Totally Awesome Kid

Technically, T should be for Trisomy 18. But I pretty much covered that in other posts. So today, the letter T is devoted to Totally awesome kid. Because that’s what Zane is!

Staying Present

It’s been quite a journey. A Trisomy 18 diagnosis can be a rough one, especially when the medical community gives your child a death sentence. Granted, the mortality rate is high. It occurs in 1 in 3000 births, and most babies do not make it to birth or too far beyond. Less than 10 % live to see their first birthdays.

When we were given Zane’s Trisomy 18 diagnosis five days after he was born, we were told he would die. Soon. Like within months. This changes one’s outlook on life. Substantially. After I came to grips with it all, I realized the importance of staying present in the moment. I may not have tomorrow with him. Then that thought extended into I may not have tomorrow with anyone—may not have it myself.

Meeting Zane—knowing I may not have him in my life all that long—made me experience first-hand what staying present means. Before then, it was a nice thing on paper, but I had dreams and goals and future plans. Now I tamp some of those dominating thoughts down a bit, knowing life can throw anything at me at any time. I have learned to remain present, and I am much happier and calmer because of it. At the same time, staying present has allowed me to take more chances because, after all, I may not have tomorrow.

130+

There are over 130 anomalies associated with a Trisomy 18 diagnosis. Here are just a few, some of which Zane has and some of which he doesn’t.

Elfin ears

Clenched hand(s)

Small jaw

Low birth weight

Cardiac defects

Renal defects

Respiratory suppression

Cognitive delays

Motor delays

Seizures

Hearing loss

Non-Verbal

Having a child who is non-verbal certainly presents some challenges, especially when something is wrong. There have been times in the past when Zane is crying, and we have little to no idea why. As he’s grown older, we’ve been able to discern what some of his issues may be. Zane is an extremely happy child. If he’s crying or grimacing, then there’s something hurting him. But sometimes, we don’t know what precisely is bothering him. Is it his stomach? Is he overly tired? Does he have a headache? So we’ll take note of non-verbal cues like a grumbling stomach or poking at his ear.

So it’s not that Zane doesn’t communicate because he does. In fact, he’s pretty good at getting his feelings across. But it’s our responsibility as his family to figure out what he’s trying to tell us. If we don’t, then it’s our fault not his.

We’re not sure whether or not Zane will speak. He babbles a lot and even says dada quite often. I’ve been trying like crazy for months to get him to say mama. There have been a few occasions where I’ve heard him say ama, but it’s certainly not consistent. Only time will tell.

Miraflex Glasses

I am not knocking this company. Seriously, I am not. I understand the theory behind their eyewear. Zane had his eye examination this past week in Denver. When asked about a type of frame that Zane will keep on in conjunction with his hearing aids, the ophthalmologist recommended Miraflex. They’re flexible (as implied in the name) and have a band across the back to supposedly keep them in place. I say “supposedly” because if Zane wants his glasses off, no band is going to keep them on.

But have you seen these things? They look like the glasses Elton John wore in the 70s. Zane’s first pair of glasses was along these lines. Bottom line: they are unattractive and draw more attention to a kid who does not need negative attention. Why—why?—would a company do this to a child? Zane is a seriously cute kid (no bias here), and this would completely detract from his cuteness.

So…does anyone know of another eyeglass frame for kiddos with special needs that does not scream “pick on me!”?

Here's a photo of Zane from three years ago wearing a frame similar to the type made by Miraflex. See. The cuteness is still there, but hidden behind the mask of the glasses.

Long Drive

This past week, Zane and I traveled to and from Denver (a twice-a-year endeavor) for clinics at the children’s hospitals up there. Once again, we stayed at the awesome Ronald McDonald House. This is an amazing and compassionate place for parents to stay while their kiddos are in the hospital or going to out-patient clinics. I cannot say enough positive things about this organization and the volunteers who make it possible to feel at home away from home.

This time, Zane had his annual ophthalmology appointment. The doctor put lenses up to my eyes to show me how out-of-focus Zane’s vision is without the glasses. It’s bad. (Note to all who work with him: Must wear glasses all the time regardless of how often he pulls them off).

He also had a surgery consult. And indeed he has to have surgery this summer on his left eye. There was a GI appointment thrown in for good measure up (really, just a follow-up appointment), and he was the “lucky” recipient of yet another set of x-rays. I’m telling you, I am done with the x-rays. This kid has had way too much radiation in his five years. Unless it is an emergency—NO MORE.

So that said, Zane was a wonderful traveler. We took our time going up, but wound up getting a late start due to cleaning the room and hauling down loads of bags and medical equipment by myself all while pushing his adaptive stroller. So he and I need a break from car rides for awhile.

Kindergarten

Next year, Zane will be in kindergarten. He will be changing districts to attend a school with a center-based program. However, he will primarily be in an inclusive setting, which is simply awesome. Though he doesn’t yet speak, he absorbs and processes what is said to him. So we’re thankful he will have peer modeling to help him on his journey.

We’re very lucky the school Zane will attend has a progressive principle and Special Ed. Director who foster inclusion for kids with special needs. This is not always the case. It’s not the case in our home district, which is totally backward in my mind. But we’d rather take Zane out of his community if it means a better education and being in a setting where he is wanted and accepted. I know when I was in public high school, kids like Zane were segregated and sent off to modular buildings far away from the rest of the school community. It was extremely sad. As such, I now feel deprived: I was never given the chance to befriend someone like Zane.  

Incompatible with Life

One of the phrases commonly told to families just given a Trisomy 18 diagnosis is that the condition is incompatible with life. Not only is this one of the least helpful things to tell a parent of a newborn, but it is also inaccurate.

I am not going to wax philosophical about a lifetime being just as valid whether it is a second or one hundred years (even though that’s true) or step onto my soapbox and ask why some medical professionals think they are the end-all in knowledge (because I certainly wouldn’t do that) or how completely lacking in compassion it is to utter this phrase to a parent (because everyone is compassionate at the birth of a child, right? *cough*).

But seriously, Trisomy 18 is not incompatible with life. Sure, there are challenges, and there are children who live very short lives. But a life is a life, you know. I can think of a person of two in history who I consider incompatible with life, and I’m sure you can, too. And not one of them had or has Trisomy 18. But I would never say this to ANYONE. And the fact that there are children with T18 who live happy, loving, and even healthy lives demonstrates this all the more.

Happy

Zane is one happy and silly kid. It is rare to see him without a smile on his face.

Gastrostomy Tube

Back in 2007, when Zane was still an infant, he had a gastrostomy tube surgically placed in his belly. For a short time after birth, he did quite well with oral feedings. Then seizures hit, and his interest in eating totally waned.

G-tube feedings make life interesting. Zane is on a regimented schedule: three bolus (or short, one-hour feedings) throughout the day; one long continuous feed at night. It makes scheduling appointments or making plans a challenge. We have to coordinate life around his time to eat. Luckily, we’ve managed to be pretty innovative over the years. Instead of always using a pump to feed him (this option allows us to walk away and do other things while Zane eats), we take syringes with us and feed him through his tube in all sorts of settings:

Hikes

Car rides
School
Restaurants
Stores
Even the zoo and Disney World

We’ve learned to ignore the stares, which usually only happen outside our little community. Usually people are simply curious, and we’re okay with that.

Sometimes, the balloon of the button (which is inside Zane’s stomach) will burst. We then have to replace it promptly. At first, we were completely grossed out. Now, it is second nature to place this button with its stem into a hole in Zane’s belly.

Ft. Myers, Florida

Zane was born in Ft. Myers, Florida during our year-long road trip to visit all the national parks in the lower 48. The pregnancy was not planned, and his diagnosis was not expected.

I have written the memoir about our trip in 2006-2007 that includes the pregnancy, birth, and continuation of the road trip after having Zane. I am hoping to make revisions to it and publish it by the end of 2012.

In the meantime, if you’re interested in our story, you can visit our travel website, Our Life on the Road.

Edwards Syndrome and Eighteen

When Professor Edwards discovered Trisomy 18 in 1960, very few chromosomal disorders had been detected.  In fact, it was only in 1956 that the discovery that there were 46 chromosomes to every gene instead of 48 came to light. Because of his discovery, Trisomy 18 is also referred to as Edwards syndrome.

And when you get down to the basics of chromosomes, the “tri” in trisomy means three. So instead of the typical two copies of the 18th chromosome, people with Trisomy 18 (or Edwards syndrome) have three. So they have extra genetic material than most of us.

The Daily Beast

I posted this once before, but here is my article written about the beginning of our journey with Trisomy 18.

The Daily Beast Article



Children's Hospital

Zane and I will be heading to Children’s Hospital in the upcoming days for clinics: ophthalmology, the ptosis surgery consult we’ve been attempting for awhile now, and GI. We’ll try to stay at the Ronald McDonald House again. This time around, I’m actually looking forward to the trip. No surgeries, no slick and snowy passes (fingers crossed). Just a relatively laid-back trip. That is, as long as Zane doesn’t grind his teeth during the entire ride.

Birth Weight

When Zane was born he only weighed 3 lbs, 14 ounces at full term. In fact, he was born on his due date. This is one of my favorite pictures of him from the NICU.

Aunt Sara

Last year in April, Zane lost his Aunt Sara in a tragic car accident. She was one of those few people out in the world who truly connected with him. She would visit, so anxious to hold him. They would snuggle and cuddle together so sweetly.

We miss you so much, Sara.