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. 

Another Update

Please pray for Andrew.  He is not feeling well, and he has another meet Friday.  We hope he will get well fast.  His first race was okay, but he did not have the energy or depth he should have had.  But he still looked good and strong at the beginning and middle of the race.  I have made our reservations for his away meets.  We will miss the October 1 race in SC ~ that's the day of our JDRF Run/Walk in Boone.  But Sam and I are excited to go back to Virginia to the horse farm!  We will also make a trip to a new place in Alabama.  This Sun Belt Conference is tough!

Sam is doing better after a terrible week last week.  His insulin pens kept malfunctioning until I gave up on them.  I had to get the disposable ones with whole units.  It's hardest at night to only have full units with someone his size.  But it's better than not knowing if he'll get his insulin.  I am supposed to return the rest of the pens I bought to join the others I already sent back.  They said they will reimburse me.  I am going to put all of that money in a special trip fund for Sam.  I think Andrew is going with me to take him somewhere special after Christmas.  I am sure the company won't reimburse me for all of the unused insulin in the cartridges, but I will be happy to get what I can back from those pens that I don't trust!  Reading at ASU is doing well, and school seems to be okay for now.  We have started some of our home teaching, and we hope to work in some educational things on our way to and from Andrew's meets in VA and AL.  It's hard to see someone feel so terrible, and I am thankful he is feeling better now.

Peter and I took a trip to the doctor Friday for a cyst on his wrist that comes and goes.  It was not big enough to drain with a needle - and I cannot see Peter doing that anyway!  We have decided to see if it goes away again - like if he hits it on the commercial mower at work again.  If not, we will have to get it cut out.  Before, it hindered his hand stands and movement.  Now it does that and hurts!  Other than that, he is doing well.  It took both of us to move a couch today, and he probably won't be moving furniture with me again soon.  But he was patient, and we got it done!

I noticed a young man in Carhartts on the side of the road near an old laundry that is being converted into something else on my way to get Sam.  He was in the road with orange cones and looked like he was drilling into the road.  On closer inspection, I thought it was Will and looked up and saw the dump truck. Sam and I came back that way and saw Will and Chad, one of his bosses, in the road with the cones.  It was good to see him hard at work.  I took one of my favorite trips Saturday morning to the trash dump.  In grabbing things out of the basement, I noticed a nice folder.  Inside was his diploma.  I cried thankful tears.  I had not seen it yet.  God is so faithful.

Pete and I went to a pastors' dinner at Greenway last week.  I did not feel like going.  I barely had time to run home after cleaning and taking Sam to reading to change my clothes.  Traffic was bad, and I was so tired.  But we got there and had a very low key dinner from Dan'l Boone Inn with several pastors and wives - not very many.  And I got to sit next to one of my favorite people I have not known long.  God has put this wife in my path only a couple of times now, but it's like she knows what I need to hear in five minutes or less.  It was such a blessing.

Life is so busy right now.  Too busy really.  But I keep praying, and God keeps providing.  Because Pete has not yet finished our bathroom and because he almost has, I started scraping our dingy ceiling in the family room.  It's like getting rid of the dusty old stuff to make it fresh and white and new.  What a great illustration.  I hope to be able to say in the next six months that it is done!  And I hope that I can say the same about me.  That I have been still enough for God to work and get rid of the dinginess in my life and make me whiter and new - like He did when He washed away my sin.

Fall is in the air.  Then it leaves for a day and a Florida summer day reappears!  But it feels so good, and I am so ready for fall!

Thanks for praying for our family.  We are doing a race/walk to raise money for JDRF on October 1 at the Greenway.  You can register or donate at jdrf.org.  You can go to events and look under run/endurance for the High Country Type One Race for a Cure 5K.  Our race verse is Joshua 1:9.  We hope to raise awareness and some money for JDRF.  Awareness is mainly the warning signs of Type 1.  I cry when I read of mostly children who are tragically diagnosed too late and die from a seizure or have brain damage or other issues.  I think God laid this on our hearts - mine and some other moms.  And my friend Paula is helping me do it - along with her family who is on my Relay for Life team for cancer.  If you are here, come and see us!

Thanks again!  

Andrew's New Specialist

~~~~~~~~~~~~

We went to Winston-Salem today to meet with a new endocrinologist for Andrew.  I should have done this YEARS ago.  I kept meaning to, and I even asked for recommendations.  But I did not do it.  I am so thankful we went today.  I wanted to get his thyroid straightened out.  I prayed we would meet a very smart doctor who took an interest in helping Andrew.  We have seen tons of doctors over the years, and this one impressed me from the start.  He is young.  He had already researched some of Andrew's medical issues  I found myself wishing I had one of Andrew's big notebooks with pictures with me.  I think this doctor would have been interested to see it.

Andrew got labs, and we'll get the results next week.  He is taking a huge dose of Synthroid for his weight.  He may need it but may not - if we change some factors and when he takes other meds.  I did not realize how dangerous a high dose could be in the long run.  I think this doctor will be proactive and knows some things to look for that have not been brought up in a long while.  We seem to have so many "separate" issues, and I am hoping this one doctor will look at all of them together.  There are not many cases of the lipodystrophy Andrew had at age five.  But this doctor had already looked for and found links with CVID and that.  

We talked a long time, because he was very interested in specific things.  And the doctor was very concerned about diabetes.  I assured him that I had checked Andrew just a few weeks ago (his blood sugar) when he was very fatigued and had once again dropped some weight fast.  He was a little surprised that his brother has it but does not have any of the other issues.

We go back in November, and I will take my big notebook - just in case it helps someone else in the future.

I asked Carla to look over a page of Andrew's paperwork before we went.  I know it sounds crazy, but I am afraid I will leave something out!  She did add one thing, and then she said something that reminded me how fortunate we are.  I feel like I have been somewhat exhausted for a long time now - months at least.  And I feel like I drag through days, sometimes looking forward to bedtime a little too much!  And so good things get by me.  But what she said reminded me that Andrew should not be driving and walking around and working on a tough double major and running on a college cross country/track team, and playing with his littlest brother so much - because of all of his medical issues.  He is a miracle.  And I needed that reminder, as silly as that sounds too.

 Andrew and I left, and he let me run into Marshalls and Homegoods before I got him lunch; and we headed for home, so he could go to practice.  It was hot there!  It was hot at home too!  Pete and I set up my yard sale, and it finally got so hot it clouded over and thundered!  I am so looking forward to fall!  I got some mums last week and cannot wait to put them out tomorrow.  It's my favorite time of year.

Thanks for praying for our family.  Everyone else seems fine.  School has started.  Sam is going back to reading classes next week and is at his school and doing things at home.  It will be a busy semester for him.  But I pray this is the year he turns the corner.  I cannot wait to see him reading a book on his own - which may be in the next year or so.  But we keep praying.  His insulin pens have malfunctioned, so I had to send three back.  They are supposed to replace them - the company.  And the issues will be reported to the FDA.  I found another mom who had the same problem.  Sometimes it takes a while to figure out why they are running so high.  Malfunctioning pens are dangerous, but they are the ones BCBS prefers now.  So we will keep that in mind and just keep trying.

Pete is on the homestretch on our bathroom.  I cannot wait to see the vanity that has been hiding in our basement for months!  He was hoping to land another trip to Israel, but he thinks November will be his next trip over.  He is already excited.  We had a road work day last Saturday, and the little bit of shoveling he did affected his speech on Sunday.  But the work got done.  And he can do a lot of work that does not affect him that way.  So we are thankful for that.

Thanks again.  Happy Almost Fall.  I am so ready for some cross country meets!

Our Type 1 Diabetes Story

In anticipation of our Road Race/Walk on October 1, I wanted to share our family's Type 1 diabetes story.

Just after Sam turned five, he started having some weird symptoms.  He had some similar symptoms a whole year before, so we were treating him the same way and thought he was doing better!  He never had accidents in the day or night after he was potty trained, so when he had them both times, we made sure to take him to the bathroom every hour on the hour in case he was having spasms or something - like we'd done a year earlier.  And he never said he was thirsty but kept asking for milk.

I was gone almost the whole week before he was diagnosed.  I spent the week in Chattanooga going to schools recruiting for the Office of Admissions at Appalachian.  It was so hard for me to be away from my family for that long, but I only traveled 3-4 whole weeks at a time and then had some short trips.  I remember calling Pete crying about something someone had said to me (in a message) that had really hurt my feelings.  I remember talking to my friend Paula about it.  I had let it pretty much ruin my week.  I was so upset.  Little did I know that "worry" would become the least of my worries soon.  And I don't remember all of the details, but I try to remember that what was so important and bothering me so much earlier that week was not really important.  And I try to not let those things overwhelm me now.  It can be a battle!

I remember leaving a school that afternoon and stopping at a McDonalds to change from my suit into my traveling clothes.  It was going to be a long trip home, and I was ready to get there.  I remember being in the office late that night returning my materials and cleaning out my state car.  I cannot remember if it was Thursday or Friday.

Saturday, Sam threw up.  He did not seem that sick, but we were supposed to go to Winston Salem the next morning to be at church where our niece was getting baptized.  I remember telling Pete if he threw up again that I could not take him.  He seemed fine when he went to bed.

Will got me up the next morning and told me Sam was sick.  He had gotten sick another time, but Will got him and cleaned him up and put him in bed with him - what good big brothers do.  They went back to sleep until Sam got up sick again.  I put him in the bathtub and gasped.  I called for Pete.  He looked like a little gray skeleton.  Pete said we absolutely had to take him to the ER - that he must have a bug and be dehydrated.  He did not look like that the night before.  That tells us how fast they can go downhill when they are so sick.  That is why we MUST get those symptoms out there.  What if Sam had not been at home?  What if we had not noticed?

Pete and Andrew had gone to a movie the night before, and our old car would not start; so I had gone to get them.  Which meant we only had one car that morning!

We all got ready to go, and Pete dropped Sam and me off at the ER and planned to take the boys on to Winston.  We knew he had to get fluids, and I could call someone after church to take us home.

Will begged to stay with me.  I wanted him to go to the baptism, because I felt bad about not being able to go.  Pete told him he could if he would help me.  And help me he did...

We took Sam in and saw someone we knew from church in Admissions.  They got us right back.  It was not crowded that early on a Sunday morning.  The nurse asked a lot of questions, and I was shocked to see that Sam had lost about six of his 35 (or less) pounds.  He was crying and asking for water and complaining that his stomach hurt.

The doctor came in, and I saw his name tag.  I did not recognize him, but I knew his name.  He was a doctor who had been so mean and hateful to me when I brought Andrew in in the second grade with a bad seizure - the first he'd had since he was first born.  He was so ugly and scared me and refused to check on Andrew.  He had also refused to call our pediatricians.  I immediately told God that I could not handle him.

But God knew what He was doing.  The doctor was loud and dramatic, but he was caring and got right to work on Sam.  He asked if anyone in our family had diabetes.  He said Sam had diabetes or pancreatitis.  And then puzzle pieces came flying together in my brain.

I am like a lot of people.  I had heard of diabetes.  I knew to be sorry for people who had it.  I even knew some symptoms.  But they did not present in a clear fashion.

I noticed Will sitting on the floor over in the corner listening.  When the doctor left, he had tears in his eyes and asked, "Will Sam be okay?"  I hugged him and told him that we would find out all we needed to know and take care of him.  And that he would be okay.

Sam was begging for water from the "water hose" (water fountain) in the hall.  He was pointing to his IV and then to his mouth just in case we were not understanding that he was dying of thirst.

My little gray skeleton was so strong that five people could not hold him down and get blood out of his arm.  I was so thankful Dr. St. Clair was on his way at that point and told them to just wait.  Dr. St. Clair took over, but the other doctor still came in to check on Sam.  He knew he was very sick, and he showed he cared.

Will had my phone and was texting people - I did not know it until I started getting calls.  Pete called from the church in Winston.  He said he would come on after lunch - because we still did not know how serious this was.  And Carla came right on from Sunday School.  Other friends were out of town, but Will covered a lot before I knew what he was doing.  He was able to get in touch with my sister and niece who were coming back from camping and should not have had service.

On the way up to ICU, Sam was allowed to have ice chips.  There was never a cuter little boy in a huge white bed sitting up shoveling ice into his mouth as he was wheeled to the elevator.  If he did not look so terrible, it would have been sweet.

I asked Carla if she thought we'd have to stay overnight - when we were still down in the ER.  Bless her heart, she and Dr. St. Clair spoon fed information to me until I could comprehend what was going on.

We got settled, and Pete sent me home with the boys while he spent the night.  We are the only ones we know who stayed at Watauga and were not sent off the mountain to Winston or Charlotte.  We had the room right at the nurses' station.

The next morning, I returned with a notebook and folder ready to learn what we needed to learn.  Pete went on to work.  Still no clue...

They checked Sam's blood sugar, and he was in the 40's.  So they gave him a snack in a hurry.

I remember that day was a blur.  We had lots of great visitors, and I had a lot of education.  But I knew I would never be able to give my child a shot, so I wondered how we could take him home.

But the biggest thing I remember about that day was that soon after Pete left, Sam started screaming and crying.  He screamed and cried but let me hold him for a solid 15 minutes - which seemed much longer.  The nurses kept peeking in but did not bother us.  I think he needed to get that out of his system, and he has never done it again.  I knew how he felt.  I wanted to scream and cry too.  A lot in the next few days, weeks, and months.  I mean, we could not feed him or let him sleep or go to sleep ourselves until we did all of these awful tedious things.  I wanted to go back to last week when we did not have this.

I remember sitting and watching Disney with him (we did not have that at home!) after we checked his blood sugar, and he'd cried.  I remember when he was sleeping, and I sat down to close my eyes; and the diabetes educator would show up to "teach" me more.  She did a great job.  I was just tired and overwhelmed.  And I knew I could never do this.

Reverend and Mrs. Thrasher called on the hospital phone.  They gave me tons of scripture and encouragement in about five minutes.  Then they asked to pray.  I remember stretching that phone cord and grasping the foot of my sick, sleeping baby and weeping as they prayed over us.  And I felt something rise up and renew inside me.  I knew God was with us.  I knew He would help us.  I had known that, but I was soooo tired.

Pete brought the boys by after practice.  Some of their friends who were Type 1 had talked to them.  And boy, they felt better.  They saw their friends were "fine" and knew Sam would be too.   I had moms come to see me.  One drove in the pouring rain to get us the JDRF backpack.  She was determined that we would have that information.  People came by and prayed and brought gifts.  One teacher pulled one of the boys out of class and told him that he knew all about diabetes if he had any questions or worries.

We had become members of this club, and it was awful but God provided so much at the same time.

I specifically prayed that week that Andrew would not have a seizure while Sam was in the hospital.  Fall was typically a tough time for him, and Sam was in the hospital on September 20th.  On Tuesday night, September 22, Pete and Sam were asleep on the pediatric floor after we had been moved from ICU.  Andrew did not feel well, and I put him in bed with me.  Around midnight, he started talking about geometry.  I flipped on the light as he went into a seizure and then it seemed another.  I called 911 and got a man on the phone (as opposed to some women who were awful to deal with in the past).  I told him I could not handle this and that my husband was at the hospital with another son.  He gave me information while he had the ambulance to our house in record time.  He had that ambulance here in the time that I would have still been giving someone else my address.  Andrew was not breathing, and they picked him up and ran out - not even bringing in the stretcher.  One of them, or a fireman, told me I had to calm down before I could drive to the hospital, and I remember thinking that they must think I was crazy.  But I was yelling at Andrew to breathe and for God to please save him.  I guess to them I looked crazy, while I prayed to God as loudly as I could.

I ran inside and jumped into clothes.  I asked Peter and Will to call Carla while I called Pete on my cell on the way there.  As I drove away, I saw Peter and Will sitting on the front steps of our house in the middle of the night without their parents.  They were only 12 and 14.  But I was certain Andrew was not okay, and I was crying and praying the whole time in the few minutes to the ER.  Pete called me back as I pulled into the hospital parking lot, right behind the firetruck who probably had waited to see me leave to make sure I was okay.  He told me he was down in the ER with Andrew and that he was breathing and okay.  I felt such relief.  Carla had come and stayed with Sam until Pete got back.

My parents came to help us get settled back in.  When I went to sleep again that night, I could hardly believe it.  I had warm wet tears and told God I just could not do this.  But instead of being hopeless, I felt reassured.  I knew He would have to take care of ALL of this.  And I knew He could.  And I have to still remember to trust Him and let Him work.  That's the only way.

After that eventful night, they hurried our education so we could bring Sam home.  We had our own glucose monitor but came home with two vials and syringes.  Two different insulins.  We had to draw up the medicine like you see on TV.  And we were not good at it.  And we had to give Sam a shot with a long needle at a 45 degree angle in one of the skinniest little legs you ever saw.  It makes me cry to remember.

Sam in the hospital at age 5

I remember a friend from work was there the first time I checked Sam's blood sugar on my own.  We (Sam and I) both cried, and she wiped tears too.  I remember when Pete called me late Tuesday night (before the other events) to tell me he had given Sam a shot.  I asked how it was, and he told me it was so hard.

Though more hard days were coming, I can say that by the end of that week, on Saturday, we were cheering on Andrew and Peter at their home cross country meet.  It did us all good to have a "normal" day.  A new normal but a good day with people coming up and encouraging us and introducing themselves to us as Type 1 parents.  Andrew did amazingly well and was his usual miracle self.

Mealtimes, night, mornings were all still hard.  We took Andrew to a neurologist the next week at Duke.  My mom had to watch Sam while I took Andrew in to see the doctor (who was hateful and had no clue about us or our family and seemed to just resent that we were a work in).  He got thirsty, and she did not know what to give him.  It was a miserable trip, and I was about beside myself.  I remember only being able to pray and ask God to help me.

We went to an endocrinologist a few weeks later and got insulin pens - which were the best thing ever.  We learned a lot and still keep on learning today.

Will was able to help me a lot at school - checking Sam's blood sugar before lunch.  All of the boys learned to count carbs and give insulin shots and check blood sugars.  My boys know more about ratios than they even know they know.  They know more about responsibility than they know they know.

I tried to go back to work.  I had to leave a lot.  They were gracious to take the rest of my travel and reassign it.  I finally resigned at the end of the year and took a part time job in the back at our pediatrician's office.  It has been a blessing as I can come and go as I need to to take care of Sam.  He does not have many people who can do it.

Sam  has never been hospitalized after that initial time at diagnosis.  We had one morning when he jumped on me and screamed and cried that he did not want to die and could see things crawling on his arms.  He was at 42 but must have been there for a while.  He had just gotten up, and I was getting ready to check him before I went to work.  It was scary, and the ambulance came but did not have to take him as we had already gotten him up in the 80's while the 911 dispatcher was still asking Andrew questions.  It took over 15-20 minutes for them to send someone, so God gave me an extra arm to put icing on Sam's gums, get a glass and pour orange juice, and sit in the floor and slosh the juice in his mouth until he had enough to make him stop jerking like he was having a seizure.  Then the boys woke up.  We are thankful that is the only extreme he has had even though there have been many close calls.  We have only "lost" his diabetes kit twice - once during a bomb threat at school (those people don't realize what danger they put people in) and when he left it on a sidewalk one time.  We got it back pretty quickly both times as it's his lifeline.

Sam doesn't go to camp.  He doesn't go spend a week with his grandparents.  He can't right now.  But he is fortunate that he has three big brothers who love him.  He loves them too.  And he does not have an alert dog, but we have a white golden retriever (with brown spots) who has gotten me up to check him before.  Lucy did not know that's what she was doing, but God used her.  And Sam loves Lucy and Will's puppy Sadie and loves playing with them.

We continue to use insulin pens, as he did not want a pump yet.  We deal with learning issues that are made tougher by high and low blood sugars.  We found out last year that Sam probably had a stroke (at least some sort of event like Andrew had) before he was born, and that has affected his learning.  So we deal with anxiety and other issues that arise from other things.

But we are so thankful for those who help us on this journey.  There are lots of tough nights, but we are determined to do our best with this.  Just this morning I woke up almost panicked thinking I had slept too long and had missed checking Sam in the middle of the night.  My biggest fear is that he will get too low at night and die in his sleep.  Next, I worry if I don't keep his blood sugars under control that I am ruining his organs.  It's always something.  And then if he is doing okay, the insurance part is a pain.  Or his pens malfunction.  Or something else.

We are thankful for the staff at school who take care of him.  We are thankful for doctors and nurses.  We thank God for all He provides.

Sam was baptized last year - overcoming his fear of doing it in front of people.  I want Sam to always know Jesus is with him and will take care of him.  I want him to learn good habits and how to take care of himself.  And though I would give the diabetes back in a heartbeat, I am thankful for what God shows us during these difficult times.

I am hopeful for a cure.  Sam told Andrew months ago that he hoped the cure was a pill, because he did not want anyone putting anything in his body.  Evidently, Peter had told him they were working on an artificial pancreas.  Pete said he hated that Sam was diagnosed at such an early age, because it's hard on his body.  But then he said Sam won't remember life before diabetes.  I don't think any of us do.

As we prepare for our first JDRF Road Race, I am overwhelmed by the support we have already seen.  My friend Paula gave us her fall road race spot, and she is helping get us organized.  We have had tons of help and offers of help.  We have two main objectives.  We want to raise money for JDRF, as they have proven to want to find a cure as well as better ways to deal with this disease.  And to raise awareness.  Too many die because they are diagnosed too late.  We want those signs out there on the radar more than they are at this moment.  And we claim the verse Joshua 1:9 ~ "Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."  

I have often felt dismayed, but I just have to remember that God knows all and will provide.  We just need to keep trusting Him.  And I do - with all of my heart.


I'll add the online application link soon.  Or you can register at JDRF if you want to walk or run or form a team!  Thanks in advance!

http://www2.jdrf.org/site/TR?fr_id=6487&pg=entry

Sam, age 11

Sam, age 11

The day we got Lucy!

Before Type 1

Sweet boy

Type 1 looks like me!

Before we knew about diabetes

Tweetsie Railroad

A summer wedding in Virginia

Lucy, the best dog!

Another hospital pic with George

Pop's tractor in Virginia

Loved running a cross country meet!

My precious boy

At the new house

Sweetest little brother

So worn out

One of the very best patients ever!