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Name Wolf Grace Bagnati
Gender Female
Diagnosis 46,XXdup(10)(q23.32q25.3)
Parents Justin and Kate Bagnati
City Norwalk, CT, USA
Email katiebutternutsquash[at]gmail[dot]com
October 2, 2017
Wolf Grace / Female was born at 41 weeks. June 24, 2012. Pitocin induced. Vaginal birth. 5lbs. 1oz. When she was born, I asked where the rest of my baby was. She was the smallest thing I'd ever seen and held. There was some worry that the due date might of been wrong, but there was calcification in the placenta. She had a hard time keeping her body temp up so she had to be kept in a warmer. She had hyperbilirubinemia. Which lead to an extended stay in NICU for light therapy. She took to breastfeeding right away. Though because of her size they were concerned that she would not be able to do this. We were discharged a few days later. Re-admitted on July 2. The levels were still high (20.5) and she had lost weight. 4lbs. 8oz. Two full days of light therapy and they did a ton of blood tests. We were sent home, the tests came back with: Microarry testing (7/3/2012) large (23.8 mb) chromosomal duplication 10q23.32-10q25.3 Patients Karyotype: 46,XXdup(10)(q23.32q25.3)

At 5 weeks we had our first appointment with a geneticist. Luckily we are only an hour away from Yale Children's Hospital. We were both tested and the results were normal. The genetic anomaly is de novo. Now 4 years later we have seen many specialists and therapists. The laundry list is below.

  • She had RSV in the winter of 2013.
  • She has seen a Pulmonologist.
  • She has seen a GI doctor, she was labeled "Failure to Thrive."
  • She has seen an Endocrinologist, hormone levels were relatively normal.
  • She has seen a Neurologist. She has had an MRI. It was normal.
  • She has seen a Cardiologist. She had an echocardiogram. It was normal.
  • She has seen a sleep specialist for central sleep apnea and had many sleep studies done, as well as, an EEG which was normal. She was on oxygen at night for about 6 months. She does not tolerate the oxygen, so we don't do it anymore.
  • She sees the Geneticist annually.
  • She sees a Nephrologist annually. She has small cysts on her kidneys. We do blood work, urinalysis, and ultrasound to monitor her kidney function. Currently everything is normal.
  • She sees a Physical Therapist in school. She has low muscle tone and is extremely flexible.
  • She scoots, cruises, crawls up the stairs. December 2014, she walked to her dad, roughly 5 steps independently. She started walking independently April 2015. To date: she can walk, run, and jump!
  • She has SMO's for pronation in her ankles, but refuses to walk when wearing them, so we don't bother. We finally were able to find an orthotic insert that helps. It slips right into her sneakers and she tolerates them!
  • She had a Mini Rifton Pacer Gait Trainer for mobility.
  • We now see an Orthopedic. This past year she had two playground accidents. In the spring she fractured her elbow from falling off a merry go round and at the beginning of the summer she fractured her tibia, her foot got caught going down a big metal slide. Even with all that, she still runs for the playground and still loves the slide!
  • She sees an Occupational Therapist in school. She helps with fine motor skills.
  • She sees a Speech Therapist in school and once a week out of school. She practices ASL and has an iPad with speech apps to help her communicate. Her receptive language is quite good. She knows and uses over 200 ASL signs and has about 50 verbal words and approximations.
  • She sees an Opthamologist annually. She has ptosis in her left eye. She possibly has strabismus in her left eye. He wants to monitor her for now.
  • She has seen a chiropractor, to help straighten her back from a year of scooting.
  • We took her off all medication December 2014.
  • She sees a Homeopath regularly for overall health and well being.
  • She sees a Naturopath annually for overall health and well being. She prescribed probiotics, and vitamins.We recently added a fish oil supplement.
  • She sees a dentist every 6 months.
  • She had oral surgery last October 2015. Her front 4 bottom teeth were removed and her front 4 top were capped. The rest had cavities and were filled. We think it is mostly due to a full year of Pediasure as her primary source of nutrition.
  • She a sparkling smile and her laugh is infectious. She makes sounds, ahhs, bahhs, gahhs. This weekend she kept saying over and over, "I can run!"
  • She goes to a public magnet school. She is in Kindergarten, 5 full days a week, with a full time aid who signs, and all her therapies are provided.
Overall we feel she is doing amazing. She just turned 5 this past June 24. She is up to 36 inches tall and weighs roughly 22 pounds. She is walking, running, and jumping. She knows over 200 ASL signs, and 50 verbal words and approximations. She is a little sister to Raven and a big sister to her little brother Griffon Jon, he currently out weighs her and will most likely be her height soon. She is amazing & magical & we love her dearly! Any questions, feel free to reach out at katiebutternutsquash@gmail.com

Justin and Kate Bagnati