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.

Beach Bunny

A couple of weeks ago, Lexie saw the ocean for the first time.



She crawled in the sand.

And she went with daddy to the Beaufort Maritime Museum.


More to come soon.

Feeding Delay

Lexie is almost 16 months old. She has never eaten a Cheerio, puff, or cracker. She won't eat pasta or rice. If anything other than milk or pureed food enters her mouth, she cries hysterically and/or throws up. Sometimes she does that even with purees.

These are common problems for babies who were tube fed, as well as babies who have or have had reflux. We decided to get some professional help, in the form of an assessment from the state's Early Intervention program.

A team of two therapists and a social worker evaluated Lexie during a two-hour appointment. They documented her strengths (she's advanced in communication skills) and they noted their concerns. The first sentence read:

Alexandra has a diagnosis of prematurity, which may affect her development for many years.

I felt both validated and saddened by that sentence. I felt validated because, when I tell people about Lexie's challenges, they often like to say something to the effect of, "yeah, but full-term babies have those problems too." I don't understand the urge to minimize the effects of prematurity. Yes, full-term babies have problems too, but how is that relevant to little Lexie? Maybe it's a misguided attempt to make me feel better about the situation.

At the same time, it was hard to read that statement. I knew it was true, but seeing it in black and white made it seem very official. I'm still hoping that this is the extent of her issues (*hope hope hope*) and that she won't have any learning challenges when she gets to school. I don't like to think about that possibility, but I know we must be vigilant. Whatever happens, we'll get her the help she needs.

The therapists estimated that Lexie is at a 7-month level in the area of "self-help skills: feeding," which qualified her for speech therapy. (It's not for speech -- speech therapists actually work with all manner of oral disorders in babies, including feeding issues.) They also diagnosed low muscle tone, but she is doing the right things on her own to build up her strength, so no therapy will be required for those particular issues.

The assessment was a month ago, and we are still on the waiting list for a therapist. Wish us luck -- I'm really looking forward to seeing Lexie eat a cracker on her own some day.

Messages From Beyond

There's a song in my mom's family that seems to play during times of loss or other momentous occasions.

It's called "When Will I See You Again" by The Three Degrees. It came out in 1974, and it isn't a song you hear often. And yet, in my family, it always seems to materialize on the radio as the soundtrack to major events. A message from above, if you will.

My mom first noticed it right after her mom died in 1978. At the time, the song was fairly current. Nothing unusual there. It was just a song that reminded her of her mom.

Eight years later, we were driving home from my grandfather's funeral (my mom's dad), and I suddenly noticed my mom was sobbing. And then I noticed the song playing on the radio.

When will I see you again?
When will we share precious moments?
Will I have to wait forever?
Will I have to suffer and cry the whole night through?

Through the years we noticed it playing at important moments: the day of my uncle's death ... on my grandma's birthday ... the first time in 15 years that my mom and her sisters had all been together, right as my mom was leaving ... there are more, but you get the idea.

My rational self knows this is probably a case of finding a pattern because we're looking for it. But the timing is always so unlikely. And I, for one, rarely listen to channels that play that kind of music.

On the day Steve left for Mississippi, his dad was on life support in the ICU but we didn't know what had happened, and we didn't know the prognosis.

When I turned on my car radio as I left work the next day, "When Will I See You Again" piped through my speakers. My heart sank.

I knew Steve's dad was gone.

Life Gets in the Way

I missed an entire month.

I have a good excuse. For the first half of the month, Steve was in intensive training that kept him working very long hours, so blogging time for me was nonexistent.

And then, Steve's dad died.

Steve's dad had been descending further and further into dementia over the past few years; he had early-onset Alzheimer's disease. He had trouble speaking properly and was very confused the vast majority of the time. He'd also been wandering, and had started walking around on the highway and refusing to come home. The situation had become unsafe. Steve's mom had checked Steve's dad into the hospital in the hopes of medicating him to calm him down to the point that he could go into a nursing home.

He'd always said he didn't want to go into a nursing home. Most people who knew him actually thought he'd like it there once he got used to it, because he was very extroverted. In a nursing home with a good dementia program, he'd have people to talk to all day long -- fellow patients who wouldn't remember that he'd already told them something or who wouldn't notice if he wasn't making any sense. But he seemed to have an idea in his head about what it would be like, and it brought him to a panic whenever he thought of it. So Steve's mom kept him at home, and every day he wandered.

For a couple of years, he had been walking miles and miles daily through the dirt roads outside his small Mississippi town. We had worried about him constantly. At his viewing the night before the funeral, several distant neighbors showed up unexpectedly. They said Steve's dad had been visiting them regularly on his long walks. One family said he used to come and sit on their porch. The first time, they called the police. But he came back again, and the neighbors realized he was just looking for company. They said they often sat with him and talked. Turns out, a lot of people were watching out for him.

His demise was lengthy, but even still, we had expected it to take years longer. He was only 65 and was in very good physical shape, no doubt thanks in part to all the walking. The end, when it came in the form of a pulmonary embolism, was sudden and unexpected. I don't think it's callous to say that many family members were relieved at how he died. He never forgot his family. He never became incapacitated. He was able to meet little Lexie and he knew he was her grandfather (referring to himself as "paw paw").

Lexie stayed in Virginia with my parents while I made a whirlwind three-day trip to Mississippi. Steve comes home tomorrow after what seems like a long time away.

RIP, paw paw.

Spring, Finally

In an attempt to try a new route from a client meeting to my office, I inadvertently ended up in downtown DC. As locals know, the traffic during the annual Cherry Blossom Festival is no picnic, and this little detour cost me an extra 35 minutes. Sitting in the traffic, I noticed small white flakes flying past my car window. My brain automatically associated them with snow -- we had so much this year, at times it almost seemed spring would never come. But of course, they weren't snowflakes.
They were cherry blossoms.

More Gratuitous Lexie Photos

If Lexie had been born on her due date, today would have been her first birthday. This makes her one year old, adjusted, and her progress is measured against that of a true one-year-old child. She's on target in most areas, but eating is still a big problem. She is stuck on purees and oatmeal. She won't put food in her mouth and throws up or cries like crazy every time we try to put something solid like a cheer.io in her mouth. She also won't use a sippy cup. We had her evaluated last week, and she has been approved for early intervention services from the state. I'm relieved that we'll be getting her the help she needs, but I do wish she didn't need it.

In the meantime, she has learned to root for the New Orleans Saints.

And she has learned to root for the Syracuse Orange.

She's also been playing her great grandma's piano.

I think she's doing pretty well, all things considered.