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.
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.
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.
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.
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.
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.