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.

Thanks Mom....what a great birthday present!

I've been having good birthday celebrations. Mom has even given me cake twice. Wow...it is AWESOME!  I wish they would give it to me all the time but Mom said not to get used to it.  I have received lots of good presents.  I have a baby stroller that they say I'm supposed to walk with.  I can stand but I'm not quite sure my legs know how to move once I'm up there.

I also got a really cool car to drive around outside while the big kids ride their bikes.  Mommy said something about it making me work on my core but I'm not quite sure what she's babbling about.  I just think I look good driving it :-)

My big brothers picked out clothes for me.  They thought I needed Minnie shirts for our trip to Disney this summer.  I liked them because they are sparkly.  My favorite gift was the wrapping paper.  I could have played with that all day but big brother Ian kept taking it away from me.  He said he was afraid I was going to eat it.  I just liked the sound it makes.

My birthday abruptly came to an end when my mommy woke me up at 5 a.m.  I like to get up early but my earliest is about 7!  Then she said I had to eat breakfast.  Really, mom!  I wanted to go back to sleep.  I ate all of my cereal and prunes and then snuggled with mommy on the couch.  At 7 she woke me up again and told me I had to drink my milk.  I never did understand why she made me get up and tell me I HAD to eat until later....  I think I saw mommy eating lunch but she wouldn't share.  No matter how long and hard I screamed and yelled at her.  She wouldn't get me more food.  She gave me some strange orange stuff.  It was okay.  I drank it because she wouldn't give me anything else.

Later we drove to Children's.  The nurses made me strip down to my diaper.  I really wanted to leave my birthday shirt on but they said I couldn't.  The nurse then squirted some yucky stuff in my mouth and I started to get really sleepy.  I don't remember anything after that until mommy woke me up.  I kept trying to go back to sleep but no one would let me.  Mommy said while I was sleeping they checked my heart.  The cardiologist said it looks great.  The patch is doing its job.  She also said we need to watch the pressure on my left side of the heart but the cardiologist isn't concerned just yet.  The audiologist also ran tests while I was sleeping.  She told mommy that I can hear perfectly.  I could have told her that.  I just choose to ignore everyone once in awhile.  I like to be by myself sometimes. Those brothers of mine are quite loud!  I was so very sleepy the rest of the day but Tuesday I was my old self again.

Well....that was until Mom told me I had to go to the pediatrician and I needed shots.  I thought this was my birthday week....yucky medicine that makes me sleep and shots...then they took blood from my big toe....not the best birthday presents if you ask me!  The nurse didn't think I could do a bunch of stuff but mommy corrected her.  Mommy seemed a little miffed at the nurse but quite pleased with herself when she corrected her.  I even added to it by 4 point crawling on the exam table in front of the nurse.  I guess that will show her not to under estimate what I can do.  My mommy was really proud of me then!  Her and my big brother started cheering.  Wonder what the big deal was?  The doctor said I'm growing well (I weigh 18 lbs 4 oz, but the hospital said 18 lbs 8 oz the day before) and everything else checked out.  Mommy seemed very happy when we left. 

I have more family coming this weekend.  I bet that means more presents and lots of attention!  I'm not sure what the big deal is about turning 1 but everybody seemed excited.  I saw mommy cry a few times and looked at me kind of funny but she always followed it by a big hug and kiss so I guess everything is okay!

It's time for my nap so I will talk to everyone soon!

Another birthday outfit.  Mommy said we will celebrate all week!

I think I'm very funny!

Ian wouldn't share the iPad so I decided to take it myself!

A sigh of relief

We enjoyed the Labor Day weekend.  On Saturday, we spent the day celebrating our friend's little foster son's 1st birthday.  God answered our prayers when Hailey sailed through her open heart surgery.  We are hoping that it is in God's plan to let our friends adopt this little boy.  They have so much love to give him.

Checking out the new dress

All ready for the party

On Sunday, my parents and grandfather came to see the kids.  It was the first time Hailey has seen her great-grandpa.  His face lit up seeing our little peanut and she flashed her dimples.  Monday was spent enjoying the cooler temperatures outside. 

Today, we headed down to Cincinnati Children's Hospital for Hailey's 6 month ophthalmology appointment.  I'm hoping there will come a day that I can take Hailey to Children's or any other appointment without all my emotions sitting like a lump in my throat.  Today definitely was not one of those days.  This appointment was in a different building than all our other appointments.  The hospital can be a very overwhelming, confusing maze to navigate.  Eventually we made it to our destination a little stressed.  I was struck how raw the next emotions were.  The first four families we passed as we approached the doors were parents with children with Down syndrome.  They were the most beautiful children but they immediately brought tears to my eyes.  I swallowed the lump in my throat and blinked away the tears.  I'm not sure why I reacted to them the way I did.  I honestly haven't seen many children with Down syndrome since Hailey's diagnosis other than the pictures I look at online.  I think it might have just been seeing them in person and me being so stressed on top of it.  But, I guess I need to remember....everyone who knows me, knows how emotional I am.  I'm the one who cries through Hallmark commercials, sobs through Lifetime movies and even cries through the entire end of Extreme Home Makeover!

Hailey's appointment was long.  Our initial wait was only a few minutes.  The technician covered all the family and Hailey's medical history and performed a couple tracking exercises with Hailey.  The doctor followed shortly along with an ophthalmology fellow and a genetics fellow.  The tears were close to emerging once again.  The genetics fellow was with the geneticist the day of Hailey's initial examination/consult for Down syndrome.  All the emotions from that morning were very close to the surface and very raw.  I countered with chit chat about how much better Hailey looks now versus how she looked the day of the consult.  Fortunately that worked and the tears stayed at bay.  The ophthalmologist examined Hailey watching different toys and with different lights.  I'll be honest, I'm not even sure what all he did because I was holding her and couldn't see the other side of what he was doing.  I told him that we do see some eye jittering and an occasional crossing of her eyes.  The doctor said he did not see any eye crossing and he was trying to get them to cross.  It was a good sign that her muscles are controlling it.  He does see a slight nystagmus, which is involuntary eye movement.  At this point, he doesn't feel that it is a huge concern or much out of the range of normal.  He wants to look at it again in a few months to see if anything has changed.  At this point, he said he wanted Hailey's eyes dilated and said he would examine them again.  Unfortunately, they were super busy today.  The nurse said they could come get us in about 30 minutes.  Well...it was an hour and twenty-five minutes later.  Ughh....

Here is little peanut patiently waiting to be called back into the office.

Good think I have my toy

Getting tired of waiting and getting loud

Oh well, I think I would rather take a nap.

 After we were finally back in the office, the doctor looked at the inside of Hailey's eyes.  He said that everything looked good.  She doesn't have cataracts, her optic nerves are good and she doesn't need glasses.  She has a follow up in January to see if anything with her vision and nystagmus has changed.  I am very grateful that her eye appointment was uneventful and that Hailey has been so healthy since her heart surgery.  I thank God for that every day but I know that I will have the "white coat anxiety" when the next appointment comes before us.