Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many of us, we found out about MPS because of our child’s failure to meet milestones.
So that makes any milestone a joy to be celebrated.
Today we reached a milestone and I wanted to jump up and celebrate.
We are here in North Carolina for Case’s 8th intrathecal dose. If you’ve read a little on here, you know that Case has an intravenous port for receiving his weekly Elaprase infusions and an intrathecal port (threaded by catheter into the cerebrospinal fluid) to receive his monthly intrathecal infusions.
For most of the last 7 months, Case has received general anesthesia to receive these doses. Obviously, monthly general anesthesia is not a viable long-term option. So, the hope was to slowly lessen the anesthetic intervention needed to access this port and give the dose.
Because of the port structure and location, it is somewhat more difficult to access than a traditional port-a-cath, so doing so without any anesthetic has its complications.
But today, we took that first step toward a long-term strategy for this medication. We reached a MILESTONE. What a joy it is in MPS to reach a milestone.
We were able to give Case just a mild sedative and access the port and give him the medication while he remained awake. Although drowsy, Case was in my lap (strategically positioned and held) and awake, watching his beloved Beverly Hills Chihuahua while this life-saving medication coursed into his CSF and then into his brain.
It was a surreal moment. I could picture it going in and heading toward those brain cells that it needed to reach. He fought slightly while the medication went in. My mind raced. Did he feel it enter his spinal fluid? Did he feel anything at all? Was it painful? Did it feel bad? Good? Strange?
I wish he could tell me. Thanks to a miracle, maybe someday he can.