This Father’s Day

Almost always when I write, the pace is as fast as I can move my fingers.  However, when trying to express how this Father’s Day is different this year for us than in the past, the words just can’t come to me.  All I want to say is this:

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I’m including some of my favorite photos of Joe. Here he is, playing catch with Ava, 8 months old.

1.  Be in the moment with your kids.  Cherish each normal, average, ordinary day.

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This photo is taken on my own Dad’s birthday last year, September 13. Everybody is holding 1-day-old Violet at the Worthington Hospital.

2.  I beg you to forgive your father if you are holding anything against him.  As Ava grows up, we think there may be a time where she harbors bad feelings to us regarding her accident.  So, I guess, if you are in a similar situation at all, please know that your Dad loves you more than you could fathom.

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Dad comforting Liv during the County Fair three years ago.

3.  My heart goes out to all who ache on this day.   Perhaps it’s because you mourn the passing of your own father, or maybe it’s because you question your own role as a Dad.  You are not alone on this day.  Hang in there.

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Dad, ready to take Violet outside for chores in a baby carrier on a nice Minnesota winter day. Her feet sticking out on the bottom makes me smile.

Violet just woke up and so my day really begins.  I hope you enjoy this day of rest the Lord has given us.

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Indecisive Us

I so wish I could tell you that God has sent some lightning bolt that clearly dictates to us where Ava should go for her nerve transplants and grafts, but that is not the case.  Joe and I are still torn as we try to make up our minds. 

We have eliminated one center, the one in St. Louis.  The team of surgeons that we met with while there at Washington University were absolutely top-notch in their caring approach as well as educating us for what to expect.   However, they do not ever take part of the C7 nerve from the opposite good arm, and use it to try to gain some hand and wrist function.  They simply fuse the wrist and offer a muscle/tendon transfer to gain the ability to move her hand from a somewhat closed position to a more closed position, if that makes any sense.   

Ava had missed the last 5 weeks of dance class, but her kind teacher, Kay Prunty, let her dance a song anyway. She receieved a trophy along with the other kids for her work all year long. Photo courtesy of Amber Bergeson.

 The C7 nerve has various functions in a normal situation, and most of them are duplicated within the other 4 nerves that form a brachial plexus. So, the theory is that if a kid is young enough to have a mind that shows enough plasticity, half of the good C7 nerve can be transferred over to the injured side and the child’s body will be able to figure out what is left side and what is right side. 

Ava is in this gray area.  Typically, brachial plexus injuries happen to young men on motorcycles or babies that get stuck in the birth canal.  The 3 teams we visited had never seen a 4-year-old with this before. 

 

Ava is developing all sorts of interesting adaptations. Here, she is using her leg to hold the drinking water faucet on, so she can use her hand to hold the cup. It is so hard as a parent to watch and not jump in to help.

 
As a parent, you want to do everything in your power to protect your child.  We have always thought side-by-sides were so much safer than 4-wheelers because of the seatbelts.  In fact, Joe bought us this Gator last Christmas because it had more seatbelts than the Kubota we had.  Ava’s accident is a rare case where she probably would have been better off without a seatbelt.  The teams we met with said that Ava’s injury (having the C5 left intact, with C6, C7, C8, T1 all avulsed/pulled out of spinal cord) is typical when your arm is raised and then yanked away from your neck. So, instead of tumbling out, her arm got caught up in the 3-point seatbelt and caused her to lose function in all those nerves. 

 

They just barely beat the rain when harvesting our first-ever barley/pea crop. Vince and Liv were excited to help throw tires on the huge ‘slip n slide’.

 
So, here we are, knowing that God has ordained this tragedy for our little Ava, yet ridden with guilt as we try to think as clearly as possible regarding the huge decision of Mayo vs. Cincinnati.  I decided I absolutely wanted to have some dates held so last week I scheduled with both, and hope to cancel one of them within a week. The ideal situation is between 3-6 months after accident, and these surgeries are scheduled now for 3.5 months.  It takes 2 years to find out what will happen with the hand and wrist post-surgery, but usually around 6 months the nerves have grown enough to give some shoulder rotation as well as elbow flexion.  Ava has a March birthday and I think being able to go without a brace 23-24 hours a day would be a nice birthday present!  

Pray for clarity for our decision.  That we may be at peace and not second-guess ourselves. Pray for Vince, Liv, and Violet that they may know our love for them is stronger than ever.  We praise the Lord that Ava’s pain following her myelogram last week has now subsided.  We thank Him for the little things like Ava giggling as she considers that Mom and Dad were once kindergarteners.  I hope you have a great weekend and enjoy each day given to you.  

God has a plan: choosing between Mayo, Cincinnati Children’s, and Wash U

Not even so much as a hair can fall from our head without the will of our Father in Heaven.  I sincerely believe this — God has a plan.  Through tears I ask you to tonight to pray for us as we make a decision soon as to where we will bring Ava for surgery to repair her brachial plexus injury.   

 She is in a huge amount of pain today as she is recovering from a myelogram yesterday.  It bothered her nerves (more nerve trouble, imagine that)in the low part of her back.  She can barely walk and is hunched over as she attempts to move.  We weren’t about to leave Mayo until we had an appointment with a pediatric neurologist who is very confident Ava will bounce back by Friday.  Very scary for us and just a ton of tears from Ava. 

 

The Yager family with roots from our church took us in for two nights. They were such a blessing to us, and Ava was thrilled to make new friends!

 
Mayo’s proposal is again a new and different one than we heard last week from Cincinnati as well as Washington University in St. Louis.  Brachial plexus injuries in children Ava’s age are extremely rare and, in general, there isn’t a textbook for how to proceed. All are proposing nerve grafts and nerve transfers to get back some shoulder and elbow function by next spring, although it will never be close to normal.  The hand and wrist are where the differing opinions come into play (still very minimal function) and we are made aware Ava has more than a decade of procedures and follow-ups to come.   It gets super technical and I guess I just want to spare the details right now. 

Here’s the point.  

Ava will undergo surgery in about 6 weeks.  May God gives us clear direction as to who will do it. 

Then, her nerves will grow at the rate of an inch a month.  May God give us patience as we wait.  

Finally, please pray for our family.  Our pastor certainly spoke words of wisdom the week after her accident. He said in the four years he has been serving our church, he has come to know that each and every pew in church has folks in it with a heavy load on their hearts. No two loads are the same but we all bear one. 

It is so true.  This is just our load right now. It hasn’t been easy for our kids, my husband or me.  Yet, you walk the same road as we do…riddled with bumps and curves.   I can’t express enough the appreciation I have that you have stood beside us on our journey.  Please pray for us again tonight.  

We got her a pink donut to help ease the pain.

Here at Mayo

Right now, we are waiting here at Mayo clinic in Rochester.   We traveled to Cincinnati Children’s and Washington University in St. Louis last week and got very differing opinions on how to handle reinnervating Ava’s right arm.  

This third opinion we will get tomorrow will hopefully help us make our decision with clarity.  Before meeting with this team at Mayo tomorrow, they wanted a CT scan and a myelogram.  The other two were indifferent to the testing but we will just send them a CD with the results.  

  We arrived at 8:00, with the CT scheduled for 8:15 and the myelogram.  There was a lot of confusion here with some people thinking the tests should be in the opposite order, some wanting anesthesia for just the myelogram and not the CT scan ….anyway long story short, it is looking like a LONG time until Ava can eat again, and maybe a full day of testing instead of a couple hours.  

We are praying for good news that her C5 nerve is not just attached but really in shape to be working fully.  Hopefully these tests are indicative of that. 

I will hopefully update tomorrow on our way home with more information about the differing plans of the 3 Brachial plexus teams and their plans.