Serial casting returns, times two

Max got the serial casts on Friday. It took about an hour, and he was calm the entire time. (Thank you, DVD player and Cars movie.) I was so worried about how he'd get around with casts on both feet. He's a little wobbly, as you might expect when you're walking around with a couple of extra pounds glommed onto each leg, but it didn't stop him. Max was as happy and intrepid as ever. 

As it turns out, the so-called "shoes" are the real trouble. It took us about eleventy billion hours to get a pair of Dave's socks on over the casts, or maybe it was ten minutes, and then once we Velcroed the "shoes" on, Max couldn't get a lot of traction and walking wasn't as easy. We may have to send him to school with open toes, perhaps Max could set a new trend in footwear.

My friend Wendy says that someone could make a killing if they invented actual shoes that fit over the casts. Heads up, Prada!

Max is still deciding what he wants me to write on the casts—it's either going to be "Max loves Cars 2" or "Max loves mac 'n cheese with ketchup" or both. Tough decisions like this take time.  

I knew the casts didn't hurt but at bedtime last night, I asked anyway. "Nooooo," said Max. And then he gestured toward one foot, then pointed to the other and said "Nooooo." I knew exactly what he was saying. "You want to have a cast just on one foot, right?" I said. "Essss," he told me. And I hugged him tight and tried not to get upset and made myself think, This is good for him. This is good for him. But it was definitely one of those times when I hated the cerebral palsy.

Max wears two long blue plastic sleeves at bath time to keep water out. Thursday night, we have to take them both off; basically, you just unravel them. Sabrina actually did the job two years ago, the last time he had one, and we might ask her to do it again—assuming she still charges reasonable rates. 

Max is supposed to wear the casts for six weeks but there's a good chance the left one may come off a couple of weeks before the right one. His grand prize: a new night cast in purple.

One step forward, two steps...in casts

There's been progress. There's been a setback. And that's just the way it goes.

Max has been fascinated with words lately. In fact, he makes us tape little notes onto the kitchen cabinets with his food requests on them because 1) He likes to read them and 2) He is obsessed with mac and cheese and 3) He is obsessed with mac and cheese. The notes say things like "Make Max mac 'n cheese pie!" and "Max likes macaroni and cheese with ketchup." Max stands there and reads them to me, and I love it because he's making real progress with reading and because he is trying so extra-hard lately to articulate words.

And then, WHAM.

Last week, I took Max to visit his physiatrist. His school physical therapist had noted that his left foot was tight, and it looked like it was turning inward again. The pediatrician had mentioned that both heel chords were tight. Me, I've noticed that lately Max has been tripping a little more than usual. He's always been a bit of a tripper, but he's been taking some real spills and miraculously hasn't hurt himself. I kept hoping his feet would right themselves, wishful thinking and I knew it.

Max had been through serial casting in the summer of 2011 for his right foot, and it worked to straighten it out. (Max's right leg and arm have the most muscle issues because the brain damage from the stroke was worse on his left side—the opposite side of your body is weakened.) Ever since that cast came off, Max has been wearing a night cast (custom-made, in purple) and Dave and I have done our best to stretch both feet.

It turns out that both feet need serial casting. I knew it had to be, but my heart sunk.

Max's walking is the miracle of my life. Anytime anything's up with it, I get unhinged. Logically, I know that he'll keep on walking, and that the serial casting will only help. But this is not a logical response. This is from-the-gut distress that takes me right back to that conference room in the NICU where the world-famous neurologist told us that Max might never walk.

Ultimately, the long-term solution will be cord- or tendon-lengthening surgery; just typing those words makes me squirm. Meanwhile, we'll start six weeks' worth of serial casting at the end of February. Every Friday, Dave or I will take the afternoon off from work and get Max to the physiatrist after school. Every week, the old cast will come off and a new, differently-angled one will go on to keep improving range of motion and straightening his feet out.

The casting itself doesn't hurt, and the staffers at the hospital are great. I'm not quite yet clear on how Max is going to deal with getting around with a cast on each foot; it's actually good for him to walk as much as possible, because it stretches his feet. But I'm figuring Max will deal in his usual cheerful, indefatigable way.

Last time he had a cast on, he was in his spaghetti phase and I had to write "Max eats spaghetti sauce!" on his cast. I'm betting this time he'll want me to inscribe "Max loves mac 'n cheese and ketchup!" or "Max loves Cars 2!"

I've got the purple Sharpie all ready. My spirits? Well, they'll get there.

Serial casting success: This time, the miracle stayed

So, as with many things about raising a kid with special needs, the serial casting turned out to be far less of an ordeal than I thought it was going to be. OK, getting Max to a hospital clinic once a week for four weeks wasn't exactly fun, but that was the worst of it. Max actually liked having the casts on and protested every time one had to come off. We removed each one ourselves the night before the next was due to go on. They were pretty easy to unravel.

The casts did not hamper Max's style in any way—just the opposite. First, they gave him good balance (much better than that in-turning right foot) so he could get around pretty quickly with them on. Ride a bike, even. Second, I could write "Max eats spaghetti sauce" on them with a purple Sharpie. I think that gave him an air of mystery. I'm Agent Purple Spaghetti Max. I like my spaghetti sauce stirred, not shaken.

The night we took off the last cast, while we were on vacation, Sabrina decided she was going to do the job.

Let me tell you, if I ever need critical care, I think I might turn to Sabrina. For all of her teasing and taunting of Max (and she is a master of it), she couldn't have been more gentle and loving when she unraveled the strips of material. And she didn't even bill him.

The next day, we headed to the hospital to have a night brace made. Max is going to wear one for the indefinite future, as he sleeps. We're also going to have to be more diligent about putting the foot braces (aka DAFOs) on him on weekends. He wears them during weekdays but on Saturday and Sunday, we used to give him a break. Not anymore, now that the cerebral palsy did a number on his right foot. We have to do everything possible to make sure that foot stays straight. Max's walking is a miracle to me every single day. He gets around so well. It would be devastating to see a miracle regress.

The amazing physical therapist who did the casting. Max laughed when she said her name: Ellen.

Amazingly, Max even let them put him on his stomach as they made the cast. He hates being on his stomach. He cried the entire previous time he had to do that. It helped to have Happy Feet on the DVD player.

They wrap strips of material around this rod, then cut down it to create a two-part cast you strap together with Velcro. The finishing touch: wrapping it in purple material. Max was beside himself with glee.

He literally did a Happy Feet dance.

Here's the finished brace. If Ralph Lauren ever decided to shoot an ad for serial casts, I suspect it might look something like this.

The serial casting did the job: His right foot is straight and staying flat on the ground when he walks. I watched it carefully all last week before Max went to camp, scared that I'd see it getting crooked again, but so far, so good. Max would wear the night brace all day if he could. He doesn't like the day ones as much, particularly because they are not purple and have a sports motif that has no air of mystery whatsoever.

If Max goes through another growth spurt that again messes up the tendons in his foot, he'll have to go through serial casting again. If that doesn't work, tendon lengthening surgery might be necessary. The words alone make me wince.

A few steps forward. Hopefully no steps back.

Max gets a serial cast, I become Weenie Designer Mommy

So, I'll admit, I was wigged out about the serial casting. Mostly because I was worried about how Max would handle it, but also because I've been generally anxious about his right foot. It's noticeably turning in. I'm full-blown scared the casting won't work and all those years of Max walking relatively fine are going to be history, after all that he's gone through to get there. Walking is Max's special needs strength, his "Screw you, NICU doctors—you were WRONG" trump card and mine, too.

These are the thoughts that kept me tossing and turning last night. I was a zombie today.

I don't know how Max has managed to keep walking around lately without falling everywhere, but that's Max for you, determined and cheerful. I hadn't talked with him much about the casting. I showed him a photo of a cast and told him he'd be getting one to make his foot straighter. "Ur-ul!" Max said, and I didn't dare let him know he wasn't getting one in purple.

I made Dave take him for the casting.

I did.

I didn't want Max to pick up on my anxiety. But also, I was being a weenie: I thought I'd get really upset if he got really upset.

Dave is of the anxiety-free variety of human beings. He doesn't worry about stuff like, say, whether Max is going to wig out because the fabric shoe that fits over the cast is blue, not purple. He doesn't obsess. He just blithely forges ahead.

So this afternoon, Dave took Max to the physical therapy center at a local children's hospital for serial casting.

And I called ten times in a row to make sure everything was going OK. No response.

Email #1 subject line: HONEY, IS MAX OK?

Email #2 subject line: HONEY, IS HE CRYING?

Email #3 subject line: WHAT IS GOING ON?!

Email #4 subject line: DAVE! EMAIL OR CALL!

Email #5 subject line: PLEASE GET IN TOUCH WITH ME BEFORE I SELF-DESTRUCT

At last (I think it was only maybe five minutes but it was a very long five minutes), Dave zapped back "He's fine" and this:

And I felt relieved to see the cast didn't look too clunky, but also kind of sad to see Max's cute little toes poking out of it.

Max was a trooper. That emotional maturity I mentioned yesterday surely helped. He cried a little, but then the therapist put on a Cars DVD and he calmed right down. Dave had found him a new purple car at Target, which also helped. Max didn't even seem to care, Dave reported when we spoke, that the cast was white. "He actually asked if he could a cast on his other foot, too," Dave said.

I ran out to the local pet store to pick up some of that pet wrapping tape Hyper Aspie told me about yesterday (THANK YOU!). Mercifully, it came in purple, and I got my son two roles of flexible bandage from a company that bills itself as "The future of pet health." The checkout counter had a dog tag display. One was labeled "Max" and I took it as a sign that 1) Max was going to be OK and 2) there may be more dogs named Max than kids named Max, something I've long suspected. Then I got myself a box of Petite Cocoa Batons from the Trader Joe's next door, because being a neurotic, anxiety-ridden mom is hard work.

Max is usually gleeful when I walk in the door, but he was particularly pleased to see me this afternoon. He kept pointing to his foot and kissing me.

"Wow, that looks cool!" I said. "Did it hurt?"

"Nooooo!" said Max, flashing me a smile.

I got to work on the cast.

First, I whipped out a purple Sharpie, and Max squealed.

"What would you like me to write on the cast?" I asked, already knowing the answer:

And he was quite pleased.

Then we went upstairs and got ready for bed, and part 2 of the cast makeover continued. I whipped out the roll of purple pet tape. Max squealed even louder than before.

"MY foot hurts!" said Sabrina.

"Um, why?" I asked.

"I have a mosquito bite!" she said, and showed me the tiny bump. So I swiped on some anti-itch stuff, then did up the cast.

Project Runway people, ya got nothing on me.

Next Tuesday night, we unravel this cast and Max gets a new one on Wednesday. Repeat for three more weeks. Pray that it works. But so far, so good. Max is sleeping peacefully. Me, I'm going to go eat some Cocoa Batons.