Tuesday, December 30, 2014
More Testing For Luke
Remember when Luke went to UCSF Genetics last February? One of the things they recommended was a spinal tap. After wrangling through insurance bureaucracy, finally getting approval, and waiting for scheduling, that procedure, along with a muscle biopsy to check for mitochondrial issues, was performed yesterday.
Paul and Luke got up early and went to the hospital. Arrival time was 6, and the procedure started around 7:30 and lasted until about 9.
This was at least his 3rd time under anesthesia, and he did fine with it.
Paul was not told when to expect results, but they'll come to us through Luke's neurologist's office. We had an appointment for January 2, but they called last week to cancel it. We'll need to get a new appointment scheduled, but it's a challenge, since he's only in the office two days a month. We're still waiting to hear the results of Luke's last MRI, which was done in October.
Blood was drawn for genetic testing last month, but they said 3-4 months for that, so I'm not expecting anything until around March.
We were given the green light to increase his seizure medication from the nurse at the neurologist's office, but we're still seeing multiple seizures per day. We haven't hit the max for his weight yet, but I'm wondering if we are headed for trying one of the other two seizure medications for children. This one doesn't seem to be doing the trick for him.
Little boy, you are a puzzle. I wish I could see the picture on the box to make some sense of it all.
Thanks for clicking for us!