Happy New Year...!

Dear Nicky,

And so, tonight marks your first New Year. We make a production of saying goodbye to 2005 and hello to 2006, even though the difference between one day and the next is nonexistent and completely arbitrary, based on some ancient Roman calendar. 2005 was a tough year for us, my boy. Your joyous and wonderful arrival was frankly marred by the shocking and terrifying news of your Trisomy 21. Your extra chromosome never for a moment affected the love Mom and I feel for you, not the slightest, tiniest bit. We only feel the pain that parents feel when their kids have any obstacle put in their way, and since we won't know the degree of your obstacle for a long time, it has worn heavy in our hearts in this year 2005. As I'm sure you can understand, we're very eager to say goodbye to 2005, and also very eager to start 2006 with the bravest, smartest, sweetest little kid around, a little kid who slowly and in small but very real ways soothes the pain in our hearts just by being himself.

Love,
Dad

Better battery...

Dear Nicky,

Hi, pal. Sorry about yesterday but my battery ran out and I couldn't post much, which is okay since not much went on. We went to the mall in the morning because we were on the run from the maids. We got some stuff, and some people went crazy over you, as usual, but I was hungry and couldn't wait to eat. So when the restaurants opened at 11:30 we ran in. I had a pannini. It was really good, despite the overly moist tomatoes and the wrong type of bread they used. Mom had the spaghetti bolognese, which she really enjoys. You had some formula. Then we came home, and later Kristine your OT came over and worked on you. This afternoon, since I'm not feeling well at all, Mom thought it would be a good idea if you and she went out to stay the night with Granny, which would hopefully keep you from getting my cold (it's probably too late), and will give me a chance to sleep late in the morning. It is the first time in our lives that you and I are apart overnight, and while I definitely welcome the opportunity to get some extra sleep, it feels as if I'm missing a limb. I'm addicted to my little family.

Love,
Dad

No power in the ol' battery...

Dear Nicky,

Sorry, pal, but it's a brief post tonight. My laptop is almost out of juice. I'll write more tomorrow.

Love,
Dad

Mellow day...

Dear Nicky,

Today Shelby came over and worked on you. She's in the middle of changing companies so there's probably some paperwork that's going to need to be done to deal with the ridiculous bureaucracy that is Early Intervention. On the plus side, she might be doing your developmental intervention, which is a good thing if she's good at it. We'll see. Mom was a little sad today because she felt snubbed by Aunt Erin, who was going to go into the city while Granny babysat your two cousins, but Granny was sick, so the kids went with Aunt Erin, who couldn't find parking and didn't have a good time. This made Mom happy. This is called schadenfreud, and it's a real part of the world. I got a new cell phone, with a much better integrated camera, and I also went and got a massage for the first time in a year or two. While I was gone, Mom took you out to some places and apparently everyone who saw you thought you were insanely cute. I think that's about right.

Love,
Dad

Lil' troublemaker...

Dear Nicky,

This morning you woke up around one or so and were pretty hungry. See, you fell asleep yesterday without getting your last bottle of the day, so that's what happens. It's actually a sign of a strong, healthy baby who wakes up in the middle of the night and demands to be fed. So I fed you, and by the time were done it was close to two in the morning. Mom let me sleep late this morning, till about seven or so. But apparently you were fussing. I got up to find you fussing away on Mom's lap, refusing to go to sleep. I picked you up and soothed you to sleep, and you napped for about 30 or 40 minutes. Today we made sure you got plenty of food in your little gut, and we topped you off with a bottle around 6:30. You've been sleeping soundly so far. Today Mom also started looking for babysitters, for the occasional break for us. Looks like the free ride is coming to an end, eh pal? (Just kidding; you are the dearest little boy to us!)

Love,
Dad

Another wonder...

Dear Nicky,

You know how I lift and toss you over my head? Well, I'm starting to think that's having a nice benefit of working out this part of my chest and shoulders that really needs it. You make me feel good not just emotionally but physically, as well. How do you like that? Today, Mom and I were pretty tired from the day before--the long drive, the being at someone else's home, etc. We managed to put away all your toys and straighten up the place and considered it a large accomplishment. We introduced mixed cereal at last, and you had no adverse reaction to the wheat, which hopefully indicates that you are not a candidate for celiac disease, an allergy to glutens. So that's nice. Also, you're rolling a lot and seem stronger all the time, with this new swimming/flailing/kicking thing, so that's great, too!

Love,
Dad

Your first Christmas...

Dear Nicky,

This morning was your first-ever Christmas morning. Mom and I got a few presents for each other, but you made out like a bandit. It was great to see you reaching for boxes and grabbing at the wrapping to rip it off. It was most impressive. Naturally, with all the presents you received, you enjoyed the boxes and tissue paper the most. A little later, we got in the car and drove out to Aunt Erin's. Traffic was light and the roads were good so we made it in about an hour. I drove fast but carefully. Once there there was some more presents exchanged and much adoration heaped on you. You took a couple bottles out there and a couple solids and a couple naps. We ate a really nice meal around three, then left around 4:30 or so. It was pouring rain and dark when we left, and the big vastness out there in Pennsylvania doesn't have a lot of lights on the roads, but we did fine coming back, even though we had to drop Granny off in Summit to get her car, which was driven out there by Uncle Matt. Everything's a production out there, and you and I are always the most reasonable and flexible once (a sign of a superior intellect!).

Love,
Dad

Twas the night before Christmas...

Dear Nicky,

It's Christmas Eve and you're sleeping soundly. Tomorrow is of course Christmas Day, and you'll be opening a bunch of presents, then we'll be taking a long drive out to Pennsylvania to visit Aunt Erin. We're going to put your red Santa hat on you, and people are going to go crazy over how cute you look. What's also good about going out to Aunt Erin's is that despite the long ride, she's a good cook and there's going to be lots of stuff there to eat, as opposed to Granny's. Unfortunately for you, I'm talking about grownup food, but we'll bring plenty of food for you, too, pal. At this stage in your development, this is all somewhat incomprehensible to you, I think. But I also think that you will definitely be able to understand the driving principal, the underlying theme of the holiday season, at least as it pertains to you, and that is...you are beloved.

Love,
Dad

Yesterday's Christmas party...

Dear Nicky,

Sorry about yesterday's note. I was just too tired to keep my eyes open. Anyway, yesterday was the Stepping Stones Christmas party. After our regular therapy sessions of PT and OT, it was time to gather in the gym and meet Santa. You got a gift and I took your picture. It was a little hectic, I think. There were lots of kids and their parents around, and it was little hard to think straight, especially since I didn't have any breakfast that morning. Also, you usually eat and go to sleep right around that time. It was a very nice thing to have happen any way you look at it, and I think you'll appreciate it even more when you're older. Braden's Mom got you a present, too. I forgot to mention that Granny was there. She certainly adds a nervous, distracting element to the mix. As for today, there's not much to report. Mom took you out earlier into the somewhat mild afternoon, while I went into the city and got a few secret little presents for Mom, your aunt, and your cousins. You? You've already get piles of stuff waiting for you, my friend.

Love,
Dad

Party info to come...

Dear Nicky,

I'll tell you about the Stepping Stones christnas party tomorrow. I'm so tired now.

Love,
Ded

A small triumph...

Dear Nicky,

I finally got you into your snowsuit this afternoon. You see, up till now, you really, really resisted and I would stop because I didn't want to force it. But today, you only complained a little, so in you went at last! It was the high point of my day! Shelby came over this morning, and we gave her a Christmas card. She called from the road to thank us. Anyway, when we got your suit on, we went to the post office to mail three more cards, to Dr. Solo, Kathleen our service coordinator, and to our old friend, Desiree, who helped us an awful lot in the very scary early days. You hadn't been out in a few days because it's been so cold, but with your new suit finally on, you were quite toasty warm. Hurray!

Love,
Dad

An excellent day for you...

Dear Nicky,

This morning Mom joined us at Stepping Stones. For some reason there was a major delay on Route 280, which almost made us late, even though we left at our usual time. Your PT today was Ruth, assisted by Laura the intern. You did very well and were quite happy the entire time. What pleased me was the arm strength you showed when they balanced your lower half on the therapy ball; you managed full arm extension, supporting your entire upper body, for ten seconds--twice. We had Jessica the speech therapist all to ourselves, and she worked with you a little and then you wanted to eat so we fed you. Afterward, we went into the gym where we usually go to finish your bottle. There, people admired your eyes and hair, while somebody else said you look just like me. I knew you were good-looking, but I guess I never realized just how good looking you are. (That's a joke.) We drove back to Hoboken, dropped Mom off at the train station, then went to Target and got some stuff. Later, when we got home, your new PT Tim came by, and he worked you over quite thoroughly. You fell right asleep after he left. Mom came home and sent out a bunch of Christmas cards. And you went to sleep for the night.

Love,
Dad

Sweet little guy...

Dear Nicky,

You're a great baby for a number of reasons, not the least of which is your patience and willingness to work hard. This morning, for example, we (meaning you) were doing our exercises. You went for about an hour, doing situps, kneeling, free sitting, rolling, and moving into sitting. You did all this goodnaturedly till you finally got tired and we stopped. Then you took a little catnap, and when you woke I gave you some lunch. This afternoon, I wanted to take you for a walk, but it was very cold outside. I tried to put you in your blue down snowsuit, but you fussed so much that I didn't want to put you through it, so I'm afraid I quit, and we didn't go out. Speaking of food, I think you like chicken better than turkey. For dinner you had carrots, chicken, and pears, plus five ounces of formula. I added them all up and it came out to almost 300 calories. Wow! And just a couple hours later, you wanted some more formula, which I gave you and then you promptly fell asleep. Sweet dreams, little guy!

Love,
Dad

Hungry, buddy...?

Dear Nicky,

For some reason Granny came over today out of the blue to babysit. You and I were working out on the floor, doing some kneeling type exercises when she arrived. She was most impressed with the setup I had for you. Then Mom rushed me out so we could go see the first movie in the Chronicles of Narnia series. It was okay, but not great. I just didn't find it that stirring. Plus I was hungry. But Mom got me a burger before the show started. Do you believe they sell burgers in movie theaters now? Anyway, I think you might have been a little hungry today, since you didn't get your cereal. Sorry about that, pal. Granny means well, I think, but unless you spell it out for her what your plans are, well, then, I guess you're out of luck. You were sleeping soundly when we got home. Later I gave you some formula, which you pounded in your sleep. Unfortunately, you woke up when I changed your diaper and took a while to go back to sleep. Anyway, we'll eat well tomorrow, okay? Weather permitting we'll go for a walk, or at least go to Target or something.

Love,
Dad

Saturday, Dec. 18...

Dear Nicky,

Not much to report today. You were your usual sunny self. You did take a nice long nap during the middle of the day. You slept so long, Mom and I joked about how it worried us. The joke is that we worry that you're not getting enough sleep, or that you're sleeping too much, etc. I'd like to be a better sleeper myself. Oh, the cable guy came to fix the cable. For some reason yesterday it just went out. He came in and had to access the wall plate in the hall closet. He fixed it, then the cable modem went out. Another try and he fixed them all, so we're all okay now. TV is a loathsome creation that we all miss terribly when we don't have access to it. Tomorrow, Granny is coming over. I don't know what we'll do with ourselves. I hope she doesn't bring any more of her so-called "food."

Love,
Dad

Crawling soon...?

Dear Nicky,

Kristine your OT came over today because she couldn't make it yesterday. As usual, you were a very tolerant and capable young fellow. That's not news, of course, but it makes me glad to say it anyway. The thing that's worth mentioning is that before she came over, we were sitting on the chair just having some laughs. I was tickling you and, in addition to laughing like a big kid with clear, distinctive "ha ha's," you also started to make crawling movements with your legs, pulling your knees up under your body and sticking your butt up into the air. To me that seems like getting ready to crawl. You also rolled over a number of times in a row, but I didn't actually witness it; I only saw the end result when you were three feet from where you started from. You're just great, pal!

Love,
Dad

Hey shunt boy...!

Dear Nicky,

This morning just before we were supposed to leave to go see Doctor Solo, my stomach became upset and I spent ten minutes in the bathroom emptying my guts. I think it was a weird combination of foods that I ate for breakfast. Anyway, Solo's evaluation was positive for the most part. A tiny hole still remains in the bottom half of your heart. Personally, I think it will close up like the other one did, but in the meantime it messes up the pressure readings they want to get with the echocardiogram. This little hole creates a pressure jet from one chamber to the other and is called a "shunt." I don't think it'll be a problem for you. You took a good-length nap after lunch this afternoon. Then Granny came over and I went out, then I came back and she left. Your end of the day solids feeding was so-so, probably due to that nasty turkey I'm psuhing on you. Sorry, pal.

Love,
Dad

A quiet Wednesday...

Dear Nicky,

Not much to report today. Shelby came over and worked on you, but you weren't your normal enthusiastic self. It was too cold to go out today. The most exciting thing all day long was when I left you in your crib to go downstairs and get the mail. Tomorrow we go see Dr. Solo. I hope for some great news. I wonder how impressed with you he'll be.

Love,
Dad

What we did today...

Dear Nicky,

I don't think your PT Pat at Stepping Stones likes me too much. I think she thinks I'm overprotective, but maybe I'm just being too sensitive. Everybody loves you, though. One of the moms there thinks you're really cute, as does everybody who works with you. I fed you some pears during speech therapy. You pounded them, what else? Afterward, we gassed up the car and went to Target. You were asleep for part of the time there, but then you woke up. You were entirely cooperative and pleasant and sunny and patient. We got some Christmas stuff and some baby food. As far as Christmas stuff goes, we got a little tree (prelit), some ornaments, and some wrapping paper. As for food, we got a bunch of different stuff and lots of it. Your new PT came over today. He's a nice guy who seems enthusiastic and knowledgeable. You two got along very well, and he seemed happy to be working with us. I'm happy we got a new PT after, what, over a month without one? He worked you out quite well. Afterward you fell right asleep. You just conked right out till Mom came home. Then you got some more formula, a couple solids, and another helping of turkey meat, which you first tried last night and couldn't much stomach. Same story tonight, but a little more tolerance on your part. One day at a time, pal.

Love,
Dad

Stuck on you...

Dear Nicky,

Wow, you are growing! We went for your third Synagis shot, and prior to shooting you up, they check your wait. You weigh 19 pounds, five ounces--well, just a hair shy of that, but you may have gained it already the way you eat. Mom and I think this is just wonderful, and it's a very good indicator for overall health. Today I gave you some turkey for the first time. You, good sport that you are, ate about half. You're a better man than I. I thought it looked pretty gross, but I guess that's how babies' food intake evolves. Tomorrow is supposed to bring a major cold wave, so I'll bundle you when we go to Stepping Stones. But I won't bundle you too much, because we're only going two steps in each direction, practically. Also, I think on the way home we'll go to Target and get a little Christmas tree. Some of them come prelit!

Love,
Dad

Weird Blogger...

Dear Nicky,

As you may or may not know, this open journal to you is online. It's on a free website known as Blogger. Sometimes it works right, sometimes it doesn't. Not much interesting stuff to report today. It was cold and dreary outside. You've been kind of snorty all day, due to, we think, the dry air. You awoke very early and quite hungry. I fed you, then Mom let me get some more sleep, which was quite restorative. Your sitting skills continue to improve, and your charm continues to increase. Tomorrow we go to the doc's for another Synagis shot, which you probably don't even need, but better safe than sorry. We're just going to get these shots for you this season, and we don't think you'll need to continue with them next year. So far you've been pretty healthy.

Love,
Dad

Take two...

Dear Nicky,

Okay, so here's what happened the past couple of days, which I couldn't really provide details for last night because I was simply too tired. Thursday was a Stepping Stones day. You impressed the PTs with your sitting abilities. You got really hungry about twenty minutes into it, so we knocked off PT early to have snootful of formula. Our pal Braden was out, so when we went to OT, you had Maria all to yourself. She's just nuts about you. She thinks you're doing very well, and she also thinks you're gorgeous. Then we came home and hung out for a while. You took a nice long nap on me. And then Kristine, your other OT, came over and you wowed her as well. Friday was a very snowy day and we didn't do much. Mom had to drive out to Livingston because she needed to see a doctor about some tests. The roads were slippery, but she made it fine. For dinner Friday night we had some overpriced sushi from this joint called Robongi. I thought the sushi was poorly rolled; it was loose and mushy. This morning you took a really long power nap on me, which I of course adored. We hung out while Mom worked on a manuscript, then I went to get a bunch of stuff at Target. You began fussing shortly after I got home, so we fed you again and you went out like a light, and you're still asleep now, even though you're two solids and a whole bottle short. I'm sorely tempted to try to get some more food in you, but last time I woke my sleeping baby he didn't go back to sleep for a long time. You've been out almost six hours now. I hope you go all night, because Dad is tired too!

Love,
Dad

Snowy day...

Dear Nicky,

It was snowing like mad this morning. I'll tell you more later.

Love,
Dad

Nodding again...

Dear Nicky,

Sorry, pal; it's one of those times where I just have to hurry up and say I love you because I'm falling asleep.

Love
Dad

Nothing special...

Dear Nicky,

This morning you fell asleep a moment before Shelby arrived. You stayed asleep the whole time she was here, and then woke up a few minutes after she left. But I worked you out pretty well, I think. You once again took a nice long midday nap, half in your crib and half on me. You napped really well, and when you woke up you were totally sunny, as opposed to when you're not satisfied with your nap duration and wake up screaming bloody blue murder. We haven't been outside in a couple days because it's just been too cold. We started a new book today: Low Life by Luc Sante. I've had it in my possession for years but have never read it. I was inspired to pick it up again after seeing Gangs of New York the other night. Tomorrow we go back to Stepping Stones, then maybe we'll go to Target and get a Christmas tree.

Love,
Dad

Another Tuesday...

Dear Nicky,

Not much happened today. We blew off Stepping Stones this morning because the overnight snowstorm messed up the roads. We stayed home instead, and had a number f laughs together. Your PT called and said he couldn't make it. You took a two-hour nap on me this afternoon. That's about it.

Love,
Dad

Let's get something off your chest...

Dear Nicky,

We saw Roselle at Columbia this morning. She's nice, but she's always busy and in a hurry. That whole cardiology place is always packed. Anyway, considering we have to drive all the way from Hoboken to Washington Heights in Manhattan, we made excellent time. We went there so Roselle could check out your sternum, which she says has healed fine and is structurally intact. It may take up to six more months for the sutures to completely dissolve. At present they've gotten sort of wrapped up in blood and tissue and have become like little nodes underneath and they feel hard and bumpy, but they should go away in time. Your chest is a bit pointer than it was before the surgery, but Roselle assures us it's purely cosmetic and is most likely a combination of your cartilage being stretched from when they pried your chest open, and your breathing pattern (seems you do a lot of thoracic breathing). We ran into Dr. Solo on the way out, who raved about how good you look and how you're developing a personality. You are dangerously charming.

Love,
Dad

Power deadline...

Dear Nicky,

I'm running low on battery power. Today it snowed outside, so we went nowhere. You ate especially well I feel, and you worked out very hard. I hate to admit but since the surgery I haven't been pushing you as much as I should be, but I think we're working our way back into things. Tomorrow we go see Roselle at Columbia, who will examine your sternum and tell us if there's one more theeing to worry about. See, I think your sternum is sticking out too far, but I real hope it's not. My poor kid. It breaks my heart and makes me feel so powerless when you have to deal with these problems like this. If it ain't one thing, it's another. Hopefully, she'll take one look and say there's nothing to worry about. But as you know from previous posts, Mom and I worry a lot about all sorts of things when it comes to you, but that's because we're crazy about you. Mom'll be home late tonight, and I think she'll want to sneak into your room and take a peek at your little sleeping angel self.

Love,
Dad

A lovely day...

Dear Nicky,

Well, it was just you and me all day today. We woke up nice and early, had a bottle, did some joint compressions, worked out really well, and you took a couple brief naps. In the afternoon I bundled you up real snug and took you out for a nice long walk. It was quite cold but I think you were toasty warm. The fresh, cold air knocked you out fast. It must've helped work up an appetite too. You took a bottle and two containers of sweet potatoes. Then you started fake-coughing and clearing your throat, which are signs that you want to go to sleep. Why you get so mad is beyond me. I'm not the one keeping you up! Anyway, the cold must've made you more tired, because you were done for the day and in the sack at six o'clock. After I put you to bed I straightened up a little and ordered some tasty Chinese food. Tomorrow Mom comes home.

Love,
Dad

Alone again...

Dear Nicky,

Mom went to Arizona for a sales conference, and it's just the two of us till Sunday night. She left early this morning. Apart from doing well on tummy time and the like, not much else went on today. We didn't go out today because it was too cold. This was another day where you didn't nap very much. I hope tomorrow will be better. The last time Mom went away, you were just about to turn four months, I think. And that was the weekend you rolled over for the first time. Maybe you'll do something else cool this weekend. No pressure, of course. I enjoy your company very much, and I hope you like having me around all the time. It's a pleasure to watch your noble and powerful struggles with inertia on the floor in your Gymini. Maybe tomorrow we'll go out if it's not too cold and I'm not too tired and if it doesn't take forever to get you into a warm outfit. We'll have fun no matter what.

Love,
Dad

And so goes another day...

Dear Nicky,

Today was Thursday, December first. It being a Thursday, we went out to Stepping Stones. Last night you were up late, thanks to me waking you for a feeding. I'm not doing that again. This morning you were up too early, and Mom worked you out too hard and you had nothing left for PT, though, to your credit, you were willing to try. Braden's mother once again commented on how long your fingers are. She's a nice lady. When we came home I had to go to the bathroom really bad; I'd been holding it all morning. Excuse me...I got to go run the dishwasher before I forget...Well, I'll try to remember. Anyway, you took a really nice long nap after lunch: almost an hour in bed, and an hour on me. It'd be nice if you slept on your own, I'll be honest, but man, it sure feels good having you snuggling up against me. You were so well rested later that you did very well with your OT when she came over. She likes you a lot, too. Everybody that's ever met you likes you. I can't say as I blame 'em.

Love,
Dad