Thursday, February 24, 2011

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.


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.


Eating Around DC said...

Yay. Lexie's back! I missed her and appreciate the update. Hang I'm there.

May said...

Wow, when did she get so big?!!?

The eating sounds frustrating, but that good progress is being made- good luck!

dcpeg said...

Can't tell you how happy I am to hear about Lexie's progress! I've been wondering and concerned and was delighted to see and hear her. She has, indeed, come a long way!

I think I mentioned my nephew Alex a while ago. He had feeding problems, too. Thankfully, Calvert County, MD has tremendous services for residents and he had THE BEST occupational, physical and speech therapists. It was torture watching it sometimes, but he's now a nearly normal 10 year old. His sight and hearing will always be a problem, but one of his doctors thought he'd never walk and he runs now!

With Lexie's support system, she's going to overcome her problems and you may be surprised by how well she'll do. I wish you all the luck in the world!!

m said...

As a matter of fact I was wondering. And happy to hear the update, and to know that you are finding folks who are taking your concerns seriously and not shrugging it off with a "she'll grow out of it" mentality.

We have some great friends in Baltimore. If you do find yourself there and need some grown up pals, let me know and I'll make the connection. And you know, Bmore's even closer to.... and I've been hearing of a few vegan restaurants in the area that have had me wondering if a field trip was in order.

Keep us posted. Nice to see you here.

dcpeg said...

Hey Megan! Thanks for your comment on my post re: Alito. You make a very good point and I, too wonder why the others just caved.

Nikki said...

Hey..your blog is very amazing, I love to visit everyday..
Don't forget to visit my blog too
Thank you :)

dcpeg said...

How 'bout an update on your lovely Lexie? I know you're terribly busy with your family and work, but I'd love to know how she's going!

I Love Patterns 21 said...

Nice blog! She is lovely and adorable :)

Aimee said...

I really enjoyed your blog.

Virginia Llorca said...

You truly are so very fortunate to have this beautiful child, Let us know how it is going.