Things are still going well! Lily has started to laugh, and we've begun feeding her some cereal at night - which she's figuring out. We had Lily's physiatrist appointment last Monday. I'd never heard of one before this appointment, but a physiatrist is basically an advanced, more medically-geared physical therapist (with an MD).
Her physiatrist said she is doing well, on pace with everything - not preferring left over right, moving limbs with symmetry, and her hands aren't clenched all the time, all of which are good signs. As to Lily's tightness, they rank it on a scale from 1 - 4, four being the most severe tightness that barely allows for joint movement.
She said Lily's arms, hips and legs are at about a 1 or 1.5 - good signs. Her ankles we need to watch out for, though - they are at about a 2.5. Not getting worse, but not getting a ton better with the 2x/week therapy and stretching.
We talked at length about her 'lower half' - her legs, knees and feet. We've noticed that she seems to have less coordination, more erratic movements with her occasional kicks - and of course there is the tightness issue. Her toes are often curled/clenched, too - they call this "clawing" in doctorspeak. Her doc recommended increasing physical therapy to 3x/week - twice a week at home with the visiting therapist, once a week at the rehab center. Every other week will be "wet therapy", so in a pool where there's no muscular resistance. Should be good for her - we are making full use of every possible avenue of therapy. We just want her to be able to walk - we're not asking for a field and track star - just a walker. I can't wait for her first steps. Can't wait.
So, from the waist down - the tightness (hypertonasity) - we are paying close attention to it, but with the physical therapy - hopefully it goes away completely over time. Her central nervous system is still developing - and while Lily's been in our lives for about 8 months, she's only 4 months old developmentally - Sara and I often need to remind ourselves of that.
For the first time last night, Lily was kicking up a storm in her bath, she seemed to be playing - she was having a blast. It was an amazing moment - I said to Sara "this really makes me feel like she'll be able to walk" - wow. Thats something that never even crossed my head when Addie was a baby... just illustrates how different it is raising a micropreemie. You never quite know, and the little things in life - just a kick in the bath - bring an overwhelming amount of joy.
What else - Lily's almost 14 pounds now! The circumference of her head is growing on pace - also something we pay close attention to due to the BEH matter.
And ADDIE'S OUT OF DIAPERS! So awesome. Big step on that one - so proud of my big girl!
At the end of the month, we're all flying to Texas to visit my Grandmother - she's 97, and she's fighting the good fight! I stopped in to see her two weeks ago on the way back from a business trip. She told me about my great grandmother, a fullblooded Potawatomi Native American who walked and survived the trail of tears - and it hit me - that's part of where Lily gets her strength from. "We're wiiiiilllld Indians, Max - you tell your girls that." I also learned that on my grandfathers side, we're Cherokee (which I knew about) but also Choctaw, which I didn't know. I take a lot of pride in my native heritage - I sure as hell don't look like it, but I'm a card carrying Potawatomi! Anyway - the girls will be too, soon. I need to get them both updated passport photos and registered on the tribal rolls.
OK. Anyhow, you didn't check the blog to hear about our heritage - Lily is doing really well, she continues to amaze us every day - your prayers and well wishes truly have worked a miracle, by every sense of the word. Thank you again, everyone, for following Lily's story - she won the battle, and so far she's winning the war too!
