Getting Better — Los Hicksons

How are you guys doing? It’s a question that we obviously get a lot, and that is so complicated to answer. It’s hard to find a simple yet honest reply. I’ve started to favor, “We’re getting better.” It feels like the most authentic response - we’ve gone through a lot this year, it doesn’t feel real to say “we’re great!” but we no longer feel as deep in the trenches either.

Felicity has been home with us for 6 months. How beautiful is that? We’re so thankful. She’s still tiny, but stable and growing, and her personality is shining through more and more each day. We’re also just so thankful for the steadier rhythms of fall. Our schedules are a little more manageable than they were this summer when HUNYC had various week long camps and I was adjusting to getting back to work at the same time.

Felicity is getting physical therapy, occupational therapy, and special instruction. We’re all getting more confident as we manage her adrenal deficiency with medication too. She gets her medicine with her bottles, so it’s becoming second nature when it comes to having to prepare for the day. Her heart is monitored monthly by a cardiologist, and remains stable, she also gets daily medicine for that. The cardiologist expects she will need surgery, but we’re still looking at the broad time range of somewhere between when she’s 1-2 years old. She had a developmental pediatrician appointment where they tested her progress and noticed that she had a lot of delays that seemed to be vision related. They recommended that we look into adding Vision Therapy to her services and we were so thankful to learn that Vision Therapy is another type of therapy that she can receive through Early Intervention. This hasn’t started yet, but I am praying that once she begins to receive it, we will see her making strides in her development. In the meantime, one of her favorite things is bouncing on our laps, which she does over and over every night from like 9-9:30. Her smiles and laughs are the best too.

Lucie started Kindergarten. Her school is in our neighborhood, just one block a way and I get to drop her off each morning. She is still pretty tired by the middle of the week. I heard someone recently call it “Brain Drain”, and I’d say that’s exactly what she’s experiencing. She enjoys it, and looks forward to going to school, but she’s probably going to need another month or two before she feels comfortable with the new pace. In addition to school, she is in the school musical and stays for practice once a week. She is also taking a Broadway/Tap class. She sings allll the time, and she is really amazed when we happen to know a song that she has recently learned. At school, her class is supported by two teachers, one General Ed and one Special Ed, and in addition to that, Lucie continues to receive OT and PT there as well. The main areas that she’s working on now are focus and independence when completing her class work learning activities. Sitting to complete a task in order to learn the current lesson is important, but difficult for her right now because she’d much rather be doing other activities like playing pretend with her friends. She is VERY independent when it comes to most things, but she can quickly become disinterested with her assigned tasks. We’re all learning where to find that balance so she can foster her imagination and practical independence while also helping instill in her a love for learning.

We’re coming up on the time of year when we’re reminded of the difficult experiences we’ve been though over the past couple of years, first with Lucie and now with Felicity. Both different in many ways, but coincidentally spanning the same time of year. The annual events, holidays and traditions that coincide with the timing, usually brings up memories that we realize we still need to process through, which helps us to further heal. We know from experience that this is going to continue to be a process, but today we can say we are getting better, and that feels good.

We rounded out September by attending a wedding in Indianapolis and then spending a fun weekend in NYC with family visiting from Puerto Rico.

Looking forward to Halloween soon! The girls have a great costume collaboration!

Love,
Los Hicksons

Stopped at a history museum in Pittsburgh on our way to the wedding in Indianapolis so we could see set pieces from Mister Rogers Neighborhood.

Swapping her shoe from one hand to the other, like her hero, Mister Rogers.

Breakfast with Grandma and crazy long straws.

Her reaction at watching the bride and groom

Got to see the groom one more time before our trip back to NYC

Can’t you just hear the fun laughter in this pic?

Pink shirts, braids, overalls. Check, check, and check!

Dressed up for the Fall Festival (PS, this is not theirs coordinated costume for Halloween - can’t wait for you all to see!)

Lucie loved getting to see her old friend from preschool

and getting her face painted for the first time

Bedtime stories with Aly, Jos, and of course, Bess…

She was ready to take that pumpkin home with us

How do we get to the honey and harvest exhibit?