Benji-Ben Update 11/08


Ben is now two and a half years old.  He is usually a happy, easygoing little guy who loves attention and outings.  He continues to do very well overall, although we are still working through some challenges.

His overall health is excellent!  He is rarely ever sick (knock on wood).  The last two winters he got Synagis shots to ward off the dreaded RSV, but this year he won’t be getting those.  We’ll have to make sure the two big boys wash their hands thoroughly when they get home from school.  Ben still has a tendency to get constipated (it’s one of the few things that makes him truly miserable), but that seems to respond well to a combination of fiber-enriched formula, prune juice and the occasional dose of Miralax.

He is still basically 100% g-tube fed.  He gets 4 bolus feeds during the day, and a continuous overnight feed as well.  Recently, we have been able to increase his daytime boluses, and he has been growing well for a little guy with CdLS.

He still wears hearing aids, and soon we’ll be getting a detailed ABR test for him that will probably be done under sedation.  For now he tolerates the aids well, although every so often we’ll find him holding one.  We just had his eyes checked last week.  Unfortunately, it looks like his nearsightedness has worsened, so we’ll probably be looking into getting him some glasses.  I’m not so sure how he’ll take to those since he resists having things on his face, but it’s worth a try.  We are also supposed to patch his left eye for one hour each day because of his strabismus, but we’ve not been as diligent about that as we should be.  Ben does seem to tolerate the patches much better than he used to.


He seems to become more mobile every day!  He has been rolling for several months, but it has only been in the last month or two that he has realized that he can roll to (or away from!) people or objects.  He has just learned that being on his tummy can be fun.  Who knows?  He might learn to ‘army crawl’ soon.  We practice walking and cruising with him, but he doesn’t seem to quite get it yet.  He enjoys standing at his Exersaucer, but doesn’t seem to quite understand what he is supposed to do in his gait trainer.  He can sit very well, but has a tendency to throw himself backwards when he’s tired of sitting.  He is just learning to catch himself with his left arm when he tips over.

Socially, he is very interested in watching his big brothers run and play.  He is just starting to notice Nate more, and has started imitating some of his baby sounds!


He still gets physical therapy once a week, speech therapy once a week, and occupational therapy twice a week.  We LOVE our therapists.  They all do a great job with Ben, and can usually get him to cooperate with them.  A little over a week ago, we met with everyone to begin planning for Ben’s transition into preschool.  He will likely be attending a local preschool for children with special needs.  He will be having a formal evaluation for that in March of 2009.  I can’t even begin to imagine sending Ben to school in six months!


By far the biggest challenge we still continue to face with Ben has been getting him to transition to oral feeds.  We have been working on this almost since Ben was born, but with seemingly very little real progress.  There have been a few occasions where he’ll do amazingly well (see the photo above), and then the next few days will refuse to eat anything at all, and we’ll have to start all over again almost from scratch. We just went through another episode like that in the last week.

I find this extremely frustrating.  Our occupational therapist is great; she has worked with Ben since he was just a few months old, and we know that a lot of this is a behavioral issue with Ben (he can be quite stubborn when he wants to be!)  She is very gentle and patient with him, but persistent.  And I think that’s what seems to work best with him.


So our journey continues.  It’s not always easy, but all the same, I love being Ben’s mom.

19 Responses to “Benji-Ben Update 11/08”

  1. Heidi Says:

    I enjoyed reading your update about Ben. The most common question I get is “can he take a bottle yet?” When (if)we get the green light to try, I have a feeling it is going to be very hard, like you described with Ben.

    I like the picture of him sitting next to his baby brother best of this lot.

    May I ask you how you know he is nearsighted?

  2. Dawn Says:

    I LOVE the photo of you and Ben, Karen. Absolutely gorgeous.

  3. Rachelle Says:

    Love the photos and that is a wonderful update. I’m glad Ben is doing well. He sounds a lot like Joey ~ he can be very stubborn too! ;o) You have a beautiful family!

  4. Rhonda Says:

    Stubborn, hmmm. Seems to be a theme. Sean is stubborn, too! Thanks for the update. The pictures were great – I love the one of you and Ben.

  5. Leslie Says:

    I LOVED reading this blog. The pictures are beautiful! I am so thankful that I found this blogging site because it makes me feel so much at home reading so many of these posts. He is a beautiful little boy, as all of your boys are! You have a beautiful family!! I look forwarf to getting to know you & your family & hope you enjoy reading about mine!

  6. Sandi @ Life with Jessica Says:

    I enjoyed reading Ben’s update, he’s doing really well! The picture of you and Ben is wonderful 🙂 His new haircut is adorable and he looks a lot like his big brother Isaac.

    Interesting you mentioned Ben learning to catch himself with his left arm when he tips over. It took Jessica the longest time to do that…she would never put her arms out when she tipped over or fell, she’d just go right over on her face. Amazingly she never got hurt!

  7. Deni Says:

    Cheers Karen. Just as Leslie has commented, it really is great to see where each of the bubs are at, and to learn from each other. In these early days, as we are with Tae, it is easy to get lost, not knowing whats ahead is scary, so it is wonderful to have this community where we can all be supportive through the challenges and celebrate those victories!

  8. Lawrence Says:

    Karen, that’s a great picture of you and Ben. I know that the blog is about the boys, but we, the readers, love to see you every now and then!

  9. Karen Says:

    Heidi: I hope you have an easier time than we are having. Our optometrist knows that Ben needs glasses because after dilating his pupils she examines his eyes with a retinoscope. It’s one way of estimating refractive errors on very young kids. Basically, the doctor shines a moving light into Ben’s eyes, and holds a couple of different lenses in front of his eyes until the light focuses the way she wants it to on his retinas. It’s not an exact process because Ben is wiggly, but it’s the best we can do!
    Thanks, Dawn! Mark does take good photos sometimes! 😉
    Welcome, Deni and Leslie! I enjoy both of your blogs, and I am glad that we have this online community too!

  10. lisa leonard Says:

    What beautiful post. He is doing so well. I remember it took FOREVER for David to roll, sit, cruise, walk. Ben is still so young and he’s doing great. I am so glad you hear that you are doing well and it seems like you guys have a good rhythm. Hugs!

  11. mom/grandma Says:

    Wow, I like all the pics, esp. the very first with you and Ben. I can hardly believe my eyes……….Ben standing. He looks so big now. Good going Ben!

  12. misty Says:

    love to see that Ben is doing SO WELL!!!! I need Ben to come to Colorado to show Mason the ropes! 🙂 GREAT pictures! give him a squeeze!

  13. Maureen Says:

    Wow! It sounds like Ben is doing great and he’s looks adorable. Aside from eating, he sounds like he’s doing so well. And I’m impressed with how much therapy you get. That’s awesome.

    Can I ask how long it took for Ben to sit and roll? Hope is still very wobbly with sitting (she can last on her own for about 10 seconds at this point and then falls) and has never rolled on her own from her back to her stomach.

    Thanks for the update! It’s always great to read about Ben and your family. Happy fall!

  14. Karen Says:

    Thanks, Maureen!
    It’s difficult to say when Ben actually achieved certain milestones because in many ways he’s still working on them! He started sitting unsupported for several minutes at a time around 18 months, but even now, a year later, he’s still not perfect at it.
    As for the rolling, he was around 16 months before he could roll in one direction and 20 months old before he finally learned how to roll end over end, but it’s only recently that he’s doing it purposefully as a means of locomotion.
    He definitely develops in slow motion! 🙂

  15. Heidi Says:

    Thanks for answering my question about the eyesight. So far we haven’t been referred to an eye doctor. I will ask next time we see the geneticist at what age he should start going.

    And I agree with everyone that these posts are very helpful in addition to just plain being fun to read.

  16. Leah Says:

    What a great post. I love hearing all about Ben! So about glasses. If it comes down to him needing him, there is a place called who makes frames specifically for kids who have Down Syndrome. I notice that Ben has a lot of the same features as a 2 year old who has DS. (very little nasal bridge, lowset ears, etc) These frames might be helpful to you. Who know? As for transitioning to oral feeds, we’ve been through that! Drop me an email at deanleah at comcast dot net and I’ll tell you how we did it.

  17. Lara Says:

    Love the picture of you and Ben, Karen…. gorgeous. So good to hear of all the progress Ben is making…he is such an adorable little boy.

  18. Sara Says:

    I just love reading about your handsome men! It sounds like Ben is making great progress. Transitioning to oral feeds is one of my biggest battles too. I noticed Ben’s Veggie Tales jacket in the fall pictures – my Peanut has a blanket made from that same exact fleece! 🙂

  19. Jenni Glad Timmons Says:

    great to hear your story and ongoing journey. My daughter Emmi will be 2 and it is interesting to see what others at that age are doing…have a great holiday with your family and thanks for sharing!

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