Thursday, May 29, 2008

Fun at the Beach

We spent Memorial Day Weekend in Corpus Christi with my sister and her family and had lots of fun at the Rockport Beach, the Texas State Aquarium, and a Corpus Christi Hooks baseball game.

Since our last post, Truman added several new words that he can point to and/or follow commands about: dog (taught to him by his cousins), cow, balloon, fish, sun, bear, and clap.

Friday, May 23, 2008

Communication Breakthroughs

It's an exciting time in Trumanland!

There is a Dr. Brazleton study that says that when children are learning new milestones, they tend to lose ground in other areas. So for example, when children are learning to walk, they tend to fall behind in speech. However, there is a different trend (and I think a study) that says preemies tend to achieve milestones in spurts and then go long periods without new ones. For example, Truman didn't learn to sit until the day of his first birthday. He began crawling a week later.

I listed all the little milestones, like clapping, a few posts ago, and then there's the big one of walking in the last week or so. But what we are the most excited about is that Truman seems to be having an explosion in word comprehension. In the last week, he has demonstrated that he understands and can point out the following in books or in the room: head, nose (sometimes, and usually only my nose rather than his own), baby doll, moon, stars, cat, and light. "Light" (or "ight") is the only real word he actually says, but he sure did seem to be trying to say "cat" during Good Night Moon last night. (Notice how most of the objects/words he can point out are from Good Night Moon.). He is getting good at the sign for "more" and is starting do the sign for "all done." There are a lot of other words that we know he understands based on his responses like mama, daddy, kiss, come here, veggie sticks, yogurt, turn the page, love (verb meaning hug), up, down, and of course, his name and the little cat's name.

I know most parents would be more excited about the walking, but it's been clear for several months that Truman, albeit delayed, is going to be just fine with gross motor skills. In fact, he only has physical therapy once a month because (except for walking) he was caught up to his adjusted-age peers for gross motor. But we have been so worried about the speech and comprehension issues--so afraid that's the other shoe that would drop.

As a last note, he has also learned how to slide down the stairs on his own, too.

Wednesday, May 21, 2008

Happy 93rd Birthday, Grandma!

Grandma, we hope you have a wonderful day and are sorry we can't be there with you.

Photo update

I've written about how Truman likes to hug people, toys, furniture, etc. He does it by laying his head on whatever he is "loving" and cooing at it. The question is which is better predictor of my child's personality -- when he "loves" the doll or ...
when he pokes it in the eyes?

No matter how many toys you have, a kitty in a box is the best of all.

Truman's couson, Violet, teaches him to play patty cake. She remembers the words a lot better than me.

Tuesday, May 20, 2008

We have a groggy walker!

As of this weekend, I think we can definitely call Truman a walker. He is now taking up to 12-15 steps at a time. He still prefers to crawl, but we see more walking every day. As for the groggy part, it seems that the appetite stimulant Truman was prescribed had one of the side effects that will keep him from taking it--it completely knocked him out. If he's sleeping through meals, it's not doing its job. We'll try for a few more days, but I think we are back to square one on that.

We're finally starting to feel that Truman will be able to communicate and understand speech in time. With the brain hemorrhages back in NICU, we never know when the other shoe is going to drop, and when he didn't seem to understand speech as he should, we (and the doctors) were getting worried that could be an effect of the brain damage. Just this week, he is clearly asking us to identify things in his books by pointing and making a particular sound. Also, when asked he can correctly point to the moons in "Good Night Moon" now and can identify that the bedside lamp in the book is an "ight" just like the ones in our house. Two or three times lately, he seems to be trying to use his "All Done" sign in his high chair, and he now has about half a dozen phrases he understands and correctly responds to. I think we are finally making some communication progress, so a big weight has been lifted for us these last couple of weeks.

Thursday, May 15, 2008

Weight Check


Truman had a weight check yesterday. He now weighs 17 lbs, 10.8 ounces--up from 17 lbs, 5 ounces six weeks ago. However, his growth rate has dropped down to 3 grams a day. His pedi admitted to being "out of ideas" with regard to Truman's eating, growth, and vomiting. He prescribed an appetite stimulant, and if Truman's weight doesn't improve signficantly in the next four weeks, he will be referred to a GI specialist at Children's Hospital for tests and further discussions.

In good news, I've been working on teaching Truman his body parts during his bath for the last few weeks. Last night, he was able to correctly identify his head when asked! Also, over the last five days or so, Truman seems to be really progressing in the walking arena. He is taking three or four steps at a time and as of yesterday was taking some steps without being prompted.

Sunday, May 11, 2008

Mother's Day

Mother's Day is a rather emotional concept for me with sort of conflicting thoughts about celebrating motherhood. As the mother of a preemie, am I less of a mother for not being able to bring my child to term or am I more of a mother because of the struggles we've watched Truman endure and shepherded him through? To all the other mothers whose journeys have not been what they anticipated: I offer this passage:

byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, May 8, 2008

Recent Milestones

Truman has hit several small, but important, milestones lately. He has learned:

1) to clap.

2) to move to music. Sometimes, this is clapping. Sometimes, it's waving his arms up and down.

3) to climb down off of the couch, steps, etc., by backing down off of them.

4) the sign for "more." He is still not very good at it, but it's finally some communication that we understand.

5) to point. Specifically, he points at all lights and says the same thing that sounds something like "gheet." We don't know what that means, but it clearly means something to him and is an effort to communicate something to us. Again, another small baby step toward communication.

6) to stack blocks. He has stacked up to four for his therapist, and as of this week, is choosing to do so on his own during play.

7) use the ring stacking toy correctly and without prompting.

8) actually allow his feeding therapist to feed him.

9) allowing his therapist to take him away from Daddy without complete meltdowns--progress in the separation anxiety department.

10) Play peek-a-boo. He actually will even play by himself, just putting random blankets, towels, and such over his face.

11) to scribble with a crayon. He still mostly wants to bite the ends off, but now he can make art for Mama's office. (Hint, hint, Daddy!)

In general, Truman seems to be doing a little bit less vomiting lately, which is great. In other news, we are starting to introduce him to other children, something he clearly needs. So far, we have seen him 1) knock down another child by using him as a piece of furniture to pull up on; 2) simply push other children out of the way of whatever he is trying to get to; and 3) take a chip literally out of another child's mouth and eat it. So, Truman has some learning to do about how to play nice with other small people.

He spent about an hour in the church nursery this past Sunday. He apparently cried most of the time, but at least he didn't outright scream the whole time. Today, he and Ben are going to a trial Little Gym class, and he start swim classes again in about a month with me. We also will try to get him more play dates with other kids and just front yard playtime in the neighborhood. Hopefully, he will have fun and learn the social skills he needs, but also his pedi thinks this will help with speech and eating development as well when he sees other kids doing things.

Finally, he just keeps getting more affectionate and hugs his parents and kitty all the time now. It just melts my heart.