He walks again

Sam would stand, wobbly, in full concentration, just like he did when he was 13 months old. Then he would try to go, but his little right leg would buckle, still not used to movement after spending nearly four weeks in his cast.

"I'm OK!" he would say good-naturedly, and climb right back up again. He knew not to try again right then, but a few hours later, or maybe the next day, he'd go for it. I am constantly impressed with his good humor, his coping abilities and just his sheer determination.

The doctors said it would be three or four weeks before he'd start walking around, and then he'd probably drag the right leg around with him.

Last night as I was getting Iliana ready for bed, I heard Jim say, "Rachel?!" in that tone of voice that means I need to get in there right away. But I happened to be getting a rare and precious Iliana bear hug, so I was going to need more than that. "Come here!"

Then I heard, "Mommy! I can walk again!"

Iliana and I both jumped up and ran out of her room just in time to see Sam, looking awestruck himself, hobbling toward us. "I can walk again!"

Iliana and I both clapped and cheered, and she even jumped up and down and said, "Good job, buddy!"

It sounds made up, but I swear it, this is what happened. I'm so moved by her grace and support of him. I love her so much.

The look on Sam's face was almost just like the first time he went for it, and walked to me almost two years ago. I remember the Bob Dylan onesie he was wearing and his expression perfectly. I actually managed to get a picture of that joy and pride, mixed with a little bit of wild fear at this newfound skill, and the liberation and separation that would come with it.

I guess that was the only difference. There was no trace of fear this time, just pure joy and pride, and still the amazement that it was actually happening. It's been since January 14 since he last walked, and to a not-yet 3-year-old, that must seem a long time.

The doctors had said it would take three to four weeks until he walked. Last night it was one week and four days after the cast had come off. I am so proud.

He hobbled all over the house, saying, "I'm doing it! I'm walking!" When I told him it was time to read a book before bed, he said, "I don't want a book! I want to walk!"

He is not dragging his right leg, it's just a little wobbly, and he's getting used to the length discrepancy.

It is even more striking how much longer his right leg is than his left leg now that he's walking, when it used to be the other way around. He is having to learn to compensate the other way, so I'm glad the surgeries will be close together so he won't be thrown off again when the legs match in length.

Already I had been struck by how much he has been preferring his right leg since the surgery, when he used to prefer the left, I'm assuming because the angle was less severe. So even with the pain of surgery, and the lack of mobility caused by the body cast, he still prefers his right leg now because intuitively he knows already it works better than his left. That is so telling to me.

It makes me feel so confident that surgery to correct the coxa vara was the right thing to do. I can't wait until he feels both legs moving the way so many of us take for granted.

I can't wait to see him running.

They say he might not necessarily be an athlete, and I don't care one way or the other, but I do know enough about my son to know if he wants to be an athlete, he will be one.

In fact, we've been watching Olympic snowboarding and both kids want Jim to teach them next winter. They're in awe of the fact that he once did a 540, and regularly did 360s. He says it might not be so easy now that a decade has past, but I think he'll surprise himself. I hope we can make this happen next winter.

I'm so grateful to have the fortune that this surgery is even an option.

I'm so grateful to have such amazing and graceful and wise-beyond-their-years children, and so grateful to have such an incredible husband.

I'm grateful to have such amazing friends and family who have been so supportive through all of this, gone to immeasurable extremes to give all of us a little more comfort.

I know this all is so trite, but it is what I feel. I feel so blessed that I don't even know how to process it. I don't even think I deserve to be this lucky, but I'm so thankful that I am.

No more cast!

As Fancy Nancy says, I am ecstatic.

Sam's cast came off two days early on Monday, February 8. The reasons aren’t exactly great; finally he exploded so far up the back of the cast I knew I couldn’t have gotten all of it. I called first thing Monday morning and was told to bring him right in. As soon as the home health aide and the visiting nurse were on their way out, I was calling Sam’s physical therapist to tell her we couldn’t do PT that day.

Jim and I ended up bringing Maya with us since we had not expected to go Monday to get his spica cast removed. Chris, Jim's mom, was going to come and help us out that Wednesday so Maya wouldn’t have to get dragged on the trip, but we had no choice.

When we saw Sam's pediatric orthopedist, Dr.Albright, he asked when he was set to see Sam. Wednesday, we told him, and suddenly I worried he would just have us wait until then to take the cast off and X-ray Sam, but he sent us right down to get that cast taken off, only three and a half weeks after Sam had surgery to correct coxa vara on his right hip.

(The left hip will be done April 8.)

We stumbled upon the oddly placed and obscure cast room, and everyone seemed confused. Apparently we’d been directed right there instead of to registration. But no matter. Two guys in scrubs came in wielding huge tools. Sam was laying on his back, and getting nervous.

“Iyana?” he cried out at one point, wanting to see his sister, and she came over to him and kissed his knee, and then his arm so he could feel it.

One man held what looked like an old-fashioned vacuum cleaner while the other took what looked like a circular saw and began cutting. It was loud.

Maya hid behind a curtain, peeking out occasionally.

“Please be careful of hurting my brother!” she called out.

I tried not to laugh or cry at that second, but I had to keep petting Sam and telling him it was going to be OK. He was really still and really good for about the first 10 minutes, but when the tech started using sort of reverse pliers to pry the thing open, it started to ache. I could tell he was doing his best not to hurt the cut, but it was impossible.

“Get many of these?” I asked him.

“This is my first one, can you tell?” he asked back. I’d been kidding. He hadn’t necessarily put me at ease. But I'm sort of kidding again, I knew he was fine to remove the cast, I just know it's pretty rare to come across a kid in a body cast.

Finally, he got one large chunk of leg off.

Sam immediately started screaming. Not crying. Full-on screaming -- high pitched, pig-in-a-slaughter-house screaming. As soon as the air hit his skin I saw a rash instantly emerge. Under the tiny red bumps were large peeling scales.

Maya’s eyes were wide and her brows were furrowing and she cried, “Ooh!”

I motioned to Jim to hug her; at this point Sam was clasping both my arms and I was hunched over him in a sort of awkward hug.

The final 10 minutes or so of getting this thing off, I stayed like this, and Sam cried, and Maya almost cried but didn’t. She just looked so concerned, and about 20 years older than she is.

Finally he cracked the rest of the thing off, while Sam screamed. I guess the air hitting that skin really hurt, and the incision had to hurt too.

Finally I was able to lift him off the table, and he seemed so small and frail, like a little snail out of its shell. I had no idea how to hold him so I didn’t put pressure on his incision, but finally worked out a system. He nestled right into me, and I felt the warmth of his whole body against mine, and just drank it in. I had so missed his core next to mine. And I get my Maya snuggles, but she is less likely to stay still these days, and she is getting very big.... and trying to comfort a child post-surgery is much more difficult with this barrier.

We went back up to X-ray, and I just held Sam, and we literally left a trail of white flakey skin that was falling off.

People in the waiting room just looked at him, horrified and wondering what happened to him, and I was thankful to sit next to a little kid, around 10, who just looked right at him, then up to me and asked matter-of-factly, “What happened to him?”

As we chatted, Sam was called for X-rays, and then back into Dr. Albright’s office. He peeled the bandage off the five- or six-inch incision while Sam cried, and then had me help pick off the smaller tape underneath. Hard for him to do with the gloves on, so I used my nail, and a suture caught on one of them, and he screamed.

About an inch of the thing was almost open, filleted. It looked raw, but not red, and Dr. Albright was happy with his progress.

He is making strides, but a week later is not walking. The doctor said it would be three to four weeks, but I’m not so sure. He has said he can’t walk, but we keep telling him he will. He is so happy being out of that thing, and he crawls. Jm asked him a couple days ago if he was going to try and walk, and he said, “Not yet.”

He’s pulling up on chairs and tables. He’s cruising. He has gotten on his riding fire engine and can power it with both legs. He has stood unassisted. Today he is cruising round and round his train table for the very first time.

In a way it’s like watching him learn to walk again. It’s like getting to meet this milestone again, and I guess it will again in May or June. You’d think I wouldn’t be as proud and giddy and excited this time around, but I am. Maya has been really encouraging mostly, and very rarely goes and just takes something from him.

His incision looks much better too, and now Jim has told him he’ll have a cool scar. Jim calls him an X Man. Sam likes that.

We’re trying to catch up on everything that has been neglected, but of course we haven’t, and we took the past three-day weekend to just be ... enjoy each other, relax and revel in the fact that it was just the four of us. After an influx of visitors -- thank God, I don't know what I'd have done without them -- it's nice to just be together. I’ll try to keep the blogs coming to update more frequently.

I can’t express my relief at getting this thing off after just three and a half weeks. I can't even fathom having it on the original prediction of six.

I tried to chronicle a day while he was in the cast, and I’m going to include it here. Of course, I couldn’t finish it. And of course, I left a bunch of stuff out, but I want to paste it here so everyone will understand why they heard so little from me while Sam was in his cast, and just in general.

Some Thursday in early February, I don’t know which one...

8:15 a.m. Jim gets me up. This is wonderful because he’s been up since 5:30 a.m. with Sam, who can no longer sleep. He has (fortunately for me, not so much for him) just spent the last 20 minutes drying Sam’s cast after he had, um, sort of exploded up the back of the cast. This isn’t pretty, but we are obsessive about cleaning it and drying it so he won’t experience “skin break-down.”

8:30 a.m. I have my coffee in hand, and am racing around to get dressed and look as if I have washed my hair in the last three days, which I haven’t. Luckily because my mother-in-law Chris is here, Maya is actually dressed, fed and ready to go. It’s a miracle.

8:45 a.m. I check my email, realizing I have to fire one work-related one off before I’m gone all day.

8:50 a.m. I hoist Sam up and onto the couch so I can change his shirt, wash his face and put some ladies’ small sweat shorts on him. The extra smalls had worked well, but I had bought smalls so I could wear them when he’s done. They are way too big.

8:55 a.m. We should have already left, but I am still struggling to hold Sam with one arm while jamming his arm into his coat pocket. I will need to weigh him tonight just so I actually know how much I’m lifting. Chris is scrambling to make sure Maya has all her winter gear to take to preschool.

8:57 a.m. I run back into the house to get Maya’s bag of winter gear.

9:12 a.m. We park in handicapped parking at Maya’s preschool and I haul Sam’s wheelchair out of the back. I want him to go in today so he can see the kids.

9:20 a.m. Chris and I wheel Sam back to the car and I spend about 20 minutes trying to arrange his wheelchair in the back so it won’t slam against the back window or into his head. Frustrated, I give up and start to drive to Trader Joe’s.

9:42 a.m. I pull over at Blockbuster to hoist the wheelchair back out and try again, as it is slamming against the back window.

10:15 a.m. We arrive at Trader Joe’s and I hoist the chair back out, set it up, and then hoist Sam out of the car and try to arrange him in the chair.

10:45 a.m. Hoist Sam back into the car, collapse the chair and hoist it back into the car before spending another 15 minutes arranging it just so in the back of my RAV, and pile the groceries around it.

11:15 a.m. Pull into Target parking lot so I can run in for extra-small shorts while Chris waits in the car with Sam, but he says he wants to go in. I acquiesce and move the car to handicapped parking and start the hoisting process all over again.

11:45 a.m. I spend too much money at Target on toys and DVDs, which is dumb because I still have boxes of unopened toys in my bedroom. I try to force the chair in on top of the groceries, and have to remove the chair and the groceries and start all over again.

12:03 p.m. I pull into a parking lot near Target to take everything out and start over again. I think I have a system now.

12:15 p.m. I try to feed Sam lunch, but he’s so tired and cranky he does not eat. I have completely overdone it with him today. I change his diaper and blow dry his cast with a cool hair dryer, and put him to bed.

1:30 p.m. I get an email saying my 2 p.m. phone interview with the CEO of an engine manufacturer is cancelled, so I send an email to another source while Sam is asleep, the CEO of a boatbuilder, who calls me back around 2 p.m.

2:02 p.m. Sam wakes up and is terribly upset. He wants cheesy popcorn but only wants me to get it for him. I cradle the phone on my shoulder, trying to absorb the statistics on boat exports for a story I’m writing, and rush to get him his popcorn.

2:15 p.m. Repeat above.

2:25 p.m. Repeat above.

2:35 p.m. Chris comes and whispers would I like her to pick Maya up from school. At this point I have given Sam the whole bag of popcorn, but am still on my interview. I whisper to her that I will go just as soon as I’m done with my interview. I am typing the CEO’s comments the whole time.

2:45 p.m. Continue interviewing my source, even though I know I am supposed have left to pick Maya up from school.

2:50 p.m. Hang up the phone after thanking the CEO for his time, race out the door without a coat to get Maya, and dial my editor while driving.

3:07 p.m. Hug Maya.

3:20 p.m. Arrive home with Maya, and Chris informs me that Sam has pooped. Since Jim and I are the only ones who can lift him, I hoist him out of his spica chair and take him back to change his diaper.

3:22 p.m. I cannot find the maxi pads that I use to line his size 1 newborn diapers that we tuck inside his spica cast. After much scrambling, I find one and begin the blowdrying process. Sam is not happy about this. I tuck in the small diaper and maxi, and locate a size 6 diaper to wrap around the whole thing.

3:45 p.m. I help Maya do the Hello Kitty puzzle I got her while Sam puts together his new Cars puzzle.

4 p.m. T.V. I love T.V.

5 p.m. Try to decide what we’ll have for dinner. I decide to make a broccoli casserole and wild rice to go with the delicious chicken Chris made and brought.

5:15 p.m. Bring drinks to the kids, and peel them some bananas.

6 p.m. Scramble to get the casserole made after prepping the rice. Then it occurs to me that the kids won’t eat the chicken with tomatoes and mushrooms, so I poke around the freezer for an easy protein.

6:15 p.m. Assemble the casserole.

6:45 p.m. Realize I should have already started the rice, and the breaded haddock for the kids takes 30 minutes. There’s no way this dinner is getting ready before 7:30. As I set to begin catching up, Sam needs his diaper change, so I stop everything to change it and blow-dry his cast. This takes 30 minutes.

7:15 p.m. Kids are starving, so I wash Maya an apple while Chris cuts up a pear for Sam. We give them gifts she brought to distract them, a puzzle for Sam and modeling clay for Maya.

7:30 p.m. The rice is not done at all. The directions are crap, apparently.

7:45 p.m. I ask Maya to wash her hands, and struggle to get Sam’s hands wiped with a Wet One while he boxes me.

8 p.m. We are finally eating.

All this being said, and while I’m not looking forward to the next surgery, I am dreading it much less than the last one. We know much more this time, know how to handle and treat his pain and everything else... And in hindsight, it doesn't seem like a long time. It feels like he's been out of that thing forever. He is asking when he'll walk again, and I do feel really bad putting him right back through this again after he gets his legs back, but I don't want him in that spica in the summertime. If he was uncomfortable in winter, I can't imagine August.

Soon this will all be over!

Harder than I thought...

I had this dream the other morning. I was in a body cast.

I was not my size, I was small like Ewan, but I wasn’t Ewan, I was me.

I was face-down on my little bed, and that sent the pressure through my joints and compounded the pain and stiffness after hours of sleep....

My hip joints were so sore from being bent and turned outwards, in a squat position, for weeks, that even though I was completely exhausted and wanted nothing more than sleep, I had to cry out in pain.

At that second, Ewan cried out, and I heard it through the monitor we had set in our room after his surgery, even though I had been in this huge deep sleep.

It was dark outside; I wasn’t sure if it was the middle of the night or morning. But I muttered to Dave: “He’s sore. His cast hurts.”

Lately he says he doesn’t want to go to sleep. His naps are shorter, and he wakes up increasingly early. I think that’s because his joints hurt.

I felt how it feels, I think, and if I’m right, it HURTS.

I can’t forget that stiffness in my dream, it was so consuming, it was so painful. I know it didn’t bother him before because he was in so much pain from the surgery, and then so relieved he didn’t hurt, that it wasn’t so bad. But now we’re on week three ... if I was stuck in a squat position for three weeks, I would hurt more too.

I swear that I dreamed this pain. I swear I know exactly how this felt.

I’m starting to hurt in my own right. I have bruises all around both hips, bruises on my forearms, and my arms and shoulders burn from hoisting him in his body cast and wheelchair.

At one point tonight, Iliana wanted me to pick her up while I was holding him too

Daddy was out with an old friend in Boston, so I had no choice. I told her to stand up on her little chair, and while I balanced Ewan in my right (and stronger) arm, I scooped her up with my left.

I was astounded that my 4.5-year-old, who once felt so heavy, was so feathery in my weaker arm.

I was on a phone call for work today, and Ewan was shouting that only Mommy could bring him his cheesy popcorn. I tried to ignore him while I typed as fast as my source spoke (and I really type fast, but this guy speaks crazy fast) but I had to go to him, because he only wanted me to bring him popcorn.

I had the phone cradled, was pouring popcorn into Ewan’s bowl, and was asking my source to repeat himself as he quoted export statistics.

But I got the interview, even if I did have to ask the president and CEO of a renowned boat company to repeat every comment with a number to ensure I had it straight.

This morning, my mother-in-law and I took Ewan into Iliana’s classroom, actually getting the wheelchair out to stroll him in so he could see some kids.

This isn’t as easy at it sounds. The wheelchair needs to be adjusted just so in the back of my RAV so it doesn’t bash around, threatening to shatter the back windshield or bash one of my kids’ heads in. This takes about 20 minutes each time, and a lot of brawn. This thing must weigh 50 pounds. I actually think it weighs more than that.

Then we went to Trader Joe’s, and got him out and I strolled him around while Chris wheeled the cart. Then I was going to just zip into Target myself while those guys stayed in the car, but Ewan wanted to go. I agreed, and we found handicapped parking again while I adjusted and put together the 100-pound wheelchair, all in an effort to get some ladies’ sweat shorts in extra small that would go over Ewan’s cast and work as makeshift pants.

I’d gotten him those before and they worked well; finding a drawstring waist to fit over 19 inches isn’t easy when your legs are less than a foot long. These had worked OK, if I cinched them tightly. But, when I went to buy more last week, I figured if I got smalls maybe I could wear them later. So I did, but the small size just swallowed him and didn’t work at all, so I had to go buy more.

Getting back into the car, I had tried to wedge the wheel chair over the groceries, which was pretty stupid and meant I just had to take everything out and start all over again. I had already had to pull over twice though, to rearrange the chair so it wasn't banging, and didn't want to do it again.

In the meantime, I changed Ewan’s diaper five times.

What that means is, I pulled his size 6 diaper off the front of his cast, and peered inside. I peel his others from inside his spica cast, where they’ve been tucked.

I extract those, and if there’s any moisture, I take a cool hair dryer and dry between his cast and his skin. Dave has been great about this too. Apparently we’re doing a phenomenal job on keeping his skin healthy, almost everyone is surprised that there’s no “skin breakdown.”

Then I tape an overnight maxipad to a small-sized diaper, and tuck it into his cast opening. I cover it all with the biggest diaper there is, taping over the cast.

This seemed really daunting at first, but it’s really not. It’s just that since Dave has been gone a lot lately, I’m the only one who can do it. And when there is poop, I have to make sure if it goes up into the cast, I carefully and meticulously clean it all out, and then blow dry again.

I might sound like it, but I’m not complaining about this. I just have no time for anything, at all, particularly the really necessary things like sending thank you cards for all the generous gifts, or sending email updates or writing blogs. Trust me when I say I’ve only given a glimpse into today, just the tip of the iceberg.

Things are going really well, but it is all-consuming.