Teeny Tiny Truman

This page is all about Truman, born Aug. 8, 2006 to Kara and Ben.

Thursday, August 16, 2007

Truman has a big noggin!


Truman had his one-year evaluation yesterday. All in all, he got a positive review. His weight is still lagging, and in fact is moving farther below the growth chart for his adjusted peers (He would need to be 17 pounds to make it onto the standard chart). However, his length is showing a steeper curve and getting closer to the chart. (He would need to be 26 inches long to make it onto the standard chart). His head, on the other hand, is actually almost on the chart. So, the bottom line -- Truman has a big noggin. Clearly, his pedi and nutritionist want him to do a better job gaining weight, but they weren't too concerned about the most recent stats because he is improving in length and doing so well on head growth, which is the most important growth statistic of all. Dr. Suterwala also talked about the weight issue in that with a 23-weeker, he really can't even be compared to his adjusted-age peers or even a 25-weeker for that matter. His only reliable measure of comparison is himself and whether he's growing, which he is.

That said, weight gain is still important and to be pushed as much as we can. So, the nutritionist raised the possibility of a product called Duocal, which is a fat and carbohydrate powder which can be added to liquid or solids to increase calories and fat. However, there were out Tiny Tots, so we'll think about it in a month at his next weight check. In the meantime, he was prescribed butter. In addition to the Neosure we put in all his solids foods (and bottles of expressed breast milk), we are to melt butter and mix it into his solids. His nutritionist joked that we should just give him a stick of butter to gnaw on, and I don't think she was entirely joking. She also suggested we encourage fattier and starchier solids like avocados, sweet potatoes, squash, and peas. We're really building some great food habits long-term -- teaching Truman to want carbs, butter, and fat.

Dr. Suterwala is very pleased with Truman's progress on gross motor skills and improvements in muscle tone and reduction in extension tone issues. He stated that he does not think Truman will have cerebral palsy issues with regard to muscle tone. He encouraged us to continue pushing Truman with therapy because he, too, believes that it is really making a difference. He agreed with the OT's recommendation to step up to two sessions of occupational therapy or physical therapy every week. We are currently working through the insurance issues with regard to that, so Truman should be adding more sessions within the next couple of weeks once all that is worked out.

Truman's speech development delays, on the other hand, do concern Dr. Suterwala, who thinks they could be related to his brain bleeds. He agreed that an evaluation by a speech therapist is called for. He also referred Truman to Callier Center for Communication Disorders for a hearing screening just to rule out the possibility that his speech delays could be related to hearing issues. That is scheduled for September 21. Remember, we had concerns in the past that Truman was late to turn towards sounds, but he passed his hearing screening upon NICU discharge and passed the informal hearing test Dr. Suterwala gave him a couple of months ago. So, there's not a concern that he can't hear at all, but there could be some deficit there, even though I really doubt it. Either way, it needs to be ruled out before beginning speech therapy.

At this point, Truman is quite vocal, but he does not babble. He basically just coos, and even then, he only uses two vowels for the most part. However, the dexterity he has achieved with the letter "e" is impressive. We've heard a total of four consonant sounds ever -- and none of those were in succession. An 8-month old should be babbling quite a bit, and many have said their first word. So, it is an issue, but hopefully, he'll surprise us soon like he did with gross motor skills or will respond well to speech therapy.

His occupational therapist also continued to express concern at today's session that he has some of oral fixation issues because of the excessive drool and because he rarely interacts with toys in any matter other than putting them in his mouth. For example, he does not bang toys together. If there are oral fixation issues, a speech therapist would also be the appropriate person to deal with that. In the meantime, we are trying to offer toys that can't be put in the mouth and trying to teach him to bang things, pet things, etc. By the way, that backfired with the cat last night when he tried to put her tail in his mouth and take a bit bite of her side. Flora was not pleased, but just politely ran away.

Dr. Suterwala disagreed about the diagnosis of the white bumps on Truman's hand and foot as sebaceous cysts. He thinks they could be deposits of fat, which could show he's not processing all the fat we are pouring into him. Or, they could be "swimmer's warts." Either way, we need to figure out what they are, so he gave us a referral to the dermatology clinic at Children Medical Center. However, when I tried to make the appointment today, I got the runaround that if I wanted to see a dermatologist for my child's pimples, I had to wait until December. Tiny Tots is now trying to help rectify the situation, but isn't making much progress either.

All in all, he was pronounced to be doing fabulously for a 23-weeker at one year of age.


Blogger Dupree said...

I know I shouldn't compare my son with yours, but I thought this fact about him might give you a little hope. My son never babbled. That's right - never. He said his first word around 15 months and not much else until around 19/20 months. Then he exploded (with words, that is). Of course that was right after we had him evaluated by therapists. Truman may have some speech issues, but there is a chance that things are on track too.

Happy Birthday to Truman and Congrats to your whole family!

10:11 AM  
Anonymous Anonymous said...

Hi Ben and Kara--

Wow! Truman has made such amazing progress over the last year. I found your story through ivillage last year, as I was expecting my third son (in February this year). I often check the web site--and and so happy for you. You guys have done an amazing job getting through the last year, and I often envie your relationship with each other! (My hubby and I had a 1 week NICU stay and barely made it through the experience talking!)

Best of luck!

12:06 PM  
Blogger Kellie said...

Sounds like a great appt overall. Truman is truly astounding in so many ways. Our oldest preemie has dealt with (and continues to deal with) a lot of oral fixation issues. He has sensory processing disorder and needs a lot of oral input. He gets OT at his special ed preschool and we do brushing techniques here at home along with using a "chewy". You may ask your OT to see if Truman can use a chewy (it is an official OT toy for therapy) that Truman would use as the only toy he is allowed to put in his mouth. This of course would be the end result of therapy and Truman would have to work towards weaning off of putting all toys and unsuspecting cats in his mouth, to using only the chewy for his oral stimulation. It has worked wonders for Carson and now he uses his chewy and his doggie blanket as the only oral stim items.

Per the weight gain issue. Duocal is a great product. If Truman is still hanging around the 1/4 to 1/3 oz/day gain at the next monthly appt, I would definately give it a go. Just a warning on the butter....Eli had horrendous diapers for about the first 3 weeks when we started introducing butter and oil into all of his foods last year during his severe FTT phase. Be on the lookout for some greasy, smelly diapers!

Congrats again for such a great 12 month appt. It's amazing to see Truman where he is today after following him since a few days after birth.

10:08 PM  
Anonymous Priscilla said...

Truman's big noggin justs means that he has a lot of brain power and will grow up to be a brainiac! I am praying for all of you every day and sending Truman lots of (((Angel Hugs))) and butterfly kisses.


11:32 AM  
Blogger Erika said...

I have to chime in and and say thank you for keeping this blog. We are rooting for Truman and are thinking of you guys often. Perhaps you should freeze a stick of butter on a popcicle stick...what a nice summertime treat!

2:05 PM  
Blogger Polly said...

Praying for you today, Big Guy! I hope this finds you well and smiling lots and lots.

Sending you Angel Hugs, Praises and Prayers today.

Hugs. . . .Angel Polly

6:51 PM  
Anonymous marniestanish@msn.com said...

Truman sounds like he is doing really well to me. And I am a long time mom who has had all together nine children, not comparing children, but looking over your journal you have a real go-for-it youngster!God love him and bless him! I will include him in my many little prayers!

Marnie from Angel_Wings

1:50 AM  
Anonymous Marnie said...

Dear Baby Truman and family here is a prayer for you.
Isaiah 41:13 ...Do not fear I will help you
and....44:8 ...Do not tremble, Do not be afraid.

Praying little prayers for you all the day long
just for you

Hoping all is well and hoping in you.

Marnie from Angel_Wings

11:58 PM  
Anonymous Anonymous said...

Truman has come a long way...such a fighter.
You are proud parents and should be.
We are still here for you, still praying.

Hope the coming week-end is relaxing and peaceful.


Angel Kate's Grammy


6:09 PM  
Blogger Susannah's Mom said...

I haven't been by your blog in a while, but I just wanted to say happy birthday to Truman! And congratulations to you for reaching the 1-year breastfeeding milestone and for continuing with it!

My daughter was only 4 weeks early, so nothing compared to how early Truman was, but we have had some weight gain issues as well. At her 9 month appointment (so 8 months adjusted), she was 14lbs, 1.5oz, which was only a 14.5oz gain over the last 3 months, and was far below the growth chart. Before then, since birth, she had been somewhere between 5-25% on the chart for her actual age, 10-50% for her adjusted age.

We have started giving her either oatmeal, avocado, or dairy (cheese or yogurt at this point) at every meal (she eats 3 meals a day at this point and was 10 months on Aug 21st). Sometimes we do a combination of those foods. Of course she also eats a good amount of fruits and veggies, and at this point eats chicken and turkey as well.

Out of curiosity we weighed her on one of the produce scales at the grocery store and we estimated that she's grown somewhere from 9-12oz over the past month, so it seems like it's working! We have also noticed that her clothes are starting to fit her better and that her diapers are fitting a little snugger as well. (We use cloth diapers, so it's easy to see the difference.) She can even keep up her 6-9 month bottoms without them falling off her skinny butt, even on the rare occasion that she's in a trim disposable diaper!

If you're at all uncomfortable with giving him butter, you could also add olive oil to Truman's foods. It's healthier than butter and you don't need to add as much by volume to get the same amount of fat and calories. We mix it in with Susannah's food from time to time.

Anyway, sorry for the novel, but I thought I would share the tips that we've picked up over the past month. I am so happy that Truman is doing so well and that he's hit the majority of his milestones!

7:18 PM  
Blogger Susannah's Mom said...

This comment has been removed by the author.

7:18 PM  
Blogger abby said...

Our daughter is also a 23 weeker (born a couple of months before Truman). We're in the same boat as you guys vis a vis the speech issue; it was interesting, but at our last NICU follow up, the neonatologist in charge of the developmental clinic said that increasingly they are finding out that one of the biggest issues with micropreemies is their speech delay. Anyway, in fits and starts, Hallie (who is now 11 months adjusted) is finally beginning to babble consonants. She's not great at or consistent about it, and she still is fonder of her "ayyys" and "eeees" than anything else, but there has been some progress. And I swear that I heard some "elmos" and an attempt to say "baby", too. And if that wasn't funny enough, given that we're a two-mommy household, she's also beginning to say "daddy" a lot. So hopefully Truman will be doing this, too, but I agree that you should push for speech therapy. As always, better too much therapy than not enough.

12:52 PM  
Blogger Jennifer said...

Hi, you don't know me but I found a link to your blog on another preemie's site. I am a micro-preemie mom as well (of a 25 weeker) and loved your pictures. Truman is so amazing! If you ever want to chat about Speech Therapy stuff (related to brain bleeds), you can visit our blog and leave a comment. We are still dealing with this at 3 years. I'm hoping Truman's issues resolve. Gavin also had a big noggin'. They say that is the first thing to catch up. Here's our blog: www.mistergavin.blogspot.com

2:52 PM  

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