Monday, January 25, 2016

Christina's Heart & Ears

Recently Christina has developed a couple new problems. One of her issues is potentially serious and the other is a quality of life concern. The serious concern is that she has developed atrial fibrillation and tachycardia. Basically this is a rapid and irregular heart beat. She was born with heart defects (several holes), but she was asymptomatic until recently. The atrial fibrillation comes and goes. At times she will go days and weeks without an issue. And then like last week, for instance, she was going in and out of fibrillation for a couple days. When it happens she is completely miserable and even holding her doesn't seem to comfort her. Our concern is that this puts her at higher risk for heart attack or stroke. We are obviously concerned about this but only to an extent. It's just one of many issues she has.

Her other new problem is that she is developing hearing loss. Her hearing was tested at birth and it was fine. She now has high frequency hearing loss, which is speech and hearing consonant sounds. She will most likely be non-verbal due to her low IQ and now not being able to hear speech. She can still hear things, and luckily she was born to a very loud mother so she can hear me, her favorite person! She can also hear music and she seems to really respond to and delight in music. In church I am the pianist for the children's primary. And many Sundays I will take Christina with me and she will sit right up to the piano and just be in heaven! It makes me grateful my parents made me learn to play the piano!


And here are other just cute recent pictures of Miss Chris. She is so hard to photograph since she hides her cute face most of the time. So on the rare occasion she lets us see her face I try to snap a few!






2 comments:

  1. Cutest thing ever with her sitting by the piano. I hope you can get some answers soon for her heart.❤️

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  2. My unborn daughter was just diagnosed with 13q deletion of the long arm. We are naturally heartbroken and scared but seeing your blog gives me so much hope for the future. You are a blessing and I thank you for sharing your story. If you have any advice or tips please email me: tawnylynn@hotmail.com

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