The Hailey Herald

The Hailey Herald

Wednesday, September 7, 2011

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. 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.

1 comment:

  1. Yay for some good news. We're very blessed to have a healthy bill of health since OHS too. Hoping that you can have some future appts that aren't so hard on you. Hopefully with time that will come. It's a hard balance to strike, between being aware of the things to look for and worrying about every possibility.