Hard work ahead 

Yesterday, we had our second post-operative check-up.  The first was shortly after her surgery to check the incisions and to get “the okay” to take her arm out of the sling.   The visit yesterday, which was 5 months since her surgery, was a visit that looked like what most of her visits in the future will look like.  (Sorry for that last sentence.  My brain must be in travel mode.)

I have no idea how I packed Vince such a worn pair of jeans. They will go straight to the farming basket when we get home.

In the room were 6 Vander Kooi’s (including Violet in her snazzy new hat), a nurse, a physical and occupational therapist, a student (who happened to be from Minnesota, had done her undergrad at SMSU in Marshall and had a sister-in-law from our hometown), and the two surgeons.  

 

There is so much excitement and energy within a Children’s Hospital.

 I have learned to always use my Voice Memo app for things like this. It is so nice to go back and hear the conversations again.  

Dr. Yakuboff began by checking her incisions.  At the site where they removed the scar tissue within her brachial plexus and did the transfers, on the side of her neck, there is still some swelling.  Three months ago, Ava tripped walking into a physical therapy appointment and we have never been able to make it completely go away.  He wasn’t worried about it as long as it isn’t sensitive to touch.   He also said to keep massaging all the scars. 

They had Ava show the movements she has gained.   I had sent some videos last week just in case Ava wouldn’t cooperate at our appointment.  They were very impressed!!  A few minutes of excitement ensued as they speculated which muscles were doing what things, and which exact transfer was equating to which gain.  They agreed most of her movement so far comes from the incision on the back-side of her shoulder when they transferred her spinal accessory nerve to her suprascapular.  

 

Our appointment wasnt until 1:00, so we went up 49 stories to the top of Carew Tower to see the city. it was cold and scary, but very neat.

 He then checked over her left hand.  He had Ava do all different kinds of movements to see if she lost any functions from when they stole her C7.  Checking any earlier wasn’t worthwhile as nerves within a child have the ability to fill in and branch out to bring sensation and movement to an area nearby.  Things looked great!   The only thing I notice is that she always uses her thumb and never her pointer on a touchscreen.   

I asked about the outcomes and progress of other children since we had initially consulted with them.  He deferred to his co-surgeon, Dr. Schwentger.  She reminded me that Ava’s case in unique and comparisons are really “apples and oranges” when comparing a birth injury to Ava’s traumatic one.  However, she said the kids who have had C7 cross transfers and have waited the time required for nerves to grow have all gained the ability to grasp.  That is really great news!  She did remind us though that they haven’t seen enough fine motor strength to do something like color with their affected hand.   I truly do think though that a little would be a lot. 

Then, the surgeons and student left, and we visited with the therapist.  I had hoped for more specifics from her, but she just said to keep working on things. She stressed the importance of 30 minutes every day of active work of the arm.  When combining this with the scar massage, it is overwhelming.   Ava isn’t ever very excited or patient about it, and she has to really focus if we are to get much out of it.  I have to spend a little time thinking about how I can make this happen on a regular basis. 

 

We enjoyed a meal at the cafeteria together. Ava has been hanging tight to Joe the whole trip.

 
The wonderful news is they are comfortable with what has been happening and feel that, given the distance between Minnesota and Ohio, we can wait 6 months until the next visit.  We are to call if she develops pain that causes her to be awake at night or chew on her hand. 

  
We are putting in 25 hours of driving time for a 25 minute appointment.  Joe claims that travel with our family will only get easier from here.  We have had lots of good times though.   

It is getting harder to get Violet strapped into her car seat each time.  Ava has been working on a sticker book and Liv has been challenging us to hangman games (it puts a whole new spin on the game when spelling isn’t a strong suit). Vince has been reading.  Joe says my navigating is a bit sub-par.  

We are going to stop in at my aunt and uncle’s home near Purdue soon.  We are so thankful for a great check-up and happy to heading homeward.  

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Slow Motion Miracle

Slow Motion Miracle

ROADTRIP!! 

Our whole family is en route to Cincinnati!  Tomorrow at 1:00 Ava will meet with the brachial plexus team. 

The purpose of our visit is two-fold:

1.  Evaluate progress.   

2.  Plan new therapies. 

 

Kids learn so much when they travel! Our first lesson was one of hospitality. Last night we stayed at Joe’s uncle and aunt’s home where they treat guests like royalty. Nothing can top the hospitality of “Hotel Bokhoven”.

 
When we met with the surgical team the day before Ava’s nerve transfer surgery in August, they stressed the importance of follow-up.  We will travel to Cincinnati 3-4 times a year for quite a while.  As her arm reinnervates, certain muscle contractures can occur as well (would require a minor surgery).  Perhaps some pain medication may be necessary (which I really pray we can avoid).  Therapies need to be adjusted. Yet, one of the most important reasons we travel back and forth is for the next kid that walks through the doors of Cincinnati Children’s Brachial Plexus clinic. The surgeons want to know if the nerve transfers they did are successful in giving her the most sensation and function possible.   

 

Joe mentioned as we left Ames that this was on the way. Free, clean, and a great place to stretch our legs.

 
A very unique feature of Ava’s surgery was the cross C7, in which they ‘stole’ a nerve from her left good side to aim for hand function in 2 years in her right side.  Washington U didn’t offer this, Mayo had only done it twice and had no reports of results, and when we visited Cincinnati  initially they had only done about 7 and Ava was their oldest candidate.  In sum, the degree of eventual function we witness directs their path forward. 

 

Violet crawled up the stairs to get into this payloader at least 5 times. Ava was supervising.

 
I need to say this:  what we have witnessed in the last month with Ava is nothing short of a SLOW MOTION MIRACLE. As I was putting Ava’s affected arm (affectionately named Frank) into her coat sleeve, she lifted her arm 5 inches away from her hip and tried to aim for the right spot.  Tears streamed down my face as I zipped her coat. 

 

This display is of an autonomous lawn-mower. I think I will keep Vince instead.

 
When we do our repetitions of stretches at night, I can feel her help more and more.  I soon will use an E-stim machine at home like we’ve been using for a month at our physical therapy sessions.  It is a small battery-operated device that has wires running to sticky pads placed on targeted muscles. It works to intensify the signal sent to the muscle so Ava can overcome gravity more easily. 

 

A definite highlight of the last few weeks for Ava was a trip to haul cattle with her friend, Charley.

 
We covet your prayers as Ava goes through each day.  She tripped and fell walking down a sidewalk after lunch today and it just breaks my heart.  I really hope to avoid any more emergency room visits.  

I was recently communicating with a family from Miami.  Their daughter had an upcoming brachial plexus surgery at Cincinnati Children’s and the mom wanted to pick my brain for some guidance.  I was so happy to help her by telling her things I wish I had known, and so thankful that she had found my blog and reached out to me. I appreciate everyone’s input, comments and sharing because it has made an immeasurably huge difference for my family and the reach even goes beyond that — in helping other families, too. 

I will post more after our visit tomorrow. 

Our Incredible 2015

Each year I pen a Christmas letter, using a word or phrase to guide me. This year is “incredible”, because of the incredible outpouring of support we have experienced. Thanks again.

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I – Incredible. The support and love that we have experienced in 2015 was more than we ever could have imagined possible.
N – Nerves. Ava, our 4-year-old, rolled out of our John Deere Gator in April. She suffered nerve damage to her right arm. It is still very emotional for us to talk about that day that changed our lives so dramatically for the rest of 2015, as well as forever.
C – Cincinnati. The hardest decision of our lives was where to bring Ava to have them do a complex day of surgery to regain partial function of her arm. We chose Cincinnati Children’s Hospital over Washington University in St. Louis and Mayo in Rochester. We now feel secure that we made the best decision for her. While surgery in August took much longer than anticipated (9+ hours), they ultimately were able to do what they intended.
R – Rest. Now we rest in the peace that God will grant Ava whatever function and sensation that He chooses. Nerves grow very slowly so we pray to see some shoulder function sometime after February, and elbow flexion around May. We will wait for 2 years to see if nerves reach her hand. Just recently, she regained the ability to lift her hand away from her thigh a few inches, and that was the only bit of function she had before she had surgery. Also great news is that her sensation is coming back!! She can feel a pinch down to her elbow now.
E – Extra noise. What does a family do to cope after a tragedy? Get some goats. They made a pretty great summer project for the kids.
D – Denver. We snuck away for a weekend near the end of September to attend a wedding of one of Joe’s cousins. It is always so much fun to travel for an event like that!
I – Intense. Ava’s schedule is a lot more planned than most 4-year-olds. She attends preschool 5 days a week, has therapy 3 afternoons a week, and other specific things we work on while at home.
B – Basketball is Vince’s (age 9) latest passion. Liv (age 7) enjoyed tennis this summer. They both play piano. Vince is in his fifth year of not enjoying piano, but we’ve got a good feeling about year #6.
L – Little. Violet (age 1) is just the tiniest toddler ever. She seems almost too small to be walking. She loves to make us laugh, and she is a very easy-going daughter as long as she has her pacifier and a large canister of raisins.
E – Embrace. Our wish for you for 2016 is that you embrace each new morning and any changes that will come your way.  Happy New Year!