Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Update

 

 

Its been so long since my last update on here.  Fiona will turn 34 months in April!  It’s hard to believe that we’ve been on this journey for almost 3 years.  There’s not an hour that goes by that I’m not thanking God that our sweet Fiona is still here with us to love and care for.  She had a 2 month eye infection which had her lids swollen shut.  I was so concerned that we would not see her pretty eyes open up again.  I had come across a blog in the past of another boy with GM-1 whose eyes were shut at the end of life.  Paxton kept reassuring me that she would eventually open them when the infections were gone.  She also caught a cold and a few days later it reached her lungs.  Gangliosidosis patients always pass on from pneumonia so we aggressively treated Fiona.  She had been on oxygen for several days, breathed through a nebulizer every 4 hours, was continuously connected to a heart and oxygen monitor, and we frequently suctioned her little nose and mouth to prevent fluids from entering her lungs.  We set up our guest-room as a hospital room for Fiona with all her equipment.  Even typing this makes my heart hurt. Once again we were reminded of how precious life is.

 

Fiona is still on the ketogentic diet and 2 different seizure medications to help control her seizures, but she still continues to have mild seizures on a daily basis.  Her seizures usually begin with no foreseeable triggers.  Her face will start to twitch, her hands will clinch, and sometimes she will make little sounds.  All of her medications have to be crushed and mixed with water because she can’t have the sugary liquid medications a normal child her age would receive from the pharmacy.  Everything has to be weighed out and exactly to the milli-gram.  Tending to all these details has become our priority, our life, our normalcy.

 

As the holiday approached, I felt a lot of heartache and sadness for my little girl.  I can remember her first Christmas, when she was just a happy normal little baby.  Now almost 3 years later, she should be getting excited about Santa coming and opening presents like other kids.  We should be watching the excitement in her eyes and be able to hear it in her voice.  It breaks my heart that our sweet innocent Fiona doesn’t get to experience all of that, but she is a constant reminder of what’s important in life!  We have experienced so much love and joy with Fiona.  The smallest things are such a blessing, whether it’s a sneeze, a little movement of her hands, or her extremely seldom seen, sweet smile.  We have so much to be thankful for every single second of every single day.  Though there is heartache each and every day-there is still joy!

 

 

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