Cardiologist Follow-Up

We drove a couple hours to see Sam's cardiologist this week.  He had a great report.  His new device is literally reading that its battery life has 12 years on it!  We know this will change as the device paces him, gets interrogated and possibly even shocks him over time, but the general idea is - it will last a long long time.  His cardiologist, whom we adore, told us that it is likely the next time he has to have this ICD replaced, he will be big enough for it to move up to his shoulder (instead of being in his abdomen, as it is now).  Overall, the report was excellent.

Sam and Parker, the Travel Awareness Bear, got EKGs this week.

He is limited in his physical activity for a couple more weeks.  We were reminded that he still shouldn't do certain things, like sled on his belly and swing on his belly, which is mostly to prevent a break in one of the leads.  He will only need to interrogate the device at home once a month now and we will see the cardiologist again in four months.

He is still struggling with his identity right now - mostly that he can't play rough with the other kids or do some of the physical activities he truly desires to do (but, to be fair, it hasn't snowed yet...).  So, I am continuing to encourage him in his differences and allow
him to enjoy watching the other kids wrestle for now.

But he is gaining his beautiful attitude back and he enjoys life to the fullest.  We were at yet another doctor's office this week, waiting to be seen and decided to play a little game.  All these doctor's offices are making us giddy.  So, for those of you who are asking, "how's Sam?" see for yourself.

Back to Life

Today is the first day Sam has gone back to school since his surgery. He goes to a school two days a week and I homeschool him the other three days, so, to be fair, he really hasn't missed any school as I have been homeschooling him full time.  But when he woke up this morning, his belly was mysteriously hurting him and he began crying about not wanting to go to school.  When he finally shared his heart with me, I learned that he is worried about being different from the other kids. He wants to run with them at lunch time and be active like his friends.  

I suppose we will need to unpack his emotions a day at a time and certain issues will come up at odd intervals.  This morning, we prayed, we talked, I told him he is allowed to run again.  We had to talk about how he IS different from the other children, but that is okay.  We prayed some more and I told him he doesn't need to show anybody his belly if he doesn't want to (he has been showing a lot of people his scar).  He said, "But, Mom!  That's my favorite part of it all!"  

Oh, how far we have come from that sad little boy who was afraid of what people would think of him...

And, oh, what complicated emotions he has.  

But, oh, how blessed we are.  This child can communicate clearly what he is feeling, and I really appreciate that.  He is feeling all the appropriate emotions and then some...and, oh, how grateful I am he is here to feel anything at all.  

Well enough to pick out a tree with his brother and sister

Day by Day

We are continuing to get emails, letters, and phone calls from all of the people who adore our sweet Sam.  We are so appreciative of the outpouring of love we are receiving.  Please forgive me if I am unable to write thank you notes to everybody, but I am working on it.  

Sam awoke this morning and decided to frighten his sister.  He got quite dizzy afterwards, which we are going to attribute to the loud "BOO!" he shouted.  But he also complained about some abdominal discomfort, so he is back on Tylenol for the day.  

Otherwise, nothing new to report.  He is almost walking upright; just slightly hunched over at the shoulders now.  He's eating normally and his tummy troubles will probably go away now that he is off antibiotics.

Again, we appreciate the prayers.  Keep them up!!

This World

A dear friend wrote this to Sam tonight:







"Your beautiful body tells a story.  'In this world, you will have trouble, but do not be dismayed.  I have overcome the world.' (John 16:33)

Trust in His love and constant presence - He has not and will never forsake you - through thick and thin.  He will teach you the depths of His love for you - and for this broken world.  You are such a gift." 

-- AC

Our lives tell the story of our great Savior.  We are honored to walk this life to praise Him.  We are blessed to be a part of His plan, however painful and unfair it may seem.  

One thing is true, God loves us.  We can know His love through His word, this world,and through our brothers and sisters who also have confessed that Jesus is Lord.  

Back Home

We are grateful for all of the prayers and blessings our families and friends have poured out over us.  Sam has been getting endless cards and emails from people, which has brought a smile to his face.  We arrived back home last night and were blessed, yet again, with a meal from a sweet friend.  When we came home, we found that our Sunday School class has come to our home while we were away and cleaned, vacuumed, did laundry and left us a meal (which we are going to eat tonight). We really do cherish these earthly moments where Christ's love is poured out over each and every one of us.

Sam is checking out Parker, a Travel Awareness Bear 
who also has an ICD just like Sam.

Sam is healing well.  I believe we were all surprised by how painful his recovery has been.  He is almost walking completely upright now and he prefers to be up and about rather than confined to a chair.  This morning he is choosing to spend his time shooting a suction-cup gun at various targets around the house.  Back to his old shenanigans...

When we took his bandage off on Saturday morning, Sam was so sad to see his belly.  I took a photo of his reaction, but it is too personal to post publicly on the internet.  Needless to say, he has gone through stages of emotional reaction to the new wound and he is now at the point of acceptance.  He even proudly showed it off to a friend last night.

I will continue to update as I am able.  I think we have all been taken aback by the exhaustion every last one of us in our family has felt.  At any point throughout the day, any of us could lay down and take a nap.  However, we have renewed strength in the Lord and with the help of our friends, we know we will recover fully.