One-year post-surgery

One-year post-surgery

It has been 365 days since Ava’s nerve transfers and grafts in Cincinnati. Here’s what she has gained:

1.  Shoulder stability. Less of a gap to her shoulder socket.  We work every day at lifting her arm up as well as out, but she cannot do it much yet on her own.  Gravity is a strong force.  

2.  Elbow bend.   She can lift it as much as perpendicular to her body quite easily (see photo below).  Any further, like up to her mouth to eat, is still a work in progress. 

3.  (Insert drum roll….) Finger Flexion!!

She can squeeze her hand shut!  She doesn’t have any sensation past the middle of her forearm, as her nerves haven’t grown all the way down.  However, finger flexion is an extrinsic hand function meaning the movement starts outside of the hand. If you make a tight fist yourself, you will feel the muscle that she is using. It isn’t much — but she can carry this ball with some assistance to get it placed.  Here she is working in Occupational Therapy. 

Initially, we were told to hope for some shoulder function at 6 months, bicep/elbow bend at 9 months and hand perhaps by 2 years. She has always been a bit ahead of those guidelines and we give God all the glory. 

We remain hopeful that if her nerves grow all the way to her fingers, it will be natural for her to use her right arm in everyday situations.   Right now, she will only use her arm if told to do so, so that is why we need to work hard and yet be patient. 

To my prayer warriors:

This is quite heavy on my heart the last few weeks. Ava has innervation to the muscles that work to supinate her arm, but not any to pronate as we had hoped would come. So, what this all means, is that her arm is always palm up, and super tight to turn it back to a normal resting and functional hand position (think of how your hands would be if you were sitting at a desk or trying to pull a glove on.) 

Palm up. We’ve just started using some kinesiotape to help pull it back to palm down.

I stretch her arm at least 6 times a day and ask you to join me in prayer for this issue. We are also getting some special straps for her daytime and nighttime braces.  If all these things don’t result in change, she will have a surgery (a super-invasive one) in a little over a year. 

When I think back to what Surgery Day was like a year ago, with it taking much longer than expected, with trying to nurse and care for baby Violet, with trying to update people on the progress so they could pray in specific ways — well, I am exhausted just thinking about it. HOW FAR WE’VE COME!!  Things get better all the time. Ava is here, she’s our girl, and we are doing everything we can for her and trusting that whatever function she gains will be enough for her to serve God day by day. 

Here’s a small farm update:

Joe harvested some corn silage for some people who were preparing to build a wind turbine and the corn was much drier than one might expect. (69% moisture). Crazy busy time  may be here sooner than expected. 

My garden is extremely productive.  Even the weeds are flourishing!

The building crew is finally setting posts for what was supposed to be a ‘summer’ building project but was delayed over and over due to rain. 

Kids are excited and not excited about school.  They love the social aspect but also enjoy summer days. Vince will be in 5th grade, Liv 3rd and Ava will be a kindergartner.  They grow up so quickly. 

Thanks again for all the support. You make my load lighter. 


So strong!!

Look what this girl can do.  She almost always likes to show off so if you see her, feel free to ask her how strong she has become. 

Working that bicep! She can hold it for 10 seconds no problem!

i would have never dreamed a year ago that she would have enough balance and strength to be trusted with her own calf.

So much love.

Vince showed a calf and a yearling. He is looking so grown-up!

Liv and I with her calf.

Violet had a good balance of fair time and play time, thanks to her great-aunt Sue.

Inside the head of a 4-H Mom

These days.  These are the days why we brave the Minnesota winters.  Let’s not even talk about school being 4 weeks away. 

It’s fair week. I know the county fair means a lot of different things to a lot of different people, but to me, it is a celebration of rural living. 

Sometimes, I forget to celebrate because I am reminding my child for the third time this week that if the heifer halter isn’t where he expects it to be, that he will need to look until he finds it. Sometimes, I forget to celebrate because the 4-H office just sent their 18th email of the month and I can’t bear to read another one. 

Vince brought this same heifer to the fair last year…she is a bit bigger this time around.

Let me tell you why a 4-H parent keeps marching on…4-H affords us the opportunity to be the kind of parent we want to be.  

A hands-on parent. 

Trust me, I promote “free play” as much as the next mom and I agree with all the research that says how important it is to a child’s development.  I also appreciate organized activities like sports or music lessons. HOWEVER, I love the ways in which 4-H brings me really close and working right beside my kids.

We’ve now got 60 days in feeding calves milk and they are ready to be weaned.

There’s so much to preparing animals for the fair that a parent must do when your oldest is just 10.  However, it is done more easily with a child’s help. 

 Vince has never given a chicken a bath before or clipped toenails, so we needed to work together.  It was quite the sight, by the way.  Put “give a chicken a bath” on your bucket list.  It requires 3 buckets and some gentle dunking. 
Over the course of the summer, my children have progressed so much in the amount of care they can give to the animals with needing less help from me day by day.  They still need my help some, but we are working side by side.  That’s what I love about 4-H.  

In 5 or 6 years, Vince will lead the way.  I will be cheering from the background as he teaches Violet how to rinse out a calf bottle and Liv how to clip her heifer.  He and Ava will be building an enclosure that can contain our goats.  That’s 4-H.  

So, these days — they are the best days.  This is what I had hoped parenting would be like. Bring on the county fair. 

4 Things in Common

Our family just had the most wonderful experience of meeting another family who has a boy named Preston with 4 things in common with Ava:

1.  Lives in Minneosta

2.  5-years-old

3.  Goats!

4.  Brachial plexus injury with avulsions C6-T1. 

Preston with his mom, Ava with me, photo bomb by Violet

Carly reached out to me as she knew someone in New Prague who knew someone who knew me, or at least followed this blog.  Anyway, small world. 

We met Monday night at our home, and the kids had so much fun playing.  Ava’s initial reaction was that Preston’s nerve damage was not similar to hers because he does not have to wear a brace.  I explained to her that, because his injury was during the birthing process 5 years ago, he didn’t need to wear a brace any more like she will for a few more years.  (It protects her wrist from breaking as that area doesn’t have nearly as much support and protection as a functioning one, also it keeps her hand from developing an inward curl).  

In any case, the kids played!   They rode bike, jumped on hay bales, dug in the sand, and just had a wonderful summer night.  Tuesday morning, we had YMCA swimming lessons and they enjoyed the hotel pool. 

My mother-in-law has a kid’s clothing store, Main Street Kids, so we popped in there for a bit and then drove out to the dairy for lunch. 

Do snowpants for sale mean that summer can’t last forever?

We walked around the farm but Preston’s two-year-old sister was pretty scared of all the sounds and most of the sights (it was nap time) so we cut it short.  

Prestons’s older brother is into metal forging so the boys hunted through an old scrap iron pile to find something heavy that would fit in their van.  

At this point, Carly (Preston’s mom) and I had a nice long talk.  It was very therapeutic for me to visit with someone who can tell me she has had the exact same feelings.  A lot of our sentiments ended with, “I’m sure you know what I mean”  or a similar phrase. For me, it was much more emotional to think back to 1 year ago than for her to go back 5 years.  Preston has endured 3 major surgeries so Carly was able to speak with a lot of “been there, done that” attitude.  Our conversations keep running through my mind this morning. 

Ava received an Ulu, which is a knife from Alaska that is very handy to use to cut your food with just one hand. To get it out of the packaging, well it was quite a sight. They both immediately sat on the floor so they could hold it in place with their feet while pulling with their left hands. Ava was just enamored with it at supper last night.

We plan to meet up again soon.  They live just 200 miles north of here.  Also, we talked about attending a camp next year for families that live with brachial plexus injuries. 

For me, I sincerely hope that this visit will be a turning point in my health.  I have had a sick summer with lots of light-headedness, nausea, and some sort of whooshing through my head. It has left me unable to care for my kids some days but a doctor’s visit and lots of blood work revealed nothing.  I am on my seventh day of feeling well!  Record for the summer, I think.  

Perhaps it was some sort of virus, maybe just stress.  I just switched most of Ava’s therapists and it was worse (much much worse) than switching hair stylists.  When people have helped you through so much, it is tough to move on but I just want what it best for Ava.  Kindergarten also looms in the future and it weighs heavy on my heart. 

In any case, I now have a new resource and, more importantly, a new friend in Carly.  Hopefully, Preston and Ava will somehow find peace and hope in knowing each other. God works in mysterious ways.