Until skeletal maturity

When we began this journey 3 years ago after Ava’s accident, the head surgeon at Cincinnati Children’s informed us in a very serious tone that these kids are not of the “in and out” type. He said that his patients need to be cared for by the team until skeletal maturity. I suppose for a girl would be somewhere in her teenage years. For Ava, at least another 6 years.

The prognosis from yesterday’s appointment was this: wait another year. Tough news to hear. This recommendation came after they had Ava show them her full range of motion and how much strength she had within those various movements.

Boonshoft Museum Of Discovery in Dayton, OH.

It works like this: every appointment, the whole team (like 5-6 of them plus a few students) comes into the room. It gets to be a pretty big party when our whole family is in there too! The head therapist gives Ava a sucker and has her try to hit it here, swing at it there, etc. The therapist and surgeons start using terms like “maybe a 2 for triceps, moderate abduction”, and the nurse, Melissa, is typing furiously on her keyboard. The team has tried the last couple of times to get a feel for sensation in the different areas of her hand, but Ava doesn’t cooperate with that at all.

After their observations, they recommended waiting another year. I think they know me well enough by now, to know I wasn’t going to start packing our things up and allow them to leave the room so quickly. I think they secretly refer to me in the hallway as the “Million Questions Mom”.

I wanted details about what things are likely in store, and when these things will happen. They told me they normally wait 4 years after the initial surgery with babies, and may wait five years with Ava since she was older at the time of her nerve transfers, and her nerves have to regenerate across a greater distance. At that point, they anticipate 3 procedures. They said they haven’t for sure decided yet if they prefer them done in one day or at separate times, but another year of operating and they think they will know what is best for Ava.

The first is a forearm osteotomy which involves cutting one or both of her bones in her forearm and resetting the starting point from which she pronates or supinates(like rotating her forearm upside down and right side up). She wouldn’t get more range of motion, just a new starting point — that is why I am always stretching this muscle, even in public. I don’t want her to even lose half an inch of rotation. Her supinators have kicked in big time and overpower her pronators so, right now, her right hand is always palm up. We live in a pronated, palm -down world when one considers driving, deskwork, anything. Risks with this operation are high for infection, and if done too early, the resetting can be “outgrown”.

Second is a Green transfer. I guess the neat thing about inventing a surgery is that it may be named after you! The Green transfer would hopefully provide her with wrist extension. That means the ability, if her arm is resting on a table, to draw the hand up against gravity. Currently, Ava has no need for this ability as gravity naturally extends her wrist, but if she had the osteotomy, she would really need this. Lastly, the Zancolli procedure is a tendon transfer to also help with pronation and maybe finger flexion. I have lots of reading and researching ahead of me!

To be honest, part of me wants to contact Mayo and Wash U in St. Louis (two places we initially visited but decided against in favor of Cincinnati Children’s) and visit with their hand surgeons again for better options or at least reassurance we are on the right track. I honestly think if I quit being in contact with our team in Cincinnati that I would walk into my home sometime and they would all be sitting around my dining room table, ha reminding me of the importance of following through with them, not just for Ava’s sake, but for future patients that have traumatic brachial plexus injuries! I do feel in my heart that I can be confident in our current team, but I don’t like the idea of missing anything.

Carol Ann’s Carousel in downtown Cincinnati.

The head surgeon when we began this journey was Dr. Yakuboff. He has since retired and I miss him. The team now laughs that retiring was the hardest thing he ever did. I guess when he started cutting back on his hours at Children’s that he couldn’t help but to spend those extra hours volunteering at the Shriner’s hospital with burn victims and brachial plexus kiddos. I am certain he remembers Ava but doubt that he remembers the exact conversation when informed me that this recovery would take years and years. I think I should send him a card with a photo so he can see her progress. It can be hard for me to see in the day-to-day how far she has come, but I am sure it would make him smile to see her now.


In person

“They” say a picture is worth a thousands words. I agree. I also think that meeting someone in person in way way more valuable than just communicating online. Our 3-year-old’s latest way of communicating a lot is “a google million”. So, meeting someone in person is worth a google million words.

We packed light! In true Vander Kooi fashion, we showed up just in time to grab one snack and then board the plane. No waiting around.

And, today, we get to do just that! Cincinnati Children’s brachial plexus center found sponsors and today, they offer a free day at YMCA Camp Kern for all current families. We flew direct from Minneapolis to Dayton, Ohio yesterday. Sometimes flights to Dayton are cheaper than Cincinnati and this time they were. The camp is equidistant. We spent last night in our first-ever Airbnb and it’s been great.

Liv making some morning tea. Dayton is just an hour north on Cincinnati and is home to the National Air Force, so lots of that aviator decor in our half a house that we are renting through Airbnb for a few days. So nice to have yesterday’s laundry done!

So, today, we will get to meet families from all over that have a child with an injury similar to Ava’s. The severity differs greatly among patients, but as families we can all relate. I am so excited to see how all these kids have adapted to this world as they eat, play, craft, and swim.

In the 3 years since Ava’s accident, I have spent hundreds of hours researching all things brachial plexus. I know more about these 5 nerves that give sensation and function to an arm than I could have ever imagined.

I feel very fortunate that my degree in animal science and my work on the farm have taught me so much about how to research an issue. Joe is the same. Very few people travel to 3 different hospitals specializing in this injury to compare surgeries, teams, nerve transfers and options but we did it, assuming that was the ONLY thing a parent would do. Because of this research, I have been able to offer guidance to hundreds of parents in online forums and support groups. There are so many good things that have happened since Ava’s injury and I am incredibly proud to be able to help other parents cope and make a plan. My goal is to make sure a parent or caregiver never leaves a doctor’s office visit until they have the correct questions asked. So many times, a parent doesn’t even know what they need to know, and I really try to help them build that bridge between their child and their medical team.

Here’s a snippet from today. This lady is in India and just had a orphaned 9-month-old come to her. He has lots of hand function but no shoulder movement.

After today, we will go into full-on vacation mode for a few days, and then we have Ava’s check-up on Tuesday. We fly home on Wednesday. There is never an easy time to get away from a farm, but I thought we just had to make today and this trip happen. It’s going to be a great day!

I’m expecting!

Joe and I enjoyed keeping our secret for the first trimester, but my belly has begun to grow at an exponential rate! It is time to announce. We are excited to share our news that we are expecting a baby — I am 15 weeks pregnant!!

Photography by my 10-year-old, Liv. Dress from my mother-in-law’s store, Main Street Kids.

Violet, who is now 3.5 years old, was born right in the middle of our busiest season of the year — corn silage. We are thankful this baby is not due until January 2. Our oldest, Vince, 12 years old, was born December 22, and that was a wonderful time of year to be snuggling a baby. Our two middle girls, Liv and Ava, were born in the spring.

But who am I kidding? I would take another child into our family at any time! Joe and I very much enjoy all the laughter, chaos, learning and love that comes with children and have always dreamed of having a houseful. It took us a bit to catch our breath after Ava’s accident (3 years ago) but God is always good and has provided another child for us, even though I am 37.

I have felt really wonderful! Very little nausea, but I always appreciate a nap. My first 3 pregnancies were really rough, but I made some changes (mostly lots of magnesium) and it has seemed to help a bunch. Watching our baby’s heartbeat on the ultrasound was a very joyous moment for us.

We leave in 5 days for Ava’s check-up at Cincinnati Children’s Hospital, and then have just one week for getting ready for our county fair. Our church is hosting a Vacation Bible School that week, too, so the busyness never ends! Life is so good!

Independence Day Hay

Never before have we made hay on July 4th. Hopefully never again. We have had rainstorm after rainstorm for a month, and the weather has not allowed a window of time to get our second-cutting haylage in.

We started two nights ago, went all day yesterday, and then this morning until about 30 seconds before the rain hit. Everybody gets a little smarter every year and we have learned it is much better to get the semi trucks out of the field before it hits! Knowing that time was the enemy this morning, the idea was to take the easiest and best hay — leave the rest to be baled later. We got about 80% of it done before another inch of rain came rolling in.

I don’t drive semi (or even a tractor unless it is a short time in a desperate manner), but I do love my heifers. So, when 30 of them were prancing across my lawn instead of grazing peacefully in our pasture, I decided to run around like a crazy lady in the rain putting them back in our heifer yard. Liv and Violet met me at our door with a warm towel — such sweet girls!

Our family tradition is to take a picture in a corn field on July 4th. This year we thought we should find some underwater field and the search wasn’t too tough! While our situation is certainly wet, some of the surrounding communities are much worse.

In any case, we celebrate every day that everyone is healthy and nobody gets hurt. Thanks so much to our veterans and current military for serving our country.