Grace Long

Grace’s Story

“She feels deeply and cares for the many people who are her friends.”

Grace Long, Partial Trisomy 13, 2/7/2008, Ermine, KY

GraceLongGrace weighed 7lbs. 10ozs. When she was born On Feb. 7, 2008 at 39 weeks gestation.
The first 3 days of her life, Grace Anne seemed to be a snacker, eating a little here and there and she did not have a very strong suck… which I was some concerned with but I thought I was probably worrying unnecessarily. It was probably just a difference in children. Grace looked very healthy. Grace and I went home and spent one night and 1 day at home before Grace stopped feeding and became unresponsive.
We took Grace down to our local hospitals emergency room and from there she was flown out to UK Children’s Hospital. Grace was initially hospitalized with severe hypoglycemia and a UTI (Urinary Tract Infection).
Grace had about every discipline involved in her care during her two week stay.. At that point in time, with our limited knowledge, she was a “mystery child”.
We started hearing of diagnoses like; Microphthalmia, Optic Nerve Hypoplasia, Central Apnea, Adrenal insufficiency, GERD, Hypotonia, Bilateral Vesicoureteral Reflux with a right side duplication, PDA, PFO and heart murmur. She was failing her hearing tests. She needed to be taught how to suck, swallow and breath. Her o2 stats went down when she ate. She had an NG tube. Near the end of our 2 week Hospital stay, some of which was in the PICU and some of which was on the pediatric floor we found out about the underlying diagnosis of Partial Trisomy 13. At that time, we were “glad” to find that there were some answers to the mysteries of our child. It did not take us long to be overwhelmed with the immensity of Partial Trisomy 13. Psalm 139 quickly became MY chapter. God knew me and was taking care of Grace when I humanly no longer could. God was in control… Not me… Very comforting!
The hospitalization was very stressful when it happened, but it is a key factor in Grace being alive today. . The Doctors and nurses were very supportive in helping us to learn how to help Grace. Many different tests were done to help us to know about the special considerations that Grace might need.
Grace stabilized and started responding and gaining weight in the hospital. We brought her home with a hospital grade breast pump, An apnea monitor, O2 monitor, oxygen and some medicines.
The program, Daniels Care, through our local Hospice program, was a huge help for us as we learned how to work with a medically fragile special needs child. Our nurse, social workers and chaplains are remembered fondly. She graduated to Pallitive Care when she was 3 because she was doing so well. After a year or two of checking in yearly we graduated off of Pallitive Care into the “regular world”. 🙂
We have worked with First Steps and were able to have a PT work with Grace in our home for the first several years. She received Speech and OT and then PT through insurance in clinics and hospitals within a 2 hour radius. The KY Commission for Children with Special Healthcare Needs helped us check with Shriners to see if she needed braces or a helmet.
Graces many Drs included but are not limited to; Pediatric Cardiologist, Pediatric Opthamalogist, Pediatric GI Dr., Pediatric Endocrinologist, Pediatric Nephrologist, Pulmonologist, Geneticist, Ear, Nose and Throat Dr., Neurologist, Allergist and Pediatrician. We are so thankful for their help in understanding how God put Grace Anne’s unique body together!
The first year of Graces life we spent a lot of time going back and forth to the many specialists. (We had a 3 hour commute, one way.) During that time Grace continued to develop, her eye Dr. Commented about her eyes. “If I would not have been the one measuring this whole time I would say this is not possible.” Her eyes developed from Microphthalmia, (with the question as to if she could see)to just eyes that were a little on the smaller side. She has glasses for distance. One by one Graces diagnoses became less medically fragile. One by one we stopped having to see the specialists and saw her pediatrician as needed.
Grace still does have low muscle tone, Ataxia and Dysphagia. (Layman’s terms, no one is exactly sure if it is her muscle coordination or her mind telling her muscles what to do, but it takes a lot of effort to talk, chew, and run.) These combined still affect her eating, her swallowing, the amount she eats, drinks, her speech and her movement. Affecting does not mean controlling. She drinks thickened milk. She enjoys eating many foods. They are Gluten Free, low acid, low gas, softer foods. We stay away from foods that are a chewing challenge… We slowly add more to her diet as she and her body are ready for them. For example: popcorn is still a “no -no” because of the chewing and swallowing difficulties but she can eat raw petite carrots. 🙂

Grace Anne is continuing to grow and learn. She is seven and she can talk in sentences, joke, tell stories, yell, sing and whisper(sometimes). She feels deeply and cares for the many people who are her friends. She can drink and eat on her own. She can self dress with just some help. She can walk, march, jump and run. She can ride a Balance bike, Push a scooter, swing in a swing, and play on playground equipment. She can spell, is learning to read, can count and is learning how to add. She is fast on her iPad and knows how to use many programs on it.
She does have and uses a Pediatric stroller/wheelchair to help her. She wears out quicker and this helps her to be able to participate in more of the things she wants to do.
Grace enjoys being with her family and friends. We have a very supportive family, church and community who have helped us in many ways.