Yesterday, we met with the brachial plexus team at Cincinnati for a check-up of Ava’s arm. If you are new to my blog, 2 years ago Ava became unbuckled from our side-by-side and suffered complete paralysis of her right arm. She received nerve transfers in August of 2015, and we were told that we would then wait for 2 years to allow the nerves to grow so we could see what she gained, and then discuss more surgeries.
So, we walked in ready to talk about some surgeries. After showing them what Ava can do and can’t do, we were shocked to hear them say “keep waiting”. They had initially said nerves grow a millimeter a day, an inch a month….but Dr. Schwentger said that is just something they say and it doesn’t apply to the fine and tiny stuff near the end. Even though the “inches rule” signifies we are done, the expert says we are not.
I think that is really good news! More potential. They want to see her in another 12 months but we are to call and chat and maybe meet up if something tightens or she is losing something she has gained.
I am so excited to share that very few people will immediately recognize Ava as different anymore, because we can ditch the pink or beige splints she has worn for the past 2 years!!! If I had a dollar for every nice person in the grocery store that has noticed and kindly commented on Ava’s condition, my food bill would be zero.
The change of thought:
1. The likelihood of a broken bone in her arm is less than it was. Even though her balance is still not perfect, it is much improved. Her arm bones are smaller and less strong than an average child, but they aren’t overly worried.
2. Her hand won’t become overstretched like they had originally been concerned about because…. Her pronaters never kicked in. Her supination did. So, she always holds her forearm upside-down, in a supinated position. Thus, her wrist is never dangling and never tightens in a weird way.
3. Let her just be normal. What kid would want that label and that attention?
They also left me with a lot to think about regarding Ava’s therapy schedule. Ava currently goes to to each of these once a week: physical, occupational, speech. They told me that I know my stuff; these therapy sessions are impeding regular life. Let her be a kid, activities like swimming and track are just as useful. I should just continue do my nightly routine with her. When I looked at the main surgeon to double-check within her eyes if she was being honest, she looked at our other 3 children and said, “You certainly must have other things going on as well.” That was of course hard to hear as I try to balance my time in being fair to my whole family. So lots to think about there.
In another year or two, Ava will undergo a surgery that they swear is “no big deal” to flip her forearm so it isn’t always upside down. It’s called an osteotomy. Cut the bone and realign it. We live in a palm-down society where most of the things we do (ride bike, drive cars, use a computer mouse) require that position. There are very few cases like Ava’s but they have recently figured out that it isn’t so successful to cut both of the bones that operate in your forearm or the muscles will simply pull things back to the way they were. I guess now they are just cutting one bone and aligning that way. While it seems like the wrong thing to do, they are getting better results.
Lastly, we signed a contract that places Ava in a study so that all her information can be shared, analyzed and used to improve the outcome in kids that will suffer brachial plexus injuries in the future.
I apologize if this was strange writing but wow, my brain doesn’t function as well when we aren’t in our own home, eating normal foods and in our normal routines. I think I am worse than a kid for adjusting to travel!