Belated Easter

Peter and I are refreshed from our first big vacation away from James - Colorado was gorgeous and we had great weather for hiking and exploring outdoors. James stayed with Grandma and Grandpa in Delaware, and apparently he had a wonderful time. And got into no trouble, and went to sleep on time every day, and such things that he doesn't do for us at home :/ We are thrilled that he adapted so well to not having us around, which means his separation anxiety is fading. He loved having all the space to play in and the constant attention of multiple people around at all times.

For Easter, we placed eggs around the yard and he reluctantly found them. He wasn't too interested and had to be prompted, but he did enjoy opening the plastic eggs. Open/shut... that's more fun than candy for him right now.

Now that the weather is warmer, he's been going to the playground a lot and we've noticed a few things: 1) he's afraid to walk on cracks and 2) a slight incline is like a mountain to him. The playground we prefer has an inclined ramp, and he edges up that inch by inch with hands tightly clenched onto the railing, like he could fall off at any time. The swings are still a hit, but playing with other kids is still not something he's interested in.

Therapies are going well. PT and OT are doing great: working on balance in PT and finger isolation/fine motor skills in OT. ST is a bit slower; still no talking, and his silence sometimes a bit disquieting... but for the most part, it's not worrisome because he is progressing. He learned several hand signals and uses a picture exchange system (PECS) to communicate. He brings us the picture of what he wants and we give it. He finally has started to imitate gestures that I do with songs.

We have doctor visits in a few weeks, but we think that the high-calorie diet is working so we anticipate that this will be his last nutritionist consultation. Did we mention that as of last month he finally reached 20 pounds? At last!!

Easter Egg Hunt

Playground Outing

CHD Awareness & our toddler's heart

CHD Awareness week was February 7-14, and we took the photo of James showing his scar (below) as a part of the campaign to "Rock Your Scar". It's healing up nicely - so nicely it barely even shows in the picture! I also posted here a photo essay of our journey dealing with a CHD and encouraging continued awareness, research, and funding.

In more usual news, we followed up with the nutritionist recently and found that James has lost a bit of weight. He's still about 19.5 pounds, a fairly static weight for some months now, so we're moving to a new diet of a special high-calorie formula. He's making consistent improvement with handling solid food, but for the sake of calories, we can't move forward with weaning him from bottles... which is very frustrating. We'd love to reach the point where we can stop washing bottles and feed him normal meals alongside us.

Therapies are going well, and the other photo below shows his first rock climbing attempt! Here he could climb in an approved environment, as opposed to the furniture at home he gets into all sorts of trouble with. He's also got a new 2T winter coat - officially into toddler clothes - because despite his low weight, he is a normal-to-tall height.

Last but not least, some bigger updates: #1, we learned that James cannot fly until after surgery #3 unless he gets equipped with an oxygen tank... so basically, no flying. And #2, surgery 3 is on the calendar. This will be the Fontan, and is the second part of the Glenn-Fontan set of surgeries. It will complete what the Glenn started last year. We are looking at surgery in late spring 2015, shortly before his 3rd birthday.

a little glimpse of James having fun

Not all is therapy and work for James... he's also growing up as a pretty normal and happy kid with plenty of activity and playtime. Here's a short video of our boy enjoying his bouncy ball and cracking himself up:

Snow day and a trip to Manhattan

Happy New Year! We spent a great holiday visiting both sides of our family, and James loved wreaking havoc and making a racket in so many different homes. Also, all the toys he got - he loves those too. His playroom is growing ever bigger and eating into our kitchen, bit by bit.

Today was declared officially a snow day in NYC, and schools were closed so Peter had the day off. But not the opportunity to sleep in - James had 2 doctor appointments scheduled today, and with the snow piling up in NYC, we left bright and early in anticipation of delays. 6 am wakeup to check on school closure, 7 am check in with the doctors to see if they still plan to show up, 8 am departure. The commute was not so arduous though, and the waiting room was empty. Apparently everyone else cancels appointments in a snowstorm, but not me - it took me ages to get a specialist visit scheduled and synced with the pediatrician and I was not going to try to wrestle with the calendar again! So, into the snowy city we went.

James is 19 lbs, 11 oz and almost 33 inches tall. This means... still barely scraping the bottom of the weight curve, but he's in the 60 percentile range for height. Beyond the numbers, we got all good news: he looks and sounds good. The nutritionist thinks he's eating fine. She even ok'd his potato chip-and-chocolate snack preferences.

The best part of the day? He fell asleep as soon as we left appointment #2, and slept solidly through lunch, allowing Peter and I to have a peaceful date at a Upper West Side restaurant we found last year. Thank you, 2014; I like what you did there.