Friday, January 30, 2009

Our son the musician

Truman found Ben's harmonica and has learned to play it. You can see that he is very creative, including playing with puppets on. And, if you look closely, you can see that he has also decorated his sweater with stickers. The harmonica is a favorite toy--It took him all of about two minutes to learn the sign for harmonica.

Wednesday, January 21, 2009

Eat Please Cookie

Tonight, Truman signed his first sentence! He was pointing to the cookie jar and using one of his filler words / sounds. We asked him what he wanted, and he signed "Eat please cookie." Not only did he string words / signs together for the first time, he ate the cookie just fine, too.

Wednesday, January 14, 2009

New Posts

FYI: For those of you who keep up with Truman's blogs, I've gone back and updated back about a month.

Micro-preemie syndrome

Despite some of the great strides we're seeing from Truman, we know there is a still a very long road for him. Another mother, whose child also has severe feeding issues recently posted on her blog a call for the medical community to issue a new diagnosis of extreme preemie syndrome (or something similar) to explain to people all of the undefined, hard-to-see, pervasive, and life-altering things that preemies and their families deal with day-in-and-day-out, like feeding problems, sensory problems, motor skill issues, learning challenges, behaviorial problems, and the litany goes on and on. Her very insightful post is here:

What surprised me about her post was not the idea because I, too, have felt this way for the better part of a year. It was the reaction she got from people who felt that she was ungrateful for her "miracle" child's survival and progress. I guess it shouldn't shock me because people all the time ask me if Truman is "normal" now or assume he has "recovered" since he's over 2. When I explain to them that no, he hasn't recovered and try to explain what is going on with him, I get blank stares and platitudes about how Einstein didn't talk until he was 4, blah, blah, blah. I also often get reminders from people that I should be grateful that Truman has come as far as he has and for the miracle his survival was. And, I am. Believe me, I am grateful for every milestone Truman hits because at one point, we were told he may not hit any of them. At the same time, I get angry and frustrated with having to be grateful for what most parents get to take for granted, such as the fact that my child is alive or that he can walk. Yes, I have a miracle baby who I love more than life itself, but I would have settled for just a baby.

Tuesday, January 13, 2009

I Love You

Truman learned to sign "I Love You" this weekend. Only because I taught him the sign do we understand what he's signing, but it's so cute. He's also added "hurt" as a spontaneous sign recently and learned to "arf" at passing dogs.

Monday, January 12, 2009

Released from the GI doctor

Truman's pediatric GI doc released him today since he's seen good growth over the 4 months he's been monitoring him and because vomiting is decreasing. Truman actually gained almost 6 ounces in December. He's up to 20 lbs, 11.9 ounces. He also grew in height to 32.3 inches.

Friday, January 9, 2009

Blossoming boy

I posted recently about Truman's added signs and words. He seems to be adding more signs all the times and more sounds. He's not really adding words, but sounds in an effort to mimic us. For example, when the timer goes off for time out, he now makes an "S" sound when we tell him to tell us he is sorry.
He's blossoming in so many areas. It's hard to describe, but some examples are that he's negotiating more and more on the playground, figuring out to get to all the things he wants by moving things to stand on, actually "using" the play tools we got him, playing with us more. He got an alphabet puzzle for Christmas, and he already knows how to put each piece in without any turning around in the space or choosing between spaces.
Eating seems to be improving, too. Even though we are still having lots of vomit (due in part to yet another cold and the resulting phlegm), he made it through 3 ounces of stage 3 chunky fruit yesterday without incident. Over the last few days, he's even starting grabbing a bottle out of the fridge with water in it and at least pretending to drink on his own from it.
I don't even know how to explain what we've been seeing over the last few weeks other than just blossoming. His therapists are seeing it, too. His OT told Ben that Truman seems like a different child over the last 6 weeks. We're even starting to hope that we can avoid actually going to in-patient therapy once July rolls around. It's funny. He's done this before where he sort of stagnates for months or regresses and then just starts to take off and advance in multiple areas at once.
Maybe it's Parent's Day Out; Maybe it's new age-appropriate toys for Christmas; maybe it's Sesame Street or Signing Times on TV; maybe it's just time. Whatever it is, we know there is still a long way to go, but Ben and I are both just on cloud 9 about all the things we're seeing lately.

Thursday, January 1, 2009

Oh the joy of grandparents

Truman got to have a whole second round of Christmas when Daddy Davis and Gramma came for New Year's. Truman had a ton of fun with his grandparents, but I think Daddy Davis is his favorite person in the whole world because Truman can convince him to do just about anything. They both had a blast. Above, Daddy Davis and Truman play with his new rocking horse from his great-aunts. Below, he and his grandparents dance to Christmas music on the radio.