We started our day unusually early today. I was awaken by a face staring at my face at 2am. I screamed, he screamed, he ran and continued to scream and hid in the corner of his room. After what seemed like an hour Koen was calmed down and back to sleep.
This was my first hint that today wasn't going to go as planned.
Haddie Mae graced us with her cheery presence just in time to head out the door to her ultrasound appointment. I love that no matter what she wakes up happy! She usually just hangs out in her crib, chattering her foreign language to all the stuffed animals in her room until one of us come in to get her. I scooped her up and out the door we went. She figured it out quickly and that's when the tables turned. No breakfast? What do you mean? All the way to the appointment she sat silently signing for milk and cereal!!! We checked in and she seemed cheery again. Lion King was playing in the waiting room and she was chatting and playing with Jenifer at the front desk.
My second hint for the day was that I had forgotten the doctors order for the ultrasound! Hello MOM brain!
They were sweet about it and said I could bring it by later or have Doc fax it over.
It was a different tech this time. We have had the same tech the last two times so I'm wondering if this is where we lost all hope of getting pictures today. While she was patient and understanding I don't think a chocolate dipped iced cream covered in sprinkles covered in lollipops set atop a sparkly pink ice cream cone would have done the trick today. As a matter of fact. I came prepared. I had a bottle ready, a lollipop in my pocket, my iPhone preloaded with an unprecedented Barney episode, and big brother nearby holding her favorite Bunny. And we still failed. I'm talking exorcist style, head spinning, blue faced screaming, strong willed- adorable toddler. I mean seriously she has never even seen Barney! Isn't that supposed to be like strongest non prescription sedative for kids?
So we zipped up her jammies and wiped her tears grabbed her favorite bunny and headed for our walk of shame out through the lobby. The lobby filled with tons of judgmental strangers staring me down like how could I have possibly put my baby through all that. As if I was tattooing her face to match Mike Tyson.
We made it about two miles to the parking lot of a donut shop when I started to feel a lump in my throat. We failed today. And I am sure today wont be the last time. The worst part of it all is you feel totally alone. No one quite understands what you are feeling. No one can understand that your heart is always heavy for the unknown. That every six weeks you loose a night of sleep waiting on blood test results. Every three months you stare at that ultrasound machine trying to make sense of internal organs which by now you recognize with out having them pointed out to you. You search through each organ trying to make sure there isn't the slightest speck of cancer intruding on their perfect formation. So the thought of a failed attempt let's you linger with the unknown a little longer. Honestly, the tech could care less you have to come back and attempt this again and the guy at the donut shop would be delighted you're back for another visit. But instead of sitting here crying about it we are just going to have to get a bit more creative.
In good news Haddie's latest AFP blood work was 8.5 which is the lowest to date!
We are off to see the new geneticist Dr. Martinez on April 22 at UCLA Children's who happens to be a specialist in BWS and we couldn't be more excited about that!
We hope all of our BWS friends are doing well! You can also find me on Facebook and InstaGram @onein13thousand
Much love,
Melissa
This was Koen's Easter Bunny face:)
