Saturday, April 13, 2019

Hazel's Story

The Hazel Report has been dormant now for a few months, which believe a good thing!  But part of keeping up this blog is to tell Hazel’s story and not just medical updates.

Hazel’s Story

Hazel is our oldest child, born in October 2013 with a rare chromosome deletion on the short arm of her 6th chromosome. It's one of those situations where it’s rare enough that is doesn’t have a name and to our knowledge, there are about 100 people worldwide who have some kind of documented chromosome 6 deletion.  And beyond that, there is only 1 individual, a boy slightly older than Hazel named James, who has her exact deletion: 6p 25.3 through 25.2.  Her condition carries with it a number of potential issues, but there is not much data to work with to determine how likely health issues are to arise.  It's safe to say that more articles will be written about Hazel's condition than are available to read about her C6 deletion.

Hazel was born blind with cloudy corneas that blocked her vision, she was born with hydrocephalus (Excess fluid in her head) and born with permanent hearing impairment.  Over the past 5 years, we have been on a medical journey alongside our team of doctors and medical professionals to fight for her health and her ability to see and hear.  Needless to say, her chart at the doctor’s office is….extensive.  33 times she’s been under anesthesia, 18 eye surgeries (Including 6 cornea transplants), 1 tube shunt running from her head to her stomach and a handful of emergency exams under anesthesia ...or worse.  This journey has been a long road with very few breaks. 

Flash forward to now and we have learned a LOT about how her condition impacts her health and day-to-day life.  I’ve documented a lot of details in the blog about her medical specifics, but as her parents we would want people to know and understand some key things about our little girl:

·        Her vision is monocular, meaning that she only has vision in her left eye and vision in her right eye has been lost permanently.  She has glaucoma, which is still a concern for her good eye.  She has trouble finding people in a crowd and seeing things at long distance, but she is totally functional and has worked hard to be independent. 

·        Her hearing impairment is just as big of a challenge as her sight, even though we talk about it less often.  She does wear hearing aides every day and she is learning other life skills like brail and sign language to supplement her communication. 

·        Hazel is not mentally impaired by her condition, if anything….she remembers too much.  Her mind is a tiny steel trap.

Her strongest skills revolve around her memory, so she quickly learned things like the alphabet, counting,  repeating Bible verses, reading and puzzles along with remembering and singing songs.  She loves music J  And there are other functional areas where she needs more assistance.  Skills that most kids learn through observation and social mimicking don’t come easily to her.  Most or all of her learning needs to be hands on.  Her speech was slower to develop than most, including her interpersonal skills and reasoning skills – her frustration with her feelings have been hard to verbalize and often come out in emotional and expressive ways.

We have learned that her genetic condition is an anomaly and was not passed on.  Hazel has a younger sister (Sawyer, 2) and baby brother (Barrett, 10 months) who don’t share any of her ailments.  She absolutely loves being a big sister and now that her sister is older they are inseparable best friends and sometimes fierce enemies…as sisters will do.  They both smother little brother with love and he is anxious to start walking so he can be part of the sibling squad.  She gets daily eye drops in the morning at night and has regular check-ups with her various specialists.  We take our life with Hazel one day at a time and lean on God to direct her path in life. 

Right now, her biggest milestone is that she is on-track to start regular Kindergarten in the Fall -- a goal we weren’t sure we should aim for 5+ years ago.  God is good!!!  Hazel has been blessed with a tight-knit family, faith-based Doctors, skilled special education teachers, therapists and friends likes the families of Fearless Hope.  All these people have made her into the lively, loving, curious and often times overly-enthusiastic girl that you see today.  The journey to this point has been rough and the emotions of the hard times have not gone away, but we can also see how fortunate she is and we could not be more proud of her. 

This is Hazel’s story, we are just here to share it.