Sunday, May 9, 2010

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.

Wednesday, May 5, 2010

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.

Monday, May 3, 2010

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.