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.

Date night gone awry

My high-heeled boots are crumpled up on the bathroom floor.

That's where I left them after tromping around the house in them for two hours, when I finally realized we weren't going out.

I had adorned jeans instead of sweats. I had actually applied makeup, the first in days, and curled hair, which only happens about twice a year. But eventually, I had to admit to myself that we can't leave. Rather, I can't leave.

And I don't mean this to seem as mournful as it sounds. I just really wanted to take Jim away tonight, and not to worry whether Sam needs his Codeine to help alleviate the pain of a major surgery involving an osteotomy, whether that's contributing to his digestive struggles and whether we should just give regular Tylenol, whether he's having spasms after all his muscles have been cut through and whether we should give him Valium, whether he is drinking enough, whether Maya is feeling totally neglected during all of this, whether we should get them out more, get them out less, get them out together, get them out apart.

My brain won't stop, it's always working. And it always has done, but now the stakes are pretty high. And I just can't seem to let up on myself. That's why getting out tonight was ideal. But life sometimes tells you things you don't want to hear.

So finally, when Sam began wailing again around 8:45 p.m., about 30 minutes before our chosen movie was set to begin, I just unzipped my knee-high boots and put on my comfy slippers. Jim and his mom tried to usher me out the door around 9, but somehow I knew.... we hadn't given him the hard stuff, he wasn't going to go to sleep. Sure enough, as they were shoving a coat into my hands, I heard him again. I gave him the Codeine and he went to sleep after I sang a few songs and rocked him. But we had already missed the movie.

Of course, he was hurting too bad to go to sleep. We're trying to do what they said in the hospital, tapering him off the meds. But it's only been a week and a day, and mostly they are adamant that he needs medicine regularly if he's hurting.

Here's the hard bit. He's 2.5 years old, and is used to living with a certain amount of hip and bone pain. He doesn't quite know how to articulate it, and is so fearful of the "yucky" medicine he will often cover up unless he's just in excruciating pain. (I've tasted it. It really is horrible.)

He has always had a certain amount of discomfort or pain in his hips or femurs, even if the doctors don't believe he has. I know my boy really well, and I think he hurts more often than we think. That's what I said a few days ago, but was rebutted with stories of how he was engaged and playing. I think he can play with quite a lot of pain. He is used to pain.

Looking back, I think I was right. He was hurting. But even he didn't know how to express that pain, until it got too big for him to take on. Then he became inconsolable, testy, angry... and then the pain became more difficult for us to control. That is essentially why we are here tonight.

Through all of this Maya has begun Occupational Therapy, and we have tried so hard to give her special time. The two of us had a tea party this morning. Still, I can tell she misses me and her schedule. I miss her too. I miss our schedule, and all the time the three of us usually have together.

It was funny, I was on the phone with my sister-in-law and she had scolded her kids for fighting. I got a funny twinge, totally unexpected. I hate that fighting more than anything, or so I thought, but suddenly I missed that bit of normalcy in all our lives. Not having to wonder if something hurt, if so, what was it? Should I give this medicine, that medicine? Is the other sibling getting her share of my attention? Can my husband and I just go out for a couple hours? Being driven nuts by fighting siblings suddenly sounded welcome! So that means I am clearly unstable, because I hate that fighting so much...

I guess I should pick those boots up and put them back in the closet, because they're kind of making me sad. There will be other date nights.

Overwhelmed ...? Understatement

I'm going to do my best here not to sound as beaten as I feel.

Sam's surgery is a week from Thursday.

We've all got a cough that has lasted for weeks, and I think carrying this cold, or swine flu, or whatever, has taken its toll on me.

I think I will have to take Sam back in to make sure the antibiotics kicked out his double ear infection; he seems to be feeling lousy again. They won't put him under unless he is totally healthy.

Not only that, we all have a ton of appointments before then. I have an EKG (echocardiogram) and an MRI scheduled for tomorrow. The MRI is to look at my head and see if the big fall I took a year ago Christmas Eve is the culprit of these intense stabbing headaches I've been dealing with for the past 13 months.

The EKG is because the doctor heard a heart murmur and said that this can sometimes cause aneurysms. Don't you just love to hear that word at a doctor's appointment? I doubt this is the case. He told me aneurysms can sometimes cause headaches. It was my understanding that aneurisms caused death.

On Thursday, I'm seeing a neurologist and my primary care physician to go over all of this.

On Friday, Maya is going for her MRI and EEG. This is because the Monday before the New Year, Maya came into the kitchen woozy at about 7:30. I was out with Miles, Jim was chopping peppers for me after his dentist appointment. I wasn't out there five minutes when Jim shouted to me that something was very wrong with Maya. I ran in, and found him holding her. She was drooling all over the place, to the point that it was bubbling out of her mouth, and she said she had a headache.

She asked, "Why am I talking funny?" in this thick slurred voice. I thought she might be having an allergic reaction, but couldn't figure out the drool. I looked at her tongue to see if it was swollen; it wasn't. She seemed dazed, but not completely out of it as if she were having a seizure. There was no fever ... just pale skin with some splotches on the right side. The whole right side of her face was drooping as if she'd had Novacaine.

I took her to the ER. I didn't call an ambulance because she seemed to be coming back. I actually let her eat first, probably not smart, but she kept saying she was hungry. She seemed OK. Not quite herself, but pretty good, actually jumping around at one point.

We got there at about 8:30 p.m., and they did a CAT scan and a urine test. I assume the latter was in case we had some terrible drug in the house, and they also mentioned blood pressure medication. But that didn't fit because her blood pressure was fine. They pricked her finger to check her blood sugar, which was fine, and thank God the CAT scan came back clear. I guess the initial concern was a brain tumor or stroke. We got home at nearly 2 a.m.

She was such a little trooper. She picked out a little toy for herself, something they do in the pediatric ER, and then asked if she could find one for Sam. She took her time looking for something he would really like instead of just finding something she wanted.

We got in with this great neurologist, and I patted myself on the back thinking it was my persistence, but quickly learned that Maya's pediatrician is in the same practice with the neurologist's daughter.

I liked him instantly. He was was confident, but not overly so, and he was very connected and great with kids.

I had thought he was leading me toward questions that related to her sensory issues, and began to wonder if there was something there, but he didn't think there was any spectrum behavior at all. I really didn't think so either. I'd had a little scare a while back, but now realize Maya deals with stress by sort of disconnecting. We'd had a bout of that before we moved, but then as soon as we were in the new house, she was back to herself.

The theories now are: It could have either been a seizure, a migraine, a fluke in her neurological wiring that would cause episodes like this one, or just a fluke that will never happen again. I'm really liking that last option.

Last night I had a dream that Sam was going for surgery and I couldn't stop crying. I was scaring him by bawling so much, and I couldn't make it stop. I stopped at a hot dog stand, and cried when the guy at the counter said, "I see your lips moving but I don't hear a sound!" I cried at Trader Joe's today when I saw a mom kiss her baby. I cried when I made the appointment for Maya today and I cried while hanging out with good friends last weekend, though granted that was after having champagne.

For the first time, I really feel like I'm cracking. I really just wish it wasn't so close to when Sam was going for his surgery on the right hip. He needs me to be strong, and I'm just hoping I can do that for him. Maya needs me to be strong, during her tests and during this surgery and recovery too, and Jim is counting on me to be strong. I'm here all day with the kids, I can't check out.

(Fortunately, a couple days later, I'm feeling more myself. Praying it lasts... Also, I don't have an aneurysm. Yay! Time to explore TMJ.)

Two surgeries

Suddenly it struck me that we have our pre-op appointment on Wednesday. Then we'll get an actual date for surgery, and this just makes it all more real.

I had mentioned bringing Maya to the doctor one day a couple of weeks ago to check out her cough, and Sam told me, "I not want go to the doctor Mommy. I not want get fixed."

***

I wrote this before the all-day appointment yesterday, during which we assumed we'd get a date for surgery.

We did get a date. We were also told by Dr. Albright, Sam's pediatric orthopedist, that he would prefer doing one side at a time. That means, one major surgery to correct the coxa vara in his right hip lasting six hours, followed by six weeks in a spica (body) cast, followed by a month out of the cast ... then back to the hospital, another major surgery to correct the coxa vara in the left hip, followed by another six weeks in a spica cast.

Before I go into the very logical reasoning behind this, which I agree with, I'd like to share my Liz Lemon meets Molly Shannon moment with you in the interest of levity ... and also in case any embarrassed moms find themselves in my awkward situation.

Luckily, Jim had gotten off work to come with us. I was so thankful for this because I can't tell you how many times I've done it myself, and it is not easy to take one to the potty while the other is on an exam table. Actually, I have told you this before.

We were waiting in Room 4 for Dr. Albright to come in and give us one date for surgery, and suddenly I realized I was sweating. Makes sense, they keep hospitals very warm for the naked people in there, and it was a little nerve-wracking waiting for the final date, the finalization that yes, surgery is happening.

Suddenly, I realized in addition to sweating, I was stinking. I remembered to get myself dressed, even used a curling iron (what?) on my hair. I got both kids dressed, remembered to bring two types of snack that each of them like (nobody eats the same snack, mind you) juice boxes and several books and toys. I even dug out a couple little Christmas gifts to each of them to give them in the office, a trick I learned long ago that was necessary if I was to have any sort of actual conversation about Sam's medical situation.

But I had forgotten something. What was it?

Of course, it was deoderant!

So of course I start sweating more realizing that I have forgotten this rather important step to getting ready for my day, and of course I don't have a spare in my purse, though I should for how often I forget it.

But then I have an epiphany, and I'm passing it to you other moms out there should you find yourself as scatterbrained and nervous and smelly as me.

Hand sanitizer!

I'm not saying it's the new Secret, but it's better than nothing and it works in a pinch .... so I'm squirting it in my hands and furtively rubbing it under my arms in a very Mary Katherine Gallagher kind of way, but of course Jim notices.

"What are you doing?" he asks.

So I have to tell him.

I figure since I told him, I may as well just tell everyone. In the interest of lightening the mood of the blog.

I'm glad I went ahead with that decision since the news was once again not what we were expecting. I may as well not ever say that in this blog since I say it every single time. I even wrote a whole blog about it. So from here on out, let's just all assume that nothing is ever as we thought it would be.

Dr. Albright finally came in (and I didn't stink anymore) and dropped the bomb.

"I know last time I think I told you I wanted to do both hips at once, right?" Yes, we answered. "Yeah, well now I think I should do one at a time."

I had brought up my concerns about Sam's Metaphyseal Chondrodysplasia, Schmid type, in terms of anesthesia. Because it's a type of dwarfism, I was worried about potential differences in dosage. I wanted him to be asleep for the whole 12 hours but I obviously didn't want him to have a hard time breathing. Wouldn't his genetic condition change how much anesthesia he could safely receive?

I still haven't connected with the anesthesiologist at Alfred I duPont Hospital for Children in Delaware, but want to before I talk to Sam's anesthesiologist because Dupont has so much experience with little people.

Then Dr. Albright started asking us about his size, and whether he'd dropped below the fifth percentile. He is below the fifth percentile; my understanding is that he's not on the growth chart in terms of height. He's in about the 20th for weight.

The genetic condition and anesthesia was a good point, and one that Dr. Albright seemed to already be thinking about. Because Sam has a narrower breathing passage than other people, putting him under for such a long surgery is more risky. (I have read that all people with a genetic condition causing dwarfism are prone to sleep apnea, and so this all clicked into place to me.)

The other concern is potential blood loss. Because Sam is so small, he doesn't have much blood to lose. When the bone is being cut, it bleeds. You never know how much it will bleed until you cut it.

That concern combined with the anesthesia concern was enough for Dr. Albright to want to be cautious and do one side at a time.

And of course, while inconvenient, Sam's safety and health are the only real concerns. Because this isn't emergency surgery, it's considered elective surgery. So Dr. Albright asked us what we wanted to do.

"It seems like you're uncomfortable doing both sides at a time," I said.

"Yeah, I would definitely say to do one side at a time," he answered.

"Then that's what we're doing," I told the doctor. I think we need the surgeon to be comfortable.

I like Sam's doctor a lot. He has spent so much time with us, and yesterday was no exception. He's good at gently guiding us to where we need to be, and there is no question in my mind as Sam grows that early surgery will be best for him. He really is inhibited physically, and he notices it. It's impossible not to notice. I'm glad Dr. Albright agrees with that.

At one point, when we were trying to answer Maya's questions, I told her that after it was all done, Sam would be able to better keep up when they race.

"In fact, he might even be able to beat you in a race," I told her.

I hadn't thought Sam was paying attention, but his head whipped up, and his face had this awe-struck grin on it.

I think that he suddenly got that. We'll have to focus on that when we're cheering him up as he goes through not one but two major surgeries and three months in a body cast.

I've never been looking more forward to July.

Slow down

It's not something that comes naturally to me, but I'm trying to learn.

Sam increasingly wants to walk, and I encourage this. He's doing so great, and I think for me, I'm patient with holding his hands so he can step down stairs like the other kids, instead of flopping onto his belly and sliding down feet first.

He works so hard at all of these physical challenges that most people take for granted. I do my best to slow down, slow Maya down -- which is no easy feat -- but we are one in the same. We move quickly by nature. We are always hustling from one distraction to the next, running and flitting.

Sam senses that. And as much as he wants to keep up with us, he more strongly wants to do things like us. He doesn't want to go down steps on his belly and knees at age 2 1/2, he wants to do his best to step down, one hand in mine and another on the railing, even though the lack of tension in his gluts will not actually allow him this physical movement. He will toss one straight leg out and use his upper body to move himself down to get footing.

I offer to hold his hand, and I don't rush him.

For somebody who is often in a hurry -- often late, often going, often cramming too much in -- I am learning a valuable lesson. I am slowing down. This is a shift for me. Suddenly I notice how quickly everyone around me wants to move. That was me two years ago. But now I look at them and wonder why, why are they in such a hurry?In a way, they make me sad.

I realize I have to learn patience, and understand that even if we're late, the extra five minutes it takes Sam to walk that distance isn't going to break us. There is some real beauty in this concept, particularly for someone who is used to rushing around.

Don't get me wrong, I have always rushed, but I also enjoy. You get used to living in a certain way. Although I had improved in punctuality before having children, I was and still am accustomed to constant motion. I think it's because I enjoy and am spontaneous that I find myself in a constant hurry, fighting to keep up with the social confines of things like time and schedules.

I am better at things like punctuality until things get too chaotic, and then I find myself back where I was as a teenager, being chided by my frustrated parents (only now it's me, or the director of Maya's preschool), because I'd missed yet another curfew. I can't blame them; now I'm on the other side of that and I realize the aggravation of a child who simply refuses to acknowledge any rules or authority, just like my sweet daughter, just like me.

I remember keeping up with my mother on our way to the mall, my small legs taking four steps to her one, because she walked so fast. It was fun for me. I loved to walk fast.

But something that is setting in for the very first time, something that would not have come if I'd not been forced to walk slowly, is that -- we can still be spontaneous and whimsical, even if we're not in a hurry.

If we're late to Maya's preschool, so what? We're paying for it.

The other day, we were taking a family walk. Sam opts to get pulled in the wagon for these walks often, because he sees his big sister ride in it and realizes it's age appropriate, whereas he is worried the stroller is not. He is extremely sensitive to anything that sets him apart in terms of physical capabilities. He's a smart boy. He knows he can't do what the other kids his age can do, but he works so hard, and as a result makes such amazing progress.

Maya was walking and Sam had decided to walk as well about midway through, seeing his idolized big sister flitting along, picking up scarlet leaves and tossing them into a stream.

Sam just can't go fast, and on any walk that lasts more than five minutes, he begins to waddle and swagger and even limp. At one point, he called out to us in frustration, "I can't keep up! I can't keep up Mommy!" But he didn't want me to pick him up, or put him in the wagon.

It was then that I began to work on my non-deliberate slow gait, just browsing as I walked, because I know Sam gets self-conscious if he's left behind. This is really a stretch for me; not only am I walking at about ten small steps per minute, but I have to make it seem as if I don't want to walk any faster.

What a learning experience that's been.

I was holding his hand crossing the street that Maya and Jim had crossed over probably five minutes prior, and I heard a motorcycle zooming up the road. I pointed it out to Sam, and the rider slowed down, waved and Sam and beeped. Maya and Jim were around the bend, they missed it all. Sam beamed with pride that he had been acknowledged by somebody as cool as a biker. For my 2.5-year-old boy, this was the highlight of the walk.

In the museum of Science the other day, we trekked from exhibit to exhibit.

When Sam climbs up into his stroller I know it's because he's had it. It hurts me because I see his energy level, I see his desire to run and play like all the other kids he sees, but he doesn't get frustrated. He just shouts, "Mommy, I wanna go up der!" and knees right up.

We stalled at several points to give him a break. At about 12:15, he told me he wanted to go to sleep. Instead I took them upstairs and fed them lunch, just so we could make the Harry Potter exhibit that we were going to at 1:30.

Lunch gave him some energy, and he was again determined to climb all 50 steps to the exhibit, all while I held his and Maya's hands and tried to toss my stroller up the stairs. Impossible you say?

Yes, which is why some kind grandmother taking her tween grandkids offered to hold Sam's hand up the stairs. Sometimes I hate to accept help like that from strangers, but realize I have to and like to pick the nice grandmother types.

After we reached the top of the FIFTY stairs (or what seemed like it) an employee, who had just said, "Oh, there's an elevator over there! There are no signs downstairs for it." (Thanks.) "Wow, look at that little guy! Look at his beautiful curls! And wow, he's walking really well!"

I still don't know how to react to that. I've never heard of anybody else being told that their nearly 3-year-old is walking well while struggling. My only guess is that they think he's a new walker, about 15 months old.

We were late as a result of all those stairs, and had to wait to get into the exhibit.

I began to get impatient, but realized this is another lesson in slowing down. The kids were wonderfully distracted by a nice English man they flew in to make the exhibit more realistic, who talked to us about his own child back in Britain. I felt lucky to have time to kill with my own kids. It really didn't matter that we missed our appointment; we were first in line for the next entry five minutes later.

The next day we were about to leave for errands. The kids were ignoring my requests, all ten of them, to move toward the door so we could leave, before I finally got frustrated and called out, "BYE!"

Suddenly Maya raced out after me as I went to put the reusable bags in the car. I saw Sam doing his best and most diligent run, which is admirable and heartbreaking at the same time. Then, as he often does, he tripped on his feet, but this time faceplanted into the front door.

I was there in an instant, and he was bawling. It takes a lot to get Sam to cry like that, a fact that was lost on the pediatrician we don't normally see. I made sure to tell him that when Sam falls, because of his skeletal dysplasia, his head always hits first. It's in the 80th percentile for size, and his weight is in the 0 percentile, and his weight in the 20th or so. He can't hold it up. I saw blood in his mouth, and his cheek began to swell before my eyes and turn purple. I was pretty sure he was OK, but I'm always worried about his head and neck.

So instead of starting on those errands, we rushed to the pediatrician. He was fine, and he is a trooper, so then the three of us made our way to Trader Joe's, then Whole Foods, and then ballet, before coming home to nap. (Him, not Maya and me.) It would have been a lot easier to have taken my time and not rushed, and avoided that extra errand and stress.

I'm seeing that more during our non-bodily injury days too. I've always been into nature, but I used to notice it more when I was out specifically observing it, too busy to see sometimes when buzzing from place to place.

Now we see everything just walking from the car to the front door of Maya's school -- a maple tree covered in fiery orange and red leaves with autumn sunlight streaming through, making it look as if it's on fire, ant hills, drainage pipes, low-flying airplanes, blooming flowers surprising us in November, clouds that look like dragons. Maya is slowing down with us, and we will actually stop in our tracks, even if we're late, to look at a flower or a pretty leaf.

Sometimes it's nice to slow down.

Up Down Up Down

There's a Yo Gabba Gabba episode with Jack Black, and he does a Disco Roll dancey dance (which I looked for and couldn't find) and the refrain is: "Up! Down! Up! Down! Up! Down! Up! Down! And roll! ..... And back! .... And roll! ... And back!"

I find this cadence echoing in my head frequently these days, partly because the New Friends episode is my kids' favorite and because I disco with Black like nobody's business. But it's also because one day I'm so completely up -- confident that I'm preparing myself for all of Sam's medical issues around his metaphyseal chondrodysplasia, Schmid type diagnosis and feeling utter confidence that we will all prevail and be fine -- and the next dragged-energy down, totally confused and unsure of how we'll navigate the future.

On Thursday I spoke to the pediatric orthopedist Dr. Maurice Albright about the surgery to correct Sam's bilateral coxa vara, about pain management and the spica, or body cast, for six weeks.

I felt so much better after that conversation. A lot of the answers were the best-case scenario, and that gave me hope. Dr. Albright spending 40 minutes with me on the phone in between patients in the OR also gave me confidence, as well as his steady assurance that he would take good care of our son.

He also consoled me in other ways.

A spica cast didn't seem as crazy and scary as it had before, and a good friend said he would help us build a spica chair for Sam, which is awesome.

I learned that Sam will need two sizes of diapers, one tiny swaddler size (or even a maxi pad, Dr. Albright tells me) to tuck into the cast and a big probably size 6 to go over him and the cast. We will have to try our best to keep it clean and dry ... a daunting idea for a toddler in diapers, but Dr. Albright said most people are able to keep it well enough to last the duration.

He's going to arrange for me to talk to the other surgeon (because Sam is so small and the surgery is so long and intense, there will be two of them) and to the anesthesiologist.

I am also still hoping to talk to the doctor in Delaware at the Alfred I. Dupont Hospital for Children, Dr. William Mackenzie, who specializes in pediatric orthopedics as well as skeletal dysplasia. I'd like to discuss anesthesia, and about pretty much everything, since the biological makeup of a person with a skeletal dysplasia (which is a type of dwarfism) is different from someone who does not have dysplasia.

We will give Sam Tylenol with Codeine in liquid form, so that alleviated my concerns of potentially giving him pain medication intravenously. He will have a general anesthesia for the 12-hour surgery, which will likely be followed by a spinal epidural to ease the post-op pain. He will probably go in on a Thursday (Jan. 7 or 21st) and come home Saturday morning if all goes well.

Dr. Albright sounded confident, but not eager or overconfident. It was just the right balance to me. He was exceedingly patient with my dozens and dozens of questions. Some of them were slightly more inane sounding than others, I suppose.

For instance, I asked if they had clowns.

I think Dr. Albright thought I was joking, but I referenced a story sent by a close family friend that found children were much less stressed when there was age-appropriate entertainment like clowns. Dr. Albright said he would see to it that Sam had access to child life specialists to help with anxiety.

I told him this was important -- the article (which I can't link here because the story was clipped from a paper and I don't know which one) mentioned that parents being present surprisingly did not reduce anxiety levels in kids unless the parents were receiving acupuncture or other calming techniques. (I'm wondering if Valium qualifies as a "calming technique.")

Suddenly I felt a shred of control, just a bit of confidence that I could indeed handle this, all while buying a house. This was on the eve of a follow-up with the geneticist to discuss his metaphyseal chondrodysplasia (meh-taf'-uh-SEE'-ul con'-dro-dis-PLAY'-zsa), Schmid type.

As usual, every single time I get the slightest bit comfortable, things shift.

Here we go in genetics.

It wasn't anything specifically that the geneticist Dr. Angela Lin said that I didn't already know. It was just being there this time. I couldn't get my head together.

We talked about some genetically alarming things that may or may not even pertain to Sam's future. They were pretty much things I knew, like, Sam's chances of passing this to future offspring are 50-50. That is if he partners with someone who does not have Schmid. I wonder if it's the same odds for children by two people with different types of dysplasia as it is if they have the same. They are trying to find out for me. That's about all the detail I'm prepared to go into on that subject, and at this point it is not really what we need to focus on.

We had a brief discussion about the possibility of growth hormones, a topic that makes my insides cinch up and knot. I'm almost relieved learning today that it doesn't seem they will help in Sam's case. I don't ever want him to think we're trying to fix him, that he isn't right just the way he is. If others in the world are too stupid to recognize his greatness because he is of a different stature, I mean it when I say it's their loss. Sam is so wonderful that the people who really matter, who will matter to him, will not see his size as anything but a piece of who he is.

I had an eerie feeling with other doctors in the room, as Dr. Lin explained cues for identifying Sam's condition. I didn't mind this; I'm happy for anyone to be more educated on this, particularly the doctors who will help diagnose such genetic conditions.

But I couldn't help feeling protective of him there on that table, small and agreeable, as they discussed how you could tell that his fingers were smaller proportionately because of the hand creasing.

"Are his toes also out of proportion?" one asked.

Not really, Dr. Lin said, though the big toes were broader than an average bone stature.

I asked if this is why his second toes don't touch the floor when he walks. I know this because even when he's barefoot outside and comes in with little filthy feet, those toes are clean. She said possibly, she didn't know.

It was nothing these doctors did, it was just being the center of this discussion, almost as if Sam was a subject and not my sweet little boy. All of that while running down the hall to check on Maya using the potty... it just made me feel protective, like I wanted to snatch him and say, "Don't talk about his limbs as if they are a novelty!" I wanted to kiss everyone one of his tiny perfect fingers.

I maintain that they conducted themselves with perfect professionalism and friendliness and respect for us all. They obviously like Sam as a kid, who wouldn't? But something about it made me want to take my babies and run.

We left there dazed, as I hustled the kids across the street to get some pizza. Then to Ben & Jerry's for ice cream. And then to ballet.

The kids have been acting up. Last week I believe some things sunk in and stuck that hadn't before, and that ranges from my discussion with Dr. Albright to our morning at the hospital.

Jim and I are trying our best to get them excited about buying a new house (to us, actually it was built in 1949), painting their rooms whatever color they want, and then we find ourselves talking to them or around them about the logistics of Sam's surgery, body cast, genetic predisposition.

It's a whole lot for a 4-year-old and a 2-year-old to take in.

It's a lot for a 35-year-old to take in too.

But we're bumbling along, and I'm trying so hard to do things right by them. I just restarted Being The Other One by Kate Strohm, so I can help Maya along through this. Right now, I think she needs some understanding from us. When I noticed her being a little mean to Sam, not wanting him to play with her (more so than their typical brother-sister stuff) I made sure I asked her later if she was angry at Sam. She said she was, but didn't know why. I told her that it was OK to feel angry sometimes because he is getting so much attention in this. I told her she was a good girl. This seems to have changed her attitude dramatically.

Sam is still consoled by me holding him and rocking him and telling him Mama is here. Maya is getting to the point that she needs more. I'm trying to let them both know that we're all confused sometimes, we are all scared sometimes, but I know we will all be OK. We're a family, and we'll do this, and we'll be stronger for it.

I think all in all, we're doing a fairly good job with it all.

Up! Down! Up! Down! Up! Down! Up! Down!