Tuesday, April 13, 2010

We're fine

A lot of people have been wondering how we're doing. Was it the desperate depressing last posts that had you concerned? Don't worry, we're fine.

We've been back home about five days now and Henry is having a little transition trouble. Who knows if it's leaving the routine and the hotel room we called home, or not being with me during the day anymore, or detoxing from daily intensive therapy.

But we're doing baths every night, and thanks to the amazing sister (see above photo entitled "Snuggle") who's happy to join in, Henry's sitting in the tub, splashing around, and begging to stay in and play.

This is huge.

In other news, we've ordered a special toddler vitamin rich weight gainer and two Dr. Scholls meets IKEA chairs for the kids. We went to a somewhat overwhelming geneticist appointment yesterday at the renowned UC Davis MIND Institute which happens to be here in town. It was just a consult, but opened up the unattractive possibility of Henry having an MRI. More on that in the future, I'm sure.

Other than that, things are pretty much the same. But also totally different. I know the last few weeks have changed us all for the better. But we're still just a few more steps ahead of where we were.

And things aren't really fine. But we're fine.

Thursday, April 8, 2010

Time to go home

We're headed home tomorrow. I'm definitely ready to wake up in my own bed, have over two dozen pairs of shoes to choose from, and have our little family back together.

The other night, Henry woke up screaming so I let him sleep in my bed. He was really jumpy in his sleep, moving around all jerky like a goldfish left on the kitchen counter. I started to wonder if he always sleeps like this. Like his unconscious is either in a ball pit or a bar brawl.

I mentioned this to his therapist who immediately thought that some elements of his therapy were becoming a lot for his little brain to handle. Some kids sleep restlessly after this crazy interesting listening therapy designed to eventually retrain the brain's processing. The last couple weeks, little man wore headphones attached to a mini-backpack that played Mozart or Gregorian chants during the climbing, jumping, and swinging of occupational therapy.

So, we decided to take a couple days off the listening therapy to let his brain rest. In fact, this next month at home is intended to let all this intensive work settle in. This is a hallmark of the therapy methodology developed by Dr. Lucy J. Miller and I'll tell you what, I'm thankful.

This experience has been equally hopeful and heartbreaking. I love my little man and I love all of him. But I'm tired and it's time to go home.

Wednesday, April 7, 2010

I don't want to write this

I don't want to write this. I'm really mad. And I don't want to sound negative. But I'm pissed off. And I'll warn you that there is no hopeful wrap-up at the end of this post.

We met with an amazing feeding specialist at STAR yesterday who is world renowned for her work with kids and their eating issues. She and a team comprised of a pediatrician, an occupational therapist, and a speech therapist watched Henry and me share a meal of soy yogurt, crackers and soy cheese behind a one-way mirror. After that, she came in to watch him up close and then they weighed his tiny little body and wrote up their report.

I'm mad that the news about how my boy eats, is not good news.

The team is incredible and the way Dr. Toomey explained his difficulties to us was just short of messianic. She spent three hours telling me exactly what is going on in his little mouth and why he stuffs it full of food, melts down at meal times, and chokes.

But I'm mad that his tongue doesn't work right. That he can't chew. That he has the feeding skills of a 6-9 month old. That he's anemic. That he seems to be allergic to a bunch of things. And it makes me cry. And it's frustrating. And I hate it.

And I don't want to know that his road is even harder than I knew. And I didn't want to write this. But it's all part of it.

Sunday, April 4, 2010

Bathtime triptych

*this is me, henry, offended and skeptical at the mere mention of the thought of the possibility of a bath*

*here i am, the next day, happy to be playing near the bath. i must point out, however, that i am clothed. happily clothed.*

*this morning, i promised to relinquish my birthright as first born son if my mom would let me play in the tub.*

*i still haven't sat down in the water. don't push your luck*

respectfully yours,

Friday, April 2, 2010

Shoes. Meh.

I love shoes.

Henry does not share my passion. In fact, I have bought too many pairs of shoes for him that have gone unworn due to his refusal (imagine little man's adorable furrowed brow and shaking head).

Two pairs have thus far met with his approval; Pedi ped sandals worn to bits of leather clinging together by frayed threads and Converse sneakers with velcro and an eventual scent that warranted their destruction.

But now, drumroll...we have found a third pair. I think these cute Merrell trail runners appropriately capture the Wilderness Boy image with some hipster orange thrown in. Of course, I'm sure that's not why Henry likes them. Like a lot of things we've discovered through trial and error, they just work. Phew.

A lot of SPD kids have trouble with socks and shoes and clothing. The seams on socks and tags on shirts are particularly bothersome for some kids to the point that they can't concentrate on anything else. Going without socks is a favorite of Henry's, which I'm guessing is part of the Converse olfactory unpleasantness.

Soft® is a fabulous new line created by Jessica E. Ralli, a mom and special education professional in New York City. The designs are superb, with no tags, covered seams and as the name implies, they look miraculously soft.

The website says seamless socks coming April 2010. We'll be waiting with bated breath. And held nose.