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.
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.
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.