Olivia

Age: 5
Duplication: 46,XX,+der(4)t(4;13) (q21;12.1),-13
Lives in: Pennsylvania, USA

Our little super star, Olivia. Born October 9th, 2009.
When we were pregnant with Olivia, an ultra sound showed some concerns. The original thought was Olivia had Tetralogy of fallot, a 4 part heart defect. That was the diagnosis at 26 weeks. That changed at 34 weeks, no heart problems but "shaped a little different, but working the way it should be". There was still concern because she was very small, so genetic testing was ordered as soon as she was born, 2 weeks later we had the diagnosis of Trisomy 4p.

The beginning weeks in the hospital, were a fog, this little baby, # 4 for me was the scariest 5 pound 2 ounces 16 inches long, little person I had ever met. She had funny looking feet, but cute, she had a finger that was oddly longer than the others, and one much smaller. She was missing her middle finger nail, and her pinky nail, I thought no worries, we will get our nails done together, there are always Lee press ons ;0)
 I felt like all my mothering instincts flew out the window, I was so afraid I would do something wrong and hurt her. We were told there were "9 documented cases" of Trisomy 4p in the world, (ha, what did they know) ;0)

The first 2 weeks, she didn't open her eyes, I thought I was taking home this baby, that would never see me, until the day we were leaving the hospital. All my kids had had their newborn baby pictures taking in the hospital, and they had not taking Olivia's yet, so I basically said, we cant go anywhere until she gets her pictures! Well the photographer came up to take her picture, and when the light was turned on, she opened her eyes! I jumped right in front of her, waving my hands like a crazy person banging on my chest saying, "Hi, I'm your mommy, I have been holding you every second, morning noon and night, its me mommy!"
At that moment, I didn't care if that was the only thing she ever did, she saw me, her mommy.

Since than we have learned other things, other add ons to her diagnosis, just a few:

Failure to thrive, (which is why we just had a gtube placed)
Reactive airway disease
hypothyroidism
and there are some others.

Olivia is non verbal, however if she sees or hears a phone she will say, Ello, so cute. She does use some signs, but gets frustrated when we don't understand her.
She walks with a posterior walker. Olivia has walked independently in school, but hardly ever at home. She had a vertical talus repair on both feet and was casted up to her thighs for a total of 6 months, before she turned 2.

Its been a tough road, and I could go on and on. To sum it up, she is amazing! She loves stars, her family & Thomas the train is awesome! She loves when I dance with her, and books. She cant stand the dog who deals with all her melt downs, bless his heart.

There is something about her, that people are just drawn to her, they just want to hug her all the time. She gets so much positive attention from everyone, its really spectacular!

I thank god everyday for putting this amazing little person in the world, and trusting me with this gift. At the end of the day, as with all my children, when I watch them sleep so peacefully, I realize I am truly the lucky one.