I’m taking a break from the GYST Series this week to update everyone on our Riley Bear! After our Heart Clinic visit yesterday, we have nothing but good news to share! (Make sure to get caught up with The Riley Report: Cochlear Implant Surgery & Activation.)
News of the Heart
According to our team at the Children’s Health Heart Clinic, Riley Bear IS actually a super hero! Her hypertrophic cardiomyopathy is being managed exceedingly well with Propranolol, with only slight increases based on her weight gain.
While a heart transplant is still on the horizon, Riley’s heart team now believes that we are YEARS away from that event! (Barring any major illnesses or other medical issues, of course.) We’ve been so worried about relocating to the DFW area when it’s time for a heart transplant, so we found a lot of relief in this prognosis.
Even better, we have MORE amazing news to share! Many of you know how saddened I was to be told that Riley could never go to a water park, public pools, or even go float the river with us one day. I was hung up on that devastating news for a long time, because I love all water-related activities. Well, our Heart Team cleared us to go exploring the water! Public pools, splash pads, water parks, the river… As long as it isn’t standing water where bacteria can build up (like a man-made lake that isn’t fed from a moving river), we can go!!! Y’all, I’m not gonna lie, I wanted to cry tears of absolute joy when I heard this. I’m so glad I brought it up with the Heart Clinic team again!
Matters of Hearing
Not only is Riley receiving raving reviews from her Heart Team, but the Cochlear Team is also insanely impressed! We were originally projected to need a full six months to turn up Riley’s devices all the way before transferring back to our local audiology team. However, Riley had other plans. As of March 28th (only a month after activation), both of Riley’s cochlear devices are at their top settings, and she is thriving! After one more appointment with the Dallas audiology team, we’ll be able to transfer care back home to Austin.
Riley loves music! I keep it going most of the day, exploring different genres and styles with her. She especially loves when I pull out the guitar, though. My heart melts at her excitement, and the way she waits patiently for her turn to “play.”
As I’ve said before, we will all continue to work on our sign language, as well as spoken language. I want Riley to feel comfortable with or without her devices on, and so far, I think we’ve accomplished that. She is always excited to have her “ears” on, but she still seems content when they aren’t. She knows she can talk to me either way.
Right now we are working on animal signs and sounds. Man, has Riley advanced quickly! She already knows the sign, name, and sounds of a dog, cat, cow, duck, chicken, horse, and bird. She can even point the animals out without prompting (when she wants to). A few more animals, and we’ll be ready to move on to signs and names for daily routine activities! (I’m building a lesson plan to help us focus our learning targets better!)
Riley is sitting around the second percentile on the average growth chart, but on the Noonan’s chart, she’s above the fiftieth! That means that while she is very small for her age group, she’s still one of the biggest in her age group with Noonan Syndrome. (Those giant genetics are working in her favor!)
We’re still working on walking. Riley has finally taken some solo steps, but we will need to get her fitted for braces. She walks on the interior of her feet. While it is correcting itself slowly, Riley could use some extra support for her feet while she’s learning, so her occupational therapist wrote us a prescription for the braces.
We definitely have an almost-two-year-old on our hands. She has been susceptible to “The Witching Hour” since about four months old, but evenings seem to be getting even worse for her lately. I’ve tried everything that I can think of to make her transition from afternoon to evening more pleasant for all of us, but even Pinterest has run out of ideas for me! I guess we’ll just have to survive until she “gets over it.”
The Other Junk
Riley loves hanging out with the dogs, playing outside (swings, slides, and dirt), bath time, books, singing and dancing, her doctor play set, and anything she can stand up and push. She hates most foods these days that aren’t snack foods, trips to the Heart Clinic, and being told “no” for any reason. Particularly if Daddy says it.
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Follow me on Instagram, Twitter or Facebook for the latest news on Riley and the Barber Bear Family! Follow me on Pinterest to find out what resources I’m using to help our Riley Bear (and keep me semi-sane). Next week, we’ll resume the GYST Series, so if you haven’t caught up, check out Part 3 here!