Wednesday, December 31, 2008

Word Count

Edited to add more words and signs on 1/5

Truman seems to be taking off in communication lately. Since signing seems to be more effective for him right now, we are trying to focus on it, and it really seems to be working. He's adding a few words, but lots of signs and seems to understand just about everything we tell him or sign to him. And, just like the experts say, learning to sign a word seems to help him learn to say it as well. He's aquired several of them in pairs or the sign preceded the spoken word.

Here is Truman's current word and sign count:


  1. Dada (often comes out as DoDa)
  2. Mama / Baba (depending on whether he has the "M" sound that week since it comes and goes)
  3. Light (pronounced "dight")
  4. Eat (pronounced "et")
  5. Eyes (pronounced "ice")
  6. Yes (pronounced "yeah, yeah")
  7. Outside (sort of pronounced "otz", very difficult to distinguish from jibberish)
  8. Ice


  1. Off (meaning a request to turn the lights off / pronounced "oaf")
  2. candle (hard C sound only)
  3. Bye-Bye (always along with a wave bye)
  4. Beau (name of grandparents' dog, pronounced "bo, bo")
  5. Please (pronounced "es" and always in conjunction with the sign)
  6. Baby (accompanied by the sign)
  7. Poop (pronounced "bup")
  8. Shoes (pronounced "sh")


  1. More (often uses it in conjunction with saying "eat", so it's really more a request to eat)
  2. Please
  3. All Done
  4. Play
  5. No (shakes head, not the actual sign)
  6. Yes (shakes head, not the actual sign)
  7. Bye (waves bye)


  1. Shoes
  2. Help
  3. Cat
  4. Bath
  5. Truman
  6. Eat
  7. Touch (as in "no touch")
  8. Face
  9. Thank you
  10. Baby
  11. Drink

Sunday, December 28, 2008

Oh, the joy of cousins

Truman got lots of cousin playtime over the holidays. He loves being around other kids and had a blast with all of his various cousins. Above, he and Leo check out the slide at Grandmommy and Papa Perry's house.

Truman and his second cousin, Rylie, check out Truman's new big rig.

Ethan reads a bedtime story to Truman.

Ginny chases Truman and keeps him away from serious injuries.

Truman and Ethan have fun with hide and seek.

Thursday, December 25, 2008

Oh, the joy of toys

Truman had a blast with all the new toys and all the grandparent attention on Christmas morning. For the second year in a row, my parents spent Christmas Eve with us and we had a nice, quiet (and late) Christmas morning. Above, he's playing with Grandmommy with his new Crayola glow station. (Thanks to Heidi for posting about this great toy on your blog!).

Checking out all the goodies in his stocking with Daddy.

Coming down the stairs to find toys and grandparents Christmas morning. What a treat!

Truman couldn't wait for assembly of his new car on Christmas morning.

Here, Truman checks out his new tools while standing in the new wagon, of course. Truman insisted on opening the first several presents in the wagon.

Sunday, December 21, 2008

Getting Ready for Christmas Part 2

Truman and Daddy decorated sugar cookies for the holidays. Again, Truman loves to pour things. He's even snatched the sugar out of the pantry since then and tried to steal it for covert pouring. We're still working on cookie cutter skills.

Saturday, December 20, 2008

Gettring Ready for Christmas -- Part 1

One of the things I always looked forward to about motherhood was making things with my kids, but this probably all stems from a love of glitter that I did not leave behind in the 7th grade. Because it's somehow inappropriate for a big-firm lawyer to use glitter in her wardrobe or cosmetics, I have been itching to get my glitter fix. The original intent was to make Christmas ornaments, but the final product turned out to be Christmas cards. Turns out I have a child who also loves glitter, as is evidenced by the pouring photos below and the pile of glitter that was left on my sidewalk for days.

Friday, December 19, 2008

Developmental Pedi Appointment

Actual Age: 28 months
Adjusted Age: 24 months

Truman had his first developmental pediatrician appointment today. We were referred to get another opinion on the in-patient therapy issue. There were so many things we liked about this appointment. The doc was on the same page as our pedi, which is basically, "hello, this is a 23-weeker. Things take time. Back off therapists on how fast you expect results." She said that if Truman is growing and making progress in outpatient therapy, then it's Ok to wait to the summer to go inpatient.

She did lots of testing of non-verbal cognition and she that he is at around 22 months (about two months behind his adjusted age) in most areas and is 30 months in receptive speech. Can you believe that??? We thought he seemed to be on par with other kids in that area, but it is really hard to tell. Of course, verbal and self-care (i.e. feeding and some fine motor skills), she had him at around 10-12 months like most docs have said. I found it interesting that in her view, signs are equal to spoken words in "counting" words. On that note, he has added the word "bye" and the signs for help, shoes, and his name in the last couple of weeks. "Mama" has also resurfaced three or four times in the last couple of weeks.

The coolest part is that she said if she didn't have the NICU discharge summary, she would not have believed us that he was a 23-weeker or that he had bi-lateral IVHs. She said he was doing better than most of her 26- and 27-weekers. And, she made us feel really good as parents, when she told us that she couldn't give us any advice -- to just keep on doing what we were doing because it is working.

We have made a lot of progress in the last month or so on eating. He seems to be better controlling the urge to vomit. He has been able to add cheese, goldfish crackers, and sugar cookies to the diet. Although he struggles and vomits with them sometimes, he is doing better and seems to be gaining some better control of stopping the retching once it starts. Thicker, non-crunchy foods still seem to be a no-go, but he does seem more willing to try as of late.

After all the worry and trauma of last month's diagnoses and push to go inpatient, I feel like we have gotten back to more reasonable expectations by spending time with the big-picture practitioners and not just the small-picture therapists. It takes a village with this kid. Also, Truman really seems to be thriving this last month and moving forward in many ways. It's a good holiday!

Friday, December 12, 2008

The Progression of a First Encounter with Santa

At first, Santa was greeted with screaming. Then, safe in Mama's arms, Truman noticed Santa had a candy cane to offer. Then, Santa did a little poking at him with funny faces. Finally, the big man offered a present, and Truman was all smiles, at least when safe distance from the big man's lap.

Thursday, December 11, 2008

20 Pounds!!

He finally did it. He crossed the 20-lb mark. We took him to the doctor today to have his lingering cough checked out. The NP said the cough was nothing to be concerned about, but he weighed 20 lbs, 6.1 ounces. That means he gained almost a pound in five weeks. Truman has never gained weight like that, and he was sick half that time. We are floored. I think 20 lbs is my Christmas present. Now, if we choose, he can finally turn around in his car seat.

Friday, December 5, 2008

Homecoming Anniversary / Adjusted Second Birthday

Two years ago today, we brought Truman home from the hospital after 120 long days in NICU. It was also his due date. So as of today, he is officially two. He has come a long way this year.
Some of the highlights of this year include: he has learned to walk, run (sort of), slide, ride a ride-on toy (backwards at least), and to horde and carry many small toys using his chest. He also learned to draw circles, do some coloring, learned some letters by sight, mastered a shape sorter, and learned to stack multiple blocks.
He learned that he can figure just about anything out or get into anything if he just keeps trying. He learned to play hide-and-seek and to pretend.
He learned a few words, lost most of them, added a few signs, kept all of them. He has learned to communicate far more than his vocabulary should allow by using the few words he has, by facial expressions, signing, using proper inflection in the noises and syllables he does have, pointing, and leading people by the finger to things he wants.
He has both improved and regressed in eating this year; he learned to and later lost the ability to eat some crunchy foods, but he managed to correct much of his behaviorial refusal to eat and fight mechanisms against food.
He knows his house, his parents cars, his extended family, and all of his routines. He has learned to be separated from his parents for church nursery and Parents' Day Out.
He has learned to follow rules--and how to skate to their very edge--and endure time outs with relative patience for a two-year-old.
He has fallen in love with his stuffed animals and his parents. He has learned to hug and pat and offer his cheek for a kiss. He has learned to smile at cameras and developed responses to "cute" and "cute face" that make even the most sullen melt.
Without listing all the many ways he has grown and changed, it's been a huge year for Truman. In sum, he has grown from a baby to a boy this year.

Wednesday, December 3, 2008

Tuesday, December 2, 2008

Truman is a smart cookie

We discovered last night that not only can Truman identify circles and squares, he can draw a circle (or a simulation of one). We also have learned that he knows some of his letters by sight thanks to Leap Frog's Alphabet ball, as well as the songs that go with certain letters on the ball.

Monday, December 1, 2008

Christmas Shopping

To Truman's family:

We are trying to keep Truman's Christmas gifts focused on his therapeutic goals and on things we know he has a particular interest in. As a result, I've taken the liberty to create some online wish lists for him. And frankly, I like it when people create wish lists -- A LOT.

Barnes & Noble:

Toys'r'Us: It's wish list #1568669, and you need to search by recipient if the link doesn't work. This list is mostly a duplication of the other two:

But frankly, Truman has lots of toys -- way more than he needs. As always, contributions to March of Dimes in his name are appreciated instead of gifts.



Since our last update, Truman has had a really bad cold with the worst cough we've ever heard him have. Just about the time we decided it was bad enough to risk the winter doctor's office germs, he has started to recover. We're afraid he's had some weight loss from it since the cough triggered his super-strong gag reflex, and we've been fighting with a lot more vomit than usual. I think he lost just about every meal over the weekend. And, the poor kid got whacked in the eye with the corner of the dishwasher by his clumsy mother. He has two ugly cuts just below his eyebrow as of last night.

In fun news, we have gotten him to make both "T" and "K" sounds some over the last two weeks. For about a day, I got him to respond to the question, "What is your name?" with the "T" sound. Hopefully, we can make that stick. He's also developed his own version of the sign for "help" and is regularly making the "eat" sign upon request. He also appears to have added "outs," meaning "outside" to his vocabulary. Sadly, he has lost the "ma" sound and no longer says mama or more even when prompted. Instead, he responds to either prompt with a "ba" sound. He also seems to have lost the "na" sound, which he used to say when prompted to tell me "night, night."

Truman is starting to play hide and seek, or rather hide-in-obvious-places-and-quietly-wait-for-someone-to-find-me. Popular places include under the table, behind the couches, and under beds often with his feet sticking out. He seems to be getting more and more interested in music, much to his musician father's delight. Over the holiday, his Daddy Davis took the cover off the speakers and showed him how the sounds come out of different speakers. He repeatedly asked to hear it again. And, last night, we were watching an orchestra performance on television. He was so mesmerized at one point that he pushed Flora the cat out of the way when she got in his view. He also got out his alligator xylophone to join in at another point.