Previous Image
Next Image

info heading

info content


Information
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
August 14, 2018
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 has had echocardiograms. All have been 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.
  • Most recent sleep study confirmed no sleep apnea.
  • She sees the Geneticist annually. She is happy with her progress and refers us to specialists when needed.
  • 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 and will start outpatient PT once a week in the fall. 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, climb, 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 and she is amazing!
  • We were recently referred to an Outpatient OT Feeding Specialist. She is very particular about what she eats. She is vegetarian and primarily gluten free. Preferring foods that are orange in color. We are hoping to expand her diet.
  • 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 75 verbal words and approximations.
  • She sees an Opthamologist annually. She has ptosis in her left eye. She possibly has strabismus in her left eye. Follow up at the end of August 2018.
  • She has seen a chiropractor, to help straighten her back from a year of scooting.
  • We took her off all medication and pediasure 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.Recommends certain foods to aid in her development.
  • 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 had oral surgery again this past spring. One tooth was removed, one capped, the rest cleaned and filled. Last appointment August 2018 said she looked good. Her mouth is extremely small, so brushing thoroughly can be a challenge.
  • We introduced music movement therapy this year.
  • She has a sparkling smile and her laugh is infectious. She is a jokester, loves hide and seek and chase. She sings and loves to dance.
  • She's finally comfortable walking outside barefoot on grass and sand. She is particular to all things blue and orange; toys, clothes, etc.
  • This year she went to 6 weeks of summer camp with typical and special needs kids, as well as, with her full time para. Swimming twice a day, field trips on Wednesday, and electives like dance and cooking to keep her busy. She loved every minute of it.
  • She goes to a public magnet school. She was in Kindergarten for the 2017-18 school year, 5 full days a week, with a full time aid who signs, and all her therapies are provided. This year she will do Kindergarten again.

Overall we feel she is doing amazing. She just turned 6 this past June 24. She is up to 36 3/4 inches tall and weighs roughly 24 pounds. She is walking, running, climbing, and jumping. She knows over 200 ASL signs, and 75 verbal words and approximations. She is a little sister to Raven 8 and a big sister to her little brother Griffon Jon 2, he currently out weighs her and is 1 inch shorter. She is amazing & magical & we love her dearly! Any questions, feel free to reach out at katiebutternutsquash@gmail.com

Kate and Justin Bagnati