Wednesday, January 27, 2010

Back to physical therapy

Truman had a recent physical therapy evaluation. With his history, he has periodic PT evals and has been in and out of PT all his life. Unlike other forms of therapy (at least in Truman's case), PT is more short-term goal based. You set the goal, once you reach it, therapy ends until a new need presents itself. We had requested the most recent eval because he just seems awkward in comparison to his peers. Knowing his oral palsy issues and his past palsy issues in other parts of the body (remember the upside crawling he tried as a baby), we try to be hyper-vigilant about such things. Apparently, we were right.

Based on the results of his eval, his therapy clinic is recommending two sessions of PT a week to work on the following: (1) failure to run properly; (2) failure to jump properly; (3) improper floor sitting (apparently sitting with your feet behind you in a W formation is very bad for your physical development); and (4) core trunk strength. Presumably, a lot of things he does "awkwardly" or "improperly" are a result of overall muscle weakness, so things that might not seem like that big of a deal in other kids (like being behind in jumping) can be pretty significant to a kid with low muscle tone. At the least, it's something that needs to be addressed because it causes other problems.

So, that means that every week Truman will have two speech therapy sessions; one occupational therapy session; and two physical therapy sessions. And every two to three weeks, he will also have an hour-long feeding therapy session. Add to that three hours of special ed pre-school every day. This is one busy kid.

I really wish we could let him be a typical 3-year-old in some sort of Mother's Day Out program for a couple of mornings a week with the rest of his time to run and play and take trips to the park. As it is, his life basically consists of getting up, having breakfast and getting ready for school, school, therapy, lunch, nap, playtime with Mama in the evenings, bath, then bed ... every single weekday. At least, he seems to have lots of fun at school and therapy.

Tuesday, January 19, 2010

Like father, like son

So I knew Ben and Truman looked a lot alike, but check out this picture of Ben at the age of 8. As if you need help, Ben is the kid on the far left.
Then, check out this picture of Truman taken just last month.

Sunday, January 17, 2010

Blog Updates!

Keep an eye out for lots of updates over the course of today and tomorrow. I've updated all the way back to back to mid-October 2009.

Best friends

Our smart little boy

Truman is learning things so fast now. He knows all his colors and even distinguishes between dark and light versions of the same color. He does sometimes get purple and torqoise (which he pronounces "turk boys") confused sometimes.
He can count to five and counts things object for object, which shows he is really counting. He can also look at a group of items and identify without counting individually whether there are two, three, or four items. When we ask him to make two items into three and such, he can often do it.

He knows his letters for the most part by individual sight. We're not sure whether he knows his alphabet in order, but we think he does. He will recite A-B-C-D consistently. Last night while reading a A-B-C Dr. Seuss book, he threw out T-U-V. This morning, he threw out L-M-N (0r something like it) while I was signing the alphabet song to him.
He knows his name starts with T and will tell you that his name is "Tru Pice" if you ask him what his whole name is. He also knows the street he lives on and the name of the street his school is on.
He knows all his shapes and can attempt to draw some of them if you really push him. He also knows the name of most of his books, lots of animals, the different kinds of emergency vehicles, what different cars of train cars are and lots of other great stuff. He also has an uncanny ability to figure things out. He is so amazingly bright. We are so proud and grateful and in such awe of all the things he was learning and couldn't tell us until recently.

Speech update

Truman is continuing to make rapid progress in speech, particularly in the addition of vocabulary. He seems to have a huge vocab and is starting to even use some correct grammar (like the proper use of I and me and such). However, his diction is still very bad and is still extremely hard to understand. We still use sign language to translate when we don't understand him. He apparently remembers all the signs we learned, including ones he never used while we were mostly communicating with sign. However, he has developed a really bad stutter that makes it very difficult for him to get out even a single word sometimes. His speech therapist thinks the stutter is just a symptom of the rapid speech progress and that he will outgrow it. We are not treating it, for fear that shifting the focus to it will slow his otherwise lightning progress.

He has also finally started to sing a little. He usually quits once he realizes we're listening, but it's so nice to see him finally doing this staple of childhood.

New smile

Take a good look at this smile. He's going to get a new one soon. Truman has an abscess in one of his two front teeth. It burst and has caused him a lot of pain. Once the infection is gone, he will have the tooth pulled and a false one put in.
His original dentist missed the abscess at his cleaning in December, but we had noticed some discoloration, but thought it was a typical tooth discoloration issue common among preemies (apparently enamel comes along later in gestation). Then I noticed what looked like a blister on his gums while we were traveling over Christmas. Well, soon after we got home, it burst. We took him to the dentist, who diagnosed the abscess and told us the tooth needed to come out. He also said that we would have to leave a gap because it wasn't safe to put Truman under in order to build the filler tooth. We were concerned about that for cosmetic reasons, but also for speech and feeding reasons. We didn't want to add yet another challenge in that area. Front teeth are kind of important from a functional perspective. After hearing Ben's report about why the first dentist didn't want to put some sort of filler tooth in, I decided that we needed a second opinion.
We found another dentist based on recommendations. The new office is fabulous and super high tech and confirmed my suspicion about Truman's first low-tech dentist. He was just scared of Truman's medical history. I'm guessing he's not the last medical professional we'll have that problem with during Truman's childhood. The newer dentist, who has an pediatric orthodontist and pediatric dental anesthesiologist he works with didn't bat an eye about the process. Truman will have to be put under in some form (I'm not sure if it's conscious sedation because Ben has been handling it) in order to keep him still long enough for the mold for the new tooth to set, but apparently this is common procedure. There is no more risk to Truman than to any other child, and being put to sleep is standard practice for many pediatric dental procedures.
The abscess was most likely caused by trauma to the tooth 8-12 months ago. I do remember a couple of big falls on our tile floor in the kitchen, one of which caused a lot of bleeding and made me worry about a chipped tooth at the time. We had no idea such things can lead to abscess.
I'm also glad about switching to a dentist with an orthodontist in the practice. We already know that with the size of Truman's jaw (due to both genetics and slow growth) and the palate re-shaping caused long-term intubation, he's most likely going to need some serious orthodontic work at some point. In other good dental news, x-rays show he does have all his permanent teeth hiding in his gums--something which is not a given for many preemies.

Wednesday, January 13, 2010

March for Babies Team Truman

We are forming Team Truman for the 2010 March for Babies. Without the work of March of Dimes and the research it funds, Truman would not be alive and thriving today. Please consider donating or joining us at: The money we raise for March for Babies will support lifesaving research, services, education and advocacy that help babies like Truman get a healthy start and a healthy childhood.

This is the third year in a row for our team. Last year, we were the 7th highest fundraising team in Dallas. Please help us exceed that mark this year!