I came to meet this sweet family thru this awesome foundation called, "Inspiration Through Art" Keturahs mom contacted me and shared with me the struggles that her baby girl has had since the very first day she was born. She was born with an already uphill battle and from what her mom told me in her emails, her little girl is one strong little human.
Here is her email....
Immediately after birth, Keturah was diagnosed with Bilateral Vocal Cord Paralysis making it difficult for her to breathe and eat on her own. She spent over half of her first two years of life in the hospital, having countless surgeries and struggling to survive. As an infant she received a g-tube in her stomach to eat and a tracheostomy in her neck to breathe. Within the first year, she was found to have an intestinal malrotation causing difficulties with her tube feedings which eventually needed to be surgically repaired. In that same year, she was diagnosed with Arnold Chiari Malformation of the brainstem and Central Hypoventilation Syndrome which cause her to stop breathing when she goes to sleep. She has had two brain decompression surgeries and uses a ventilator every t! ime she is sleeping. She also has a neurogenic bladder and needs to be catheterized four times a day to completely empty her bladder. When Keturah was 2 years old, she went into CHOC's Intensive Inpatient Feeding Program where she spent 3 weeks in the hospital learning to eat by mouth and has continued to follow up with weekly outpatient feeding therapy sessions. 3 years after entering the program, Keturah was eating well enough on her own to have her g-tube removed! When Keturah was 3 years old, she began coughing up copious amounts of blood from her trach. With a lot of work from Hematology and the Pulmonary Team, they discovered that Keturah has a platelet aggregation defect. They have worked together to find the right medications to keep her bleeding under control every time she has an episode. Keturah continues to visit CHOC on a weekly basis. Her Doctors have been amazing in helping us consolidate her appointments into one day a week so she misses only a minimal amoun! t of school. Keturah loves all of her Doctors, Nurses, Therapi! sts, and Child Life Specialists and thinks of all of them as family. Though she continues to have health challenges, she is happy and vibrant! We are so thankful to God for providing CHOC to save Keturah's life!
I am so thankful that I was able to be a part of giving this family some photos of them together and of Keturah and her ladybugs....does she ever love ladybugs!
This is a huge packed full blog...enjoy!
