Loading Dose #2 & Emma makes a friend

Today was the day for Emma’s second Spinraza loading dose and Emma was really excited! (not really)

Mark and Erin’s insurance provider, Aetna, last week notified them that they had approved a full 12 months of Spinraza treatment for Emma so no more worrying about that.. for a while.

While in the waiting area, Emma met another 8 month old SMA Type 1 baby named Audrey. Audrey was at Children’s with her mother, Stephanie, to get her final (fourth) Spinraza loading dose. After today Audrey goes on maintenance and only needs a dose every three months.

Audrey with her Mom, Stephanie with Emma and Erin.
Notice the matching hair-standing-straight-up hair-dos.

Stephanie shared a lot of positive stories and showed us different toys that Audrey likes to play with. She also demonstrated a bunch of yoga moves that Audrey does to help stretch and strengthen her muscles.

Then it was time for Emma to go with Erin and Mark to the pre-op area.

Mom and Dad got Emma ready, then were kicked out as Emma was prepped for her treatment. Fortunately, Grandma and Grandpa were there to help. They all went up to the cafeteria and Erin even bought Grandpa his lunch!

This second dose for Emma was quite a bit easier on the family than the first one. The only small issue was when the nurse was giving Emma her lidocaine shot. Just as the needle went in Emma let out a huge sob and popped the needle out. The second try worked fine and Emma was ready for her intrathecally administered Spinraza dose.

You may remember that the procedure is to remove 5 ml of Emma’s cerebrospinal fluid (CSF) and then inject 5 ml of the serum directly into Emma’s CSF over 1 to 3 minutes using a spinal anesthesia needle. (Aren’t you glad you asked?)

After the treatment she got a bit of Tylenol which worked wonders last time. After a short while in the recovery room it was snuggle time with Mom.

Two hours of observation, smiling, singing and a bottle and we all headed for home.

Emma’s third loading dose is scheduled for Monday, November 27… just after the Thanksgiving Day holiday.

And BOY! Do we have a lot to be thankful for this year!