Busy planning...

Dear Nicky,

You did pretty well at Stones this morning: okay in PT and very good in Speech and then very good in the sensory class. You're making progress in feeding yourself with a utensil at long last. After I dropped you off back home, I was quite busy running about and planning Mom's birthday and buying her some presents. I want to give her ten days' worth of celebrating, with big gifts and little gifts, all surprises, so I was gone most of the day. You had speech alone with Ellen, but your nanny Angela said you sounded like you were having fun. We think you're doing very well all around the past couple days.

Love,
Dad

Four-thirty bedtime...

Dear Nicky,

You ate well and worked well with your therapist today. We all even took a little nap before she came over. Then your nanny came over while I went out, then when I got back, she took you guys for a walk, where you went to sleep. This was around 4:30, so now you're sleeping in your clothes and are unfed and unchanged since this afternoon. Great.

Love,
Dad

The old Nicky...

Dear Nicky,

Today was a very nice day, both at Stones and here at home. You were in pretty much a good mood all day, eating well and happily cooperating in your therapies. It was so nice to see.

Love,
Dad

Point Pleasant for Memorial Day...

Dear Nicky,

Today we all went down to Pt. Pleasant for a few hours. Last time we were there it was a heatwave in January. This time it was for Memorial Day just to have some fun. We got some pizza, which you ate lots of beautifully, then we went to a little aquarium they have there. It was pretty neat, but not spectacular. This is the Jersey shore after all. But you and your sister loved looking at the fish. Soon we'll have to try the Bronx zoo and the Brooklyn aquarium. It was really crowded and it was fun to peoplewatch. The people we saw were quite interesting, to say the least. We all had a really nice time.

Love,
Dad

More good eating...

Dear Nicky,

This afternoon you ate quite a few chicken nuggets all by yourself without protest. Mom then took you guys out to Granny's where you hung out for a while and had more to eat. When you got home, I gave you aa bowl of yogurt and a spoon and basically ignored you. You made quite a mess, but you happily worked your spoon and ate some of the yogurt without pitching a fit. It was nice to see, but a pain to clean up!

Love,
Dad

Barbecue...

Dear Nicky,

We were invited to a barbecue at some neighbors' house down the street. We were running late but they still weren't ready when we showed up. I had an okay time. It was hot and muggy and they burned a citronella candle to cover up the smell of some other people's mulch, which I wish they hadn't; it gave me a headache. The food was okay too, but I was glad to leave. I just wasn't feeling very social. They and the other couple there each had a kid a couple years older than you. These kids were really annoying crybabies and I was surprised how hard their fathers yelled at them. Meanwhile, June slobbered her way through some ice cream while you crawled all over the place and tried to eat sidewalk chalk. You guys were a mess, and we put you into the tub as soon as we got home.

Love,
Dad

Nice heart news...

Dear Nicky,

So today after an uneventful meeting to do your semi-annual IAP, we went up to Paramus to go see our old friend Doctor Solo so he could take a look at your heart. He's very pleased. You've still got a murmur, but it's not anything major, but your numbers all look good, and that shunt, which was just a tiny pinhole in the wall of your heart, has pretty much closed up, and that's great. On the way home, we got White Castle drive-thru. Believe me the irony is not lost on me. When we got home, I had to crash for a little while. Then later I had to go to Toys R Us and replace a basketball hoop set I got the other day. You're sleeping nicely lately, in light PJ's and a cool room. Go figure.

Love,
Dad

Playtime...

Dear Nicky,

This afternoon you went to a big neighborhood playdate. There were lots of kids there. You had fun and some nice bigger kids played with you. You've eaten slightly better the past couple days. Tomorrow we meet with your case worker and also go see Dr. Solo about your heart (it's just a routine checkup). Busy, busy, busy all the time.

Love,
Dad

Grilled cheese...

Dear Nicky,

Your mood was okay for the most part today, but still a far cry from the old days when you were totally sunny and eager to eat. For lunch I made you a grilled cheese sandwich, which your nanny gave you, and which you seemed to love. Well, at least you ate something today. Oh, your OT said she might have to find us a replacement because her boss is switching her schedule or something. I'll bet she sticks with us, though, because she's crazy about you, and because our guest bathroom is way cleaner than most of the houses she goes to. Good to know, right?

Love,
Dad

More like your old self...

Dear Nicky,

Hi, pal. Sorry I haven't been able to say much in the last few posts. All I do is say how tired I am. It's true, but I wish I could have more energy at the end of the day. Anyway, yesterday was a very trying day because you barely ate a thing, which drives your poor old dad crazy with worry. Even though everybody says at this stage kids hardly need any food, it fills me with fear and frustration when you won't eat. But today your nanny got you to eat, and you did well at Stones and with your PT Rob. Have I told you his name was Rob? These therapists have been coming to our house for almost a year and I've never told you their names! Rob for PT, Ellen for speech, and Lynn for OT. All nice folks. Anyway, maybe that brushing is actually having some effect on you and helping you deal with whatever it is that two-year-olds have to deal with.

Love,
Dad

No eat...

Dear Nicky,

Today you barely ate a thing. But you did whine and fuss and cry a lot. I'm wiped out.

Love,
Dad

Dad's getting old...

Dear Nicky,

I must be getting old. I'm so tired all the time. I can't think straight sometimes. I'll write more tomorrow.

Love,
Dad

Bad haircut...

Dear Nicky,

Mom took you for a haircut. Apparently you weren't in the mood and had a meltdown and the barber could not do his best work. Mom was upset, but it's not really bad. It's just a little uneven in the front. I can probably fix it tomorrow. Don't I always fix things?

Love,
Dad

Too much...

Dear Nicky,

I just can't keep my eyes open.

Love,
Dad

Does brushing work...?

Dear Nicky,

You seemed a little calmer today. Maybe it's the brushing.

Love,
Dad

Fast fade...

Dear Nicky,

Your behavior was better today so maybe that brushing really works. Now I must sleep.

Love,
Dad

Back to brushing...

Dear Nicky,

Because you've been so uncooperative with your therapies lately, they've suggested we start brushing you again and doing joint compressions. This bugs me, quite honestly, because it really makes me feel like we're losing ground and going backwards instead of forwards. Sorry, not trying to make you feel bad. It's just how I feel.

Love,
Dad

Some more catchup...

Dear Nicky,

So I've been trying to post too late in the day, when I'm so tired I can't think straight, and I've really been tired the past few days. Anyway, here's some brief words about the past couple days. Not anything earth-shattering, nothing major going on, but we're still documenting the daily routine, right?

On Friday, your nanny came over to babysit while Mom and I went into Hoboken to attend a fundraiser for trisomy 21 research. They had a doctor from Stanford University there, who delivered a very interesting presentation. The problem was the space was crowded and hot, and I was sweaty and claustrophobic. Coming in we had to battle traffic the likes of which I haven't seen in a while. And to set the note for the evening your nanny was late. She's always late, which is starting to annoy me.

Saturday was an ordinary day. Mom took you guys to the mall while I worked on the lawn. It took me a couple days to core aerate the lawn, which is supposed to get oxygen down to the grass roots. The lawns out here need all the help the can get because the soil is of very poor quality; it's mostly clay.

Sunday was Mother's Day, which is a holiday made up by the greeting card companies but is still a must to celebrate. I got Mom some stuff and signed your and Junie's names. Later we went to Granny's. Neither you nor your sister napped much, consequently you guys were rather fussy, so we had to leave Granny's early. My sincere thanks for that.

Today, you were not into your PT work, unfortunately. But you ate reasonably well and were in a pretty good mood all day, as opposed to your sister, who ate voraciously all day long and was still in a very fussy mood. You guys wipe me out.

Love,
Dad

Once again...

Dear Nicky,

Once again I must apologize for being lame and being too tired to write anything. Hopefully I can catch you up nicely tomorrow sometime.

Love,
Dad

Sensible...

Dear Nicky,

Today was a pretty good day, and I'm gonna keep it that way by going to bed right now.

Love,
Dad

Fundraiser...

Dear Nicky,

We went to a fundraiser tonight that I'll tell you about tomorrow.

Love,
Dad

Pill...

Dear Nicky,

You were a total pill today with your therapist, completely uncooperative. Today's session was a total waste of time. This worries Mom and me, because we don't know if it's typically monstrous two-year-old behavior, or something pertaining to T21. Frankly, most of the time, all we do is live in fear. I know you don't mean this kind of behavior, but it's still quite a challenge.

Love,
Dad

Catchup post...

Dear Nicky,

So last night I guess the day caught up with me and I was too tired to think of anything. Tuesday was an evaluation day at Stones. You did okay in PT, somewhat below your usual in OT (which was totally behavioral), and quite well in Speech. Later that day your PT came over and worked you out outside with a hula hoop. You did fairly well, all things considered.

Today with your OT you were totally uncooperative. You had no interest in anything, and your mood was pretty foul. You did do well for your nanny, though not for your poor old daddy.

Love,
Dad

Evaluation Day, May 2007...

Dear Nicky,

I'll give you the details tomorrow, okay?

Love,
Dad

Long day...

Dear Nicky,

Mondays are the longest day of the week. You just don't seem to be inclined to walk. Physically everyone thinks you can do it. Whenever anyone tries to stand you up, you curl your legs up like a snail. Please walk for us, son. Please walk for yourself.

Love,
Dad

Cries in the night...

Dear Nicky,

You usually do some kind of crying every night after we put you to bed, usually between nine to eleven, sometimes midnight. It kills me. You seem healthy. Is it illness? Reflux? Night terrors? Apnea? If I could bear your burden I would.

Love,
Dad

Yardwork...

Dear Nicky,

This morning I started early on the lawn. I mowed it, then raked out all this old thatch from it. There was a ton of it. Then I ran the lawnmower over it again to suck up any loose thatch I didn't rake up. Then I sprayed weedkiller and crabgrass killer on it. This doesn't sound like much, but it took a long time. Then I had some food, took a shower, tried to get those stickers off the upstairs doors, then went to Home Depot, got some stuff, came back, assembled a table, then you guys came back from a playdate, which Mom said you guys really enjoyed. I think my eyes are sunburned.

Love,
Dad

Sleep deprived...

Dear Nicky,

You've been sleeping pretty good, but I have not. Mom took you to Granny's for a while this afternoon. I did stuff around the house. I'm always so tired, sorry.

Love,
Dad

Tantrums...

Dear Nicky,

You've been having a lot of tantrums lately. Today at Stones with Lynn, then Alexis, then with Ellen. What's with you, kid? Is being two so terrible?

Love,
Dad

Chew the fat...

Dear Nicky,

Sorry I haven't been very informative the last several posts. At the end of the day lately, I'm so tired I can't really think or remember much to say. Did I mention the other day at Stones you had a substitute PT who you didn't care for, thereby not accomplishing much during PT? But you more than made up for it in OT, and I was told by Maria, who just adores you, that you did well in the sensory input part of the show. Anyway, today your nanny was here and got you to eat chicken and potatoes. With me you're not eating much these days. I think it's your desire to do it yourself, but you still lack the skills, I'm afraid. I try to show you, but it's still quite a challenge. On a brighter note, I think walking is right around the corner. I saw you take a few "bear" type steps earlier today, which I hope will lead to assuming an upright and forward moving stance soon. Day by day, your progress seems slow but steady, but looking over the last six months, you've made tremendous gains physically and verbally. Of course cognitively you've been on the ball since day one.

Love,
Dad

Today was Tuesday...

Dear Nicky,

So, back to Stones today. You had a substitute PT and you weren't very happy about it, so PT was kind of a wash. But you did wonderfully in OT, and also in the third half hour which is observation/sensory input. You fell asleep in the car immediately. I came back from errands to find you eating a big lunch. Your EI PT came over and you did okay. The consensus seems to be you could do anything you wanted physically, if you wanted, which you don't seem to want. At the end of the day you were really tired.

Love,
Dad