Harper Our Hero

Harper Jane came into our lives earlier than expected on May 12th, 2015 weighing 2lbs 2oz. After a long stay in the Neonatal Intensive Care Unit Harper was released from the hospital. Our happy homecoming was short lived, we very quickly became aware something was wrong. Our beautiful baby girl was miserable and cried nonstop.  At 4-months old Harper was diagnosed with Auditory Neuropathy (hearing loss). At 7-months old Harper was then diagnosed with Dystonia. Dystonia is a very painful movement disorder in which a person’s muscles contract uncontrollably. We were devasted for our sweet girl, but it didn’t stop there. At 13-months old Harper was diagnosed with Dystonic Quad Cerebral Palsy. Essentially there is no cure for CP or Dystonia but there are ways of improving her quality of life through therapies and interventions. We never imagined this life for our little girl this is not something you plan for. It is our hope to give Harper the best quality of life possible.

Harper will be undergoing her 5th surgery today to repair her hiatal hernia, nissen fundoplication, closing her diaphragm with mesh and moving her gtube site down. The surgery will take about 4-5 hours and she will be admitted for 5-7 days. Staying at the hospital is costly as we have to eat here with a small discount, gas money , parking which is $15 a day and trace will be traveling back and fourth from work to here next week.
 
Our family would like to thank you in advance for your support and truly appreciate anything you are able to donate for our hospital stay.

Trace, Megan and Harper