Big kid and smiling baby

I went to visit and observe James' preschool this week, and it was a lot of fun to see how he has adapted to the new setting. He was totally outgoing about playing in the kitchen area with pretend food, not engaged with the other kids but not bothered by them anymore either, and eager but shy during the music session. He loves music, but stays completely frozen and won't shake his instruments, as though he really wants to join in and just doesn't know how. He doesn't dance much either, but did a little butt wiggle that was super cute.

He insists on waiting each day to watch the school bus leave so he can say "bye bye bus".

Some pics of James' new haircut, and Elise giving her new toothless smile:

James goes to school

It's been a long time since we've posted a James update, mostly because he's been doing so well. He started a two-hour morning preschool in January and seems pretty happy to go off to school each day. He now has about 25 hours a week of therapy, a big increase that started in October, and the results have been dramatic.

In October, he only knew a few words and only said them when prompted, meaning he could repeat but not communicate of his own volition. By November, he was saying a handful of words without prompting. By December, that had increased to dozens of words - some more clear than others. He knew the colors and was getting pretty good at the alphabet. By January he was stringing words together. In February, he frequently said sentences and started counting up to twenty without prompting. He babbles all the time now, and while he might have around 100 words that we understand, he clearly is trying to say a lot more. Some favorites? "bum-bo-bay"(bumblebee), "ssi-do" (sticker), "toy tway" (toy train) and "mooey" (music).

He weighs about 25 pounds now and looks great to us. This is still too low to please his doctors though, so he has been back on the ng feeding tube since last summer. He hates it, but with another surgery coming up, it's in his best interests to grow as much as possible beforehand.

Surgery #3, the Fontan, is the last planned surgery and will hopefully repair his heart enough to last for years before any additional interventions are needed. It has been tentatively planned for this summer and will likely be scheduled in July. However, it is dependent on his weight gain so we'll update accordingly as summer approaches.

And our family is 4

We welcomed James' little sister on January 14. Elise is a beautiful and healthy little girl!

Besides these pictures, we are happy to share with our family and friends the online photo album linked in the previous post.

Baby girl Elise is here!

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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: