We can’t believe Ellie came into our world two years ago! In some ways it’s been so fast. In other ways it’s like she’s always been part of us. So first off, HAPPY BIRTHDAY, ELLIE!

It’s been a while since our last post, so let me catch you up on what Ellie has been up to!

Weighing in at over 17lbs, growth is gradual but looking very good.

2023 has been a great year for Ellie.  Her baby sister has brought her a lot of joy. They roll around on the floor together and babble back and fourth like two peas in a pod. Seems they egg each other on in all sorts of development. 🥰

Ellie is getting three different therapies right now, and showing slow but steady growth in all of them. Her core strength is improving leaps and bounds. She’s doing a lot more unprompted self-correction during Physical and Occupational therapies. This holds promise for independent sitting in the future.  She’s been experimenting with more rolling, turning, and even “worm” crawling! Ellie’s really on the move these days. That’s something we never dared to hope for. She even managed to disconnect her feeding tube a couple times with her antics. Go Ellie, go!

We started speech therapy services this spring. Our first goals have to do with correlating cause and effect. Her therapist is working on the “more” and “all done” commands; getting Ellie to press the corresponding button to communicate what she wants. The idea here is that this skill will make it possible for  Ellie to use more complex communication via assistive tech one day.

On the respiratory front, we haven’t had a single hospitalization since July of 2022. We’ve barely struggled with colds so far this year.

There have been so many sweet moments with Ellie.  She laughs so hard she sometimes snorts when we tickle her. When Ellie’s happy, it’s like she smiles with her whole body.  When she’s displeased, she fusses the softest little fussy cry. It may sound funny, but hearing her fuss about something feels pretty great because it’s a strong sign of self-awareness and communication.

Thanks for all your love and support over the past two years. Please continue to pray for us as we navigate life with our extraordinary girl.