran a 10K in Virginia on the same course where he had a great race earlier this year.  He was about a minute and 45 seconds off last year's time, so he was disappointed.  But when I saw him at the 8K, I wondered that he could finish.  He looked that bad.  But he seemed okay after the race, just tired.

We cannot really test him for mono, as his immune system can mess up any tests like that.  So we will see how he is tomorrow and Friday.  He is supposed to run a road race in Charlotte on Saturday, so we will see.  We just keep praying for him and asking God to show us what to do and when.

The other boys are all good.  Sam is doing much better with his new insulin pens.  I am confident he actually gets his insulin, and we try to work around the whole units.

Pete comes home Friday - I pick him up super early in Greensboro.  So we are in a mad dash to put our house back together.  I hope he thinks doing the ceiling and redoing some things in our room are good!  It should go with our bathroom that hopefully will be done over Thanksgiving!

I always thought it would be great to redo rooms of sick children - to make their rooms clean and comfortable and something they really love.  But  I don't have the talent - or the funds - so I decided to do it at home.  I am doing a little bit on my own room, but I'm going to do Sam's in December.  I dragged him into every TJ Maxx and Homegoods the other week on the way home from Charlotte!  So I hope Pete likes what we found, and my neighbors will be glad when my new front lawn decor that appeared last night is gone (stuff sent out the front door!).

I think projects keep me and my mind busy.  I need that during times like this.  I feel like I could fall over today and may ask to be excused from choir practice after church tonight.  I never feel like that!  But I know God will give me what I need.  He always provides.  In all kinds of ways.  In many that I miss, I am sure.  I am so thankful that He loves me and is always here to help me with whatever I need.  Always.  Thanks for praying.

"But my God shall supply all your need according to his riches in glory by Christ Jesus."  Philippians 4:19


And I love this new Natalie Grant song.

"King of the World"

I tried to fit you in the walls inside my mind
I try to keep you safely inbetween the lines
I try to put you in the box that I've designed
I try to pull you down so we are eye to eye
When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so smallWhen you're the one who holds it all
When did I forget that you've always been the king of the world
Just a whisper of your voice can tame the seas
So who am I to try to take the lead
Still I run ahead and think I'm strong enough
When you're the one who made me from the dust
When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you're the one who holds it all
When did I forget that you've always been the king of the world
Ohhhh, you set it all in motion
Every single moment
You brought it all to be
And you're holding on to me
When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you're the one who holds it all
When did I forget you've always been the king of the world
You will always be the king of the world

Andrew's Story ~ so far

Andrew and I talked not long ago about him taking over his own story.  I told him that I have "shared" his story for so long, but I told him he would have opportunities to share what God has done in his life.  I wanted him to be thinking and be ready.  Like James says in the Bible, we need to "walk the walk" and not just talk about living for Jesus.  We should show it through our actions in every part of our lives.  And while we continually must strive for that, it is certainly worth the effort it takes.

A couple of weeks ago, one of Andrew's doctors contacted us and asked if Andrew would come to Charlotte to be on Charlotte Today with him.  Andrew was to appear as a patient and tell how his doctor has helped him with his immune deficiency.  Andrew agreed, not because he was thrilled to be on live TV but because he wanted to show his appreciation for his doctor.  I put the link to the show in the previous post.  It went well, and we came on home.

Andrew was contacted by Sports Information at Appalachian when they heard from his coach about Charlotte Today.  That led to an article that came out online on The Appalachian.  The link is in the previous post.










Today, Andrew texted me to ask me to get his medicine that he refilled online (something else he is doing himself!) and also mentioned he just interviewed with a paper in Winston Salem.  A sports writer wanted Andrew's doctor's contact info, so they may write a story too.

I felt compelled to fill in a little bit of information.  When I tell a story, it can be 10 pages to Andrew's one!

When Andrew was born just before Christmas in 1993, Pete and I were so happy.  He was adorable from the beginning, even following a very long and difficult birth.  We prayed the whole time and really believe we delivered him the "right" way even though it took a long time.  He was never in distress, but he came out with a very bruised little head.  I was so worried that they would mix him up with someone else's baby in the small Abingdon hospital, so I made Pete promise to leave me and go with him - no matter what.  Pete told me that his little head was so bruised that we would not get him mixed up.

Early the next morning, a young pediatrician was fumbling around in my room looking for a light.  He told me how slick the roads were.  He was very personable and friendly, but I wondered why he came to talk to me so early in the morning when no one else was there.  We had super nice birthing rooms in Abingdon at the old hospital.  However, soon after you had the baby, they moved you to the other side of the floor.  In the birthing wing, there was a huge room, television, and drinks and snacks - none of which you could enjoy during labor.  In the small rooms after the birth, a little man with a clipboard came around to ask if you wanted to "rent" the TV for $5 a day.  I asked Pete if we could - even though we considered ourselves no frills.  We had insurance but not much money!  Of course he said we could.  I will never forget that room or how everything was when that nice doctor came in.  And told me that my little baby was having seizures evidently.  He was kind, but I don't really remember anything he said after that.  I felt so scared and alone.  I knew God was there, and I begged him to fix my baby.  I remember calling my friend Paula early in the morning and asking her to pray, because I knew she would.  And I knew that's what Andrew needed.

It was a difficult week with Andrew in NICU.  I was afraid of my own baby, and I knew it.  But one day on the way to the hospital, I heard God whisper that I was Andrew's mother, and that He would help me take care of him.  I sit here with tears in my eyes, because God has.  On the worse days and in the worst nights, God has taken care of Andrew.

We came home with two seizure medicines that we gave  Andrew at 7:00 am and 7:00 pm.  We did not have anyone knocking down our door to babysit.  Everyone around us seemed a little afraid to be in charge of Andrew.  I let my mom give him his medicine one time in that first six months.  And I let him spend one night with my parents.  I think I left him with someone other than Pete for no more than two hours at first.  And he went to daycare part-time for a while.  But I was okay with taking care of him.  I wanted to be there for him.  And I trusted Pete was the same as I was, so that helped a lot.

We took Andrew off the medications when he was about six months old and did not have any problems for several years.

When Andrew was three, we figured out that he had not grown for almost two years.  Can you imagine?  By that time, we had Peter.  We should have noticed.  We should have taken him to Chapel Hill sooner.  But when we took him, we had the best doctor.  He was world renowned; and within a couple of months, Andrew's arms and legs had grown (the top parts that were smaller) and his face had stretched out.  Looking back, we can see how scrunched up he was.  We were so happy that he was on his way to growing to be 5'10" like Dr. Underwood predicted.

Until we found a small place on his bottom that looked like a weird bruise.  We thought it was scleroderma at first and dreaded our appointment at Baptist Hospital.  I mean, I did not want to walk into the office I was so scared and remember it to this day.  Our deacons from church came over and prayed over Andrew and us before we went.  We found out quickly that it was not that dreaded disease - and are still so thankful for that.  But we found ourselves on a long journey that took us from Baptist to Duke, where we wasted a couple of years, to Vanderbilt.  Evidently, Andrew had something the doctors had never seen as a primary disease.  They had seen it as a result of drug therapy for immune system problems (mostly in AIDS patients which, again, scared me to death).  Andrew was losing fat like crazy on his legs and bottom.  When it moved to an arm, one of the Vanderbilt doctors told us it could go to his neck and face and deform him.  She suggested a low dose of Methotrexate - a chemotherapy drug used for many things including juvenile arthritis.  Andrew took that every Friday for 2 1/2 years and was never sick.  The lipodystrophy stopped and has not come back.


Andrew was in school and doing well but would not talk.  He talked one week in kindergarten and did not talk at school until sometime in the third grade.  He asked Pete when he would talk at school, so he thought he had no control.  It was not the worst of what we faced, but it was hard.  And I got frustrated having to explain to so many people and frustrated that I could not get help.  At that time, I did not know when he would talk!  Or if he would talk!

During that time with lipodystrophy, Andrew had some weird liver tests.  The doctors who saw them determined that maybe he had a different kind of normal, and that was put on the back burner.

In the second grade, Andrew's seizures returned.  They were little foot twitches after he was born, which was bad enough - just hearing the word "seizure."  The new ones happened about twice a year and threw us for a loop.  He would get stiff and gaze up to one side.  It was scary, and he went back on medication.  It was determined that he probably had some sort of stroke before he was born, so he has scar tissue.  When it is aggravated, it can cause seizures.  That certainly is huge motivation to keep him well and even.  We felt pretty thankful that the meds worked and kept the seizures to a minimum.

Then in the sixth grade, I picked Andrew and his brothers up at school and noticed his yellow eyes right away.  I marched him right down to his kindergarten teacher, Mrs. Cottrell, and asked her what that was.  She said to take him to the doctor right away that it could be liver problems.  I called the doctor's office on my way there.  Once again, Mrs. Scaredy Pants showed up!

We were all in a room when my friend Carla, who runs the lab, came in.  She asked casually where Pete might be.  I told her he was working on our new house.  She told me to maybe call him.  Andrew's ALT and AST numbers were through the roof.   We had to rule out Hepatitis - the contagious kind - before he could go back to school.  We literally spent the next month getting labs, getting Vitamin K shots before labs, waiting by the phone, picking Andrew up from school early almost every day when he could go, and getting a liver biopsy at Chapel Hill.  He was wasting away, and finally our friend who is a pathologist in Asheville told me he needed to be treated or would end up with permanent liver damage.

Andrew had been on steroids a lot during his battle with lipodystrophy.  The Duke doctors had him take steroids and lots of them.  He had also taken another drug that treats arthritis and had him on a double dose.  The Chapel Hill doctors were telling me that the steroids stopped his growth.  And they did.  That was one reason we took him on to Vanderbilt.  The Duke doctors had no clue what else to do, and they would not send us anywhere else.  We did waste some precious time trusting them.

So the treatment for the liver disease was...steroids.  I am sure that is why Andrew is not 5'10".  When other moms complain that their children outgrow their clothes and how expensive they are, I still think they have no clue how blessed they are.

We never knew what the liver disease was.  The steroids stopped it, and we are so very thankful.  It has not come back.  And we are extremely thankful for that.  I know in my gut that it can at any time, so I am always so joyful when we get normal liver labs.

When the liver disease started, we took Andrew off his seizure meds that were processed through the liver.  He did well for a few weeks and then had a seizure in the cafeteria at school and fell back and hit his head.  I was about beside myself.  I was begging God to show us what to do.  I was scared and sometimes slept in the floor by Andrew's bed.  I was so afraid he would die in the middle of the night.  Every morning I ran to check to make sure he was okay.  I was praying for him all of the time, but I lived in fear at times.

We put Andrew back on seizure meds, and that was tough.  The new ones changed his personality, but we have a great neurologist who listens.  We found one that worked, but the nature of his seizures had changed.  They now included convulsions and what you see on TV.  He would stop breathing.  We had trouble calling 911, because our system here patronized you when you said he was not breathing because he was having a seizure.  Two different women said the same words, "Sometimes when person has a seizure, it appears they are not breathing."  I had to learn to say he was not breathing instead of he was having a seizure so the operator would flip to a different card.  Really?  Oh, yes.  It was a nightmare most of the time to call 911 when he was purple.  Pete would work on him and work with him while I was pulling my hair out.  I will say there was one male 911 operator who was a huge help when I needed him later - the epitome of what you should get when someone is not breathing.

The 911 situation was never fixed.  I went to a big meeting and was humiliated by some - for trying to help my child.  Most people there had no clue about our situation, but some took the word of others that I was just a hysterical mom.  That made me feel like a failure.  I mean, who cannot get 911 to help their child?  Me, evidently.  But when we have had emergency personnel at our house a couple of times, they were most wonderful.  It was getting them here that was the problem.  It all just added to the burdens we already had.

Andrew had a lower threshold for seizures.  He had them at home at night but had some at track meets and in class.  During that time, Sam was diagnosed at age 5 with Type 1 diabetes.  I remember telling God in the hospital, with the very little bit I knew about Type 1 at the time, that I could not do that...too!  I am not a nurse.  I used to turn green just getting near a hospital.  I had overcome that, but I was not a nurse and could NOT give shots!  And Sam's story is a whole other chapter in our lives.  But it winds in and out of Andrew's.

A couple of nights after Sam was diagnosed, and I was beyond exhausted, Andrew had a tough night.  Pete was in the hospital spending the night on the peds floor.  Andrew seemed fine at first, but it was fall, usually a difficult time with seizures, and I had specifically prayed that Andrew would not have a seizure.  Before bed, Andrew did not feel well.  I put him in my room and tried to sleep.  He woke me up around midnight talking about Geometry.  I flipped the light on and found him starting into a seizure.  Before I could get him squared away from that one, he started into another one.  I called 911 and told the guy I was skipping the questions.  I told him my husband was in the hospital with my other son and that my son was purple and not breathing and that I had no time to talk.  The ambulance got here pretty fast.  I was running around getting Andrew's medicine bottles like they instructed while trying to get Andrew to come out of it.  I don't remember much between the call and the paramedics coming in.  One picked Andrew up and ran out of the house.  He jumped into the back of the ambulance.  I was yelling to Andrew to breathe and for God to make him breathe.  It was a nightmare taking two minutes to get my clothes on and follow.  I could not breathe until Pete called me as I pulled into the hospital parking lot.  I had called him on my way and told him that Andrew was not breathing when they put him in the ambulance and rushed him away.

That night was awful, and it bothers me that I cannot remember much between the call and the guys coming in.  I was so helpless and could only call out to God - literally and loudly to help him.

The next week, when Sam still had the big syringes and two different vials with two different insulins, I took Andrew to Duke to a pediatric neurologist.  His neurologist here had made the appointment.  That doctor seemed perturbed that we were a work-in and treated us as so.  He suggested brain surgery and days of testing in the hospital where they bring on seizures.  I know some children need that, but my gut told me to get far away from that doctor.

I had a draft of an email in my computer that I had typed to the liver doctor at Chapel Hill asking if we could maybe go back to the old seizure drugs that we stopped when Andrew had liver disease.  Somehow it got sent to him one day - over a year after I typed it.  He called me and told me we could try that and keep tabs on his liver.  Now, that was all God.

We put Andrew back on a drug like his original one from second grade.  He did well, but he still had some seizures.  Since then, we have gone to a new drug that is like that one with a punch.  It is the best one we have had so far.

In 2011, when Andrew was 16, we took him to a doctor in Charlotte for his breathing and cough...finally.  He had had numerous walking pneumonia tests that were negative, but he seemed so sick.  (Because he really did have walking pneumonia and needed to be treated for it.)  Dr. Black did not think Andrew had asthma.  He asked a lot of questions and requested Andrew's medical records.  We sent him about 600-700 pages.  He called back in a couple of months to tell us that he wanted us to see a newer doctor in Charlotte.  We went to see him a few months later and had labs drawn.  Dr. Patel called us back within a couple of days to tell us that his test results were "alarming" and asked if we would come back and repeat them.  We did, and they were the same.  We did not know what that meant.

Andrew is not a textbook case of Common Variable Immune Deficiency (CVID).  It is where the immunoglobulins that help you fight off illnesses and diseases get so low that they need to be boosted with immunoglobulin therapy.  He had his first infusion at Levine Children's Hospital.  He opted to do home infusions each week instead of monthly infusions in the hospital.  A home health nurse came twice to teach us, and then we took over.  And then Andrew took over.

He responded well, but it took a while to boost his immune system back up from about 180 to 1000.  We initially were trying it for two years to see if his body would take over from there.  But it didn't, so he has had to continue.

Andrew is thankful to know what is wrong and that the infusions can help.  Dr. Patel set us up with a wonderful drug company that gives us financial assistance to help meet our insurance deductible and out of pocket.  What a huge blessing that is.  We have a wonderful patient advocate.  They make a difficult disease much easier to manage in so many ways.

Last year, our insurance (BCBS of NC) held up Andrew's meds in January.  He went without his infusions for about a month and got sick as a result.  This year, they did even worse.  They held up his meds until after Easter and then made it necessary to switch drug companies.  Our former company found us a new company.  Not only did BCBS hold up his meds without repercussions, they made no effort to do anything to help Andrew.  At the end of this year, they pocketed over $9000 with their practices - while I was emailing and calling them during that lapse time.  Andrew had NO lapse in insurance.  Just a poor insurance company who did not care.  Andrew got sick in the spring as I knew he would and missed most of his senior track season.  He has already been sick this fall.  Then  he had one great race and struggled with the next because he was so tired.  We are praying for him and trying to get him ready for conference next week in Alabama.  So the insurance is a huge obstacle for people with chronic illness.  I don't understand how they can get away with this, but I will drive to Durham if it happens again and sit in someone's office until it's fixed.  I even tried to put $8000 worth of meds on my credit card just to get them so he would not get sick or have a seizure.  It has been a most frustrating year with BCBS, but I am trying to ask God to show me what to do and not let it take over my life as it can do.  I have to fight for Sam's stuff too, so it gets very old.

Andrew won The Bear in 2015.  It's a five mile run up Grandfather Mountain where you climb a mile in altitude.  Yes, it's hard to breathe!  And he won!  It was only a couple of months after Pete had four strokes, so it was an extra special surprise and blessing.  With all of Andrew's struggles, seeing him smile really makes my heart smile.  And he ran one of the very best times - probably in the top 12 in the history.  He did not run this year.  He was sick.

Andrew has gone over  year without a seizure, and that makes me breathe better.  He had three episodes when his legs would not work, literally, and we thought he was trying to have a seizure but never had one.  He had dizziness, double vision, and severe muscle weakness.  We decided at his last neurology visit that those were probably drug toxicity from taking the highest dose of his second seizure med and to keep tabs on staying hydrated to counter act that.  I remember walking out of that appointment and Andrew laughing and saying, "Wow.  That was a great appointment!"  We have not had all of that many of those it seems.  I am thankful that was not lost on him - in the midst of all of this.

Andrew knows God loves him even more than we do.  And he has had to learn to depend on Him without really even knowing any other way.  We pray he continues to know this and know it with all of his heart.

We are excited to see Andrew run his last two meets.  It will be a little bit sad, but he has one more indoor track season left.  And then he may be running marathons!  That seems fitting!

Thanks for reading.  I will close with my favorite verse.  I found it in high school and how well it still fits today!

" But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."  Isaiah 40:31

New Update ~ Andrew in the News!

This is coming from my old email!  I have moved a lot of my contacts to my vandenbergwendi@gmail.com address, but it's been slow!

Andrew was named Sun Belt Runner of the Week by the other coaches in the Sun Belt Conference after his race at Panorama Farms.  He thought he was ASU runner of the week.  A man at church was trying to tell him differently.  Anyway, we were happy for him and happy that he was just happy with a good race.  http://www.appstatesports.com/ViewArticle.dbml?ATCLID=211194592

I put a copy of both articles in the mail to two of his Charlotte doctors; and while they were still in transit, his doctor called and emailed to ask Andrew a question.  Would he be willing to come to Charlotte and be on Charlotte Today as a patient of Dr. Patel?  Dr. Patel is in infectious disease and immunology.  The story was to bring awareness to him and what he does to bring awareness to immune deficiency.  On average, it takes 12.4 years for someone to be diagnosed.  With the help of our pediatricians, Dr. Black, and Dr. Patel, Andrew was diagnosed fairly quickly.  We'll never know how long he'd had CVID.  But we know that the longer he went undiagnosed the harder it was on his body, especially his lungs in his case.

So Andrew and I took off last Tuesday for him to be on Charlotte Today live for an interview with Dr. Patel.  You can see it on WCNC.  Google Charlotte Today and choose the segment on the doctor who helps patients outside the office. http://www.wcnc.com/entertainment/television/charlotte-today/doctor-helps-patients-outside-the-office/333950047  Andrew got a taste of live TV and was rescued by the wonderful anchors!  But he did well showing his appreciation for his doctor, and they flashed up pictures of him running in his ASU uniform.  Everyone was so nice and kind, and his doctor really appreciated that he came.  He has tough cases, I am sure.  And we are so thankful for Dr. Patel.  We ate at Five Guys on the way home - after I just told Andrew we needed to keep him healthy and tried to get him to eat more meat.  So we learned, once again, that Five Guys is great but also a huge treat!  Huge!

One of Andrew's coaches notified Sports Information at Appalachian, and I emailed the contact the information on Andrew that I had given the TV station.  Andrew had also emailed some answers to questions to her.  From all of that, a sports writer from The Appalachian wrote an article that appeared online yesterday.  Here is the link:  http://theappalachianonline.com/2016/10/20/running-with-purpose/  I love that this reporter left in the important parts about how we really prayed for someone to help Andrew. 

This morning, Andrew texted me to ask me to get his medicine and mentioned he had talked to a reporter at the Winston Salem Journal.  Someone from Sports Info emailed me and asked me for some contact information.  So they may have an article on him in the next few days. 

Andrew does not love attention.  He loves having a great race and telling his dad about it, if he is not there.  But not long ago, we really started talking about how his life is his story that I have been telling.  And he needs to share when given the opportunity.  Not to lift himself up, but to show what God can do in your life.  We have also talked about if something happens to me that he needs to know his own medical stuff more and be able to do it without me.  Not in a bad sense, just that he is older and needs to start taking over.  I will always help.  I would not wish fighting with insurance on anyone!

Andrew runs next Saturday in Alabama. He ran in Kernersville last Friday and had an okay race.  He was tired, and it showed at the end.  So we will keep a close eye on him and keep praying he stays strong and healthy.  His team needs him, and he wants to be a part of what they do.  I will not put anything negative here about my insurance company even though I still can.  I think God is lifting that burden off of me.  Even when I have to fight, I don't want it to run my life!  Then he will run two weeks after that in VA again.  And then cross country in college is over.  I am sad to see it end, but I know Andrew has more in him.  One indoor track season and maybe marathons in his future!  He hopes to run the Hopebuilders Race in Charlotte on November 19th that was postponed, because of the hurricane.  His coach suggested that, since cross country will be over.

Our JDRF road race/walk went well.  We could not have done it without a team effort.  My friend Paula was invaluable to me.  She has our Relay for Life race down to a science, and she helped me get organized and stay that way!  We raised well over $8500 for JDRF and awareness.  We had over 170 finish, and we had lots that walked and never came through the chute.  It was a great day, and we appreciated all of the support that we had!  Sam ran the 5K with Andrew and Peter.  He did great!  Will walked, so everyone in our family was there.  I made Pete be the official timer, and that was fun.  We had friends and family, and that meant so much.  Thanks to all of you who helped or donated!

Sam ran the middle school cross country race Tuesday.  He ran 1.5 miles in 11:41, which was great with not having a clue about pacing!  He was 17th overall, so we left before awards to go to a cleaning job.  A dear friend from church heard he was 2nd in the 6th grade boys and got his medal for him.  He was so excited.  He did not mind missing the awards as long as he got his medal! 

Pete did get that new pair of shoes.  He tried to get pink and purple women's shoes, because they were cheaper.  I told him we were not buying those.  I walked away and just asked God to take care of it.  I knew he needed some good shoes for him - not just cheap.  Well, they pinched his toes badly; so he ended up with a great pair of Mizuno shoes- in blue and yellow.  Just what he needed.

Peter and Will are doing well, and we are thankful for that.  It's cold here today and feels like fall.  Sam and I are working on our Christmas list this weekend, so we can look for things when we stop next week to take breaks.  He is very thoughtful and always has great ideas for gifts.  It will be easier to do in hot chocolate weather!

We have so much to be thankful for, and we hope that is what others see when they see our family.  Only with God's help can we get through anything.  Thanks for reading this. 

I know I have shared this verse before, but it's a great reminder that God wants what is best for us.  He is not "out to get us".  He wants us to trust Him and turn to Him for help and direction. 

"The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.”

Zephaniah 3:17

Love,

Wendi

September 28, 2016

Wow.  What a day.  So much going on.  But I am going to bed so thankful - really like I should every night.

I drove to Wilkesboro before church tonight to pick up our road race t-shirts.  I was driving down the mountain with some of the most beautiful views in the world.  But I was in a hurry as usual.   Then I saw the rainbow.  God's promise.  He knows all I have going on.  He reminds me in soft, gentle, sometimes beautiful ways that He is in control.  As a line in one of my favorite songs goes, "Sometimes I gotta stop, remember that you're God, and I am not."

I was excited to see the shirts.  With over 170 people registered for our very first High Country Type One Strong Race for a Cure, I have been thankful for the response to our road race.  We want to raise money for the Juvenile Diabetes Research Foundation which just came out with some great news today.  And we also wanted to raise awareness of early warning signs of Type 1.  So many tragic stories - and we want to put those signs out there on the radar of as many people as we can.  It could save a life, prevent a tragedy.  And in doing all of this, we find encouragement in helping others and supporting each other.  We all live with Type 1 diabetes in our families or are close to someone else who does.

Our online donations had taken a huge jump, and we were so close to our original goal in online race entries and donations alone.  I was happily surprised and have been tickled to see the donations top the $5000 mark this evening!

Doing this race has given us (the team) chances to share our stories.  We want to honor and thank God for his help with our children and others in our lives who deal with this illness.  Our verse is Joshua 1:9 - "Be strong and courageous..."

Just before bed, I checked Watauga Democrat online; and Andrew's name jumped out.  He was named the Sun Belt Runner of the Week by the coaches.  He did not think to tell me and thought it funny that I had found it online!  The timing is amazing.  He had a great race Friday in Virginia.  It was hot, dry, and dusty.  And he had been so sick.  But he ran a great race.  He felt great.  Those things that bothered others did not bother him.  It is truly a miracle.

Just today, I had to step back from my battle with Blue Cross Blue Shield.  They held up Andrew's medicine for months at the beginning of the year.  They were quick to tell his drug company he was not covered after January 1.  Then they shut down their communication, so the company could not double check.  The meds cost about $8000 a month, so they needed to know Andrew had insurance! I was begging them since February through calls and messages to help him get his medicine or his immune system would start dropping  And it did.  And I have the labs to prove it.  BCBS finally told the drug company Andrew was indeed covered, but then they dropped their reimbursement rate for this company (that we have used for a few years) to lower than 5% from 42%.  So BCBS threw up another road block.

After much fighting and tons of prayer, the drug company (not my insurance company who told me I could get his specialty drug at Walgreens for $70 - NOT correct!) found us another comparable drug company.  And we got to keep Andrew's wonderful patient advocate.  And Andrew got his first shipment AFTER Easter.

He ran two track meets in his last outdoor season at Appalachian.  And then he got sick.  Just like I had told them he would.  Just as I had feared.  But he was able to run at conference in Louisiana.  Not his best races, but he got to run the last races of his season.

I knew he could battle illness for most of the rest of this year, so I keep praying for his health.  After his first cross country meet and before the second one, he got sick again - with two things.  One was a stomach bug.  The next was upper respiratory - his usual problem.  Before Andrew was diagnosed with a disease called CVID, he had tons of URI's.  He probably had micoplasma a lot and not always treated as his immune system prevented the micoplasma test from showing it.  This was before we knew what the problem really was.

Dr. Black in Charlotte is always amazed that Andrew has no lung damage due to the number of infections and delay in treating them effectively.  Dr. Patel, another specialist in Charlotte, is amazed that Andrew was doing what he was when he was diagnosed.   They both, along with our local doctors, work hard to keep Andrew healthy and get him back on track when he gets sick.  They know he loves his running, and they go above and beyond to help him do that.

To run five miles up Grandfather Mountain and climb a mile in altitude should not be easy for someone with Andrew's medical history.  But God helped him do it.  And for that, we are so thankful.

So the hot, dry conditions that bothered so many should have shut Andrew down.  But it was a miracle, and he had a great race Friday.

This is timely because of the communication I have had with my insurance company this week.  One girl was just so rude and ugly.  I have asked for a nurse case manager, because they are usually more compassionate and have a clue what the patient deals with  But their attitudes had gotten to me again.  I really prayed today that I would not be sucked back into that place where they really have a lot of control over my day with the frustrations they cause.  And then God gave me the rainbow.  And then He directed me to the article about Andrew.  And that was after all of those donations I had seen for the race today!

God knows.  Sometimes I wonder why God ever thought someone like me could juggle all of this stuff - especially the medical stuff.  I used to turn green just getting near a hospital, and I have been in most of the major hospitals in NC and some outside.  It's taken me a long time to realize that is exactly why.  He knows my witness is that I cannot.  Only with Him can I get done what needs to be done.  So many times God wakes up an exhausted me - usually with Lucy our dog - to check Sam at night when he is low.  I check him a lot.  But sometimes I sleep through the alarm, or he needs to be checked at a different time.  Before Sam's diabetes, I know God woke me up to check on Andrew.  And more than once he needed us.  Once, I found him face down on the floor next to his bed in the middle of the night.  He needed us.  I would not have found him, but I know God shook my shoulder.  I know He did.

So for someone who deals with all of this (plus the insurance company), today has been one of those good days.  I feel God's hand on these things.  I want to praise and honor Him and give Him all of the glory.  He is faithful.  He is here.  Always.

I went over September 20 in my head a lot this year as it marked seven  years of diabetes in our family just after Sam turned five.  But September 22 was harder.  I was exhausted.  Sam was still in the hospital.  Pete and I took turns staying, and he stayed at night.  That was the night Andrew had a horrible seizure and was not breathing when they left with him in an ambulance.  Peter and Will were left alone, one sitting on the front steps of the house as I pulled away to follow the ambulance and firetruck.  I could not even stop to tell him it was okay.  My child was ahead of me, and I did not know if he was going to make it.  It was a long three miles to the hospital, and Pete called me as I pulled into the parking lot to tell me Andrew was going to be okay.  He had met them in the ER.

I remember that night, after I came home, I was almost too tired to cry any more.  I had cried out to God earlier that night to save Andrew, to make him breathe.  And I knew without a doubt He was listening.  I felt so pulled.  So helpless.  And it was easier at that point to give it all to Him.  I know I take things back and have to give them over again.  But that night will never be forgotten.  How I felt.  What I learned.  What I now know for positively certain.  God loves us more than anything, and He is always here to help.  After all, He already gave up His only Son for me.

I share these stories in hopes of encouraging others or even bringing someone to know Jesus who does not already.  It's my story. I know what happens in these places.  I am there.  And it's real.  And I know with all my heart.

Thanks for reading this!  I am praying the rest of this season will be good for Andrew.  But most of all, I want us to glorify God in what we do - no matter the circumstances.

Andrew's Race

I wanted to send a quick update and will update my blog.  My new email address is still vandenbergwendi@gmail.com.  I have not have one minute to switch my contacts!

Andrew was so sick for two weeks.  He missed his second home meet, and I was pretty upset about that.  Two things were going around in Boone, and he caught both illnesses fast and hard.  I was really concerned for him.  It knocked him down.  I just prayed that his seizure record would not be broken - for a lot of reasons.  I was upset at our insurance company who twiddled their thumbs while he paid the price for not having his medicine.  I thought, from messages I received from their escalation center (Pete said he could not believe they had a whole department for me) that I would be heard.  Then I got an email that was the same old stuff.  It really gets me.  So I emailed them back and told them I would go ahead and file my complaint with the insurance commissioner.  And I would decide what to do after that - with my information.  I know BCBS got fined for stuff like what they did to my family this year - over $3 million.  But the email was the same rhetoric and nothing that would help Andrew - like reassurances that the problems were fixed, etc.  With all my resolve to not let them upset me ever again, I am still pretty upset!  

So with all of that, I was concerned about Andrew running at Panorama Farms near Charlottesville, VA, yesterday.  I have tried to feed him meat and things he does not usually eat much.  I have gotten him tons of probiotics.  He is taking his asthma meds.  I am trying to remind him to keep hydrated with so much medicine in him.  And I have prayed above all else.  I just wanted him to reach down during that 8K and get what should be there - what he works for so hard.  

Sam and I prayed all of the way there.  We told God we would give Him ALL the glory if Andrew was okay.  We carried extra water in case Andrew needed it.  

There was a huge field.  In true Andrew fashion, he was probably one of the last 20 after the first 100 meters.  He was looking at his watch.  I almost missed him the first time we saw them at the 2K.  I did miss him the next time he came by until I heard Sam yell for him.  He was way above where I thought he would be.  It was so hot.  It was so dry.  Standing there, we just felt that sun beating down.  And Andrew had a ways to go still.  He probably had two kilometers left after the last time we spotted him.  So we headed to the finish.  Sam was to just look for Andrew when the runners came out of the trees and started in the straightaway into the finish.  And we thought we saw him, but then we did not.  But he really was there.  I sent Sam to run to the finish to see if he needed help.  I stopped my watch, when I thought I saw him stop.  It was 25:26.  I stayed and yelled for the others.  The heat had gotten to a lot of them, and I felt for them.  One of them needed his inhaler.  Andrew was just smiling.  It was truly a miracle.  How did those illnesses still not affect him?  How did he run in that dry, dusty, very hot place and not have trouble breathing?

It was all God.  And Sam and I got to watch.  That is a special gift.  I told Andrew today that we have to pay attention and keep him well.  

I got into the car a little bit later.  We had been there a long time, and Sam was so hot.  I just cried.  They were such happy and thankful tears.  I never thought to be proud of Andrew.  I was just so thankful that God not only took care of him but gave him a great race.

I will put the link here.  http://www.wataugademocrat.com/sports/app-state-notebook-vandenberg-leads-mountaineers-in-k-race/article_58f84a8e-8113-58c7-b554-1451d20b2b76.html  Very rarely does our paper acknowledge Andrew or Appalachian cross country.  So I sent them the goasu.com link.  They usually ignore it, but this time they put it in the paper.  I know people look for Andrew, and I want them to be encouraged by his story.  Of how God works in his life.

Sam and I went to Charlotte for his rescheduled appointment on Wednesday afternoon.  The rioting had calmed down that morning but started again after we left.  We were praying for law enforcement and the city and the hearts that need to be changed.  Andrew and I parked at the Nascar Hall of Fame last year when one of his doctors got us Panthers tickets.  It was unreal to see what went on there and other places.  And so sad.  Sam's actual appointment was good.  His a1c was up like I knew it would be because of malfunctioning insulin pens.  But it was better than I thought, and the doctor felt we had gotten things on a good track.  We felt okay to go to South Park and the Lego store.  The young man who helped us asked if we were there for a doctor visit.  He remembered us from months ago - probably about five!  He has a friend who was diagnosed with Type 1 diabetes in high school, and he remembered we bought a big Scooby Lego set to celebrate numbers last time.  We ran into the best pj store and found some new pj's on sale - that he has hardly taken off.  And then we came on home.

Thursday, we took off again for Staunton and stayed at the same hotel as the team.  We try not to bother Andrew, but he is always happy to see Sam.  And he had forgotten a couple of things, so we were happy to bring them to him!

Friday, we started home soon after the race; since it was about five hours  We took a detour to Abingdon to check on someone special and than came on home.  I am not able to go and go and go like I used to do!  

Our JDRF race/walk is next Saturday.  We are excited that we have had over 170 register.  We have had over $3400 raised online.  We hope and pray this run will bring attention to the warning signs.  One story that continues to get me is Kycie Terry (kisses for kycie on FB).  She was diagnose with flu or strep or someting that was going around.  She had five brothers.  She was diagnosed TOO LATE and had a seizure while being flown to another hospital.  And then another seizure.  She had major brain damage and died after months of rehab - soon after coming home.  It's a sad story, and we hope our efforts can save one child/person from tragedy.  And JDRF is committed to all of the things that make living with diabetes 24/7 a little safer and a little more bearable.  If you go to JDRF.org, you can search for the HIgh Country Type One Strong Race for a Cure in Boone.  You can hit register, and it will show you how much we have raised online.   Our goal is $5000.  We have sponsors who have helped with our t-shirt expenses, so we hope our extra cash donation will put us over the top.  It is such a blessing to see those supporters.

Tomorrow, Peter turns 21.  Where does the time go?  

Best quote of the day after I told Pete that Barbara Daye put on FB that a sports store in the mall was going out of business, and they had things 1/2 price.  "I may need a new pair of running shoes."  I have tried to get him some new shoes, but he said not until he was running.  And he is trying so hard.  He did not notice the tears that sprang up.  It's a big deal to me.  And once again, I whispered, "Thank you."

Thanks for reading this.  If you need a new CD, the Hillary Scott and the Scott Family is a great one.  I may have already told you.

Thanks for reading this.  Thanks for praying.