Friday, February 11, 2011

Sie Center for Down Syndrome Visit

On Tuesday Claire and I braved the snow, cold and icy roads to go to our appointment at the Sie Center for Down syndrome.  I'd given myself extra time to get there, but we still ended up just making it to the appointment on time.  The trip ending up taking about 40 minutes longer than it usually does.

Prior to the appointment I'd faxed Claire's medical records, and I'd talked to the program coordinator a couple of times also.  This was wonderful because we didn't have to spend any time the day of her appointment going over her records or history.  The appointment started with the usual dr office things, weight, temp, blood pressure, etc.  The overall appointment took 3 hours, one hour each with PT, ST and the Dr.

PT:  Claire sees Pat Winders monthly, so this was just our normal appointment with her.  Right now the three skills we are focusing on are cruising along furniture, taking supported steps and climbing the stairs.  All of them are hard for Claire, so we are only able to practice a time or two before she won't cooperate anymore.  Claire cruises decently to the left, but really fights going to the right.  Her right leg planted firmly on the floor seems to make her feel safe, and she hates picking it up to take a step.  When we practice stepping we usually lean her over a surface (like a rubbermaid tub) that can be scooted along the floor.  This gives her something solid for support, but it's still easy to move, so that she has to take a few steps. 

I need to find some way for Claire to practice climbing the stairs.  We live in a bi-level, so one set of our stairs leads to a tile entryway.  Not real comfortable to climb onto, but manageable.  The other set of stairs has the gate at the top, so it doesn't work for climbing at all.  Pat and I were discussing this and she wondered if pet stairs (to help little dogs get onto the couch or bed) might work...Has anyone ever tried this???

ST:  Our usual ST, who we see privately, just had a baby.  After skipping appointments over the holidays, it had been quite a few months since Claire had seen an ST.  I was very glad to have one available through the clinic, and she knows Talk Tools as well.  Since Claire's last ST appointment, she started drinking from the straw, and my main question was to make sure she was doing it correctly.  Turns out, she isn't.  While her mouth is closed, she is taking too much straw into her mouth and is suckling it with her tongue, instead of using her lips. 

Dr:  Dr Hickey was very personable and very easy to talk to.  We chatted about Claire's general health and specific concerns I had as well.  Claire has been struggling with sinus infections all winter.  She finished her third round of antibiotics last week, but after about 48 hours, her eyes and nose starting oozing goop again.  So, last night we started round 4.  Dr Hickey thinks it is just winter and that once we get through the miserable weather, she should get over all this stuff. 

We are also transitioning off the bottle slowly, and are down to 2 a day.  As we make this change, I wanted to be sure Claire was still eating and drinking enough.  Dr Hickey said average milk consumption should be around 16 oz a day.  She is easily getting that between her bottles and the cup, with some water as well.  For meals, he said about a tablespoon or two of each food, with a couple of options offered.  I'd given an example of her dinner the night before (2 beef ravioli with sauce and some green beans) and he said that was a great portion size.

The other nice thing about the Ds Center is that it's great to have someone else help keep me organized on what upcoming appointments Claire needs.  We have an audiology screening next month, we will repeat her swallow study this spring, and then she will have her vision tested at 18 months.  After all those appointments, in 6 months, we will have another appointment at the Center.

For Co People:  I've had some people ask about seeing Pat Winders for PT.  Her schedule gets booked FAST (we already have appts through July).  If you want to see her for a consult, and are interested in the Center, that may be the best way to see her.  Right now, the Center's schedule is fairly open.  We scheduled our appt for a little over 2 weeks out because it matched up with other things, but we could have gotten in sooner.  If you want to schedule an appt, here is the info.


  1. I am SO JEALOUS! DR. Hickey was Kate's pediatrician, her regular well visit everyday pediatrician until he left to take this position. He is wonderful and I miss him so much even though we didn't spend much time with him because Kate was so healthy. After he left and we switched Kate only then did I learn the message he was so gently trying to get across "Kate is more alike than different". Down syndrome will not run your lives and she will bless your family a thousand fold. This is his passion, he lives to help our kids. You are BLESSED to be able to attend such a wonderful facility. We have something similar in Cincinnati but I didn't really need it being that Kate saw Dr. Hickey. I have actually shared emails with Michelle who is on the board and she is lovely as well.
    Your baby couldn't be in better hands.

  2. Sounds like everything went pretty well then. I hope to meet Dr. Hickey someday, he sounds great.

  3. Yay for positive Ds clinic appointment!! And lucky you, Pat Winders!!! I always feel so much better after we go to's a great check-in to make sure all the services our kiddos are receiving are right on track!! Glad to hear that everything went well!!

  4. I better check Arina's milk consumption. She has a bottle 3 times a day, 8 ounces each. And sometimes 4 ounces before she goes to bed. I've been going down a little when she eats babyfood, but without food milk is her primary nurition. 16 ounces is only two bottles for her. Does Claire eat a lot of babyfood?


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