Update 7/24/16

I hope you are getting along okay in the heat.  At church and home, it's been a hot weekend.  I ran to Cook Out today and got milkshakes - and have never really felt the need to do that before!  We got a small plastic pool for the dogs, and it can still be filled almost all of the way even if Will's puppy has already chewed two holes in it!

Andrew's appointment went well last week with Dr. Patel, his immunologist/infectious disease doctor.  We were in and out quickly as the doctor had a new resident and a new patient.  But we went over all of Andrew's information and found out he was not the only one who had trouble getting his infusion meds this year.  Andrew opted to give a lot of blood for genetic testing.  We won't get those results back for months, but it's for research; and his case is particularly interesting because of his autoimmune problems.  We may find something in that that will help treat him in the future, and hopefully it will help others.  We did get back Andrew's two other labs and found his B12 (that we should have gotten late last year) to be on the lower end of normal.  So we will check his diet on that.  His IgG that was around 600 right before he started back on his meds after Easter was still down in the high 700's.  But he was due an infusion soon, so we hope the number is really higher on average.  I am now a little nervous that they will kick us out of these practices, since Andrew is 22.  I just don't have it in me right now to break in a bunch of new doctor offices!  He also has an appointment in August with a new endocrinologist.  The short story is that I switched him to Charlotte to Sam's doctor in 2009 when Sam was diagnosed with Type 1.  The doctor saw him a couple of times and seemed intimidated by his medical record and released him.  Soon after, his thyroid numbers were messed up; and one of his pediatricians has been kind enough to look at his labs and refill his meds.  I am finally taking that pressure away from him and taking Andrew to a new doctor in Winston.  They took him even after seeing part of his medical record.  I really should have left him at Chapel Hill where he went for 13 years.  His doctor there just died a year or so ago but had been retired for a while.  I credit him for helping Andrew the minute he saw him, and we had already lost precious time.  I am sure they still have pictures of Andrew and Peter somewhere in their files when they were so little.

Sam has been running high all weekend, and I am frustrated as I don't have a lot of extra pens for his newer insulin.  I think it's hit or miss- whether or not he is getting his insulin.  So I will have to go order another pen tomorrow.  Going without his insulin is not an option, but we are limited since Blue Cross changed his insulin last year and did not give us any warning or time to try to keep the old one.  I have been up many nights in the past two weeks with bad lows - sometimes up to two hours.  So the insurance part is so frustrating, because I am too tired to deal with them.

He loved the rest of his camp.  He got to do the behind the scenes tour at the stadium and had Coach Weaver's son, Mr. Jay, show them around.  He was excited to tell us all about it.  He even saw Coach Curcio there and was able to tell his friends that he had just been to the underwater treadmill with Andrew.  

Peter is working and getting through his tough on-line class.  I was thankful for his girlfriend today who was helping him over the internet with his long paper preparation.  Will is working, and I watched in amazement yesterday as he picked up a truck in our driveway with a teletruck (or whatever it was!) and placed it on a flatbed trailer.  I told him it was all of those Tonka trucks we bought him when he was young that taught him to do that.  That freed up most of my basement for a couple of hours until Peter filled it with furniture and stuff for his friends for their few days in between apartments!  That is still on the summer list to clean.

Pete is still working away on the bathroom, and the floor looks great.  He uses bringing in and stacking wood (from trees that came down during a storm that a friend cut and brought) as his physical therapy and then runs up the neighbor's driveway which is a small but long incline.  He usually has a dog or two or three helping and sometimes a little blond haired boy.

We don't have any doctor appointments until Sam goes back in September, I believe.  So we have a little break from all of that, so I can hopefully catch up and get organized.  I am making notebooks for everyone about what they have and the doctors who help them.  Andrew wanted one.  He has done well taking over some of his own things, but he still feels better with me going along.   I almost broke down and bought the favorite planner of many I know.  But I couldn't do it!  So I bought a new one at TJ Maxx yesterday for under $8 and hope to get it filled with my much needed information.

When Blue Cross called the other day to tell me that had not heard from me in a while, I just felt so aggravated - instead of thankful.  I took the opportunity to remind the woman that they had cost us so much time and illness already this year.  I was respectful and matter of fact, but I realized that they have more power over me and my stress because I allow it.  Our sermon this morning was on prayer and also about worry.  I pray all of the time, but I still worry about so many things.  And I let so many things bother me.  I can sure be oversensitive.  For an illustration, Pete went all the way back to our early married days and FCA where he said I would volunteer him to pray.  And he was not comfortable doing it (even though I did not know!).  It was a fitting story today, because Coach Moore was visiting at our church with some friends.  Pete said that Jim Henry, a pastor from First Baptist Orlando, told them on a trip to Israel that you are more comfortable praying in a group when you are prayed up when you pray to God alone.  It was a good sermon.  And that followed a good sermon about what the church is from Pastor Martin at Country Church last night.  And I could listen to Bethel Road all night.  They were such a blessing and sang some favorite songs I have not heard in forever.

It's amazing how God has people placed just so, so that I can run into them on campus or at Walmart or even Country Church.  People who have a word of encouragement that strikes right where I need it and can really hear it.  I thank God still for those people who allow God to use them to help people like me in tough days, weeks, or even years.  God is good.  He surely is.  I know there are so many out there fighting terrible things, and I am thankful I have the confidence that God will help them with whatever it is - if they'll let Him.  It's just so unreal how much He loves us.

I am off to make sure my air conditioner is going full blast!  Thanks for reading this.  Thanks for praying for our family!

Wendi

 

New Update 7/13/16

Andrew went back to the neurologist on Monday.  We explained his two episodes from last week and in February (he was dizzy and could not stand or use his legs).  After pondering just a minute, Dr. Crittendon said he thought it was drug toxicity.  Andrew takes so many meds that sometimes they can just take over, I guess.  So we will make sure he drinks plenty in order to help not have that happen again.  We just got labs back today that say one drug level is a little bit high, what Dr. Crittendon suspected and Carla confirmed.  But we are not changing anything.  If we don’t count those episodes as seizures, he has had a good run without seizures.  And we want to keep it that way!

This was the year to miss The Bear.  The wind was gusting over 70 mph on top of the mountain, so they had to move the finish to the parking lot below the swinging bridge.  It was chaotic (per people who were there), but it was a good option.  And the race officials are the best.  Andrew and I helped at the Grandfather Mountain marathon on Saturday.  One finisher said the shortened Bear was his PR.  If he added the 3-4 minutes it would have taken him (at least) to get all the way to the top, he would have run his worst time.  So he told Andrew he was keeping 2016 as his PR!  I was sad that Andrew said that afternoon that he wished he could run, but we knew there was just no way after the Wednesday he had.  On the bright side, his knee feels much better; and he is out running on the roads again.  And we were both SO happy to leave the neurologist thinking he did not have seizures those times.  That is a HUGE deal, and we praise God for that.  We did not expect “good” news – how awful of me!  I know God can heal anything – no matter how long, how bad, how unlikely.  He can do anything.

Sam loves his Language Camp.  He was quiet the first 10 minutes Monday and then was totally comfortable.  Yesterday, they went up to the track; and he got to hurdle, high jump, and use the starting blocks.  He said Coach Weaver was there and told him he set a new record doing the high jump in sandals.  He had on sandals, because his school tennis shoes have become a chew toy for one of our dogs, not mentioning any names.  I have been looking for new shoes for him since before school was out, but it’s hard to find his size here.  Since Andrew and I go to Charlotte on Monday to the immunologist, maybe we can find some there!  And then we’ll have to hide them on top of the fridge!  Anyway, this camp is for children with learning difficulties, and it is the only camp some of them go to or can go to.  So they make it extra fun.  And he is having a great time while he is learning.  I am so thankful for those who invest their time in children who have a hard time, for whatever reason.  I don’t know if most summer camps would take Sam and his diabetes, and I have never felt comfortable enough to ask.  So I am thankful he gets to do this.  That is a big deal too, that God totally worked out.

~ “ But my God shall supply all your need according to his riches in glory by Christ Jesus”

Philippians 4:19 ~

Everyone else is just busy getting things done this summer.  We started Country Church at our church on Saturday nights at 6:00.  Bethel Baptist is really doing it and using our church.  They have bands and then preaching, by Charlie Martin from Bethel.  Pete is so excited to be part of that.  He has wanted to do something on Saturday nights for a long time, and Charlie asked him to help at a different location.  When that location fell through, Pete offered our church which is only five minutes from town on the way to Blowing Rock. 

Peter and Will continue to work every day.  Andrew is Sam’s main person, and he is invaluable.  They even go to get groceries at Walmart together and have a movie planned for Saturday.  Pete has gotten a lot done on the bathroom, and we are excited for the next phase and then to finish!  We are still working on getting more “stuff” out of our house and will probably have to make a few trips to the dump and have another yard sale and donate a ton of stuff before we get to where I would like things to be.  Less is more.  That is trying to be our new motto!  For things on this earth.  My uncle and aunt sent a Christmas letter about getting rid of 75% (?) of their possessions before moving and how it affected them.  Andrew asked if we could do that, and it sounded wonderful.  We cannot hit 75 right now, but we are shooting for something reasonable by summer’s end.  I love to watch organizational shows on Netflix and now like to see how the Tiny House people do it!

We are so blessed.  I think I sometimes have to look back in order to move forward.  I tend to get bogged down.  I have been seeing things that God has worked out that I have already started taking for granted.  That affects my perspective moving forward, and I want it to affect my perspective in the best way.  So I have been looking for all of those blessings I may have missed and concentrating on being thankful for those I remember.  To run into someone or hear from someone at the perfect time is a blessing.  To look up and see two of your children coming to sit by you in church on a Wednesday night is a huge blessing.  To see your children help each other without even thinking about it.  AND, to have grease stains on the fridge handles and pretty white kitchen cabinet doors – now, that is a real blessing (that I could easily miss).  Even those mounds of laundry some days (even though the boys usually do their own) are blessings. 

~ “Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.” 2 Corinthians 12:10

In my devotional, Jesus Calling, I am constantly reminded that the trials on this earth are blessings when they make us more dependent on Him.  I pray I will remember that often.

Thanks for reading this.  We hope you all have a safe and happy summer filled with blessings from God and reminders to you that He is always there and loves you more than you can imagine.

July 7, 2016

I sent this email yesterday.  I must admit my eyes filled with tears today when I thought about going to The Bear.  And then Andrew said he wished he was running it.  But God sent me encouragement.  There is always next year!

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

Andrew has had a rough day.  He feels much better now, but he called me mid-morning to tell me he had fast onset terrible fatigue and dizziness.  He also could hardly stand up and could not walk alone.  I put him on speaker phone as I ran out of my office (again) and hurried home.  Sam helped him lay on the couch and move the coffee table away.  I am thankful for my little nurse/helper.  He had his own stuff ready to go by the time I got home.

We got to the doctor, and Carla met us with the wheelchair.  He had labs after Dr. Lonas talked to him a bit.  Since the labs looked good, and Andrew felt he was getting better and not getting worse, we came home a little while ago.  He has had lunch and is resting in his room watching something on his laptop.  He was able to walk to the car and into the house alone.  So that was a good improvement.  He seems to be bouncing back pretty well, though he is very tired.  He will eat more and drink plenty of Gatorade this afternoon.

He had already decided he was not running The Bear which is tomorrow.  His pulmonologist did not tell him not to, but he told Andrew if he was still run down from his rough spring that he could always run it next year - that he had proven himself in that race.  Then he added that he wears his two Bear shirts all of the time and has not yet been asked if he ran the race himself!  We love Dr. Black and how he thinks of things that really help Andrew.  We also have more medicine information if he gets sick again.  

Anyway, because his knee has been bothering him a little bit, he had decided to not run this year.  So today was a bump in his training, but he had already decided not to race tomorrow.

He goes to the neurologist in the next week or so, so we will be checking on what these "episodes" may be.  We tend to assume they are seizures, but Dr. Lonas said we cannot know for sure.  And he said some of the more worrisome reasons should be getting worse.  So we will pray about this and see if we can find out what is causing them or at least check things off the list.  I had already checked his blood sugar yesterday, because we thought he'd lost weight.  He was not happy about having his finger pricked!  He would much rather Carla take it out of his arm!

We also go to his immunologist in a couple of weeks.  He may have some ideas too.  Andrew just finished up his chemistry class and lab, so we are thankful he has that out of the way!

Sam is doing well.  He is going to reading twice a week and has a camp for two weeks starting next week.  He has not been able to go to camp or go spend a week with anyone, so we hope he will have a great time.  I think his teacher makes it so fun they beg to come back.  This year is an Olympic theme.

Peter is working a lot and climbing.  He just started an online class.  He tries to get in 25,000 steps on his fitbit every day.  Will is also working every day and just fixed Andrew's truck for him last week.  

Pete is working and working on our bathroom renovation.  He got all of the floor down except under the vanity.  He was  not sure after the first row, but he kept on.  He has walked with us a little bit, and he has had to run when being pulled up the road by Will's puppy Sadie.  He said Sadie is strong enough to pull cars out of ditches! 

I sometimes wish life could just be mundane and boring.  I start to falter and take my eyes off of Him.  I see my child struggle - any one of them.  I see my husband walking crooked up the road.  I see him pale and worn out after working only a few minutes.  But then God shows me that He will help my children through their struggles - no matter how long or hard.  He gives Pete strength to take breaks and finish what he started.  And he IS walking!  

God knows where my life will lead.  He knows what will happen.  I need to remember that He is in charge.  Joshua 1:9 says  " Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

So I will keep working on that "getting discouraged" part.  I appreciate those around me (and some have no idea) who allow God to use them to encourage me.  

I hope your summer is going well.  It's sure flying by.  It's time to plan something for a couple of days before it's gone!  

Andrew and I look forward to helping at the food tent after the marathon finish on Saturday.  Maybe one day I'll have a marathon finisher in my family!

Thanks for praying for our family!