The Hailey Herald

The Hailey Herald

Wednesday, September 21, 2011

Such a trooper!

Here are a few pictures from the weekend

You want me to do what?

I might get this sitting thing down pat sometime.

Big brother Ian wanted in on the pics.
Self portrait - he is turning into our resident photographer.  Not bad for a 4 year old!
The green beans weren't too exciting.  Can we try something new next time!

There will come a day that she will not let him get this close!

Hailey has proven time and time again, what a trooper she is.  Today was no different.  This morning she had her appointment at the Thomas Center (the clinic for Down syndrome at Children's hospital).  I've dreaded this appointment since the day we made it.  I'm not sure why.  I take that back, I do know why.  I daily struggle with the worry that I'm not doing enough, I'm not doing things right, etc.  I have this fear more with Hailey than I have ever had it with the boys.  Today's appointment was positive.

Cincinnati sees plenty of rain and snow throughout the year but every time we get either, traffic is a nightmare.  Well, this morning it was drizzling and foggy.  Double whammy!  We live about 30 minutes from Cincinnati Children's Hospital.  I dropped of the last of the boys at 7 a.m. this morning and made it there with only 5 minutes to spare.  I hate being frazzled and running late for an appointment.  Me, the throws me off.

Miss Hailey was all smiles when we were called back for our appointment.  I think she turns on the charm for medical staff.  She loves to show off that toothless grin and dimples.  Today's appointment was to establish a baseline for Hailey and make sure that she doesn't need any additional therapy or medical referrals.  Making sure Hailey is on the right track.  We started with height, weight and head measurement.  Our little piggy has gained 8 oz since her pediatrician appointment last Monday!  She is up to 14 lbs 10 oz.  It is amazing how great she can be with a mended heart!  We were then escorted into a very large examining room with a huge padded surface (can't call it a bed because it was huge but it wasn't a mat because it was elevated).  The medical assistant asked a long list of questions.  Then the entourage entered.  I've decided that every appointment at Children's includes an entourage!  I know it is a teaching hospital but sometimes it can be a little overwhelming.  Today's appointment included:  the doctor that oversees the Down syndrome clinic, two speech therapists, an occupational therapist, a physical therapist, a nutritionist and a social worker.  They evaluate patients as a team because a lot of their questions and information overlaps.  It seemed like a little much at first but once we started things flowed perfectly. 

Hailey was in the middle of the padded table rolling and laughing.  She showed them unprompted rolling from back to stomach and stomach to back.  She reached for toys and refused to give them up.  She babbled some (she is such a stinker!) and responded to her name.  She communicated hunger and flashed that gummy smile frequently.  Each therapist took a few minutes working with her.  She was a very cooperative patient.  She finally refused to do anything but smack her lips basically begging for her food.    They wanted to watch her eat baby food and also drink a bottle.  Honestly, we have never had her eat food followed with a full bottle.  The timing was never the same.  I was crossing my fingers it would work and it did.  I answered questions in between and during her exams.  Some was history of her birth and surgery.  Others were home life and current therapy and activities.   We discussed our fears with Down syndrome, perception of Down syndrome and the future. 

After about 2 hours, Hailey's appointment was over.  They evaluated her at 6 months...she is 6 months and 3 weeks.  I'm happy with that.  Everyone wants their child to be an over-achiever but I have to be realistic in the fact that she was 4 weeks early and had open heart surgery.  They are going to send me a full summary of the appointment but I remember most of it.  They were happy with how her feeding went.  They said her tongue thrust is minimal.  We are going to continue working with purees for now.  She is going back in a few weeks to work on phasing into table foods.  She is also going to see the speech therapist again.  Hailey didn't babble as much as normal so they want to make sure she is still progressing.  The nutritionist would like us to increase the amount of food she is taking.  We started slow.  Guess we will need to work on that!  They all agreed socially...the girl is a social butterfly!  At one point, they had to start turning their head when they wanted to get her to do stuff because all she wanted to do was look at them and smile.  The physical therapist showed what she would like Hailey to work on and what the next steps are.  They all indicated they are pleased with the therapy she has been receiving the county.  Way to go L! 

They want Hailey to come back for a team evaluation again in 6 months to make sure everything is on track and she doesn't need any other services.  Overall, I am very pleased with her evaluation and visit.  I'm glad that she is on the right course and she is doing well.  I'm happy that I know what we are moving towards and ways to help get there.  I'm so type A personality though.  I want a specific laid out plan...I'm good at that.  It is the part of Down syndrome that challenges me the most.  There is no do A and B and you will get C.  I'm working on letting go of my control might take a little time.  It took me 37 years to get this controlling :-)

After everyone gave their feedback and recommendations, they said their good-byes to Miss Social and left Hailey, myself and the social worker in the room.  It was the first social worker we have met with since Hailey was born.  We talked a little about how we are all doing as a family.  How everyone is adjusting, if we need any additional support.  Hailey did choose that moment to start babbling non-stop!  She jabbered for a good 15 minutes.  The social worker said she was heading to talk to the speech therapist as soon as we left to tell her what she heard.  Hailey has a fear of speaking in front of large groups already!  Ha!

All this time I have been dreading this appointment.  I was so afraid I would be too emotional in a place that focused solely on Down syndrome.  It wasn't like that at all.  It was all very calm and reassuring.  I did get a little emotional when we talked about our experiences with the two OB/GYNs.  The doctor at the clinic encouraged me to write a letter to the practice because their comments were very unprofessional and unfounded.  It was nice to get validation.  To know that it wasn't me being hormonal or over-sensitive.  I will sometime.  It is still raw (I know it shouldn't be 6 months later!).  I want to be able to articulate how I feel without my raw emotions getting in the way.

Well we have one appointment down...two more to go.  We have audiology tomorrow and then an evaluation for our EI (Help Me Grow in Ohio) to see if we hit our last goal, what is our next goal and how she is doing with therapy.  I'm praying tomorrow goes as well as today!

This is what two hours in the car and a two hour appointment will do to you.

I know I am not supposed to have this Webkinz...but what the boys don't know won't hurt them.

Thanks for the spoon.  Can I have more food on it?

1 comment:

  1. Good work Hailey! She sounds like she is doing SO WELL and that's great to see. Crazy how much weight can pile on after surgery, isn't it? And I LOVE the pic of her and Ian with her sweet little grin. And thumbs up on the tripoding too!