Maintenance Dose #1

On Monday, April 23rd Emma was scheduled for her first Spinraza maintenance dose… and she was ready!

“Hi everyone!”

You may remember, that she received 5 loading doses beginning last Halloween.

April 23rd was special as it was her first maintenance dose. That dose is identified by many parents as a “telltale” event that appears to accelerate developmental improvements.

So early afternoon, Erin handed Emma over to the Seattle Children’s injection team while she was sound asleep (Emma, that is). Next time Erin saw her, in the recovery room, she was crying inconsolably (Emma and her Mom, almost).

We are NOT happy!

Apparently Emma woke up soon after Erin turned her over and the team had great difficulty keeping her still. The first lumbar attempt missed the mark as Emma was kicking around so much. But they nailed it on the second attempt and administered the dose.

As usual, Erin wasn’t allowed into the recovery room until the team completed all their health checks of Emma after the injection. It was a LONG wait!

It was good news and bad news from the medical team. First, the bad news… Emma is so active now (kicking and moving) that for the next injection (in August) they’ll need to do it with her under anesthesia. Of course, the good news is that she’s now so active that they have to do that!

I know… grasping at straws.

Anyway, after a bit of quiet time with Mom and a couple show-stopping stink-eyes for the recovery nurse, Emma began to return to her normal, happy self.

Getting better…. HAPPY again!

And finally, it was time to get ready to head home.

We’re outta here!

But Emma won’t be home for long. She’ll be back at Seattle Children’s next Tuesday (May 1st) to get rid of the pesky nasal-gastric tube and have a more permanent G-tube placed directly into her tummy. She’ll likely end up in the PICU again, but the family hopes she can be home by the weekend.

Stay tuned.