Millimeter March

It has been 48 days since Ava’s brachial plexus reconstruction of nerve transfers and nerve grafts at Cincinnati Children’s Hospital.  That’s 48 millimeters of nerve growth, or about 1 3/4 inches.  

We are marching forward, one day at a time.  

I am often asked…”Can she use her arm yet?” Or “Did it work?”.   No, she can’t use her arm yet, but we are maintaining hope that it will work soon.  If her nerves grow as expected and hoped, she will be able to use her muscles around her shoulder in February.  This would allow her to lift her arm away from it’s resting position by her side.   In May, hopefully her bicep will have motor function to allow her to bend her elbow (like when you eat).    Hand function is the big question mark and they haven’t done nearly enough of the surgeries to promise anything, and we won’t know for 2 years.  It takes a lot of millimeters!

Never has a kid regained full use of an arm. There are so many functions and only so few nerves available.  For instance, as she is wired now, she will hopefully be able to bend at the elbow up to bring something up to her mouth, but will rely on gravity to bring it back down. I really think though, that even a little is a lot with a situation like this. 

 

Ava still wears her arm in a sling for preschool and playing outside, but otherwise jt just hangs like in this photo. The flashy pink brace she wears throughout the day has a metal wrist stay, which should help prevent her from breaking her wrist in a fall. The blue and pink kinesiotape is to try to prevent her shoulder from sagging.

 A goofy thing that happened recently heightened my awareness to an even greater degree of how intricately our bodies are made. We were on a long car trip and Ava woke up screaming in pain. Through her tears, she showed me that her left pointer finger was the cause. That’s on her working hand.  I think the pain was due to some reinnervation in that spot, as nearby nerves reach out to give sensation to an area that lost it when they rerouted her C7 during surgery.  The folks in Cincinnati think it was perhaps a similar sensation that caused Ava to chew on her thumb of her right hand a few weeks ago. All I know is it is always something new and more to learn about.  Oftentimes, near the time they expect reinnervation, they will start a kid on Gabapentin.  It is a medication that helps to ease the shooting pains that can best be described as the tingling when your foot falls asleep, only a lot more extreme.  I certainly would like to avoid that, but we will just take it a day at a time.  

A day at a time, a millimeter a day, right?

Ava is sporting the snazzy sunglasses they give you after an eye check-up. She very much needed a new prescription! Ava has preschool every morning (which includes some time being pulled aside for some one-on-one occupational therapy, school readiness and speech). She also has therapy at Prairie Rehab here in town 5 hours a week and music therapy (like fun speech therapy) once a week. i certainly need to be deliberate about lots of free time given her crazy schedule otherwise.

 Harvest is in full-swing.  Joe has been busy all day and into the night, for about a month.  He is finished with corn silage and everybody has been working hard on the soybean combining that should finish today.  We hire our manure pumping and that starts today.  So, it is just corn left to combine right?  (I am trying to pretend he will be home for supper regularily soon!). 

 

Kids hanging with some great friends while the feed pile is being made behind them.

 
So many caring people ask how I am. It brings tears to my eyes to know how many friends and even strangers pray for our family all the time. I am humbled by support.  I sadly gave up my responsibilities as leader of our local MOPS group and my girls are no longer in dance class. No sports this fall.  We are just so busy as is  and I need time to focus on fun times with all my children while in this stage of most things Ava. It gives me energy to know that I have lots to do, and am needed every day. Violet has started walking and talking. Vince is out living his dream of being in the field most nights. Liv tells me endless stories of second-grade happenings.  

Life is much different than it was last fall.  And yet, at the same time, much the same. I beg you to keep praying for rapid nerve growth, so that Ava’s nerves may get to her hand before the muscles forget what to do. For safety for not just Ava, not just my farmer, but all those working long hours this fall to bring in the harvest.