Friday, October 31, 2008


Truman dressed as his favorite story character, Bear, from the Karma Wilson series. We spent Halloween in Lubbock with Truman's West Texas grandparents where he attended their church Trunk'or'Treat and carnival. He had a blast and wasn't at all scared of costumes, but the thing he liked the most was the lights outside the church.

Thursday, October 30, 2008

October adventures

October is a great month for outdoor fun at places like the playground at next year's preschool, the Arboretum, and at Boo at the Dallas Zoo.

A call from the doctor's office

We got a call yesterday from Truman's pediatrician's office that we need to schedule a time to sit down and discuss Truman. He's willing to come in even on the days he doesn't work at the clinic. I think he must have gotten the latest report from Our Children's House. Why does it feel like a call from the principal's office?

Wednesday, October 29, 2008

GI Specialist Appointment

CURRENT WEIGHT: 19 lbs, 7 ounces
CURRENT LENGTH: 31.5 inches

We saw Truman's GI specialist, Dr. Barth, at Children's this morning. He was actually pleased with Truman's growth because he moved up a little on the weight-for-height chart. That one doesn't have a relationship to age that I'm aware of, so Truman's is in the 3rd percentile on weight for a 31-inch kid -- not fat by any means, but not skin and bones either. Truman's weight this morning (which is probably more accurate than yesterday's after a 6-ounce bottle) was 19 lbs, 7 ounces.

He determined not to an endoscopy because he the only things that might be found are some allergies, which he pegs at maybe a 10% chance, but it's still in the bag of tricks for later if needed. We made some tweaks to the medication. We're doubling the Erithromycin to see if it has any effect since the current dose doesn't seem to be. We're also doubling the Prevacid to the maximum dose for his weight and administering it both morning and night since it does seem to have some positive effect.

He very much agreed with the recommendation for in-patient therapy at Our Children's House. He said the program works wonders and is one of the best in the country. He also said we need to consider it sooner rather than later because there's a window in which texture aversion issues can effectively be dealt with without becoming a potentially life-long problem. However, he said we should discuss the timing more with his therapists because they will be better able to gauge whether we can wait 6 months to see if outpatient texture therapy works. If Truman's pediatrician, Dr. Suterwala, agrees at our appointment next week, I think we will probably start the process for at least getting insurance approval and Truman scheduled for in-patient therapy sometime early next year.

Dr. Barth again suggested we consider a feeding tube to give Truman some extra help overnight. We still want to avoid it if possible, and Dr. Barth said that Truman is not a critical point. If he were, Dr. Barth said they would have admitted him then and put one in today.

One thing he said that really reassured me in this whole process was when I asked whether his slow growth was affecting his developmental and cognitive growth. He said not at all because Truman does have some fat on him and is growing. He even took off his diaper to check that he has butt cheeks and to demonstrate to us one measure of fat on a kid. Dr. Barth said weight and height suffer before the brain does from malnourishment. He said he would let us know well before that point and basically said that the hospital might overrule us anyway if Truman was at that point and we opposed a feeding tube.

Tuesday, October 28, 2008

In-patient therapy

For some time now, Our Children's House (Truman's therapy clinic) has hinted that Truman should go through their in-patient feeding therapy. They are no longer hinting. Today, they told Ben we should really think hard about the process because now it's not just about feeding anymore. Truman's most recent occupational therapy evaluation shows him falling further behind in occupational, motor, and sensory skills, not regressing, just falling further off the developmental milestones for his adjusted age. (We're not even looking at actual age yet). Speech has been a problem for some time now, and all indications are that it is not just a speech delay, but a greater problem. They are recommending that we move into our Children's House for a month for intensive therapy in all three areas.

Truman also had a weight check today before his flu shot. Over the last six weeks, he has gained approximately 8.5 ounces to reach 19 lbs, 11 ounces. For Truman, that's not so bad, but considering that he had just had a 6-ounce bottle and has been taking reflux meds, meds for stomach motility, and a super-rich calorie supplement since the last check, it's not so good in the broader scheme of things either, particularly considering it's a slower rate of gain than the previous month. The one consolation I can think of is that this is the first full weight period without expressed breast milk, so maybe that added weight I put on to add fat to my breast milk was worth it.

Truman has an appointment tomorrow with the pediatric GI specialist. We will talk with him about in-patient therapy and the possibility of endoscopy and other tests he suggested last time if we have seen dramatic improvement since our mid-September appointment. I'm sure he'll raise the feeding tube possibility again, too, which we definitely don't want to do without first considering inpatient therapy. The reasons we are so opposed to a feeding tube are many (1) it's major surgery; (2) many children come to rely on them as a crutch; (3) Truman already often refuses to eat, so why take hunger out of the equation; and (4) Truman is such a crazy-busy, uber-mobile kid that we don't think it will work because he'll be messing with it, pulling it out, etc.

We really don't want to uproot Truman and leave our home for a month, but we don't want to have not done all that we can to help Truman grow physically, cognitively, and developmentally.

Thursday, October 23, 2008

PDO Without Vomit

Beginning with the second Parent's Day Out dropoff, Truman had made it a practice of vomiting (clearly behaviorial-stress induced) every time he was dropped off for Parent's Day Out. This week, he didn't vomit or cry when dropped off!
And, when Ben picked him up, he was sitting nicely at the table with the other kids while they ate. Truman wasn't eating the snack in front of him, but at least he was observing the other kids eat.
For the first day in a long time, Truman could almost be classified as having a day without vomit yesterday. He had a small one, but managed to control it before he lost everything, which is a pretty big thing for him.

Tuesday, October 21, 2008

Adventures in Trumanland!

Truman lately is very into getting onto, into, and under things -- including tabletops, drawers, cabinets, boxes, and more. He has also developed a fascination for necklaces, which most likely arises from his love of all things cord-like, also very evident in these photos. Look closely and you will see a necklace and/or a cord/rope in every one of these photos.

Wednesday, October 8, 2008

Why does he vomit?

With the entries on Truman's testing and vomiting, some of you have asked me exactly what goes on with Truman. Here is a basic summary of Truman's vomiting:

Truman's issues are primarily physical. It is clear that the vast majority of his vomiting is involuntary and that once the process begins he cannot stop it, regardless of whether it started voluntarily or involuntarily. Virtually all food that is not completely pureed or a very narrow category of crunchy things causes him to vomit. Clear liquids cause him to vomit. Too much volume of anything causes him to vomit, and his max capacity seems to be between 7 and 8 ounces. He also has other vomits that don't have a clear source that we attribute to reflux. Additionally, he has a strong gag reflux, so strong crying, coughing, or drainage causes spontaneous vomiting as well.

However, because of the frequency of involuntary vomiting, he has learned how to voluntarily do it as well. We have made huge strides with the voluntary vomiting with a behaviorial feeding therapist, and it now only occurs when he is very upset, which I think makes it somewhat beyond his control. Before, he would begin retching or sticking his fingers down his throat to avoid eating, going to bed, etc.

Vomiting is not necessarily a daily occurrence, but it often is and sometimes multiple times in one day. Also problematic is that a single vomit always erases at least one entire meal, sometimes more. Considering that he does not want to eat most of the time and is miles away (and getting further) from even his adjusted growth chart, Truman doesn't have "extra" meals in him to lose.

However, if we can have a day with (1) only "safe" food (which isn't necessarily a consistent target since the thickness of the purees he can tolerate seems and the variety of crunchy textures is inconsistent), (2) without too much volume (this is assuming his stomach fully emptied from the last feeding, which we have no way of knowing since he may ask for / accept more food than he handle), (3) without him getting a drink of bath water, pool water, or the water hose before we can stop him, and (4) without him getting too upset or stressed about anything, we have a vomit-free day. We regulate what he eats so much that we do have vomit-free days, but not with any frequency or regularity.

We have a follow-up with the pediatric GI specialist at the end of the month to see if the meds or Benecalorie have done anything with regard to growth and to go over the calorie counts. I think that since neither med has reduced the vomiting by any measurable level, I anticipate an endoscopy and stomach biopsy will be scheduled soon. It's such a fine line to walk between accepting his slow growth responding with therapy and considering aggressive treatment to ensure that he grows and that slow growth does not impede cognitive development.

Tuesday, October 7, 2008

We need a vomit break!

This is getting really old. Last night was a particularly bad vomit night. Ben was so proud that with the blender, butter and Benecalorie, he was able to create a 400+ calorie meal, which promptly came up 3 hours later along with the next meal. [We thought the erithromycin was suppose to make the stomach empty faster. If this is faster, what is regular speed for this kid?]

Then, of course, there was another vomit of the replacement meal. Then, of course, he couldn't fall asleep because he was hungry, but eating made him reflux because he had thrown up the reflux meds. When he finally went to sleep at 3 a.m., I'm not sure how much or little he had in him.

After all those tests we put him through in August, we're no closer to a solution.

Wednesday, October 1, 2008

Toddler drama

I had the vacuum cleaner out to change the belt when Truman decided to try to help first by trying to plug in the vacuum cleaner and then trying to stick the screwdriver I was using in the same electrical outlet. Well, being scolded about plugging in actual electrical cords and then having the screwdriver taken away was too much. He did the usual gulping in of air preparing to let forth a scream of protest, but ... the scream didn't come. About the time Ben and I commented that it was going to be a doozy of a scream since the build-up was so long, he began to teeter and then over he went. By the time we realized he fainted, he was awake. I think he scared himself and, of course, he vomited in the minutes following. But that's nothing new.