Thursday, April 30, 2009

Last note at bedtime

Why is it that The Boy is around 1/3 my size and around 1/10 my weight, but takes up a solid 2/3 of the bed?

Here we go, once more round the mulberry bush

I'm really kind of depressed that The Boy isn't getting his chemotherapy starting tomorrow. I'm really kind of tired of this whole "jail" thing, because the poor kid is really stuck in a cell. The room is about 8 by 10, more or less, which includes a bed and a crib. He can't go outside into the hallway and look around, so he's locked in his cell until the doctors tell us otherwise.

Funny story: Dr. Rifkin does not get a "bye" from The Boy except when she tells him that he can go home. I wonder how he knows?

It is like a cell. It's depressing, even with all of his toys. Neither my wife nor myself are the type of person that can function long in an enclosed environment without starting to go a little batty. I know that I'm at the end of my rope, yet we have AT LEAST an additional four days in the hospital because of the delay in chemotherapy. That means four more days, sitting in an 8 by 10 room, trying to keep The Boy entertained, amused, and educated. And, trying to keep ourselves from going absolutely insane.

Interesting issue: toys with little pieces. We're having issues with them, and with dozens of crayons, and that sort of thing. Since we have to clean everything, it's very difficult to keep all that stuff up and running without significant annoyance factor. So, we're limiting the number of toys that have teeny tiny little parts in order that cleaning becomes easier. I think we'll leave out one set of tiny puzzle mat, one wooden puzzle, two sets of plastic cars, one magnet thing that plays music, some big Blockos, and one set of stacking cups. That's enough, with a dozen crayons and a coloring book. It'll keep him amused and relatively focused. I'd rather he have fewer things to dump out onto floor. I don't begrudge the dumping out, but I'd prefer to make the cleanup easier.

I know Grandma disagrees with that. She loves playing with the stuff with little pieces with him in the hospital, which drives my wife and me crazy. That's Grandma's job, to spoil The Boy and to drive us crazy. It's payback for dealing with her daughter for so many years.

I'm not sure if I'm worried about this whole "swine flu" thing going around. From my reading, it's pretty much just the flu with a little twist, not a death sentence like the bird flu or Captain Trips. (I've read a little too much Stephen King for my own comfort.) (The Boy just rolled over and grabbed my arm as if it was a teddy bear. He's cute.) They've pretty much said that it's a "pandemic," meaning that it's spread beyond immediate control to enough countries that it's effectively out of control. Multiple cases have arisen in New York City, which means that it's only a matter of time until it shows up in New Jersey. And, since my school is in a commuter town... particularly with a bunch of germy, non-sterile children...

I'm probably a little more sensitive to this because of the fact that the flu lead to symptoms that killed my brother, for whom The Boy was named. With no functioning immune system of which to speak, he strikes me as being extremely sensitive to this illness. I know that he's in the right place and they know how to take care of things like this, but... I'd really like for that swingset to actually get played upon. So far, nobody's been on it, and it's getting lonely out there.

We'll see. I'm headed out of town for Friday night and into Saturday for the barbershop contest. It should be fun. I might be home Saturday afternoon, I might be home Saturday late. It depends.


No chemo this weekend because The Boy's platelets are too low. They are hoping to start the chemo on Monday. The platelet count needs to be around 100k, and they are in the 50k's.

Grandma is still coming, as she has plane reservations and I'm still going to the barbershop contest. She'll make a decision about whether she's staying or going later, when they decide to do chemo.

This sucks. Instead of getting out on Tuesday, it'll be Friday at the earliest. Another week at the hotel St. Barnabas.

Wednesday, April 29, 2009


The number one thing that I wish that I'd been better about doing is keeping myself hydrated while I'm here. With the air circulation system running the way it does, I'm constantly dehydrated when I'm here at the hospital. That's my message to new hospital goers: drink lots of water.

Speaking of, The Boy is showing signs of over hydration, namely high blood pressure for no apparent reason. The nephrologist (kidney specialist) says that he'll likely be fine once he's off the iv drip. Until then, he's on an extra dose of norvask and a new blood pressure med.

Best part? Our nurse wants to give him an extra dose of norvask now that he's been asleep for hours. It isn't bad enough that we struggle and fight to get him to take the meds at the time he's supposed to take them. Now they want me to wake him up to try to take the medicine that makes him vomit.

We'll see what happens. I'm hoping sleep will lower his - and my - blood pressure.

Tuesday, April 28, 2009

Late Nite Blogging

I'm waiting for my iPod to back up before it syncs, and it's taken 15 minutes. I've updated Facebook and Twitter and set the latest Bleach episode to convert to iPod Touch format, so here I am. Not that y'all are a lower priority, but I didn't think about blogging until now.

The Boy is off all of the meds except for the c diff antibiotic. That's a good thing. Considering the amount of rice and yogurt that he's been eating, he should resume normal (solid) pooping shortly. ZOMG - this kid can chow down on the rice and rice cakes. He might be more into the honey, but I'm all right with that.

This afternoon was a brief visit by me, and I'm kind of unhappy about that. It had to be - I had rehearsal tonight, which went great, the Dapper Dans are going to ROCK at the contest on Saturday - but it was frustratingly brief. I got in some good playing with The Boy. We had a fun game: I'd put his crayons and markers into a zipper bag until he'd see me doing it. He'd shout, "Nononononononono" and take them from me and dump them on the ground, play with the bag, and then resume whatever he was doing. I'd stack them in again (not to put them away, just to mess with him), and it would resume.

We had some nice giggle time, where I tickled him until he was paralyzed. I don't think Mommy does the giggle thing quite as thoroughly as Musical Daddy does.The only down part was the head butt directly into my nose. Ouch. Not so much fun, particularly since I was already nursing a nasty tired-headache. The most fun game? I start buzzing my lips like I'm going to give him raspberries, and I slowly move in to "attack." He usually folds himself in half and collapses, laughing, before I'm within six inches of him. He usually will laugh himself into utter helplessness without me actually touching him.

Amazing, isn't it? Here's this kid, suffering from cancer, chemo side effects, antibiotic issues, cooped up in a small room for over a week... and he's still doing so well, emotionally. Kudos to Mommy for not letting him go nuts.

My iPod is still backing up. I think there's a problem with the backup program. Sigh.

Anyway. Tomorrow, I'm sending Mommy to orchestra rehearsal and spending the night. It means an earlier morning for both of us, but I'm okay with that. It gives her more time at home. We'll see what happens Thursday night / Friday morning. I'll probably go home, because I do have to pack for the trip to the contest at some point. Then again, considering I might not get my iPod back for an hour or two, it might be a good time right now.

Monday, April 27, 2009


GeoTagged, [N40.65508, E74.38990]

Here's our new swingset. It's going to be a lot of fun, assuming The Boy is out of the hospital by the end of the summer.


GeoTagged, [N40.65508, E74.38990]

Testing something...


Today was a frustrating day. We're not too pleased with how this whole hospital stay is working out, and it's getting to the two of us pretty badly. We're just not catching any breaks, and we feel that things could have been handled better by our caregivers.

Don't get me wrong - we aren't saying that the nurses and doctors are mistreating us. We are saying that we aren't happy with this visit. My wife discovered that there are other cases of c diff on the floor, which means that there is a significantly increased chance that The Boy caught it from something on a nurses' or doctor's shoe or hands or whatever. We can't say for sure, because c diff could legitimately have been the result of the antibiotics.

And, with one positive staph test on Monday and a negative test on Tuesday, why hasn't a third test been ordered?

The problem with the long hospital stays is that things go very, very wrong. Outside of the fact that being cooped up in that room is akin to being cooped up in a jail cell, hospitals are not clean, sanitary places. Sick people and germs are all over the place. Combine that with an immune deficient infant...

The Wife and I did get to go for a walk today, which was nice. I am now taking an hour to just sit and watch television. I need to, because I haven't done that at all or more than a week. Work is hard. Taking care of The Boy is hard. I need to relax a bit, to take a load off.

Did I mention the three fillings I got at the dentist today?

Only nine more days before we get out of the hospital. That's nine too many.

Sunday, April 26, 2009

5 Year Anniversary

I forgot to denote an important event in my life, one that happened five years ago and has been a positive and overwhelming force in my day to day life. Five years ago, I began a relationship that is truly special and remarkable:

I bought my first iPod. A 20 gig model, to be specific. Click wheel, button row above the wheel... White... No frills. I began the process of loading my CDs onto my computer, then my fiancee's CDs, and a loving relationship was born.

Now, 16,000 tracks, 30 or so podcasts, and hundreds of movies and tv shows (thank you, TiVo-to-go), as well as four replacement and upgrades later...

Let's see. The first iPod lasted two years and had a hard drive failure while I was wearing it on an armband while mowing the lawn. The 2nd iPod was replaced when I bought my wife a new Mac computer, and that one was replaced when I got my first iPod touch for free using a teacher's discount to buy another computer. Then, the 3rd iPod was stolen, and thus my current machine is here. This will likely last me until The Boy is done with his treatment, when I get whatever generation iPhone will be available.

Tomorrow, I reset one of my playlists to "before five years." that's cool, to hvr stuff that I haven't listened to in a long time.

Sunday, Funday!

So, here we are, at the hospital, getting platelets and a bunch of antibiotics. We're now a "risk of infection - stop at nurses' station for gown and mask" room. I'm not wearing that because, if I've got it, I've already been exposed. Whatever.

Last night was fine for us, once we got over the irritation and shock of the c diff diagnosis. I put away clothes, wrassled with the computer, and packed for the week. This morning, we had a choir exchange with a church in East Orange. That was fun, although if there's an incense shortage in Essex County, I know why.

I got to the hospital a little later than I normally would. Aunt M was there, so The Wife and I took the opportunity to go for a walk in the mall and engage in a little retail therapy. I bought some new clothes and some books.

The Wife is really bummed and burned out right now. It's a little overwhelming: we're going to be in the hospital until he's done with his next chemo session, which us a week from Tuesday - roughly ten days from now.

It's hard being away from home for that long. It's hard living out of a suitcase, and it's hard only getting to spend a little bit of time at home. And, as helpful as our respective families have been, it's a lot of pressure on us.

Now, add Baby Bear to the mix. What are we going to do with him? G- only knows. That's immensely stressful.

My turn with The Boy again tonight. It should be fine.

Saturday, April 25, 2009

Oh, poo.

Colostridium difficile is the latest development. According to the quick web search, it is a disease that generally occurs because of antibiotic overuse.


The treatment? Ten days of a different antibiotic.


Looks like we're going to be here for a while. My sense of postponed chemotherapy is tingling.

Glad I've got a big stack of magazines to get through - like four months worth, thanks to the amount of schoolwork that I'm doing.

This was my morning...

Life is good, Elmo notwithstanding. The Boy is very, very cute. This was the fourth rice cake half that I had given him, so it was gratifying that he was still so excited to get some honey.

Argh. Kill me now.

It's Elmo all the time, here at the Hotel St. Barnabas. We only have three Elmo episodes on the iPod, and PBS is only showin more obnoxious children's programming. I have no coffee.

Kill me now. Please. It would be less painful.

Three for three, baby!

Even though the Yankees ruined part of my night by blowing the game - twice - we had a good night. I went to sleep after watching Fringe, which was around midnight. I woke up around 6:30, when the nurse came in for the first of four trips to get blood or give flushes or somesuch. She was forgetful this morning. Not about anything really important, mind you; she just forgot to draw blood once, then returned to change The Boy's IV bag, then returned to unhook The Boy from the IV pole.

So, I was then awake. I read some blogs, then The Boy woke up, looked at me, grunted, and peed on my arm.

Ah, the tender joys of fatherhood.

We played, he pooped, we played more, and he's chowing down on rice cake while we wait until 8:30(!!!) for his real breakfast to arrive.

I wonder if it'll come with coffee. Doubt it. I need some coffee.

The Boy was very sweet last night, though. Only woke twice, both for about two minutes. Snuggle and a huggle and back to sleep.

It'll be nice spending the day off of the iV pole.

Friday, April 24, 2009

Just saw the doctor....

Basically, he's got staphylococcus epidermidis, or "staph epi", as the doctor called it. It can be a concern because it can cause issues with The Boy's port. They're going to keep one of the antibiotics going until his blood counts recover. The other one will keep going for 7 days after the negative result. They aren't particularly worried about it, but they want to proceed cautiously.

And, the doctor left the door to the room open when she left. What, do these people live in a barn? Hello: IMMUNE COMPROMISED CHILD. Close the frakking door!


So, I'm on baby duty again tonight. For those keeping score at home, that makes three in a row. In a larger sense, I'm looking at this like training for the summer and the fall, when I'll likely be doing 98% of the overnight stays until Baby Bear is old enough to make it through the night without nursing. Because, after all, Mommy carries a milk source around with her, and I do not.

"I have nipples, Greg. Can you milk me?" - Robert DeNiro

It'll be an interesting thing about the whole hospital trips, once Baby Bear is born. The hospital rules say that the baby has to be one year old with immunizations up to date in order to "visit." So, if The Boy has to be admitted to the hospital because of a neutrapenic fever, what do we do with Baby Bear? (The likely answer: $9 an hour at the babysitters. Sigh.)

The Boy is asleep, and it's almost 10 o'clock. I'm going to listen to the end of the Yankees-Red Sox game, then watch last week's Fringe, and go to sleep. Maybe. If I'm allowed.

The good news? The Boy is off of the IV tubes for right now. The doctors think that the increase in fluids is making his blood pressure go up, so they have him off of the IV fluids and have increased his blood pressure medication. They're probably going to treat him for his staph infection, which is 10 days of IV infusion medication, 2 to 3 times per day.

The difficult thing about it is the fact that the first culture, done in the emergency room, grew a virulent infection in just a couple of hours. The second culture, done after the first antibiotic was administered but before the second antibiotic was administered, has not grown anything in two days. So, what do they do? They're bringing in an infectious disease person to examine the two cultures.

But, as I said to the doctor, I believe that the consequences for treating a non-existent staph infection are MUCH less than NOT treating an existent staph infection. (Read: some issues vs. death.) So, let's treat it, and we'll worry about the rest later.

Isn't it interesting, how we as parents adapt to our situations? A year ago, before his diagnosis, that would have REALLY freaked me out. Now? Par for the course. Just another thang to add to the list of daily concerns, like remembering to clean & change the bandages on my wound and remembering to NOT eat the donut sitting on the counter over there.


Easy Night

Last night, The Wife and is went for a walk around the park with some other teachers. It was the first time that she and I had actually talked all week, which was nice. It's rare that we actually get a moment to pretend we're, like, married or something.

We got to the hospital soon after. I blogged about the whole throwing-food incident. He and I played afterwards until Mommy got there. He's definitely in a momma's-boy mode.

She went home, and he threw a fit. Got over it. Threw another. Got over it. Snuggled, then slept.

We both slept through until 6:30, with only a quick wakeup at 2 for some hugs, a diaper change, and Goodnight Moon. Then, we went back to sleep.

No worries.

Thursday, April 23, 2009

Little Stinker

While eating dinner, The Boy figured out how to un-hook the high chair tray. Food went everywhere. I had to clean the room an the floor while The Boy sat on the bed complaining about the fact that he couldn't play on his playmat.

You know: floor food + staph infection is not good.

Wednesday, April 22, 2009


I'm blogging from a hospital bed, with a snoozing baby hogging most of the available sleeping space. That wouldn't necessarily be a problem, except for the fact that the antibiotics have killed the bacteria in his digestive tract. This means that his gas is absolutely horrendous.

Sigh. Snore, fart. Snore, fart. Snore, fart.

Now I know what it's like to sleep with me.

Thursday afternoon

Anyone around from 3:30 to 5:30 tomorrow? I'd like to take The Wife out for a little bit, and we're having issues finding a sitter.

Tough week.

So, yesterday I wound up spending two hours with The Boy, as I suspected. He has eenfighting a staph infection; fortunately, it isn't one of the really bad ones. He'll be in the hospital for a few days, maybe until chemo starts on a week from Friday.

I'm spending tonight and tomorrow night at the hospital. I'm kind of excited about it, because I haven't seen him enough. He was wonderfully impy today, according to my wife.

I'm feeling kind of disconnected from everybody because of my work schedule lately. It'll be nice to restore some of that connection.

Tuesday, April 21, 2009

He's In 4224, which is where he's been for chemo the last two times. Go figure. We got there around 12:15, and I left the hospital around 12:45. Got home, did the garbage and recycling, and now I'm going to sleep a good four hours before a nice 16 hour day tomorrow.

He's okay, I guess. None too happy about being examined by a fourth doctor, who looks young enough to have been in my third period band class today. They've got him on iv fluids, an antibiotic, and Tylenol. His temperature was down to manageable levels, and the chest x-ray didn't seem to find anything unusual, or they would have contacted is earlier.

Now, I have a two hour window to see him tomorrow. Sigh.

Monday, April 20, 2009


No results on the chest x-ray yet. We had an antibiotic, a reasonably successful port access (albeit on the second attempt), and difficultyimr getting Tylenol into the poor kid. The secret, this time? small little bits, patience, and a half hour.

There's a transfer and a release that need to be done before The Boy will get a room. Hour and a half? Sigh. So much for getting six hours of sleep before a BIG day tomorrow.

To make matters better, the gaping hole in my back that used to be a cyst is leaking all over the place. I'm glad I changed into an old, dark t-shirt.

Hospital Time

You know, five months without a neutrapenic fever is actually pretty darn good. Most of our cancer friends have been admitted at least once for fevers and such. Let's face it: The Boy has been lucky, and we haven't helped matters by taking him to the Festival of Harmony and such.

So, the 100.4 fever doesn't come as a complete shock. It's a little surprising, considering that he had such a good, active weekend, but it's not too much of one. We packed the car up, and right now I'm sitting with him while The Wife goes to get dinner.

For some reason, I'm not terrifically hungry right now. Most likely because I stopped at Costco and had samples. Mmmmmm... free pulled pork.

Updates will follow. We're going to get a chest x-ray and get checked in, likely for the rest of the week. So much for the swingset tomorrow. Besides, it's raining too hard for outdoor construction.

Saturday, April 18, 2009

Fun day

We took The Boy to the Festival of Harmony. The Festival is this great event for young singers: they learn a handful of songs in one day's rehearsal and perform them that night. There's about a hundred or so kids involved.

The Boy had a great time, walking around the big school. One of the chaperones brought a dachshund dog with a very gentle disposition. The Boy took a little while, but he worked up the courage to pet the doggy. It was very cute.

He really enjoyed the singing. He didn't stop much and listen, but he did circulate towards the music often. He was very, very good and charming.

This morning, we resumed our walk to the diner for breakfast. It was a great morning. He loves eggs right now, and he ate quite a few potatoes in hashed form. He didn't want any of my wife's French toast, though.

Tonight, The Boy did a great job playing outside. He played very nicely in his new sandbox, and he pulled his tiny wagon halfway around the corner. We pulled him in the big red wagon for a little while, which was lots of fun. He loves the wagon!!

Bedtime was pretty easy. The Wife sang to him, read a story, and told stories to him until he slept. I was finishing by prospectus, but I joined them for some snuggle time.

Friday, April 17, 2009

Fun Evening

So, we went up to the Original Pancake House to meet Grandpa for dinner tonight. His phone was on silent, so by the time I actually got ahold of him, he didn't have time to meet us. Oh, well. I like pancakes regardless.

We went back to Grandpa's house to hang out, because the learning quartet is staying there for the Festival of Harmony. The quartet is half here at 10:35, so I'm not entirely sure if we'll hear them sing.

He was a little crazy man tonight: running around the house, getting into everything that he isn't nailed down. ...and that's just until he figures out how to use a claw hammer.

He liked listening to the baritone and bass barbershop, though. Tomorrow will be fun with all the boys singing at the Festival.

Wednesday, April 15, 2009

In case you were worried...

I did get to watch Lost. We had a nice night, after all: lots of playing with stuff, walking around the house... we watched "Baby Songs - The Dance Show," and he let me nap for fifteen minutes to recharge the batteries. He started getting sleepy at around 8, so I made a critical mistake: I started the bedtime routine. Teeth, vitamins... although he initiated the teeth thing, by standing at the sink and saying, "Teeesssss.... Teeeesssss..." which I interpreted correctly. Interestingly enough, for the first time in a while, he let me help with the tooth brushing. He then started wandering the house (you know, that whole wandering the desert thing... it's in his genetics...), but he came back when I yelled, "TB... vitamins!"

He loves his vitamins. I don't get it.

Soon after, I put on Goodnight Moon, and we cuddled up in bed together. This was the point where he pitched a fit. Like, major one... after he pushed me away (three times - I did try to calm him down twice), he wandered the house crying at things. He didn't do anything out of anger - just kind of stood in different places and cried. Eventually, he came to me, I picked him up, and he snotted up the shoulder of my shirt. I turned him around and he fell asleep on my lap pretty quickly. That's when Lost started.

I brought him into bed and brought the computer in to do some schoolwork - Grade Rubrics for my students. The Wife came home, and we realized that we hadn't done the nupagen shot. He didn't wake much, just came to consciousness, grabbed his leg, yipped a bit, and settled back down. We got lucky.

My wife's point: "We really don't want to do it again. He has enough nightmares." Ugh. You're not kidding.

So, here I sit, on my bed, getting pushed off by my sleeping baby. It's never boring.

The new experiment: more bedtime rituals. Less television.

Yeah, right.

Olive Garden

We went to the Olive Garden for dinner tonight. It was okay; but the Olive Garden isn't exactly first class dining. Better than Friday's, anyway.

The Boy was not so interested in his pasta. He wasn't interested in mine, either, or in the breadsticks. Whatever. He had a big lunch. If he gets hungry later, I'll give him some yogurt and jelly.

He's still accessed from the visit to the Valerie Fund today. He didn't get any transfusions; his counts were quite good. They'll drop precipitously over the next several days, so they left the access plugged in until Friday, when he will likely get blood or platelets or both.

Today is Jackie Robinson Day in the major leagues, so everybody is wearing #42 on their uniform. The only player to still be allowed to wear it? Mariano Rivera, the Yankees closer, who was wearing it already when major league baseball retired it.

Guys' Night tonight. I wonder if I'll get to watch Lost or not.

Tuesday, April 14, 2009

Sleepytime Down South, Again

The Boy spent a big chunk of today asleep, which is good for The Wife. She's been fighting off a nasty, dirty, gross cold that's had her blow through about four boxes of tissues over the past couple of days. She's needed the rest, and - apparently - so has he. Last night, for instance, he was asleep around 8-ish, and he slept through until a bit after 7. With two morning naps.

Lazy boy. ...he says with a fond smile. G-d knows the kid has earned his rest. This is almost entirely chemo-related. The Wife thinks he might be going through another growth spurt. Wouldn't surprise me, the way he's been eating.

I have a feeling that much of the next couple of years is going to be like this. I also have a feeling that he's going to more than make up for it, when he's ready to do the bouncing off the walls thing that he did at last week's Compline mass rehearsal.

That'll be good for us when Baby #2 arrives, as it'll let all of us catch up on sleep.

Whatever. I'd like for him to save some nap for 4-5 today, when I really need it. Not bloody likely. Still, here's to hoping...

Monday, April 13, 2009

Diapers vs Sleep

Diaper Hell is done for another couple of weeks, and boy, am I glad. I had the 2am and 6am. I passed out around 10:30 last night, which was relatively early.

I surprised myself by waking up about 15 minutes before the alarm each time. At the start of the night, my wife was asleep in the other room; we want to avoid exposure to chemo-tainted urine. When I got up to get the diaper and rubber gloves, I returned to find him sleeping horizontally across the bed, legs tucked underneath and tush in the air. Sigh.

Rolled him over, changed him, and he was awake and hunting for Mommy. She joined us, with extra layers of protection, and the rest of the night went smoother.

So, I'm back to school this morning, having had a no-break break from school. The only break from work and the normal routine was a couple hours of Playstation on Thursday and Friday night. Sigh.

Sunday, April 12, 2009


The blogwriter app on my iPod requires a google pictures account, which is blocked on the hospital's firewall. Sigh.

Chemo started about a half hour ago. The Boy is resting comfortably with Mommy, which is good considering the fit he threw when we wouldn't let him play in the refrigerator earlier. He was standing in front of the open fridge and gagging. Since he hasn't eaten much today, it was kind of important for him to keep down his already eaten food. So, deprived of his preferred toy, he did what any toddler does, and pitched a fit.

Same results a Phil Cook in today's Yankees game: ineffective and annoying.

After this is done, we should be able to go home, for a night of Diaper Hell. Happy happy joy joy.

The good news is that I can listen to the ball game using the MLB app. The browser for the gamecast doesn't work with the hospital firewall. That's disappointing.

Might be an interesting week at work. We'll see. The Boy might be spending an hour or two with me tomorrow, which is always fun.

Mass today

The Wife and I sung two masses today while grandma took care of The Boy. Funny moment: during the children's sermon, Mother S asked the kids, "what was God's greatest gift?"

One of the kids responded, "Twizzlers!"

Saturday, April 11, 2009

Couch Potatoe

Any suggestions as to interesting tv shows or movies for a 19-month old? We're looking for interesting things for The Boy to watch at the hospital.

We watch some Sesame Street, and lots of HBO's family stuff: the Classical Baby movies and Goodnight Moon. They're great, but we're over 100 plays on the iPod for Goodnight Moon and already up to 60 (combined) for the three Classical Baby movies.

Looking for stuff that is inoffensive for adults and has fewer ADD-inducing quick image and scene changes.

We are aware that the studies say that tv is bad for kids that young. We also know that the movies help an impossible situation become liveable. We'll worry about the later consequences - well, later. Crap attitude, I know. Eh.

So, suggestions. Don't say Baby Einstein. Not a fan.

Chemo day one, part 2

Here's the picture of a boy hunting for food.


Chemo, Day 1

Chemo day one has gone reasonably well. The Wife and The Boy arrived from Harrisburg at 9-ish and were in their room at 9:30. Chemo didn't start until 3, which sucked. Down part? He's got a little fever, at the 9:00 temperature check.

It was down a bit at 10. Chances are, the cause was physical activity and eating, but there's also a chance that it was the chemo reacting with the cold that he's had all week. We'll find out soon enough. I really hope that's what it is, because I don't want an extra few days at the hospital.

I did have a couple of hours alone with him today. Grandma left me alone because he was settling down for a nap. He didn't fall asleep. We played and ate and played more. He was very fun. We went for a walk around the ward, where he correctly identified the pictures of doggies hanging on the wall.

The latest thing is to go and open the little refrigerator in the room and stand there, looking at everything. It reminds us of a teenager! He doesn't necessarily want to eat anything, although he doesn't mind a taste of some stuff. He will take a taste, chew it for a little bit, then spit it out again. He did it with a cheese stick, and then later with beef salami.

Silly boy.

Wednesday, April 8, 2009

Before I forget...

Good yontif to all my Jewish friends... hope your Passover sedar went as planned.

Back to Bed? Yeah, right.

So, here's the problem: we are not entirely certain that a standard, regular bedtime routine is going to be possible with The Boy. We know how important it is to establish a consistent routine in terms of time and sequence of activities and daytime naps. We are not entirely sure it is even possible.

The first factor are the inpatient chemo stays. We are fairly sure that The Boy associates cribs with the trauma of his surgeries. That makes sleeping in the crib cruel to inflict upon him. He isn't allowed to sleep in a hospital bed by himself yet, which means that progress towards independant sleep takes a step backwards every three weeks.

Put that aside for the moment. Let's talk about the chemo itself. It affects The Boy's fatigue cycles in a slightly different fashion as the cycle develops. During chemo and early in the cycle, The Boy will take a few more rests during the day. During chemo, he will still fall asleep at normal times at night; however, he might wake up at 3AM and decide that he still wants to play. After chemo and early in the cycle, his more frequent daytime rests will usually mean falling asleep later at night.

As the three-week chemo cycle continues, The Boy will start to normalize to a more usual toddler sleep schedule: a nap around 1PM, lasting 90 minutes or so; and a bedtime at some point between 8 and 9 o'clock on a normal night.

There are some nights, however, that he just will NOT fall asleep. I'm not entirely sure what the common factor is on those nights: diet, amount of daytime activity, one or both parents being out and away from the house. Any or none of these can be factors. I'm kind of chalking this one up to "normal" toddler behavior. I know that I have plenty of fluctuation in my sleep cycles, and I have bouts of insomnia where I canNOT stay in bed for any length of time.

Now, the more unpleasant aspect: I really think that The Boy has some pretty disturbing nightmares. I'm not entirely sure what is giving me that impression. I have a pretty good read on The Boy's physical and facial cues; probably, a better read on him than my wife does, at least for the moment. I recognize what's going on in that impy li'l brain of his, and everything about his body language screams nightmare to me. His "talking" in his sleep, the type of violent motion while he sleeps (kicking, flailing, etc., is all common to toddlers; I think this is different), and his demeanor upon waking all are red flags to me. The way he gets out of bed, screaming and crying, and sprints into the kitchen, which is his comfort room... it's weird. I know that normal toddlers don't like being in bed, for the most part, but his reaction is really quite off.

I wouldn't blame him if he had nightmares. Here's a kid that had a tumor growing in his belly for an unspecified length of time; it was starting to bother him when Daddy took him to a doctor, then for a gooey ultrasound (which was kind of fun). Then, Mommy and Daddy went back to the doctors office, and they started crying while talking to the doctor. That night, someone came and stuck him a WHOLE bunch of times with a needle and wouldn't stop even when he was screaming and crying... when they finally stopped sticking him, they took his thumb away and wouldn't let him suck it, and they made him sleep in a big, scary, metal crib while Mommy and Daddy spent most of the night on an air mattress, trying to help that boy sleep. Then, they sliced him open, ripped out 10% of his body mass, and started shooting nasty toxic chemicals into him. About half of the people that that baby met were dressed in hospital scrubs and tried to poke him, jab him, touch him, look at him, or otherwise bug the crap out of him.

Oh - and, to make matters worse, the tumor regrew. The second surgery was worse than the first, because - even after several 2 hour car rides (which are lots of fun for 14 month old boys) - the nurses wouldn't take care of him and let him get sicker and wouldn't let him eat and wouldn't let him sleep with his mommy and his daddy. Then, they started injecting him with worse chemicals, but he got to spend most of the hospital nights with Grandma, which was good because Grandma is fun and nice. But, they keep bothering him all night when he's in the hospital, changing his diaper every two hours. Plus, they won't let him crawl on the floor, or walk in the hallway, or play with other little boys and girls, or go to the playroom and play with all the cool toys...

It hurt to try to walk for a really, really long time. His hands and his feet and his legs and his belly all hurt him a lot because of chemo.

Isn't that enough to get nightmares? My own, personal theory is that these nightmares are making sleep particularly unpleasant for him. Because he remembers reliving those experiences when he sleeps, he doesn't want to go to bed at night.

I'm re-reading the Ferber sleep book. He's about more than the "cry it out" method that many advocate. I'm hoping to find some ideas that will allow us to compensate for his personal issues, because a well-rested baby is a happy baby - and a happier Musical Daddy.

What do you think? Any bedtime ideas?

Bachelorhood, part 16.

This morning, I got dropped off at the medical center at 7:45AM. I had a cyst removed today - the second minor surgery of the week, as I had a mole removed on Monday morning. The wonderful thing about having missed 10 days of school from September through January is that I don't have the flexibility of taking time off from school to have medical procedures done. So, when I have a week off, I get to cram that crap in. Lucky me. The good part is that I get some decent pain meds, and I have an excuse to blow everything off for a day.

The Boy and The Wife have left for Harrisburg for Passover celebrations. I'm not too keen on this, because last year's Passover Seder was made remarkably unfriendly to The Boy and to me. While I don't necessarily hold grudges against people, I'm also cautious about putting myself in the same situations again and again. Fool me once, shame on you; fool me twice, shame on me. With luck, things will go smoother. I'm not optimistic.

Anyway, I'm stuck in bed today. I'm going to go for a walk, down to CVS to get my medication and down to the comic book store. It's a nice day for a walk, even if it's a bit chilly. After that, I'm going to come home and pass out for a couple of hours, then get up and do schoolwork until Lost starts.

Enough about me. The Boy has been, well, a toddler, lately. This morning was a perfect example: he woke up REALLY grumpy and didn't get much better until well after breakfast. He hated everything we put in front of him, even though he ate most of it. He didn't want to play with us, he didn't want to play without us.

I think he's having nightmares. I really do. More on that later.

Sunday, April 5, 2009


"The Boy, are you poo-ing?"

Serious look back at me with a slow shake of his head. "Nooooooo..."

Guess what was in his diaper?

Funny little man. There is nothing I love more than being with you as you grow up.

Lazy Sunday afternoon (Hooray!)

The Wife and I sang in the Palm Sunday mass today at church. It went well, even though the tenors seemed to be singing something other than the anthem today. Oh, well. At least it wasn't my fault. We got back home at 12:50, and The Boy was asleep. I joined him, and we slept until a little before 3 o'clock.

At that point, we woke up & changed a poopy diaper. The Wife had left for an orchestra rehearsal at 2:30, so it was just us guys. I said to The Boy, "Do you want to go outside?" He was halfway down the front stairs before I finished the sentence. I chose to interpret that as a yes.

We went outside and did the usual chalk thing for a little while. He wasn't so much into that, so I assembled the big red wagon that our benefactors from Christmas bought for us. (How amazing is that - that people would actually buy Christmas presents for a boy that they never had - or would - meet? It blows my mind. Particularly considering that the wagon is, like, a $75 item!) The Boy helped out - bringing me the hammer and the screwdriver when I asked, and giving me some of the pieces that he could recognize. It was very cute.

When the wagon was assembled (it took about 10 minutes), we went for a little test-drive down to the neighbor's driveway and back. The Boy was a little nervous at first, but quickly broke into a HUGE smile and bounced a bit in his seat. (The wagon has little seatbelts, too, which is awesome.) I took him out of the wagon in the garage, and he climbed right back in.

So, I loaded him up in the wagon with a hat and a piece of chalk (plastic is okay to draw on), and off we went! We walked about a quarter-mile down the block to the local Quickchek and went inside. I got myself some iced coffee. When I turned around, The Boy was carrying a big thing of Pringles to me. He and I negotiated a bit and compromised on the smaller "Grab 'n' Go" sized Pringles in the flavor that he chose. The Boy handed it to the cashier himself (generating many smiles from onlookers), and we got back into the wagon. I opened the Pringles, and on the way home ate about half. The Boy ate most of the rest and sprinkled chips liberally on the floor of the wagon.

He asked for some of my iced coffee on the way home. I figured, "Well, he doesn't really like regular coffee, I'll give him a sip and he'll not ask again." More fool, I. He loved it. I drank quickly so I didn't feel obligated to share, but I did give him two more sips. (Don't kill me, my lovely wife...)

We walked back, The Boy riding happily in the wagon, pointing out various items in the landscape. We got back, went inside, and he is happily tearing up the downstairs as I blog. The most interesting thing is how much he enjoys picking up a set of drumsticks and banging the top of a box of letter-sized envelopes. Weird kid; definitely gets it from my wife.

Now, I'm going to change a poopy diaper.

Friday, April 3, 2009


Twitterfon, the iPod Touch's Twitter application, just completely bricked my iPod Touch - to the point where it needs to be formatted, restored, and returned from the latest backup, which - I believe - was done about two hours ago. Thank G-d for my obsessive updating and backing up of my toys. OCD is far under-rated, my friends.

Goodbye to the afternoon nap with The Boy that I have been in love with for, oh, the past 19 months. He's completely over the afternoon nap thing, and we have begun regretting the few times in the past couple of weeks that he's taken one. He naps in the late morning with my wife, sometimes in the early afternoon, depending on when they eat lunch. That's it. We knew that it was only a matter of time before he outgrew the need for the second nap ( least until he hits his teenage years, when those multiple naptimes will return), but we were fooled by the delay in that growth caused by the chemotherapy-induced fatigue.


I really looked forward to that, every day - come home and nap for an hour. The good thing is that The Boy still looks forward to our resting time; he just uses that time to watch one of the Classical Baby movies or to explore our bedroom and try to break stuff. Most days, I've gotten a little five-minute catnap during our resting time. That's about it.

This week has been a long, long week. We had the excessive drama over the weekend, caused by a relatively major emotional crisis. That crisis - basically, questioning our sleeping habits, my school (Western Governors school, not work-school) schedule, our lack of recreation schedule - got blown entirely out of proportion because of the crushing amount of stress that we're carrying around. We're through it, more or less. The issues that we wrestled with last weekend are resolved: my school schedule has been hammered out to both of our satisfaction, aided by a modification to my program from my adviser. It's not going to be easy, but it can be done in a relatively time-efficient way. I won't be finished this term, but I should finish up next term. I hope.

So, after a weekend that included no rest at all, I had a great Monday - great teaching day, great schoolwork at night, everything. Tuesday was a LONG day, with a great barbershop rehearsal at night. Wednesday was another long day: honors band rehearsal after school, which was a LOT of fun but exhausting, and a long night with The Boy afterwards. Thursday was even longer - got home from school in time to find out that Uncle P had a work emergency (dueling water main breaks) that caused him to cancel his babysitting with us with roughly 90 minutes notice before we were leaving. My father stepped in, Thank G-d, allowing us both to get to rehearsal - which ran over by a half hour, so we didn't get home until after 11. Today was a long day - Fine Arts Day at school, which meant that I had no prep or lunch periods today. Yuck. I did eat and rest, but I did it at the expense of helping out. I didn't know what I was doing this year, so it wasn't a huge deal.

Long week. REALLY long week. Good week, don't get me wrong; but a long one. The Boy had a great week, also: while he needed blood and platelets on Tuesday, he only needed platelets on Thursday with no return visit on Friday. That's a good thing. He's also becoming a lot more responsive and engaged in the world: today, at dinner time, he pointed at the couscous and said, "More!" We said, "Say please!" He responded, "Peeeeeezzzz!" It was very cute. The third time he asked for more (The Boy loves his couscous), he said "Peeeezzzzz!" without being prompted.

He also walked up to the refrigerator and started pulling at the door, earlier in the day. When I came over to help, he said, "avocado!" He ate an entire avocado today. Man, I'll bet guacamole might help get some medicine down.

Speaking of, we're done with the bactrum. He just refuses to take it, and when we try, we're wrestling with a writhing, screaming, miserable baby. He literally makes himself sick: if he swallows any, he cries until he vomits it up. He also spent a solid two hours coughing after the two times that The Wife tried to give him his medicine. We're not TOO concerned, considering that the bactrum is prophylactic; there's an IV antibiotic that he can get, once a month, that does the same thing. It's not as effective, but we're willing to deal with it. Bottom line, the effort is not worth the reward. It makes everyone really, really unhappy to try to get The Boy to take that medicine.

Thank G-d for The Boy's medicine port. I cannot imagine what medicine was like before they had those access ports. I'll bet it was a lot more unhappy than it was.

Anyway. It's after midnight, and I'm exhausted. The iPod is restoring from the backup, so no harm done. I just need to remember NOT to hit that button in the Twitterfon application.