I realize this is late now! But here is the post I started:
Friday was one week post stem cells, and I thought it would be good to share some things we notice with Colleen.
I will be honest and say that there was a part of me that was hoping after a few days, we would be able to witness something amazing. 9 days after, what we are seeing is Colleen using more should when vocalizing. Before, that was something that seemed to come and go. For the past week, she’s been using sounds that I haven’t necessarily heard from her before. In the car earlier this week and when I turned on the radio, it seemed like her little way of singing. I would so love to be able to communicate with Colleen more easily.
Second, is that she seems more focused on things and takes special interest. Like having her nailed clipped, she intently watched!
She had a neurologist appointment on Wednesday this week at Boston Children’s, along with an EEG. What I love about them is that they work with us to come up with a plan that everyone agrees on and are not interested in over-medicating Colleen. In the past, other doctors have tried to control the spikes on her EEG. Boston wants Colleen to be able to function at her best while having no seizures. Still awaiting results on her EEG, so hopefully I will find out after the long holiday weekend!