Family Team News

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Monday, February 16, 2015

Kami's story

I was 30 weeks pregnant when my water broke at 3 am. The doctor told us to get to the hospital quickly... shortly after getting there, they flew me to UMMC (University of Maryland Medical Center in Baltimore) where I was placed on strict bed rest with my best friend/hubby by my side for 5 days. On March 10, Kamryn was in distress and decided to make her arrival through emergency C-section...

At just a few weeks old, we found out about her PVL (Periventricular leukomalacia)... Scared to death, we didn't really know what to expect but we knew this was God's plan and with our amazing group of family and friends, we would get through this together and everything would be ok! After being in the NICU at UMMC (almost 2 hours from our home) for the longest 2 months ever, Kami was able to come home.

At just a few months old, Kami was diagnosed with CVI (Cortical visual impairment) and quadriplegic spastic high and low tone CP (cerebral palsy), at just 9 months old, she had a very severe seizure that almost took her life. She was intubated and on a breathing machine for 3 days... This is when she was diagnosed with epilepsy. At 14 months old, she had surgery to put at G-tube in, this was because she was very underweight and aspirated when she swallowed - all the food/liquids were going into her lungs. She has recently been diagnosed with asthma and has had a lot of breathing issues. She has had one eye surgery with more expected.

Kami is now almost 3 years old on March 10, 2015 - she does not crawl, walk or talk, she has PT, OT and breathing treatments every day, continues to struggle with seizures and everyday issues - but has a smile that would light up a room and is a very happy beautiful baby girl." If it wasn't for the help of others, we don't know where we would be and we are so grateful for all our blessings!!!

1 comment:

horseloverinmd said...

She is beautiful <3