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.

Wednesday, November 12, 2008

Meeting with the In-patient clinic

We met with the in-patient clinic today and put Truman on their schedule for July with a plan to bump him to April if availability opens. That way, that ball keeps rolling forward while we assess as we get closer. If things do become emergent before then, (i.e. more immediate plans for a feeding tube) they will make room for him sooner. They agreed with Dr. Suterwala (in contradiction to his behaviorial feeding therapist) that Truman is not at a critical point.

The other thing we talked about is increasing his texture-feeding sessions and get some intense lessons in the meantime for both me and Ben to work on at home. Of course, we already do some things, but we don't have a strict protocol about using the oral therapy brush how many times a day, how many meals we challenge him at versus the ones we don't, etc.

They also asked for permission to start working with the GI specialist on Truman's motility issues with food. Up to this point, they have consulted only with the pediatrician. They want to ask the GI specialist to order a motility study. More studies, how fun! If it doesn't change the treatment protocol, not sure whether we will agree to it. We'll have to discuss it with the doctor.

On the same subject, we also learned today that the underlying ingredient needed for erithromycin was discontinued in the last couple of weeks, so we are back to figuring out what drug to use for stomach emptying. The compounding pharmacist and therapists both were going to talk to the doc about what another option would be.

Wednesday, November 5, 2008

My cute face

If you ask Truman to show you his cute face, this is what you get with the hand on the chin. We have no idea where it comes from, but it's cute.

Pediatrician Visit

Weight: 19 lbs, 7.4 ounces

We saw Truman's pediatrician today and spent about 45 minutes talking about Truman's various issues, long-term outcomes, progress to date, etc., etc., etc. Dr. Suterwala disagrees with the therapists and thinks it is not yet time for in-patient therapy. We talked about how Truman's speech and texture issues, as well as fine motor issues, are neurological as a result of his three grade III or IV brain hemmorhages and that it will just take a lot of time. He also agreed that the texture-feeding issues are probably inter-related with speech. He estimated that Truman was somewhere in the 9-12 month range with regard to speech and developmental feeding. As far as the bad occupational therapy evaluation, he was sort of like, he may have escaped gross-motor cerebral palsy, but that doesn't mean he escaped fine motor problems; of course, he has issues with regard to upper body strength and fine motor skills.

He didn't think in-patient therapy was a bad idea, but that it is just not time yet and that the therapists need to evaluate Truman in terms of his larger history more than they do. He told us that pedi GI and the therapists are used to a certain protocol and time period for therapeutic improvements with kids, but he reminded us that there really aren't very many other kids like Truman. In fact, the pedi said he has never had another patient of Truman's gestational age with brain bleeds as severe as the ones Truman had who survived.

Dr. Suterwala is really good about putting things in perspective as far as the big picture for Truman. He referred us to a developmental pediatrician for a second opinion on in-patient therapy. I put a call into her office today. The pedi also wants a more thorough speech workup to better assess what we are dealing with. And next week we meet with the therapy clinic to talk about the in-patient program. So, we are keeping the subject open, but we don't feel as compelled to make a quick decision.

Although it was heartening to hear an opinion that completely disagrees with the notion that Truman is at some sort of critical point in therapeutic intervention, it is always hard to be reminded that the reason the issues aren't critical is because Truman can't be compared to even his adjusted-age peers. Although we know logically that Truman cannot escape the severity of his brain bleeds without consequence, it's hard sometimes to have to think about it in reality.

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.

Tuesday, September 23, 2008

The Milk Has Run Dry

When I was pregnant, I made it a goal to try and nurse my future child for the World Health Organization's recommended two years. After 16 months of pumping and 19 months of nursing, Truman consumed his last bottle of frozen breast milk today. He spent the first 24 months of his life exclusively on breast milk and another six weeks on a mix of breast milk and whole cow's milk.

This photo is the last sad, partial bottle alone in the vast freezer that was once dedicated (along with the freezer side of another side-by-side fridge) exclusively to breast milk and completely filled with the liquid gold.

Even counting law school, I can say that my ability to provide Truman with 25.5 months of breast milk is one of my proudest accomplishments. When he was born, the only thing I could "do" for him to assist in his medical care was provide milk. Any of you that know me well know that give me a goal, particularly a measurable one like pumping 30 ounces a day, and I will hit it. I thank God for blessing me with certain Holstein qualities because having that goal and knowing that I was providing his nourishment is one of the things that me going through those long months of NICU. It was one of the only parts of being a "mother" that I could say I excelled at during those dark months. I may not have been able to carry babies, but I sure could feed them.

Safety Cuteness

Truman only gets yelled at by Mama for two things -- getting too close to the street and the swimming pool. We'll probably have to add the fireplace to that this year. The lessons have worked.

Last week, Truman and I were playing in the front yard while the boys across the street (8 and 12) were playing ball in their front yard. Truman grabbed me by the finger and led me to the curb. It took a while to realize he wanted me to lead him across the street. Then last night, we were down the street visiting two other preschoolers. When the other two decided to step down into the street to play with the leaves gathered in the gutters, Truman and I were on the curb. He kept pushing me from behind toward the street until I realized he wanted down into the street, too. So, I grabbed a pile of leaves for him and put them on the curb.

My little boy may be growing up, but he still knows he needs his Mama for the scary stuff in this world. :)

Wednesday, September 17, 2008

First Day of Parent's Day Out

With the exception of a little bit of crying when he was dropped off, Truman's first day of "school" went very well. He even stopped crying and was distracted by a toy before we were even out of sight. He enjoyed himself and his only meltdown occurred when his diaper was changed (which often prompts a meltdown at home, too). He also was very upset when the other kids had saltines and he didn't. They called and asked and we allowed him to have a saltine with the warning that it could prompt vomiting. They risked it, and he ultimately just carried it around, happy to simply hold what the others were having. So, three hours of school down, a lifetime to go.
He was so tired after he came that afternoon that he fell asleep for 45 minutes on the floor.

Pediatrician Visit

Weight: 19 lbs, 2.6 ounces
Height: 30 inches

Truman had a follow-up with the pediatrician to discuss the various GI test results and the GI specialist appointment. Dr. Suterwala is on board with Dr. Barth at least as to the initial testing. He was pleased with Truman's weight gain from the last appointment, but did indicate that if Truman loses weight or slows down on gorwth this winter, we will have to discuss pulling him out of PDO and isolating him again through the winter. We don't want an illness setting him back on the growth curve even more, but I don't think I can take another half-year of isolation.

Monday, September 15, 2008

GI Specialist Appointment

We met this morning with a GI Specialist at Children's Hospital named Dr. Barth. We really liked him because he seems like a problem-solving kind of guy and definitely asked some new questions and posed some new ideas we hadn't heard talked about before. He was of the opinion that even if being a preemie is the cause of Truman's eating problems, that doesn't mean we can't find a better solution than where we are now. He made some suggestions we like and some we don't.

First, Dr. Barth wanted to rule out lots of possible causes for Truman's troubles. His plan is for testing for celiac disease (we did the blood draw today at Children's--it was awful because it took more than one try) and a sweat test for cystic fibrosis (the genetic test was done in NICU because they suspected it then, but it came back negative). He also brought in a nutritionist who talked to us about some alternatives for adding calories, so we are going to try Benecalorie in addition / in place of Duocal and add it to everything. We are going to formally monitor calorie intake for a few days to make sure Truman is getting enough calories. We've done it informally before and think he's getting about 1000 calories because of all the fat-loading we do. You would think he would be huge from that.

Dr. Barth prescribed erythromycin in low dosage because one of the side effects is faster stomach emptying. The idea is to make Truman's stomach empty faster so that he will feel hungry sooner. Apparently, it also helps move food through faster so that there is less opportunity for it to come back up.

If the erythromycin doesn't help things, calorie intake is at least 840 a day, and the tests come back negative, Dr. Barth wants to do an endoscopy to look for inflammation, test for GI allergies, and basically check things out. If a "cause" or solution isn't found with those tests, Dr. Barth said a feeding tube may become necessary to get Truman to consume more calories with overnight feeds. We really don't want that to happen because it's another surgery and once you go down that path, it's very hard to wean off of it.

Dr. Barth was concerned that Truman has never had a growth spike and discussed what I have thought about so many times and that's the fact that if Truman doesn't start gaining faster than his peers, he will not catch up. As it is, Truman just falls farther and farther behind. He's yet to experience the "catch up" growth that most preemies do.

So, we feel glad that we've got an "expert" on the case now and that he's trying to solve the Truman eating puzzle. We go back on October 29.

Sunday, September 14, 2008

Parents Day Out Delayed

After almost an entire night of staying up screaming, Truman had to delay his start of Parents Day Out. We ruled out an ear infection and think he may be cutting his two-year molars. I think I felt a little nub in there, but of course, I got bit trying, so I'm not going back in. After several nights in a row of screaming through most of the night so matter what Mama and Daddy did, things settled down a bit this weekend. Truman will start PDO on Wednesday of this week instead.

Monday, September 8, 2008

Rocky Mountain Vacation

We all had a lot of fun on our Rocky Mountain National Park vacation during the week of Labor Day. Truman proved the toddler truism that the smaller the animal, the better. Chipmunks and way cooler than elk and mule deer. The last time we went on a family vacation was in 2005. We had a "babymoon" planned for Yellowstone over the Labor Day week in 2006, but Truman decided to make his early appearance and cancel that one. And then there was the long isolation and fear of germy airplanes that kept us from traveling. So, it was time and away we went on the Saturday before Labor Day. Truman handled his plane ride to Denver with no problem. We can't say the same for the return flight.

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?)