Spinraza Dosing Complete!
Yesterday Ava received her fourth Spinraza injection! This completes her initial dosing phase so she will only receive maintenance injections three times a year going forward.
Ava is impressing her therapists and doctors with her increasing strength. She’s off the vent support twelve hours a day now! She is only using the bipap mask at night and doing fantastic without it during the day.
She is nursing four times a day, still working on bottle but plan to move onto cups and puréed foods next week. The persistence she’s showing tells us she’ll be hitting her goals in no time!
Oh, and for those who asked, Dempsey is still having fun with his cousins in Rutherford, enjoying chasing squirrels and all that comes with suburban life. We can’t wait for him and Ava to play together again soon!
♥️Laura and Dan
Comments (9)
Great News!!! I love her Superhero outfit!!! Kind of says it all!! Luv to you all...
Such amazingly wonderful news. Hooray for Ava, Mommy and Daddy! Can feel the energy that comes with prayers being answered.
She is a rockstar! Go Ava Go!
Her progress is amazing! I am so proud of her and so happy for you! I can't wait to here what she thinks of pureed foods!
Great news!! So happy for everyone! Keep the pics coming!!
Fantastic! I am soooooo happy for you! I will share this great news with my Rhode Island friends that are thinking and praying for you. Love and peace to you and your family!
That is awesome news. She is one tough girl. We are praying for you!! Ava is definitely a super hero!!! Love you all!!! Aunt Rose & Uncle Joe. 💕
Hi Laura and Dan! Sending lots of love and prayers to you and your precious Ava.
Great news! Can’t wait for her and Dempsey to be reunited!!