Spinraza update

Callie has had three of her four loading doses of Spinraza. The second and third doses went well, although Callie had to stay overnight the third time around because her vital signs weren’t stable enough to go home.

We thought she would panic when she heard she’d be staying overnight, and her panic would have made her respiratory status even worse. But she actually said she needed to stay. For us, that’s evidence that God provides peace in all our hearts when it’s needed most. She steadily got better during the night and we went home the next day.

She’ll receive her next dose at the end of this month. But before then, she and I are taking a girls’ trip to the mountains (with Nathan coming along as well). Callie and I have a couple books to read together, and we plan to do what we always try to do — enjoy whatever each day brings.

6 thoughts on “Spinraza update

  1. Debbie Payne

    Thank you for sharing the positive news! We will continue to pray. Enjoy your time in the mountains.
    Much love to all.

  2. Donna

    Thank you for the update. Glad those are behind her! Have a great time-you deserve it!! Will continue to pray!

  3. Nurse Tee

    Thanks for the update. So glad to hear that the 2nd and 3rd doses went well. Enjoy your trip ladies! And gent!

  4. Evelyn Lugo

    How sweet to hear she is doing well after all that. Have a good time together, sounds like a lot of fun. Love you.

  5. Heather Alston

    Thank you for the update. I’m glad the 2nd and 3rd doses were a little less traumatic for all of you. I think a girls trip sounds awesome! I’m praying for safe travels and fun times for you two, well…three 😉 . Give Callie our love and tell her we’re thinking of her.
    Heather, Jeff, LG, MH, JoJo, and of course her buddy Copper)

  6. Bob Drake

    Yes, so glad 3 of the 4 doses are behind her, been praying for those…..so glad to hear her response to staying over at the hospital….knows what’s best despite not really liking it much. PRAYERS

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