Two Year Well Child Visit

On Thursday we visited Ben’s pediatrician for his regularly scheduled checkup. Everyone but Isaac (who was at school) went along. Jonny was worried at first that Ben was going to have a shot, but was very relieved when we reassured him that Ben was done with shots for a while.

Ben weighs 16 lbs 2 oz, and is 27 inches tall. He has gained exactly 4 lbs over the last year. He is right at the 50th percentile for weight for baby boys with CdLS, and about the 25th for height. Our pediatrician was very pleased with his growth.  I am glad that he doesn’t expect the same rate of growth for Ben that he does for “typical” children.

We talked about development. Ben will always have global developmental delays, but he definitely makes slow but steady progress. He will now grasp and play with objects, roll end over end, and can sit unsupported for several minutes at a time (depending on his mood!) He coos, but doesn’t make a lot of consonant sounds. He has recently started to cry and fuss if one of his toys moves beyond his reach.

We talked about his Early Intervention services: right now he gets Physical therapy once a week, Occupational therapy twice a week (which includes feeding therapy), and Speech therapy twice monthly. We still continue to struggle with oral feeding. Sometimes he does GREAT, and opens his mouth up for the spoon (like he did for me tonight). At other times he resists any attempt to put anything edible in his mouth (like he did for his birthday cupcake). We just continue to work with him daily.

Ben is still virtually 100% tube fed.  Right now he is on mostly Nutren Junior formula, and gets a total of about 700 cc over a 24 hour period.  He seems to tolerate his feeds well, and we are just about to increase the volume of his overnight feeds a bit.  (We are maxxed out on how much he will tolerate in his daytime boluses).

We had a couple of new concerns:

  1. Ben needed a letter of medical necessity for a gait trainer of his very own (the one we have now is a loaner). Our pediatrician actually wrote one for us on the spot. Our PT will also write one, and hopefully we’ll get the ball rolling.
  2. We’ve noticed that Ben can ‘pop’ his right hip joint just for fun, and it doesn’t seem to hurt him at all. I can’t tell if the joint itself is unstable. Also, when supported, he walks with his feet pointed out, and his PT and OT thinks the external rotation of his feet is coming from his hips. So we’ll be getting X-rays of his hips to investigate.  At some point he may need to see an orthopedist.
  3. Ben has been horribly constipated for weeks! We’ve tried Karo syrup with very little success. It turns out, though, that we just started Ben on prune juice late last week, and it seems to work MUCH better than the Karo, so for now we’re holding off starting him on a prescription laxative.

We talked about appointments with other specialists.  There aren’t too many coming up in the near future.  We accidentally missed his appointment with audiology last week (oops!) and that got rescheduled for August.  He has an ophthomology appointment next week.  We haven’t needed to see Ben’s surgeons or the g-tube nurse in over a year.  We will probably make an appointment to touch base with Ben’s geneticist over the summer as well.

So things are going pretty well.  We are fortunate that Ben’s health continues to be very good overall.

Our next appointment for Ben at the pediatrician isn’t for 6 months.  Hopefully we won’t have a reason for him to be seen before then.


7 Responses to “Two Year Well Child Visit”

  1. lisa leonard Says:

    Sounds pretty good overall! I think he is pretty close to David as far as his developmental milestones. David didn’t really sit up well until about 2.5 years and then started pulling to a stand around 3+ years. Little by little.

    David has struggled with constipation, too. It’s horrible because when he strains his reflux really flares up. We put him a on lactose free diet about 1.5 years ago and after two weeks he was about 95% better. We still give him prunes everyday, but lactose seemed to be an issue for him. Ben’s problem could be different, but I thought it was worth mentioning.

    Sending you big hugs!!

  2. Karen Says:

    Thanks for the tip, Lisa! If our prune juice doesn’t work, we’ll see if our pediatrician would be willing to switch him to a lactose free formula.

  3. Heidi Says:

    Hi. Thanks for visiting my blog and leaving a comment! I’m happy to ‘meet’ you:)

    I have to wonder how you found my blog. It is funny because when I clicked over here I recognized your blog as one that my husband has been perusing a bit in the last couple weeks. I asked him and he said that he thinks he found it when searching for “clothes for CdLS kids” or something like that.

    Anyhow, just wanted to drop in and say, “Hi,” and also that I looked at some of your pictures and all your kids are lovely.

  4. Karen Says:

    Hi Heidi, and welcome,
    I found your blog on Technorati, under posts about CdLS. I do remember your husband’s comment on a post I did on clothes for Ben. I hope your little guy is doing well.

  5. Sonia Says:

    Glad that the visit went well and that Ben is doing so well. With Natalia it’s the same: slow but steady progress.
    I think the constipation may be comon with our kids, Natalia has suffered from constipation from day 1. We give her 1 oz of prune juice a day and that does the trick… although it gives her some extra gas we take care of by venting her.

  6. Debbie Says:

    We’ve got the constipation too. Do you put the prune juice in the g-tube? I’m not sure she would drink it, and the little bit of apple juice she does take orally goes on the floor, not good with prune juice! We’ve tried Miralax with mixed results.
    I’m glad your ped has a special growth chart. Wish ours did! Even our developmental ped uses a regular chart! So discouraging to be constantly told that she’s not on the chart for weight despite our efforts and her growth.

  7. Karen Says:

    The prune juice works GREAT – we only have to give Ben a 30 cc bolus in his g-tube every other day to keep him regular. Thank goodness! I had thought about trying Miralax if we couldn’t get anything else to work.

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