Tuesday, August 26, 2008

Swallow Study

Truman had his swallow study today. The test went a little better this time. Truman was fine with being strapped in since it was just a waist strap into a feeding chair, but as soon as the camera swung around, he started freaking out. Fortunately, although he was plenty mad and angry, he wasn't as scared as last time.

We didn't get past the liquids because of the intentional vomiting and refusal tactics. But, they were able to determine that the mechanics of swallowing are fine. So, the diagnosis indeed appears to be severe food / texture aversions and perhaps reflux, but that wasn't apparent on the swallow study. However, reflux is usually diagnosed based on parents' reports rather than tests.

I'm glad he doesn't have some horrible physical malformation or malfunction, but I was hoping for a magical answer to the eating issues. Instead, we're back to just the hard work of therapy and hope that with enough time and therapy, we can get past these issues. All three of us are just tired of dealing with the eating issues. It's very hard when something so basic and daily--and easy for most people--is such a big struggle.

Monday, August 25, 2008

Shoes & Socks

Truman is really interested in shoes, socks, and toes lately. He likes to try to help put on his own shoes and help us put on our shoes. On the left, he is wearing Mama's hiking socks. Above, he's wearing Daddy's hiking boots. (Can you tell we're getting ready for a vacation to Rocky Mountain National Park?)

Wednesday, August 20, 2008

Upper GI test today

The test was awful. Truman screamed bloody murder the entire time he was strapped in, which was quite a while since we had to wait on the doctor for 10 minutes and gavage an ounce of barium. You could just see the terror on his face.

In terms of results, his esophagus and stomach look fine and he seems to empty OK. So, it looks like he doesn't have a physical problem like a tear or stricture. Next Tuesday, we have the swallow study to see if there is a mechanical problem.

We also learned that Truman has at least a skin allergy to red dye because everywhere the (strawberry-flavored) barium touched his face and neck where he threw up, he had a really bad skin reaction.

So, back to the drawing board.

Tuesday, August 19, 2008

Parents Day Out Meeting

I went to Truman's Parent's Day Out orientation meeting this morning and got to meet his teachers and some of the other parents from his class. I think the teachers are feeling a little better about the eating issues now that they know Truman won't be hurt by the other kids' food or choke and quit breathing. They may just have a big mess to deal with, and Truman will lose precious calories. Interestingly, the thing that seemed most concerning to them was the lack of drinking and that he might go the whole time without drinking.

It turns out as well that Truman will have a classmate who, due to an earlier open heart surgery and resulting NG tube, also has eating challenges and is a mostly-puree girl. I met her mom, and we both are very glad to know our kids will not be alone in sending their own snacks, drinks, and having to leave during mealtime. Like Truman, her daughter can't drink the clear liquids they have during snack without choking and can't waste the calories on their measly 2% milk. And she, like Truman, has a strong gag reflex and throws up a lot of foods. And she, like Truman, can't waste time on low-cal, high-water foods like peas and applesauce. Ah, kinship!

Monday, August 18, 2008

Birthday Party

Truman had lots of fun at his "Under the Sea" birthday party despite being unwilling to get in the kiddie pools. However, the fireman's hose from his grandparents was super fun and goldfish crackers, powdered sugar icing, and balloons are fabulous when you're two. We had ten little kids there all running around crazy in the front yard.

Truman received several trucks, dump trucks, cars in varying sizes, but the hit of the toys was his faux cell phone that rings like a real one. He was definitely a happy boy at the end of all the fun.

Wednesday, August 13, 2008

Medical Update

CURRENT WEIGHT: 18 lbs, 10 ounces


Truman had his two-year check-up today. Overall, he is healthy. His weight gain slowed down a lot this time--just 3.6 ounces over the last two months, but drumroll please ... his head circumference is on the chart for his actual age. All other growth plotting will remain on the adjusted age charts until he is 3. However, he still hasn't made it onto those charts either, so no "percentages" to give yet. Let's hope he gains weight soon because he is getting too tall to face backwards in the car even in the big car seat without his feet touching the seat in front of him, but he has to be 20 lbs first.

Speech is still very delayed for his age, but Dr. Suterwala again reminded us that this is one of the biggest problems his micropreemie patients have. In speech therapy news, Truman has had about a two-month hiatus because of the departure of two speech therapists at Our Children's House. But he should start back up by mid-September at the latest when some new therapists are scheduled to start.

On the eating front, Truman has an upper GI series scheduled for Wednesday, August 20 and a swallow study scheduled for Tuesday, August 26. Hopefully, we'll learn something from these tests that will help the GI specialist at his consultation on September 15.
The photo above is Truman goofing around in Mama's wool house socks.

Tuesday, August 12, 2008

Swallow Study scheduled

It will be on August 26 at 10 a.m. He is also back on reflux meds since he threw up while sleeping about a week ago.

Friday, August 8, 2008

Truman is 2!!!

Two years ago, we didn't know whether he would make it two days. Now, two years have passed since our little miracle was born.
Truman has made huge strides this year. Since his first birthday (when he learned to sit), he has learned to crawl, walk, twirl in circles, stack blocks, scribble with crayons, eat with a spoon, drink from a straw (occasionally), use a ring stacker and a shape sorter, blow a whistle, crawl up and down stairs, climb, sign four words, say seven words, understand dozens of words, kiss, hug, identify several body parts, push buttons, turn lights on and off, love stuffed animals, make a sound and gesture for an elephant, recognize himself and other family members in photos, and too many more things to list. He has come so far, particularly over this summer.

We're in Lubbock for a wedding over Truman's birthday, so we're having a little party at the grandparents house. His big party will be in Dallas next weekend.