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!!