Continuum of miracles

Amazing news! Lily had her MRI last week, and her neurologist appointment this morning. The news we got was great! Her ventricles look good, there were no brain bleeds that went previously undetected, and her external hydrocephalus (BEH) doesn't appear to be progressing. Really such a HUGE relief - just a giant weight off of the shoulders, especially after the scare we went through with the brain ultrasound last year... we were so worried about brain issues. But apart from the BEH, which usually self resolves, there are none!

We learned some new things about BEH today at the neurologist. Damn they're smart. I previously thought BEH occurred when the brain produced too much cerebrospinal fluid, which in turn exterted external pressure on the brain. But that's not how it works - docs tend to think it's more that the cranium grows a little faster than the brain itself, so the extra cerebrospinal fluid is made to fill the space. Interesting. Thought that was good - no brain pressure. I like no brain pressure.

So, she was basically discharged by her neurologist - she doesn't have to go back for another year! We have seen tremendous progress the past month- especially with Lily's tightness, which has really improved. She is doing PT four times a week now... two at-home visits by her physical therapist, and two water therapy sessions at the Children's Rehabilitation Center down in White Plains. Occupational Therapy (OT) will probably start in a few months - OT focuses on senses and sensory development, since preemies often have sensory issues. She hasn't shown any yet, but we are focusing on early intervention wherever possible. All the science shows it works, and I can't argue with science! No downside to it. We're very lucky to have Julie, Sara's sister, as Lily's caretaker. She works with her daily, pushing her along, doing her stretches, taking her to Valhalla, working with her therapists. Really gotta recognize her efforts here - she has made a huge difference, and is a great aunt to lil hope!

In the past month, Lily has: started to reach for things, give big slobbery kisses on the cheek, laugh a lot, really observe the world around her, eat stage 2 foods, and according to Addie, sound like an elephant when she makes raspberries! Today she used her pincer grasp, which her neonatologist said was the next thing we should encourage her to work on. Addie and Lily continue to build an amazing bond - they just love being around eachother. It's the best thing in the world to watch.

Tomorrow we are off to Fort Lauderdale with the girls - gotta go pack! Just wanted to get that fantastic news up there. We're off to see family for my nephew's first communion. Staying at the beach... oh yeah baby. Oh yeah.

Thank you all for following Lily's story, for saying a prayer for her here and there, asking after her, thinking of her and importantly - for believing in HOPE!