Avery's Journey: Independence Day
One year after leaving Cook Children's, an update on Avery
It seems fitting that on the one year anniversary of “Avery Independence Day,” we provide an update on how she’s doing.
We’ll start with her lungs. Our pulmonologist has us taking her off oxygen while we’re at home and just seeing how long she can maintain her oxygen saturation levels. Our record so far is eight hours without oxygen, which is very exciting for us! When we first came home, she could barely go five minutes. We see Avery’s pulmonologist tomorrow and I’m hoping he’s pleased with her progress. One hour at a time is our mantra! It would be great to be off by her second birthday. But by now, I should know better than to make statements like that.
Onto her heart. As we wean off the oxygen, we’ll have to watch her pulmonary hypertension and make sure it doesn’t put any added stress on her heart. The hope is that as her lungs get better so will her heart and we can wean her off her medication.
Next up is her tummy. I’m happy to report that her reflux is much better and we’re down to her throwing up just 1-2 times a week (HUGE improvement!). And she’s finally starting to gain some weight. But, between having a tube down her throat for her first three months of life and severe reflux, she isn’t the biggest fan of eating.
That leads us to the three T's – physical therapy, occupational therapy and speech therapy - which Avery receives weekly. In speech therapy, we are working on her speech and her eating. I’m happy to report that she’s making big improvements in both. She’s babbling lots and we’re down to using her G- button once a day (down from six)!
For OT, we’re working on things like stacking boxes, putting things in containers and clapping. This is one of those areas where it’s tough for us to tell the difference between what Avery can and can’t do and what she WON’T do. Man, she has such a strong personality already!
We’ve probably made the biggest improvement with her gross motor skills (PT). She’s officially walking! But, she turns her left leg and foot out a little too much because of some weakness in her hip and quads so we’re in the process of getting her fitted for orthotics ... Nothing is ever easy.
Finally, her “emotional” development …Gone are the days in the NICU of five people in a room trying to coax just the tiniest smile out of her. Fast forward a year and we’ve got this fiery little 19 month old who walks around the room like she owns the place, blowing raspberries, “talking” and chasing after our kitties.
Avery Leigh Wooley, we are SO proud to be your parents and can’t wait to see what the next year has in store for you!
About the author
Kelly Wooley is a Marketing specialist at Cook Children’s. She is writing a series of blogs chronicling the birth of her daughter Avery and their time spent in the Neonatal Intensive Care Unit.