In Case You Were Wondering

Hello to the handful of people who may have been wondering how little Lexie is doing.

Lexie turned 2 on January 14, and got her first haircut last month. She started daycare in September – we call it “school” – and she loves her little friends there. She is talking up a storm, bossing us around and working hard to make her wants/needs known. She talks in sentences at times and even sings songs. She likes to make up words to common tunes. Example: “Monkey, monkey, monkey, monkey, monkey, monkey, monkey, monkey,” sung to the tune of “Twinkle Twinkle.” In a similar vein, Curious George is a favorite. She also enjoys Sesame Street’s Bert and Ernie, aka “Ernie-Bert!” Below, Lexie sings “Twinkle Twinkle.”



She is on target or ahead of the game for almost everything.

Almost.

The one place she’s far, far behind is in her eating skills. She eats at the level of about a 10 or 11 month old baby. She still gets her nutrition from stage 2 toddler formula in a bottle, purees and baby yogurt. She has trouble using a sippy for any length of time (she seems to get tired), and she gags on any textures beyond purees. After about 6 months of speech therapy (for eating, not for speech) that went nowhere, I called the Kennedy Krieger Institute in Baltimore, which houses one of the top feeding disorder clinics in the country. Two months later, in early January, we drove up there for a consult.

It was eye-opening. This is the first time we've encountered a full team of specialists who knew exactly what they were seeing. They totally listened to me and I felt like part of a functioning team. They asked very pointed questions and eventually came to a cohesive diagnosis.

Lexie has hypotonia (also known as low tone – a neurological condition that impedes the coordination of muscles) in her cheeks and secondary sensory issues, which have caused her to fail to learn the regular developmental eating skills that normal kids learn. Fundamentally, her hypotonia has prevented her from learning how to chew and how to manage food in her mouth. In the short term we have a follow-up with an oral-motor specialist and a behavioral therapist at KKI, and they advised us to get Lexie a great OT in our area ASAP.

For the long term, KKI recommended Lexie for their intensive 8-week program (which has a 6-month waiting list). It would require that I take a leave of absence from my job and we would have to live in Baltimore (possibly at the hospital itself, depending on some insurance issues) for that time. As you may recall, dear readers, I spent 8.5 weeks in the hospital prior to Lexie’s birth. I have no desire to do this again unless absolutely necessary. It may well be necessary, but we’re going to work hard in the meantime to make progress at home.

Lexie has an occupational therapist now with extensive feeding experience; the therapist is working on her oral motor skills and is working to desensitize her mouth. She has been very motivated to eat by her daycare classmates. They cheer for her when she bites into a cracker or takes a sip of soup or something new. They all love cookies, so she’s started asking for them, even though she can’t chew and swallow them. She has made a lot of progress, but it’s very, very slow. She is on the waiting list for feeding group therapy – a weekly session with 11 other toddlers who have similar problems eating. And I’m looking into one more therapist, an oral motor specialist, just for good measure.

I’m also looking into a consult at the Kluge feeding clinic in Charlottesville – their intensive feeding program is only 2 weeks or so, which seems worth a shot before going to an 8-week program.

Lexie’s feeding issues also mean we can’t take her out to a restaurant. There’s nothing there she can eat, and she’s pretty likely to have a tantrum when food is around. We are looking forward to the day when we can sit her in a booster next to us and let her nosh on chicken fingers and French fries. We’ll work on the veggies later.

One thing I’d like to note: we waited probably longer than we should have to move beyond the speech therapist. She was our second speech therapist and was better than the first (who we let go after 3 aimless sessions), and did help Lexie get comfortable putting things in her mouth. But from there, the speech therapist couldn’t get any traction. She tried several things and none worked, and Lexie started freaking out as soon as she’d see the therapist. It got to the point where, for about 3 months, the therapy sessions consisted of her sitting and watching us try to feed Lexie while Lexie screamed in her high chair.

Everyone kept telling us that feeding problems take a long time to solve, and I obviously can agree with that, but I wish we had gone to KKI sooner to identify the underlying problem. Now that it’s clear, we can target Lexie’s treatment to learning how to chew, improving her behavior, and desensitizing her to textures.

At Lexie's two year well-child visit, her pediatrician expressed amazement that a 30-week preemie could be doing so well developmentally, and she thought the feeding problems were not so bad, considering some of the issues she could have had to deal with. We agree, and when it does get hard to miss work for therapy appointments or when Lexie has a really bad day for eating, we try to remember how lucky we are that this is the only issue she has.

We are very lucky.