Monday, January 28, 2008

Look what I can do!

Truman fed himself out of a spoon this weekend. Being given the cream off the top of a piece of tiramisu probably helped. This picture is from Friday night. He did it again on Saturday with guacamole and refried beans, both of which had chunks in them (this is even bigger progress than eating with a spoon). On Sunday, he did it again with yogurt.

He also drank a yogurt drink out of an open bottle this weekend, too. We are very excited about the feeding progress this weekend!

Friday, January 25, 2008

Parent's Day Out

We registered Truman for Parent's Day Out at our Church starting in September. Although he'll be 25 months at that time, we decided to enroll him in the 15-21 month class thinking that's probably the more appropriate place for him to learn to interact with other children. Not only will he be developmentally closer to that age, I'm afraid he would get hurt by kids his own age due to the size difference.

It's a little daunting to think about putting him in a typical pre-school program, as opposed to a developmental program. But, I figure he'll learn a lot by example. I still worry a lot about mealtimes, but we'll cross that bridge when we get there. A lot can happen in 8 months.

Truman will be going for five hours on Wednesdays.

Speech Therapy Evaluation

Truman had his long-awaited speech therapy evaluation this morning. For those of you who aren't familiar with the therapy world, speech therapists work on both speech delays and problems (as you would imagine), but they also work on feeding issues. Truman was evaluated for both.

With regard to Truman's speech itself, the preliminary report is that Truman scores are scattered between 9 and 12 months, with an abrupt wall at 12 months. (Truman is 14.5 months adjusted and 17.5 months chronological age). This is primarily because not only does Truman really only have one word (Dada), he doesn't seem to comprehend speech as well as he should at his age. A one-year-old should be able to follow simply commands, point to things, and gesture. Truman understands and responds to only a few phrases. Among them, "Come here," "Turn the page," and "No cords." That's pretty much it. So, we are going to have one session a week focusing on speech delays. By the way, no more "mamas" since the first day.

There is no real need to re-hash Truman's feeding issues because I've written about them plenty, but there are two primary concerns. First, he only eats completely pureed baby food or crunchy items such as cereal and crackers. With a few occasional anomalies, everything else is either refused completely or causes vomiting. Second, he doesn't take a bottle sitting up or make any real effort to drink without assistance, nor does he really attempt to use a cup or spoon. A lot of that probably has to do with the fact that Truman has a real aversion to having his hands touched, so it's very hard to manually demonstrate these skills for him. So, he'll be having one feeding session a week.

They also recommended that we consider the inpatient feeding boot camp at Our Children's House, but we told them that neither Truman or we are ready for that. He's still just too little to move away from home for 4-6 weeks even with one of us there 24/7. Also, we'd like to give outpatient feeding therapy a good, long try first.

That now means that Truman will be up to five therapy sessions a week -- two OT, one traditional ST, one feeding ST, and one PT. I realize that's a lot, and a lot of parents choose more of a "wait and see" approach to early delays, but we figure with his history, it can't hurt. We (or our insurance) can afford it, and he seems to like going to the "play place" as we call it. I think feeding therapy will cut down some of that enthusiasm, but we've seen the impact OT has had on his muscle tone issues (by virtually eliminating them) and the great improvement in fine motor skills that has happened since we started.

Wednesday, January 23, 2008

My Child Likes 3 a.m.

So, Truman was up last night from 1:45 to 4:15 a.m. He didn't really want anything in particular; he just didn't want to sleep. We nursed twice, rocked, laid down together, walked the floor, left him to play in his crib, switched parents, everything, until finally he went back to sleep. I realize many people would probably resort to some sort of sleep training at this point and most Americans wouldn't still be nursing at 17.5 months old, but even when I get frustrated with Truman (which is a common sentiment at 4 a.m.), I am fairly certain my tombstone won't read: "I wished I spent less time nursing and rocking my baby." And, of course, I didn't mind that during part of all of this, he was smiling as he slept in my arms. Wow, he can pull my heartstrings even in his sleep.

Tuesday, January 22, 2008


Truman was playing at my feet this morning while I was getting ready for work. He pulled up on my robe and said "Mama" and then a "Ma" a few seconds later to get me to pick him up. Although 17.5 months is a long time to wait to hear it, it was no less blessed of a word.

That brings the count to two words -- Dada and Mama.

Wednesday, January 16, 2008

Crazy Morning

The moment I got in the door at work, Ben called and said "We have emergencies at home" -- never something a preemie mom wants to hear. Next, he said Truman was OK and proceeded to inform that this is how his morning went once I left the house:

Truman got into the spice drawer, pulled out the pepper grinder and dropped it on the floor, sending glass shards and peppercorns everywhere. About that time, Ben heard weird noises coming from the second floor, so he took Truman upstairs and put him in his crib while he investigated. He discovered from a window that water was pouring over the roof over our porch, but it wasn't raining. Then, he realized that our hot water heater (which is on the second floor) had burst and water was pouring out over the roof and through the wall into our formal living room below. About the time he discovered this, he heard a big thud, silence, and then intense screaming from Truman because he managed (for the first time) to propel himself over the side of crib. He's fine. Ben said he was over it in seconds and doesn't even look like he'll have a bruise or a bump from his adventure.

I called the home warranty company to get a repairman out, and Ben turned off water line to the hot water heater, so the emergency is under control, but wow, what a start to their morning.

Monday, January 14, 2008

Our Cookie Monster

We finally sound a fattening, finger food that Truman likes -- homemade cookies. In his hand is a brown sugar cookie Ben made for him on Friday. In fact, on Saturday, Ben sat down at the coffee table with a plate of cookies and a glass of milk. Truman crawled over to the table and pulled up and starting crying. At first, we couldn't figure out what was wrong because he was happily playing just a moment before. Then we realized, he wanted a cookie. We gave him one, and he was instantly happy again. Since then, he has learned to look in my hands for them.

Before Truman was born, we vowed not to feed sweets to our child until he was three or four so as to try to avoid training him to have a sweet tooth. My, how the rules have changed. As I've said, our current rule is he likes it, he doesn't throw it up, and it doesn't hurt him.

Speaking of vomit, we managed to handle a public vomit session at Cheddar's this weekend with grace and with minimal difficulty. In fact, I'm not sure anyone else even noticed.

By the way, what looks like the Fifth Disease on his left cheek is actually where he had a run-in with the front lawn, and an acorn won. He sort of has the outline of acorn on his face. I guess that goes with last week's mystery knot on the back of his head.

There were several more brief instances of standing on his own. We've yet to catch one on camera because they're too short, but we've got it handy and ready.

Friday, January 11, 2008

A Day Without Vomit!

Yesterday was a very pleasant, vomit-free day!

So, the picture is from last month, but it shows our budding chef in the making again. That's a spice jar he pulled out of the cabinet in his hand. Our spice drawer is one of his favorite things in the kitchen.

Wednesday, January 9, 2008

We love our pediatrician!

The vomiting has returned with a vengeance, and diarrhea has been added to the mix as well. So, needless to say, it's been a fun laundry and clean-up week at our house. (Remember, we're a cloth diapering family, so it's even worse than you think). Poor Ben deals with the brunt of it, and I really think it's starting to wear on him.

Truman had a doctor's appointment yesterday for a a Bailey's screen. It's just a regular screening process for developmental delays and therapy planning. Prior to the screening, we spent some time talking with Truman's pediatrician yesterday about Truman's feeding issues and developmental issues generally in light of the screening. We love Dr. Suterwala. He is so good about putting it all in perspective and reminding us that all of the other medical personnel--the various therapists, nutritionists, etc.--are focused on their little piece of the puzzle and milestones and benchmarks. He is looking at the big picture for a baby boy born at 23 weeks, and the picture looks great.

He basically said, look, there will be challenges all along the way, but he is making progress and has come so far since the beginning and just since the summer. Our job is just to keep him moving forward and give him the tools to do it at whatever pace it happens. He also told us that he had patients that refused to drink for two months and then returned to it and that we should expect periods where Truman may just decide not to eat much at all. It's not ideal or desirable, but it's not uncommon either. He also said that getting nutrition into Truman is more important than how it gets in and whether he is eating developmentally-appropriate foods and whether he is using a cup or bottle or whether he is holding the bottle on his own and not to stress over those developmental milestones as much.

I think the best advice he gave us was that we needed to take a vacation without Truman. Yea, like that will happen. Also, being Indian, he has a different perspective on a lot of things about American parenting and our focus on sleeping through the night and avoiding the family bed and early weaning. I totally agree with him on our culture's efforts at making our children gain too much independence too early. As I've said before on the blog, what's wrong with babying your babies.

As far as the Bailey's screen, we didn't learn anything we didn't know and were advised to continue therapy. In other words, he's delayed in most areas, particularly speech and feeding, but is pretty close to his adjusted age in both large and fine motor skills. So, nothing new or exciting there.


Monday, January 7, 2008

Growth charts are depressing.

Just thought I would share Truman's most recent growth chart from my online monitoring of his chart. We measure him based on adjusted age, so he should be with the other 13-month-olds for comparison. Clearly, he's never been on the chart, but he used to at least be following the curve, even if at a slightly flatter pace. Now, the line for the last two months is just flat.
So much for the myth that all preemies catch up in two years. It should would be nice not to have to worry about every ounce.

Adventures in Trumanland

Environmentalist in the making? I think licking a tree gives a whole new meaning to "Tree Hugger."


This weekend, Truman learned to hike his leg up to waist level and then lean over to climb onto things. That means he can now climb onto the hearth. So, no more fires this holiday season. He also attempted to climb into the bathtub last night for both (more explanation later) of his evening baths. Fortunately, he was still too short to make it headfirst into porcelin.

I also caught him once this weekend just standing in the family room holding the remote. He was about 6 inches from the hearth, so I think that's how he pulled up, but he was just standing them, pretty as you please. I have no idea how long he stood on his own.

In other weekend adventures, I was holding Truman when I reached into a tin to grab myself a cookie Ben made. Truman grabbed the cookie out of my hand and proceeded to just start munching it. He ate about half of it. The other half crumbled onto the floor or I think he would have eaten the whole thing. So, I know cookies aren't healthy, but we refuse him nothing he desires to eat (unless it's raw or toxic or something, of course).

I also sent Truman on what turned out to be a not-so-fun adventure for him. We were raking the yard and dealing with the massive deluge of leaves a 50-foot Oak can leave behind. We had a huge pile on one side of the yard, so remembering how fun leaf piles were as a kid, I tossed Truman on top just like I would toss him onto the bed or a couch (so barely a toss). He sank all the way to the bottom, under a four-foot or so pile of leaves. Needless to say, he was not happy as I scrambled into the pile to pull him out from Oak-tree suffocation.

He got me (and his daddy) back later that evening (i.e. the two-bath evening part of the story). We had finished most of the bedtime routine, and I was nursing him to sleep when all of the sudden, he began projectile vomiting all over me, including my face, my bare chest, his own face, both of our clothes. Ben heard my exclamations of digust over the baby monitor and came running. I handed Truman to him, and he proceeded to vomit all over Ben and the floor as well. So, a second bath and second dinner was deemed necessary. Cleaning up vomit is really getting old.

We have seen a lot of improvement this weekend with drinking. I think maybe he has had Fifth Disease for longer than the usual course because it seems like all the Tylenol we are giving him is really making a big difference. He is definitely improving in the drinking category.

Thursday, January 3, 2008

Fifth Disease


The nurse practitioner diagnosed Truman with Fifth Disease, which explains why he had high fever on the 21st, which was gone within 24 hours and then back again two weeks later. His fever today was 101. He also has a runny nose, an inflamed throat, and a rash all over his cheeks and some on his shoulders and chest--all of which are apparently classic Fifth Disease symptoms. It typically lasts 1 to 3 weeks.

The sore throat could explain some of his reduced liquid intake and why it has been really bad this week (less than two ounces on Jan. 1). However, I don't feel like the NP and the nutritionist really listened and understood how pronounced the liquid issues are and the fact that they are about six weeks old. (We didn't see the pediatrician). However, we did see the nutritionist that we don't like much because she doesn't seem to understand Truman's particular issues. She also doesn't really support long-term breastfeeding and said that a 13-month-old should be getting most of his nutrition from solid food, which based on all the reading I've done on breastfeeding and infant nutrition, is just not true for a breast-fed baby. My understanding is that it should be 50% from solids at most at this point.

We go back on Tuesday to see the pediatrician and for another OT evaluation. We'll discuss the liquid issues again then. In the meantime, we are going to try some of their suggestions for liquids and means to get them down him.

In good news, Truman re-gained the two ounces that he lost, so he's back up to the weight he was just before Thanksgiving.

Pedi Appointment this afternoon

Truman has a pedi appointment at 1:30 this afternoon to check his electrolytes and make sure he is not dehydrated. Normally I wouldn't wish for my child to be sick, but I hope they find a medical cause for his drinking issues that can be cured, like an ear infection. I really don't want to hear that it's a psysiological or psychological issue or yet another "preemie" thing, yet considering the gradual decline over the last 6 weeks or so, I think that we're talking something bigger than illness. But, here's hoping my child is sick.

Wednesday, January 2, 2008

Belated Merry Christmas!

I think the ornament hanging next to Truman is probably the last one on the bottom two set of branches on our Christmas tree. Of course, it's been removed, too, since the time of the photo. In fact, most of the ornaments from the bottom of the tree have been living in a pile on the coffee table since well before Christmas. I am sure there are others under the couches, in toy boxes, behind shelves, and other sundry locations now. The tree has definitely been fun for Truman and positive from a therapy sense because he learned yesterday how to use the light button and turn the lights on and off over and over. Considering that he's learning cause-and-effect--one of our therapy goals right now--we didn't stop him.

Truman was royally spoiled over the holidays by his parents and other relatives. A few new favorites are his new activity table from Santa, his hardwood floor-worthy push toy from Gramma and Daddy Davis, and his Cookie Monster guitar from his Uncle Chad and Aunt Teri-Rae. He also seemed to enjoy having some new people to play with, but was clearly glad to be back at his home when our travels were done.

As we predicted, we did not make it through the holidays travels and visits without illness. Truman appears to have caught something else and is congested and hoarse and not sleeping as well as usual. He doesn't appear to have any fever, though. Traveling with a baby and being off of the routine is heinous by the way.

Eating and drinking continue to be very challenging. I think he made it the week of Christmas with only one or two vomiting episodes, but he had a doozie of one in the car on the ride home from West Texas on Sunday and another at the dinner table yesterday. He seems to be making some real progress in his willingness to try various finger foods off the table, but he is still nowhere near making a meal of such things. Mostly he tastes them, chews them a little, and then drops them on the floor. But hey, not automatically dropping them and not throwing them all up is big progress. This past week, he has actually eaten a few bites of sausage ball, chocolate cake, smoked cheddar, ham, Kashi cheese crackers, and rice pudding. He has also tried, but not really eaten, green beans, pinto beans, black-eyed peas, home fries, pita bread, cornbread, baked beans, and Yorkshire pudding. I am sure there are others, but the moral is, we are seeing improvement in the table food area.

However, the drinking issues continue to get worse. I think yesterday's milk consumption by bottle was somewhere in the neighborhood of 4 ounces. His Aunt Suzanne got him to take a few sips of water from a cup after he repeatedly asked for it by grabbing her glass. Being home for the holidays, I was able to keep him hydrated with brief nursing sessions, but now that I have to be back at work, I won't be able to do that for about 10 hours of every day. We are really pushing yogurt to try to get keep him hydrated through alternate means. But of course, that means he's not getting nearly as many fruits and veggies because he will only eat so much. His overall food volume is also down a lot with his refusal to drink. There are also times when it is clear that he is hungry, but too tired to eat. It used to be that these times were perfect for bottles and nursing because he could fall asleep as he filled his belly. Now, I feel like there are times when he goes to bed hungry. That really breaks my heart but we can't force him to eat.

We are getting very worried about him how the lack of liquid and lower food consumption will affect his health and development. Truman has a general check-up next week to re-evaluate nutrition and for a slightly different OT evaluation. Hopefully, we can start to get some answers or at least a plan.

In fun news, Truman has two more teeth coming in on the bottom, so he'll have a matching set on top and bottom soon.