It’s been an odd autumn of heavy rains, some days of sun, extremes of cold and heat, but mostly a wonderful one for Heidi!
In October, Heidi and our family went to Florida for her clinical trial evaluation. Also at this visit Nemours Children’s Hospital had arranged for the clinical trial families to meet together at Give Kids the World and SeaWorld theme parks! It was a wonderful, wonderful weekend… Heidi loved all of it, but the most exciting part of that weekend turned out to have nothing to do with the theme parks.
On Saturday morning at Give Kids the World, our group was given breakfast to start off the day as one of the organizers announced the weekend agenda. We ate in a large conference-type room where there was plenty of room for all the large strollers loaded down with medical equipment. One of the other child trial participants can use a lightweight wheelchair. He had been an unusually strong Type 1, really a borderline Type 2, before entering into the study. At the 2014 Families of SMA Conference, his parents had placed him into a vendor’s Panthera wheelchair and he had taken off. At that time Heidi couldn’t sit up at all and I didn’t even entertain the thought that she too might ever be able to move such a chair.
But here at this breakfast on the morning of October 17th, 2015, the boy’s family allowed us to put Heidi in his wheelchair. Heidi placed her tiny hands on its wheels and, as if by instinct, began to push it forward! I cried with joy, unable to believe what I was seeing. She moved herself around the room, elated, for a long time, supporting her upper body and head, increasing in her confidence and steadiness. So now we are in the process of trying to get our insurance to pay for one of these chairs and making alternative plans to rob a bank if they don’t! (That’s a joke… sort of…)
The girls had a nice Halloween and the following week we finally got Heidi’s Softub therapy pool up and running!… Thank you Shane Burcaw and LAMN foundation! Pic below!
I took Heidi to an appointment at Duke Assistive Technologies Clinic. The Speech Pathologist there introduced us to a device she feels will augment Heidi’s communication abilities, in conjunction with continued speech therapy and some basic sign language. She looks at Heidi as an individual and acknowledges her likely future need for a hybrid communication system. I was quite relieved after meeting the Speech Pathologist… none of the previous specialists identified Heidi’s needs in this same way that I see them and it was a huge relief to hear a professional validate my opinions without even having described to her what they were.
Finally, there was a nice Thanksgiving with family. Now we are looking forward to Christmas!