How Kennady is Affected by HPE

holoprosencephaly_ng_tube

Keannady days old in the NICU

Our daughter (Kennady) was diagnosed with hydrocephalus 8 weeks before she was born.  Hydrocephalus means fluid is not properly draining from the head causing it to swell and alter the brain’s development and function.  The doctors warned that our daughter would suffer greatly because of this condition.  After she was born, a MRI revealed that she also had Alobar Holoprosencephaly (HPE).  This was another huge set back. Not only would she have the set backs of Hydrocephalus, but her brain had not divided into two halves.  The doctors were unsure what parts of the brain had actually formed and what parts were missing. They gave her 6 months to 2 years to live.  They told us they could place a shunt in her brain to drain the excess fluid, but it would not correct the brain malformation.  Here is a video on the day she was born.

Believe it or not, Kennady is still alive and kicking! She has faced a mountain of disabilities. Her body was all born normally except her brain. However, when the brain is not functioning properly, the rest of the body doesn’t either.  As a result, here are some of the challenges she faces:

  • 20130412-172122.jpgUnable to eat with her mouth – When she was around 18 months old she began aspirating and the doctors told us not to feed her by mouth anymore.  There was too much danger with the threat of aspiration pneumonia.  Now, all her feeding and medicines go through a feeding tube. Here is a post on how she eats.
  • She has a condition called Diabetes Insipidus. Her brain fails to send a very important hormone to control her kidneys.  Therefore, she needs medication to control her urine output. If she doesn’t get this medicine three times a day, she will “go to the bathroom” too much, become dehydrated, and eventually die. We have been giving her the medicine DDAVP three times a day since birth.  On this same topic, she is incontinent and needs assistance with this 24/7.
  • baclofin pump

    This is the pump that was placed in her abdomen

    She is unable to control her muscles.  This causes a lot of issues for her.  The communication between her brain and her muscles is not normal and makes her unable to control her movements.  Therefore, she is unable to sit up on her own, walk, or use her hands.  Her muscles are getting tighter each day.  We are constantly working with her through therapy and medication to keep her as flexible as possible.  In 2013, we tried a very invasive surgery to help with the situation and it didn’t work. We inserted a Baclofen pump into her abdomen that constantly gave her doses of meds directly into her spine.  You can read about that here.

  • She is unable to verbally communicate with words.  She communicates with us through sounds, laughing, crying, and facial expressions. She is working with technology at school to communicate through switches and a computer on her wheelchair.

photo 2Holoprosencephaly makes her really different than most of us.  We would think that she would be miserable because she doesn’t have and isn’t able to do all the things that we find to be so comforting and entertaining.  However, the truth is that Kennady is one of the happiest and most contented persons you will ever meet! She is a complete blessing to live and hang out with. Here is a blog about one of her secret weapons to show her love for us!

 

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