Bribe attempts and blubbery

You know how before you get married/have kids, you say those "I'll never (fill in the blank)" phrases? And then, once you're married/have kids, invariably you realize that the "I'll never" statement was a bit brash and foolish? Yes, well, one of my "I'll never" statements was, "I want my children to eat healthful food without needing to be bribed with sweets or cajoled constantly."

And then Buddy was born.

From the time he was yanked out of my abdomen, we've struggled to get Buddy to eat well and consistently. The first few months of his life, he was labeled "failure to thrive," and we spent quite a bit of time with a GI nurse at our local children's hospital trying to figure out what was going on with him.

(This was before his diagnosis of Williams syndrome, which helped to explain the low muscle tone that caused eating difficulties, the reflux, the lack of weight gain, as well as the general difficulty in getting him to eat that is common among those with WS in the early years.)

Although he's now able to feed himself, for the most part, it's still an almost daily struggle to get him to put food in his mouth--even food that he likes . . . or has liked in the past. In general, I've tried to make sure that every calorie counts for him and have focused on giving him good foods that are packed with as much nutrition as possible. But, he has a few texture issues with some foods and still has low muscle tone in his mouth and lips, making it difficult for him to bite and chew certain things. And then there's his general disinterest in food.

However, somewhere along the way, Buddy discovered cheese puffs. And lately I've been realizing that if Buddy were (for some random reason) to be found along the side of the road with a sign, that sign would read, "Will eat for cheese puffs."

And I've decided to banish my "I'll never" statement and use cheese puffs to get him to eat. And it works (mostly). "Buddy, if you want some more cheese puffs, you need to eat your fruit."

Gobble, gobble, gobble.

"I want more cheese puffs, please."

I can't say that's it been a magic cure-all, but cheese puffs have defintely helped us through a few non-eating times, and I'm grateful for them and all their non-organicness. I figure the few bites of fruit/meat/healtful foods that he eats in order to get the puffs cancels out any potential bad effects he might get from the processed puff product itself (even though the packaging assures me they're "all natural").

So, tell me, what have your "I'll never" statements been?

"Ate great today"

A common frustration among most parents of children with Williams syndrome is the child's lack of eating. I'm not talking about a few days here or there when they won't eat, or when they turn up their nose at a certain food offering -- I'm talking about not eating for weeks on end. Some don't eat because they have texture issues or low enough muscle tone that they can't chew food properly and need to be fed via g-tube; others just simply don't eat for unknown reasons.

Kieran falls into the latter category. I never know if a day will be a good eating day (meaning he ate something for breakfast, lunch, and dinner) or a bad eating day (meaning he ate mostly nothing at any meal). Although I try to cram as many calories and good nutrition into him via drinks (kefir, Carnation instant breakfast, fruit juices) as I can, my mantra has become, "Well, we'll try again tomorrow."

He doesn't often eat the snack and lunch he's served at daycare, and apparently the daycare teachers have begun to feel my pain. On Friday, they were excited that he actually ate something for lunch and wrote it into their daily report for him.

He didn't eat the cupcake they gave him for morning snack (the mother of one of the girls in his class brought them in to celebrate her birthday), but he did actually eat the chicken tenders and fries for lunch. And there was great rejoicing -- by his daycare teachers

Another day, another doctor appointment

Our nearby children's hospital has 47 separate divisions or clinics (cardiology, genetics, radiology, etc.). We have had appointments with 12 of those 47 clinics. I hope it doesn't sound like I'm complaining because I'm not (at least, I don't think I am). I'm merely stating a fact--we've made many visits to the hospital these past 18 months. Almost monthly hospital visits to a variety of specialists simply weren't on the agenda two years ago when we found out I was pregnant with Buddy.

But, as usually happens, you just "do the next thing" (to borrow a phrase from favorite author Elisabeth Elliot), God gives grace, and life goes on. Today's visit was with the radiology division to conduct a swallow study on Buddy--to make sure he was swallowing food and liquids as he should be (a common WS symptom is trouble with swallowing). The outcome was that all looked good and he was swallowing as he ought. And so, we move on to the next doctor visit, ENT (otolaryngology) . . . .

Dietary fun

At our last visit to the geneticist, he gave us a paper listing things to do and not to do for WS. Several of the items dealt with the Vitamin D situation--people with WS tend to have an overabundance of Vitamin D in their system (which can lead to the hypercalcemia), so it's suggested that when outside, they're slathered with sunscreen, and that they aren't given a multi-vitamin supplement.

Because he won't have a multi-vitamin to fall back on in the future, I'm trying to establish good eating habits with him now. We've mainly been giving him whole (cooked) foods and little-to-no sugary things (people with WS also tend to develop diabetes). One of the foods that's supposed to have a lot of vitamins and minerals (but no Vitamin D) is avocados, which made up part of his lunch today. Thankfully, my uncle in California has graciously offered to send us all the avocados we can eat once his grove is established and producing.

I could probably learn a lesson or two from the way I'm making Kieran eat--potato chips dipped in ranch dressing aren't anywhere near his menu.

Blame Drew's Cancer

I'm not sure what to write about today. And I blame my writer's block on Williams Syndrome. Yesterday, I stumbled upon the BlameDrewsCancer--a site by a guy named Drew who found out ealier this year that he has Hodgkin's Lymphoma. In attemping to beat up on the cancer before it beat up on him, he started blaming everything on his cancer, and he invited others to do the same.

Lately, I've found myself doing the same thing -- not blaming Drew's cancer (although I may join the crowd--it's a handy excuse) -- but blaming things on Buddy's Williams Syndrome. He's not sleeping well? Blame WS. He takes forever to eat? Blame WS. He cries when we turn the mixer on? Blame WS. He doesn't consistently bring fingerfoods to his mouth? Blame WS. (It couldn't possibly be the fault of his mother who didn't want him to get food everywhere when he ate and so tried to keep his hands down by his sides as much as possible for quite some time.)

Although, obviously, some things can legitmately be blamed on his syndrome, it's difficult to know how much to blame on it. I don't want to blame so much on it that we don't require or expect enough of him; yet I also don't want to expect too much that he simply isn't capable of doing and end up frustrating us all. It's a fine line to walk--a line I'm sure we'll be figuring out how to walk on for many years to come. In the meantime, I'll just blame Drew's cancer.

The Diagnosis

It wasn't supposed to be this way. Life, that is. Life wasn't supposed to be the way it is. Women weren't supposed to die of leukemia when their children were three years old. Couples weren't supposed to struggle with infertility. Grandmas weren't supposed to slowly succumb to Alzheimers. Little girls weren't supposed to be born with an extra chromosome.

And little boys weren't supposed to be born with 26 genes deleted from the long arm of their seventh chromosome. Life wasn't supposed to be this way--full of death, disease, and suffering. Life was supposed to be full of . . . well . . . life. That's the way God originally made it--a "very good" creation, He called it. And yet here we are, living in a creation groaning under the weight of the Curse placed on it by its Creator because of sin . . . my sin, your sin, the sin of all mankind. It's not pretty, the effects of this sin.

 

In January, when we found out Buddy had the supravalvular aortic stenosis (SVAS), the cardiologist mentioned that it was usually associated with Williams Syndrome, and he wanted us to have Buddy undergo genetic testing. Since then, several of his other doctors have mentioned the association between aortic stenosis and Williams Syndrome, however, I didn't really think anything of it -- they didn't make it sound like it was serious, and I never bothered to google it and find out what it was.

Last week, the genetics office called to set up an appointment. That appointment was today. Today we found out that Kieran has Williams Syndrome. In some ways, this changes everything. In some ways, it changes nothing.

The diagnosis explains so many things--his "failure to thrive," the frustrations with his eating (or lack thereof), the delayed sleeping-through-the-night, why he doesn't really look like either of us, the SVAS, the kidney reflux . . . . At this point, the doctor wasn't able to determine what level of mental disability K would have, but assumed it would be in the mild to moderate zone, rather than severe. He was encouraging that Kieran would be able to live on his own in the future, although he'll probably need help with things like keeping track of his finances. And the doctor has referred us to the state physical therapy program so that we can keep him on track (or as close as possible) developmentally.

We'll have more doctor visits with the geneticist (and all the other doctors Buddy has been seeing) in the future. We'll just take it one thing at a time and see how Buddy develops. God is good--all the time.