Tuesday, January 18, 2011


This past Thursday, Scott, Landon & I hit the icy roads and made our way to Children's Hospital Boston for Landon's appointment with the Ds clinic.  Landon sees a team of therapists and a pediatrician (all who specialize in Ds) about once every 6-8 months.  I guess you could say that Scott & I use this as a "checkpoint" to see how Landon's weekly EI therapies are helping him to achieve different goals and to see if there are any other recommendations that the clinic might have to offer.  After all, this clinic is specifically designed for children with Down syndrome.

I am happy to report that Landon did extremely well and Scott & I were able to have some questions that we had, answered.  Landon's day went something like this:


Landon had his exam with Dr. Davidson and everything looked good overall.  She charted his weight/height/head circumference......and GUESS WHAT??  Landon is officially "TOUCHING" the Ds growth chart for weight.  He was 19lbs. 11oz. and was in the 1 percentile.  lol  I'm just so happy his weight issue is heading in the right direction.  (Looks like his feeding therapy is working.)  His height was in the 10th percentile and his head circumference in the 25th percentile.  Dr. Davidson felt that although Landon is on the small side, he is growing in proportion.  Yay!!  She also gave us a "Follow Up" plan on testing that would be coming up.  It helps having it written on a form with all the info in one place.  She gave us some highly recommended websites to check out (most that we are already familiar with).

Two areas of focus right now are: speech & walking.  Although Landon has 2 ST's a week, I know that this is an area in need of much help.  Dr. Davidson recommended the Augmentative Communication Program as additional help in this area.  Once we figure out Landon's preferable way of communicating, we can tackle this area more directly.  Landon has about 30 signs he uses consistently, we use many different apps on the iPad and he enjoys using picture symbols.  Although he is attempting to put his lips together to make sounds, he is having a difficult time following through. 


We met with Priscilla (PT) for about 45 minutes.  She pretty much did a therapy session with Landon to see what he could do.  As I stated in a previous post, Landon is sporadically taking about 3-4 independent steps now.  I like to say that this skill is EMERGING as he is not doing this consistently yet.  However, we have been watching Landon's feet closely as it appears that he tends to roll in on his ankles.  We have been debating about AFO's with his EI therapists but the con census has always been to let his feet strengthen "naturally".  At this point, this thought process remains, seeing Landon is just now spending more time on his feet than on his hands & knees, we need to give him the opportunity to develop on his own.  With that said, we will monitor his feet closely over the next couple of months and go from there.  Landon has already self-corrected a couple of things in this area......first his right foot turned in, and was later corrected......then it was his left foot, same thing.  His feet are now straight when he cruises.  We just need to give his ankles a little more time to see if Landon can correct it on his own.  With that said, we don't want too much time to go by that could cause any other issues, so we will watch him closely.

Priscilla also noted that Landon would benefit from a lot of sit to stand activities.  This will help him to keep his hips aligned in the correct position while strengthen his legs and ankles at the same time.  Note taken!!  Another thought would be minimal sensory input (via Spio Vest).  Only to be used for certain activities.  Not an absolute necessity, but another option.  If anyone has any input on this vest, please share!!


Landon now has 7 teeth and we were informed that an 8th tooth is making its way down.  Although Landon's teeth have come in, in random order, they appear to be coming in straight and even.  They are slightly jagged on the ends and his molars do have a semi-deep groove.  I am pretty faithful in the brushing area and Landon seems to be OK with this.  His two front teeth are straight but they appear to be very close together.  Possible crowding later on??!!  The recommendation at this point is: if & when we choose to offer Landon juice........stay away from apple juice.  In liquid form apples are super high in sugar.  And because Landon's molars tend to have deep grooves.......stay away from raisins!  Because they are sticky in nature as you chew them, they tend to get caught in the grooves which is a very difficult area to brush.  INTERESTING!!!


This is one of the 2 areas (nutrition/speech) that I was a bit disappointed!  After giving the nutritionist a run down of Landon's daily feeding schedule and an overview of what he has been doing with the Feeding clinic......there really wasn't any recommendations.  Hmmmm!!  I'm not really sure if it was because we are doing everything that needs to be done at this time (with Landon's feeding specialist)??  STRANGE!!  This session took all of about 15 minutes:(


Another disappointment:(  After giving the speech therapist a rundown of Landon's services and what he IS and IS NOT doing, there really wasn't any distinct recommendations!  Not even confirmation that Dr. Davidson's recommendation of the ACP (augmentative communication program) was a great idea!!  WEIRD!!  She sat there making "m", "b", "d" and "l" sounds with Landon to see if he would copy her (hmmm, didn't I just tell her that he does not do that??)  Landon does make all of those sounds.......when he wants to!!!! 


We took a pass on this session, this time around.  Landon will see the clinics ENT, Dr. Lee next month (February 14th).  It had been a very long morning (about 4 hours) and Landon was getting very hungry & tired.  (Mommy & Daddy too:)


Landon is due for his follow up eye exam next month!!  Stay tuned:)

I would like to state that this clinic generally has about 4 different therapists in each area (and 1 pediatrician).  However, depending on your appointment date and the cycle rotation of the therapists, you just don't know who you are going to get.  Although we were disappointed (this time around with speech and nutrition), we generally have been extremely happy with this clinic.  The information provided has always been extremely informative.  I still feel very fortunate to live so close to Children's Hospital and I am grateful to the Ds clinic and all that it has to offer!!

We would love to hear any of your thoughts/ideas/recommendations regarding any of these issues that your kiddos may have experienced!!  PLEASE SHARE!!


  1. Really wish I had something to add.Although Zoey is older than Landon,with all of her health issues since birth,our therapies have been so scattered over the last almost 4 years.in fact,her first 6 months of her life were spent flat on her back so missed that entirely.So in some ways,I am learning from all of you,with children younger.

    Landon seems to be doing really well Kelly.More than emerging in all areas.Slow and steady is our motto and I think it applies across the board with all of our children.And that little guy of yours is finding his way beautifully!Really he is.

    So that is all for my input ... just a big thumbs up for your clinic visit.sure wish we had one locally.I think the nearest is about 3 hours a way.

  2. That sounds like a great check-up -- for Landon -- and for his parents and therapists. Sounds like you are doing all the right stuff =)

    Speech is a hang-up for Anna as well. Although - I have to say, that now that she is up and walking - we are hearing a lot more sounds from her. I would be interested in learning more about the ACP though.

    Stay warm and dry today -- my hubby said you are getting snow up there =)

  3. I think we're doing the same thing with the ankle support. PT's want to wait and see if B can dev. the muscles on his own but he rolls on his ankles as well.

    Spio Vest- to be honest we don't wear it that much because it's a pain the butt to put on. But B has much better posture and I think it makes him feel more stable. Worth a shot if insurance will cover it, if not then it's really expensive.

    Sounds like he is doing really well though! Right there with ya on the feeding. I think they will do it when they are good and ready, I just don't see anything that is going to magically make them want to start feeding themselves lots of things. Frustrating though.

  4. Wow that was a marathon visit but, sounds like some great info. Our DS clinic doesn't have dental or opthamalogy. That would be really nice to hit all those in one trip.
    Sounds like Landon is continuing to progress and do well. Alayna's ankles over pronated and we waited about 6 months to see if they would self correct before going with the sure steps, even in them she is still crawling more than walking.

  5. How nice to have a Ds clinic near you! I don't have any advice in the speech department as Lucas is doing exactly what Landon is doing. No words, sounds and signs but still not understanding the connection. As far as walking, Lucas has AFOs but we only use them for endurance walking holding one of our hands. We met with Pat Winders and she thought that right now he walks much better without so to wait until he is walking well then start using them regularly. I'm not sure what feeding issues Landon is having but it sounds like he isn't self feeding? If that's the case, with Lucas we tried to make it a game, he fed me one, then he gets one. I had to hold his hand the entire time. Of course do it with something he loves. Also letting him chew on slim jims before meals got his tongue used to lateral movement for chewing. You would have to watch him closely with all those teeth ;) We also pureed the table food we were eating and feed it to him.

    I think Landon is doing great and making wonderful progress!

  6. I agree that he's doing great! I'm with Heather, my older DS child doesn't do anything "typical" so with Arina I'm learning from everyone else that has younger kids than Jax!

  7. What a busy day you all had! Sounds like Landon is doing amazing and making great progress! I can't imagine how frustrating the "eating" or lack of must be for you...hang in there, one day he'll get it I just know it!

  8. I am so glad that you posted this. Ever since were in Boston for her heart surgery in October and met Brian Shokto (sp?) I have been thinking about going back for this clinic. Did insurance cover this, or was it rather difficult to get them to cooperate?
    Glad that your son is doing so great! It must be rather flattering to not have additional suggestions in some areas because he is already doing so well!

  9. We are taking Tyson to a DS clinic for the first time net thursday...in Philadelphia Pa- can't wait-

  10. I'm taking Claire into our Ds clinic in a couple of weeks, so the timing on your post was great! I've got some questions for them already, but am making a few more notes based on your experiences. We will just be seeing the developmental ped and the ST, as we already see the PT, Pat Winders, for regular appts.

  11. If you are disappointed with your feeding therapy you might want to check out this website http://childrenandbabiesnoteating.com/ . It has a lot of information on kids who won't eat, why they won't eat and different feeding therapy options. It's a great resource (and has really helped me understand what is going on with my daughter).