Teeny Tiny Truman

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

Wednesday, October 24, 2007

Slightly better on growth


The weather finally turned in Dallas which means two things: cooler temperatures and changing leaves (which we love) and RSV season isolation (which we don't like at all). Truman continues to be everywhere all at the same time with crawling and pulling up. He has learned, however, how to get down from pulling up without falling, which is a huge relief for us -- a lot fewer bumps on his head and fewer boo-boos to console. We've also finally installed baby gates to the stairs and the area with the cat box and cat bowls, so that makes him a lot easier to keep up with, too.

He continues to "talk" more and more, and although he is focusing on the same syllables, "da" and "ga," he seems to be using them more every day. Ben says he talks a lot more when I'm around than when it's just the two of them. Hmm ... wonder where he gets that from? With only one word and only two syllables, along with the failure to drink from a cup, hold a bottle, or eat any non-crunchy finger foods, we've been given an Rx to start weekly speech therapy.

Truman is currently working on four teeth across the top. It took some Tylenol and three tries over the course of an hour to get him down to sleep to stay Tuesday night, so I think they are definitely bothering him. However, in the sleep world, he seems to have hit a milestone. He has gone more than a week now without his middle of the night nursing session. Yippee!!

Truman had his annual therapy re-evaluation on Monday. We will get a full report later, but initially Beth said that he has sensory integration disorder / issues. Basically that means that he can't organize all the sensory inputs coming into his brain and thus has trouble paying attention to anything without getting overwhelmed or tries to engage multiple senses at once since he can't figure out how to process one at a time. She is recommending moving therapy to twice a week to work on this (and whatever else the final report shows) to make sure that the sensory issues don't interfere with learning. In the world of micro-preemies, I don't think I even know any who don't have sensory integration disorder. Particularly with micropreemies, when your brain is forced to interact with the world before it's ready, it tends to go a little haywire in the process (thus, the brain bleeds way back in week 1). Although we would love to get a clean report on Truman, we know that's not going to happen, and I am reminded over and over as to how many bullets we have dodged and how fortunate we are to have great resources available, the means (i.e. good insurance) to afford them, and a pediatrician who supports a proactive response. Fortunately, Truman's new insurance will cover unlimited therapy.

Truman had a check-up yesterday, and he has improved to 8 grams of weight gain a day -- slightly better, but not good. We spent some time discussing what could be done to help him grow more, and we concluded that we are really doing all we can and that Truman may continue to struggle for a long time -- or perhaps always -- with growth. It just seems that he has a max volume of food that he takes in, whether in liquid or solid form, and that we all we can do is pack it as full of calories as possible.

Dr. Suterwala was not surprised at all about the sensory integration disorder evaluation by the therapists and gave us a 2007 study out of the UK on 23-25 weekers who are now 6 and they are doing now that they have started school. It talked about some of the sensory-related issues along with other cognitive and motor issues. It's not the most encouraging of studies, but we want to be informed because now we are entering into uncharted areas beyond just whether milestones are being hit, but how they are being hit and behaviors, habits, delays that are not visible to or seem normal to the untrained eye. Because of the evaluation from Truman's therapists and our discussions, Dr. Suterwala has written orders for two occupational therapy sessions a week, one physical therapy session per week, and one speech therapy session a week.


Blogger abby said...

We were really happy to hear that Truman is having better growth; even if it is not stellar, he's on his own curve.

If you guys get a chance to PDF or scan or what have you (or are willing to snail mail us) the study Dr. Suterwala shared with you, we'd be most interested. Hallie (our 23 weeker) has some signs of Sensory Integration Disorder and we're also very keen to stay on the lookout for what to expect and how to best intervene. We also know that it's unreasonable to imagine that we'll emerge from this whole experience unscathed, but as long as we can help Hallie be the best possible Hallie she can be, we'll be happy.

You can reach us at abbyschrad AT earthlink DoT NeT.

3:08 PM  
Anonymous Anonymous said...

I think that it is great that Truman has such pro-active parents. Our son was also born prematurely, and is recieving multiple services, which we are seeing great progress with. Keep up the great work.

3:20 AM  
Blogger TracyKM said...

My son wasn't a preemie, but had a traumatic, poorly managed, birth. It took several YEARS to get the SID diagnosis. I heard everything from "He's your first/he's a boy/he's a redhead/he's 1/he's 2/he just became a brother/he's almost 3....We were able to have a limited amount of OT, but growing older has made a huge difference--as he's learned how to cope and verbalize. I also learned alot about myself. I was 5 weeks early, but spent 3 months in the hospital. I too have MANY SID characteristics...I just thought it was 'me'.
Each of my 3 kids have had/will get speech therapy...each one much younger than the previous! The fact that he's babbling 'ga' and 'da' is great---#3 never babbled; just screamed, LOL. Just yesterday, at 23 months, she said her second word "Moooooorrrre". I nearly cried. The struggles are hard, but the rewards make you SO appreciative!

5:29 PM  
Blogger Heidi said...

Can we join Abby in asking for a copy of that report? We don't see Suterwala again until January and we would love to read up on the findings, if you do ever make an electronic copy. I'm hthaden at gmail dot com. Our Bennett was a 23 weeker, too, now almost 3 years old.

I heard about your blog from another Baylor mom and I've loved reading Truman's updates!

10:47 PM  
Blogger sherrillfamily said...

Ben & Kara,

My name is Kelly Sherrill and 11 days ago I had a micro preemie. Someone sent me your web site today and when I found out what you have been through I feel like I have found a lifeline. I can't find a way to contact you so PLEASE will you contact me. Kyle, our son, has been diagnosed with a grade 3 on both sides - I have neve been so scared - but to see pics of Truman - smiling and crawling up the steps.. I can't tell you the excitement I felt and such hope. Please email me if you can. I could use the encouragement - it is hard to find people that have been in these shoes. Our doctors are being very negative and I just wondered if you would mind sharing your experiences. THANK YOU!
our son's web site is www.prayforkyle.com.

Kelly Sherrill

11:57 AM  
Blogger sherrillfamily said...

your story feels like a lifeline to me right now. 11 days ago Kyle was born at 23 wks 5 days. He was 1 lb 5 oz and 11.5 inches long. He has grade 3 brain bleeds on both sides. I have never been so scared as when I heard that news. seeing Truman in those pictures was like hope rushing over me! Will you please contact me by email I would love to hear what doctors told you and how your story went. It is so hard to find anyone that understands where we are. Please email - and Thank you for being so bold as to share your story. Our blog site is www.prayforkyle.com. PLEASE email - Thank you.

Kelly Sherrill

12:10 PM  
Blogger Jennifer said...

Hey Kara! We actually went to HighSchool together, so one of our classmates sent your blog to me. I am a speech therapist, I live in Plano. Just please remember that study was 6 years ago, and we didn't really get those kids in therapy immediately like you have done. There is such a great chance that Truman will handle his environment better since he is getting such great therapy so early. You are doing an AMAZING job! Don't forget that!

2:44 PM  
Blogger Polly said...

Hi there, buddy.

Just stopping by to let you know I am thinking about you and praying for you. I know the Lord hears and answers prayers.

Sending you oodles of Angel Hugs, Kisses, Praises and Prayers.

"Behold, children are a gift from the Lord."

8:20 PM  
Blogger tomeckom said...

I've commented on your blog before. My Nick, but Kenny is doing wonderfully! He is home with us now. I love following your blog because I kinda get to know what to expect...somewhat. You truely are special parents. Truman has become part of our family's lives because of our little Kenny! Thank you for giving me and others hope that our 23 weekers will survive and grow. I read so much about 25 weekers...even 24 weekers...but not too many 23 weekers. Here is my story on a movie that I put together...


11:35 AM  

Post a Comment

<< Home