Hoping for “Oh, that’s nothing.”

It has been exactly a month since Ava’s accident.  We have heard numerous stories from people of truly miraculous recoveries.  Stories of people falling from silos, being crushed under a silage truck, having body parts sewn back on.  These stories nearly always begin with “Oh, that’s nothing.”  To be truthful, as we travel today to Cincinnati and tomorrow and the next day to St . Louis, I am praying that the specialists will begin to detail their treatment plans with that same line. 

When I see Ava go swimming or crawl through a tunnel, her injury doesn’t seem like a big deal.  When I think of her as a mom someday, trying to change the diaper on a baby as wiggly as Violet, it seems like a really big deal.  When I hear her giggle, it’s just fine and it’s really just an arm.  When I think of how mean kids can be to each other, it’s her entire arm and kids will judge her for it.  It looks so safe and secure all wrapped up as she plays, but it’s so limp and now often cold when I massage it throughout the day. I go back and forth. 

How many people are there in the world that can fix this?  Well, it appears like quite a few as you can google lots of brachial plexus centers. Although, it seems like most of them would be more accurately labelled ‘pain management centers’.  (We choose not to use the word ‘pain’ around Ava and ask you not to as well.).  In any case, if having nerves avulsed could be treated to restore at least some function in her shoulder and elbow, I want to know why the Traumatic Brcahial Plexus Injury group on Facebook has constant conversations about the great freeing feeling members experience when they finally get their dead arm amputated.  For real.  Or why there are over 1,000 members of the Brachial Plexus group, and the only full-length photos I see always have their shoulders immobilized. Even the teenagers. 

However, the ladies that answer the phones in Cincinnati, St. Louis, and Rochester Mayo all sound so optimistic and encouraging.  We haven’t given up hope.  We think it may be God’s will for Ava to somehow someday restore some function.  

I know that I wil look back at this time in our lives in the years to come and always see it as pivotal for our family.  Please keep praying for healing from our Master Physician.  Here’s a few photos to show some of the love that surrounds Ava. 

 

Two handrails are better than one! Delivered for free from a friend who loves old houses, and installed by Clair Van Grouw for the fee of a photo of her using it!


 

This watercolor painting was made by a complete stranger, Amy from Yankton, South Dakota. So neat!

 

Ava attended Vacation Bible School at the American Reformed Church in town last week. I would like to keep her in a bubble but I know that isn’t fair or healthy. All the kids and leaders signed a huge card for her.

   

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Making some travel plans

Making some travel plans

One week from today, we plan to be in Ohio.  Late one night a few weeks ago, while researching all things brachial plexus, I found some success stories on the Cincinnati Children’s Hospital website.  We really don’t want to leave any stones unturned….if all things were equal we would choose to be closer to home at Rochester Mayo or even Washington University in St. Louis, but we will travel to Ohio to keep our options open and take the opportunity to pick the brains of more specialists.  We’ve emailed back and forth for 2.5 weeks to set something up in St. Louis, and still don’t have a definite plan.  We are tentatively planning to visit them 2 days after Cincinnati, so next Thursday.  Our appointment at Rochester Mayo has been set since before we left the Sioux Falls Children’s Hospital.  We will be there June 2-3.  The first day, they will run a CT scan as well as a myelogram.  We will consult with them the following day.

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This photo the morning before the accident is a glimpse into our REAL life.

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We are so blessed to be a part of a large farm, knowing that our animals and land will be well cared for by the rest of the team while we are gone.  It will be a busy season, with first cutting of hay, and some new equipment kinks to work out.  People have stepped up to the plate in so many ways so far, and we make plans without fear knowing other’s dedication will continue.  Joe’s family will take care of Vince and Liv, and Violet will travel with us.

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A few Sunday mornings a year, I like to grab a few quick photos before we go to church. The morning of the accident, Ava was being such a stinker about it that I only kept two individual pics of her. This one shows her right side…without any facial scarring, able to use her shoulder and elbow, and grasp a stick in her hand. I will treasure this photo forever.

Somehow, we are going to need to choose a set of doctors to perform surgery on Ava.  Prior to 20 years ago, not a whole lot of people were working on nerve transfers and grafts.  It seems to me that there really isn’t a central training location to teach surgeons this skill, but more that it is something that they learn by trial and error.  Terrifying.  We really have no idea what we will be told as possible best outcomes, or if their plans will be even similar.  We are definitely making a list of questions that we want answered at each consultation.

Ava continues to be full of life.  She is insisting on relearning everything — demands to do things like cut the pizza and pass me one clothes hanger at a time in our laundry room.  We finally got a compression glove and will hopefully receive a neoprene splint for positioning her arm and hand soon, so that we can have a more breathable option.  I have been searching and searching to find a better brace for her.  The one we are currently using is a shoulder immobilization brace which isn’t really ideal, but it is better than nothing.  I joined some groups on Facebook regarding brachial plexus injuries and found a man that has designed a sling for himself and now offers them to people all over the world so they can stay active in sports.  Ava’s life seems pretty active (!!!) so I spoke with him and he is going to try to make one for her, although it may take a few tries as the youngest person to have one so far was 7 years old.

Last night, our 3 oldest children (Vince, Liv, and Ava) attended a Vacation Bible School in town.  It is so scary for me to leave Ava in the care of others but I know that I must.  I really don’t want to raise her thinking that she isn’t able.  Joe and I have spent a lot of time discussing how we parent moving forward.  So tough.

From researching other people’s stories, a common theme I have found is excruciating, crushing, constant pain associated with nerve injury to the brachial plexus.  Ava shows very little pain and isn’t even on Tylenol.  This mystifies me and I hope that her pain doesn’t develop as more scarring sets up.  So, please pray for continued happiness for Ava.  Also, we ask that your pray to the Lord that He would will a miraculous recovery for our dear daughter.  Our Master Physician works miracles and we just lift Ava before him.

How we are hanging in

It has been nearly 2 weeks since the accident and a week since we’ve come home.  How are we hanging in?  Well, it is a mixed bag.

Ava is running around at such a speed that I would almost classify it as reckless.  We are sprinting around here to try to make sure she isn’t dancing on the stairs or playing dress up with hats blinding her as she runs around.   Even with my attempts to keep her safe, she fell Wedneday night (she was just inches out of arm’s reach) and needed to go back to the ER for stitches under her chin.  I guess Joe and I have been given a lot of perspective lately because it really doesn’t seem like nearly the crisis it would have earlier in our lives.

People who have played with Ava ask me if she has always been left-handed.  No, she hasn’t….she is just that determined to do everything she used to enjoy before the accident. She hates showers now and used to love them. She despises any sort of talk of the accident and stretches or movement with her arm. However, she is still the same charming Ava and I cherish every moment with her regardless of her attitude.

I gained a love for gardening from my parents, so while they were here, we went to a local greenhouse, Grandpa’s Fun Farm. In this photo, Ava is gathering glass clippings to put in the bottom of the planters.

A few small notes:  on Tuesday, she had stitches removed (Doctor said her skin looked great and to wear floppy sun hats and SPF 1000 for 9 months), her eyes dilated (no damage found just a routine update), and blood drawn.  She was quite feisty with those lab techs!  We have a new shoulder-immobilizing brace for her and just had her measured for a nicer hand splint.  Three times a week, we are doing occupational therapy to develop her left-handed skills and physical therapy to maintain some joint mobility and reduce swelling.  They are both conveniently located here in Worthington.

Ava minutes before having her stitches removed. We met a lady in the waiting room of the plastic surgeon’s office. In God’s timing, she had just one arm — had lost the other in a car accident in 2008. We used the time to chat with her about the MANY things she is able to do!

We have been on our phones a lot trying to line things up for some consultations with Ava for nerve grafts and nerve transplants.  I wish I knew exactly what the plan is and that I could share it with you, but it all seems so cutting-edge that there isn’t a clear answer. From what I can tell, each situation is so unique that there is no expected response.   It appears like the chance of getting any finger dexterity back is minimal.  However, it would be huge if she were able to regain elbow extension, and it looks like that happens in some cases.  From what we’ve heard and read, it seems likely that surgery would take place at about the 3- month mark, so late July.

As for the rest of the family, life is as busy as ever.  Vince finished up his state project, and I now know more about Washington than I ever really knew I would want to.


Vince and Liv just had their piano recital this morning and then I gave a tour of our dairy to a group of people from throughout Minnesota who have Silver Streamer campers. Never a dull moment!

Liv and Ava in the bottom right corner.

Emotionally, some times are better than others.  When we are really busy, sometimes it honestly seems like nothing has changed.  I cry often when I see her battling through something that used to be simple.  Usually, Joe seems ready to handle the situation when I can’t.  I always cry when I read people’s comments and stories, or notice how many people have watched a video of Ava crawling through a tunnel.  At night after the kids go to bed, I open up cards and pour my heart to the Lord.  Those are the hardest times for sure.

Joe and I have always been blessed with a marriage that contains very little arguing or anything like that. I think that is likely just foresight on God’s part, knowing there would need to be a strong foundation so that our family could carry on. We are both trying hard to resist any sort of “if only” thinking.  That second-guessing of the Lord’s plan is not productive, and certainly doesn’t help Ava.

I am still begging you to pray for all of us.  For continued steadiness in our marriage.  For all our other children to be understanding of the situation.  Mostly though, just pray for Ava.  That she stays so determined.  That she will blow the doctors away with her healing. That she stays safe!  I can’t begin to thank each one of you enough.

No place like home

Ava’s requirements for discharge were made known to us on Thursday

1.) 50 steps walking

2.) eating and drinking

3.) pain controlled

Part of me thinks Ava’s mind began to process what this meant for her and she decided that it was time.

Friday morning, the physical therapist was in the hallway on the way to visit Ava as we were headed to the toy room with her for the first time.  He decided it would be great to evaluate Ava there. Upon entering the room, she began to play and move around with such frightening speed that Joe and I were racing to keep up with her as we also juggled Violet.

In some ways, I think all of that movement helped bring back her appetite and get her mind on something other than her pain.  We took her in a stroller for lunch at a cafeteria in the hospital and then went back to the room to rest.  At about 2:30, our main doctor walked in and announced we were free to go home.   We honestly couldn’t quite process it.

Ava was not at all fond of this doctor and all of the checks he had done with her in the past days, and her mood soured at that point. We really  questioned if she was going to be able to handle the transition. We had a few visitors arrive just after that, one of them a great family friend and the other was Ava’s music therapist, who provides us with essentially fun speech therapy on a weekly basis.

Joe was somehow able to convince Ava to quit sobbing and our music therapist began to show her skills at working in challenging situations.   So they we were, 6 of us sitting on the hospital floor singing along to a guitar and playing with egg shakers, a tambourine and a rain stick for 30 minutes.  Violet brought some levity to the situation as we laughingly scolded her for eating instruments and crawling away from our music session.

After our visitors left, Joe and I wrestled with the decision to go home.  Ava’s mood was still on a rollercoaster but it was getting increasingly harder to keep her safe at the hospital, as strange as that sounds.

We decided it was time to go.

What ensued was the most chaotic packing I have ever done.  There was even still a load of laundry to bring back to the room!  The nurse removed Ava’s IV and I signed a few papers.  It was kind of terrifying.

 

Resting at home while recovering from a major accident would seem logical but instead we have been absolutely on our toes as we rush to protect her.  She is scrambling up and down stairs and running with scissors and so on.  It is ASTOUNDING how quickly she has adapted. Joe’s Aunt Sue, who has always been a favorite playmate of Ava’s, helped us out tremendously yesterday.

 

When asked by some church friends for a way they could help, Joe responded ‘bring us some baby goats for the kids to play with’. Perfectly logical, right?

I would never wish the circumstances that we have endured in the past week on anyone. However, it is my prayer that all of you would someday experience the incredible support and love that we have felt every day since this incident.  Reading everyone’s commitment to praying for us has been humbling to say the least.  We have been the recipients of so many people acting as the hands and feet of Jesus.  It has brought tears to my eyes time and again, and been an incredible source of strength for all of us.

Vince reminded me yesterday that it is our turn to greet at the main doors of church this morning.

God’s timing. Keep praying for us, I’ll keep buying Kleenexes.