The Hailey Herald

The Hailey Herald

Friday, April 5, 2013

Evaluations, Therapy & the Down syndrome clinic

Before we had Hailey, I had visited Cincinnati Children's Hospital once.  I had heard many great things about the facility since had moved to Ohio 13 years ago.  I visited a dear friend's son there a couple of years ago.  However, in the last two years, we have visited this hospital or a subsidiary of it more times than I can count.  I remember driving there in the wee hours of the morning the day of Hailey's open heart surgery.  The streets were fairly empty.  Rush hour doesn't start at 5:30 a.m.  I looked at my husband to say something.  Before the words were out of my mouth, he said, "I never wanted to know this place like the back of my hand, but we certainly do."  How did he know what I was going to say.  We were sad about that fact.  75 hours later, that mood had changed.  Our little girl was "heart healthy" for the first time in her life.  Heart failure and death were no longer looming over our head.  We don't go as frequently for Hailey's heart, eyes, or hearing, but we are there often for other appointments.  Hailey sees her private therapists through the Thomas Center (the Down syndrome clinic).  I loathe the drive downtown every time.  I hate the traffic, but I love her therapists so much that I can't switch.  I spoken before about how your therapists become part of your village.  You trust them, you rely on them.  Your child develops a relationship with them.  Everyone has to click.  We clicked and I don't want to mess with that dynamic.  You've heard the phrase, "If it's not broke, don't fix it."  Hailey responds well and is progressing so we aren't messing with it.

Hailey ready to rock her appointment!

Originally, Hailey was scheduled to meet at the Thomas Center every 6 months.  Unfortunately, the way the appointment is billed and how my insurance pays, the appointment is quite pricey.  We see the same therapists privately that would evaluate her during the appointment so we only go once a year.  The purpose of the appointment is to get an overall check of how Hailey is doing in all aspects:  medically, socially, gross motor, fine motor, speech, nutrition, etc.  I know that people have different opinions of the appointment and the overall appointment can be quite overwhelming for some parents and some of the children.  Generally, the appointment will consist of vitals taken of your child and a quick question and answer.  Similar to what you expect from a well-check with your pediatrician.  In a group setting, you will meet with a developmental pediatrician, speech therapist, occupational therapist, physical therapist, nutritionist, social worker and a nurse.  This latest appointment of Hailey's (3 weeks ago), the physical therapist was out so the OT took over her evaluation.  In addition to all the others, we had a resident attend the appointment.  Hailey wasn't as friendly and cooperative with him as the others.

We were early for our appointment and surprisingly we were called back right away.  The nurse weighed Hailey, checked her length and measured her head.  She then took us into a room for questions. 

I'm sure I can help the nurse with this paperwork!

She asked us to wait there for a few minutes until the group was ready for us.  About 10 minutes passed and the nurse returned.  She said they were tied up in another evaluation and the child was not cooperating so Hailey and I would need to wait awhile longer.  The room we were in was small and extremely warm.  She brought Hailey a few toys to occupy her. 

Hmmm...the nurse is gone, I'm sure she won't mind if I rearrange her desk!

About 15 minutes later, the team arrived.  I think the room was a little small for all of us, but maybe it was just me.  I was extremely worried that Hailey wouldn't cooperate with the evaluation because of our long wait time.  I was partly right.  There were parts that Hailey 100% knows how to do, but refused.  Instead she would smile, stand up and walk away.  Fortunately, the speech therapist is one who knows Hailey so she "knows" what Hailey can and cannot do.  She has seen it and heard it.  My child was quite the stinker.  One part was a giant flashcard with several black images on it.  The speech therapist asked her what do you ride on.  Instead of pointing to the bike (the correct answer), Hailey signed "car" and made car noises.  Smart little cookie.  Hailey refused to stack blocks, but fortunately, I took a picture of her stacking while we were waiting.  I think I almost choked when the OT pulled out a handful of coins and a regular piggy bank.  We've never tried that at home.  I'm not purposely giving Hailey a choking hazard.  I thought for sure she wouldn't get them, but that little girl rocked it.  She put them all in the bank.  I was impressed with that one. 

The nurse let Hailey play with this light up toy...she was mesmerized by it!

At the beginning of the appointment, Dr. O asked how long Hailey had been walking.  I replied that she had been walking a couple of weeks before her 2nd birthday.  Dr. O continued asking me questions while observing Hailey with the therapists.  About 20 minutes later, Dr. O looked at me with a little of a shocked look on her face.  She said, "She just turned two."  It was a combination of revelation and question.  I nodded.  She followed with, "She is doing extremely well."  My mom heart expanded.  Sometimes with all the guilt mom's hold, it is nice to hear you are doing okay. 

After everyone evaluated, the group left the office to confer with one another.  A few minutes later, they came back in with their recommendations and results.  I never did ask where Hailey fell with gross motor.  To be honest, it isn't high on my radar anymore.  Hailey is walking.  We have her walking as much as we can when we are out and about.  Some days it is nearly impossible to have her walk places because we are on time constraints.  She is a "looker".  She wants to explore everything and speak to everyone.  Eventually we need to work on jumping, running, skipping, etc, but right now we need to build up those muscles by walking more and playing outside.  The OT said she is right on track for fine motor skills.  We need to keep working on it.  Play with sidewalk chalk this summer.  Keep working with crayons and pencils.  She doesn't recommend private therapy at this point.  The speech therapist said with receptive language, Hailey is at age level.  Proving that even though my little girl doesn't speak much, she knows what is going on.  She understands.  With expressive language, Hailey tested at 18 months.  Unfortunately, the testing model they use does not count sign language.  If they counted the 50+ words she signs, she would be at age level there, too. 

I left the appointment with several recommendations from each professional in the appointment.  We have no medical concerns at this point so Dr. O said we could come back in 2 years if we would like.  More than likely, we will come back next year, right as Hailey is transitioning into preschool.  At that point, we will probably pick up OT and alternate appointments with them and PT in addition to our speech therapy.  We are also considering having Hailey's sleep study done next year at 3.  She doesn't show huge signs of having apnea, but for some reason I'm paranoid about it.

Hailey likes to stay busy while waiting!

This week we received the written follow-up for Hailey's appointment.  They are all very good about writing the summary treating Hailey as a person and not a number.  She was described as "a delightful little girl who is doing extremely well.", "engages beautifully in a social environment", "beautiful little girl" and "engaging".  I generally loathe the follow-up summary because it depresses me.  This one was good with the exception of one part.  According to the nutritionist, Hailey's weight increased too much from 1 year to 2 years.  Dr. O didn't seem too concerned with it because Hailey has just started walking and we just recently switched from whole milk to 1%.  We watch portion sizes because Hailey doesn't seem to have the "I'm full" trigger or she hasn't learned to listen to it.  We'll keep an eye on it, but most of my kids thinned down once they started walking.

I'm glad that we have a wonderful Down syndrome association in the area and we have the Down syndrome clinic at Children's.  I hope they are a wonderful resource for others as well.


  1. So happy that the appointment went well!!! Hailey is doing absolutely amazing with everything! Yay Hailey!!

  2. That sounds like a great appointment! I love that Hailey signed car and made car noises instead of picking the bike. Funny, smart girl.

  3. Sounds like it was a good appointment and you have a great team of people working with Hailey :)

    I was just thinking the other day that Russell doesn't seem to have an "I'm full button" either. We have to really watch him as well.

  4. Miss Hailey the rockstar! I am happy that her appointment went so well :) I usually walk away not shocked, but still a little down. Anyway, it sounds like Hailey is doing great and I love reading about all your little Hurricane can do!

    btw, we never had to get a sleep study. Her laternal neck x-ray that was taken for AAI clearance showed obstruction by adenoids. Add that to her sleeping sitting up with her head thrown back (which literally just started 1 month ago). . . what Ia m saying is keep an eye out for the signs and if the doc orders AAI x-rays, an ENT should be able tos ee if there is obstruction.

  5. Hailey is doing so well! Good job Michelle!!