66 Days Old: Daily Update

Olivia seems a bit more like her usual self today. Full of ‘tude and facial expressions that tell us exactly what she’s thinking. Yesterday’s lab results came back normal (meaning she likely does not have an infection), but an x-ray did show quite a bit of atelectasis in the right lung. We increased her ventilator settings overnight, and as of this morning’s x-ray the lung looks to be fully recruited again. So, the couple of tough days we experienced Sunday and Monday were likely due to her lungs struggling… just because of their usual things, rather than being an indication of an infection. Good news she doesn’t have an infection, bad news that we can’t blame her lung challenges on something else other than her myopothy…

Other things: her Tuesday labs looked good. The liver enzymes that have been elevated for the past month or so finally began trending down as of this week, and her bilirubin level is basically normal, for the first time ever! Her total bilirubin was 1.2, with a direct bilirubin level of 0.9.

We were visited by Dr. Pegoli today. He’s the pediatric surgeon that will do Olivia’s muscle biopsy. It was nice to see him again and have an opportunity to ask him a few questions about the procedure. His answers and demeanor once again reinforced that this is a very minor procedure (relatively speaking), and that it’s a very common procedure in his world. We still don’t have it scheduled, but hopefully we’ll get a date confirmed shortly.



  1. Olivia’s looking better today! Glad to hear she didn’t have an infection! Love all those toys she gets to stimulate her! I see you moved her to the bouncy seat? Have fun Olivia Grace. Lots of love and prayers to all of you.💞🙏🏼 Aunt Susan

  2. Thank you Whitney, you must be exhausted. I love her pictures today & that ‘tude, she is adorable! You go Olivia, your wonderful, keep getting better
    I love you Grandma

  3. She is a lucky little girl to have parents and granparents, aunts and uncles, cousins, and even great grandparents, not to mention family friends, who all love her to the moon and back!

  4. You are precious Olivia. So happy you don’t have an infection and you can rest and have fun with your toys. Lots of prayers and love for you and mom and dad. Your outfits are adorable :).

  5. is that an angry bird mobile she’s looking at?! because Uncle Paul approves! Keep fighting OG, will see you in a few weeks!

  6. Olivia looks like she’s having fun today — she seems to love her toys! Hope she continues to get back to her old self!

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