Our youngest Joy is born

Our beautiful baby girl Charlotte was born March 8th, 2014 at 35 weeks, under somewhat emergent circumstances due to the discovery of little to no amniotic fluid.  This was the first indicator that something was wrong.  Before her birth we did not know she had any medical complications, although in hindsight she was likely having seizures in utero when I was pregnant with her.  Within seconds of her birth she required a breathing tube to be placed  and after seeing her for about five minutes she was transferred to a different hospital with a higher level of care.  It was clear within hours of her birth that something was wrong and she was having what appeared to be seizures. This was confirmed shortly there after and she was placed into a medically induced coma in an attempt to stop the seizures.  At times the EEG was showing that she was having over 400 seizures a day.  The seizures were essentially unresponsive to any medication we tried.  Charlotte spent two months in the NICU and was sent home with out many answers and still having hundreds of seizures a day.  She was diagnosed with the SCN2A mutation when she was about three months old and had been out of the hospital for about a month.  Shortly there after she was admitted back in to the hospital for being in a state of status - a state of continuous seizures.  In Charlotte’s short life she has had a breathing tube placed five times related to seizures that have stopped her from breathing.  She has suffered from life threatening respiratory infections which because of her underlying diagnosis have overtaken her little body quickly and left her in critical condition.  She has been hospitalized in the ICU for respiratory infections six times in the past fourteen months, several of those admissions also required a breathing tube to be placed to due respiratory failure from the infections.  Most recently she has had complications related to urinary retention and gut issues all secondary to her underlying SCN2A diagnosis.  She is currently on seven different seizure medications throughout the day, has tried and failed many more, and still her brain suffers many, many seizures a day.

 

Despite all of these horrible things her little body has had to endure, she is the brightest light in our life, and brings us more Joy than we ever knew existed on this Earth.  She has taught us lessons about life and and an appreciation for the little things that we would never have learned without her.  We are honored and blessed to have been entrusted with the opportunity to care for her, love her, and give her the best life possible.  As a family we decided that we wanted her to experience as much joy as possible, we wanted to surround her with Joy every second that we possibly coould.  We didn't like the idea of a bucket list, the terminalogy just made our hearts cringe, so we decided to make her a "Joy List" filled with all the things, some big, some little that we wante her to experience in her life.  The beautiful thing about her Joy List is that it has taught us to look at and embrace the Joy of life more purposefully which is especially important to do in times when the world seems dark and suffocating.  We hope that the Joy she experiences helps the world realize and appreciate the Joy that is everywhere and helps people stop and experience the joy in their life - because it is there, I promise, even if you don't think it is.

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