Thursday, December 07, 2006

Back to the Beginning

In an effort to make this blog somewhat more useful to parents of children with Sotos syndrome who might find it, I thought I would take you all through the process of how we came to learn D’s diagnosis.

I have spoken before about D’s birth. When D. was born, we thought he was full term. It made sense, given his birth weight of over 7 pounds, his length of 21.5 inches, and his head circumference of 37.5 cm. During his NICU stay, D. was treated as a full-term baby. But one of the things they give you in the NICU is a little booklet called “Your Special Baby.” I personally think the booklet should be titled “Your Life Sucks: Nothing Will Ever Be the Same Again,” but I’m just a freelance writer, so what do I know?

Anyway, my mom read the booklet, and then she said to me, “You know, your baby matches all the things they say about preemies.” I read the book and discovered she was right: my baby was floppy, he was jaundiced, he was covered in lanugo, and despite his weight, he had no fat on his body.

Here, look at these pictures.

This is S., at four days old. Notice how she is not in the hospital. There are no wires coming out of her body. She is alert and playing with her little hanging toy.

Now look at these two pictures of D., also at four days old.

Look at D’s arm – see how the skin just hangs there? Yeah. Also, as if you could miss it, note the copious amounts of lanugo, which led Mr. WG to call him “Monkey Baby.” And, of course, there's that whole hospital setting, complete with tubes and crap.
Right, OK, so my baby looked like a preemie in many ways, but he was treated as a full-term kid. A really sick full-term kid. The neonatologist noted that D’s head circumference was on the high side of normal. The physical therapist criticized his suck. The nurses berated him for his inability to complete a feed. I sat and cried a lot.

During our stay, they tested D. for infection (none), pumped him full of antibiotics (useless), and did an MRI of his brain (mostly normal except for the part where it wasn’t quite normal). On the day we were discharged, they ran hearing tests and assessed D’s physical abilities. We took him home with no special instructions.

It was my pediatrician who first told me to treat D. as if he had been born four weeks early. Making that adjustment made a huge difference in those first months.

When D. was four months old, we went back to the NICU clinic for followup. Our good friend Dr. Death examined D. and announced that because his toe stuck up in the air, he had some neurological damage. He also pointed out that D. had no muscle tone and needed physical therapy. The clinic referred me to the state-sponsored services. I was told that it would take several weeks to process his paperwork and start the PT. That evening, I contacted a physical therapist on my own and set up an intake appointment for the next day.

A few days later, we scheduled an appointment with a pediatric neurologist. D. started physical therapy and made almost immediate progress.

Two months later, when D. was six months old, we saw the pediatric neurologist. She spent about 45 minutes assessing D. and asking us questions about him. Then I handed D. off to the nanny in the waiting room, and Mr. WG and I sat and answered more questions. Then she told us, “Your son is fine. In fact, he is better than normal. He is very bright. He watches you for cues to know how to react to strangers, like me. When he gauges your acceptance of me, then he allows me to interact with him. This is excellent at six months.”

She discussed at length the over-diagnosis of autism and other disorders. She noted that in the future people would certainly tell us that something was wrong with our son, but that we should ignore those people. She invited us to contact her with any future concerns but stressed that we did not need any followup with her.

We reported this information to our pediatrician, and he said, “She’s the best there is. If she says he’s fine, he’s fine.” He also said, “He’s really getting big, isn’t he?”

A throwaway line. Something you say absentmindedly. Something you dismiss with a wave of your hand. Until the day you can't. But let's save something for next time, shall we?


Still just me said...

Your babies are beautiful, both of them.

ADHD Mom said...

WG, you have to know that "fine" is in the eye of the beholder. When I look at D I see a gorgeous boy who is so sweet. Alot of the stuff he does is normal 3 year old stuff. We tend to overanalyze our children when we know something is "wrong". I am always overanalyzing and making excuses for my boy. The other day I noticed myself doing it again. At some point we realize that our kids are who they are and the world is just going to have to embrace them as such. Did that make any sense?

3MGA mom said...

I still wonder if something similar happened with Cole at birth, but in the other direction. He was under 6 pounds and 18.5 inches tall, but technically only two weeks early. Was he "early", or was he instead displaying the early "short stature" that is the hallmark of many genetic illnesses (clearly, not Sotos!)? We'll never know, I guess.

Meredith said...

Aw, I want to hold both of them!

anon said...

Found you from a search on Sotos, because a friend's son was recently diagnosed with it and I want to have some of idea of what to expect, what to say, what not to say. Thanks for sharing your journey. And I agree with your first commenter - both of your babies are beautiful. I'm sure your other two babies are beautiful too.

kathy said...

omg i was cracking up over "I personally think the booklet should be titled “Your Life Sucks: Nothing Will Ever Be the Same Again,” but I’m just a freelance writer, so what do I know?"
you are too much. it's the truth though. my son just had a stroke at birth and he's 4.5 months old now. my life does truly suck right now. i don't know what will happen to him. i haven't told my coworkers what happened so whenever they ask "how's the baby?" i just smile and say "he's great!" but really i want to DIE. i feel like screaming, "he had a f-ing stroke. we have to do physical therapy every damn day! and he's just a newborn!" and then i think of that surreal moment when the PT visited us in NICU and was showing us exercises to do for our newborn because he'll have right side motor problems. i was like, is this really happening? i have never felt so hopeless and miserable as i did that very moment. i mean, a PT visiting my newborn in NICU. omg so depressing. i feel sorry for myself whenever i think of that moment.

anyways i found your blog through ellen's "lovethatmax" blog. i saw your comment about not drinking coffee so your son would get better. and i HAD to click on it because i am the SAME exact way. i have been doing all sorts of weird things because in my head, i think it'll heal my son. it makes no sense at all. i think maybe i'm really going insane.

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