CDRC Down Syndrome Clinic 2016

Jordan, Brian and I went to the Down Syndrome Clinic for the second time on Friday. We went two years ago and it felt time to get another comprehensive evaluation done. I find it helps me to project the near future a little bit and make those needed decisions.

On Friday we saw: Audiology, Neurologist/Developmental Pediatrician, Speech therapist, Occupational Therapist, Physical Therapist, lab.

Audiology found that both Jordan’s T-tubes are still in place and functioning. That’s good news. I haven’t had them checked since the follow up from when they were put in two years ago. (Had a negative ENT experience) Then the hearing test – he passed with decent numbers, though his hearing is probably slightly better than shown.
My notes: For the sound booth hearing test, Jordan put toys in and out of a bucket with me while sitting in a chair. The audiologist played a quiet sound and reinforced his glancing towards the speaker with a little light and moving toy there. Jordan SAT. Jordan LOOKED. Jordan LOOKED AGAIN. Two years ago, there was absolutely nothing interesting to him about his name, “uh-oh!”, or white noise coming out of a speaker. Jordan is so much more aware of the world and so much more curious than before. It was a proud moment for me.
When the little things were put in his ear one at a time to check the pressure in his ears with an air puff (which showed his tubes are open) – he did not scream, yell, panic, or yank it out of his ear. He sat on my lap and I held and talked with him, but he did so very well. This was a traumatic process in the past.

Doctor: We asked some questions of the doctor about getting Strep Throat so often, asked for a copy of his sleep study 1 1/2 years ago, and asked what the follow-up procedure for ear tubes is. He asked his own questions and checked Jordan over. This doctor is pretty great and he also runs about a million miles an hour. We forgot his sleep study (he will email it to me later), decided not to do anything about strep throat and got a referral to ENT. Jordan has lots of flaky, dry wax in his ears, so he couldn’t see anything. He did pull up Jordan’s sleep study and looked it over briefly. It showed Jordan was awake a LOT last night. Many arousals. Something like 62 if I remember right. And I recall that he slept better than usual that night. The doctor said we could go back for another sleep study, but this time have it be about behavioral sleep rather than sleep apnea. I think that means we talk to a doctor about sleep medicine stronger than the Clonidine he takes now. (Trazadone, for example) I’m undecided about whether to pursue that or not.

Speech Therapist: We sat in a room with two speech therapists. By this time, Jordan was pretty stressed out. The therapist tried to engage him, blowing bubbles, holding hands and singing songs, etc. Jordan wound up and up and up, becoming really rowdy and obnoxious, throwing everything and pushing people around. After a bit, I intervened and made him sit quietly in a chair while I sat on the floor right next to him. We talked quite a bit while I kept Jordan calm and interacted with him a bit. I felt like a million bucks that I was able to “speak” to Jordan so much better than a speech therapist. In his defense, he was young. 🙂 Brian talked with the main speech therapist the most while the younger man tried to interact with Jordan. She spoke about Jordan’s communication being very concrete. He understands things he can see, not sign language that has no actual physical connection to what you’re doing except by association. Zeroing in on that one fact will, I think, help us to engage him primarily on that level and gradually make communication more symbolic.

Occupational Therapist: The OT sat with us on the floor while we talked and let Jordan be alone in the corner by me for awhile. He was rocking and making one of his repetitive rocking noises the whole time. It was some much needed quiet stim time for Jordan and I was glad she didn’t push him. After we were done talking, she went by him and tried interacting with him with a few toys, most of which measure fine motor development. He picked up some small beads with his thumb and pointer finger several times and raked some. I think at the end of the appointment, she said he scored somewhere in the 12-14 month old range for fine motor. I’m not worried about that – as his interest in the world develops, he’s becoming more motivated to try using those fine motor skills. She was really good with him; I was so grateful she was better with him than the SLP guy. She kept working with him while he rocked and he seemed glad for it too. You knwo what? He stacked a tiny (1″) block on top of another block. Pretty awesome! No action items from this visit. I’m looking forward to getting their report in the mail to see what else they figured out.

Physical therapist: PT is one of Jordan’s favorites. He ran down the hall for them happily (he does have a true run gait now. Well, it’s not a walk gait anyway). In the gym, he climbed up on the structure and slid down the slide, went up and down stairs and followed a fun flashy toy around and helped pull it around with a string too. They kept making comments on his looseness in knees, felt his hips a lot while he was on the stairs, and flexed his feet and ankles around with much appreciation at his looseness. We talked about getting some orthotics for him to help support his arch. Then we put on his shoes and watched him and they had to start their brains all over, because he walks very differently with shoes on. Maybe because they are a bit big? Anyway, they said they needed to think about it a bit. We asked them about strollers/wheelchairs for kids who developmentally need them even though they can walk. They thought they may be able to get one covered by insurance and will schedule us for another visit with a vendor… after which they will try and get insurance to cover it. These “strollers” are really wheelchairs, though they look more like strollers. Anyway, i had tried getting one independently with zero success, so it feels really good to have somebody on my team. Jordan needs a stroller that fits him and he does not fit well in baby strollers any more. He puts his feet on the ground, gets his hands in the wheels, bonks his head, etc. He is tall for a 6 year old with Down Syndrome!
Lastly, they laid him on his back and felt his hips. There was some talk and more moving of hips and pulling of legs. Then the other PT did it. Then they called in the doctor. Seems Jordan’s hips don’t stay in the socket very well. They were concerned that because of his history in the orphanage, not weight-bearing, that his hip sockets may have issues. Because being mobile is such a big part of Jordan’s life (it is a strength of his and he loves to move!), we got a referral to an orthopedist at Shriners, where we’ll talk, have him examined and get some x-rays. Please pray that his hips are ok and that the joints are beautiful and round and where they should be and that he just needs some more strength?

Lab: Got just two things drawn – Thyroid panel and Vitamin D. His Vitamin D was low last time. The lab guy was AWESOME and Jordan was upset about being restrained, but don’t think he even noticed getting poked.

So – three referrals: ENT, wheelchair vendor, orthopedist