|Name||Wolf Grace Bagnati|
|Parents||Justin and Kate Bagnati|
|City||Norwalk, CT, USA|
|katiebutternutsquash [at] gmail [dot] com|
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February 13, 2023
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 have 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 led 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: Microarray testing (7/3/2012) large (23.8 mb) chromosomal duplication 10q23.32-10q25.3 Patient's 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 negative. The genetic anomaly is de novo. Now 8 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. • The 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 every 2 years. 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 2 times per week. 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 in April 2015. To date: she can walk, run, climb, and jump. She loves to dance! • 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 Orthopedist. In 2017 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 2 times per week. She helps with fine motor skills. • She has seen an 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, pastas, and potatoes. • She sees a Speech Therapist in school 4 times per week. She practices ASL and has an iPad with speech apps to help her communicate. Her receptive language is amazing. She knows and uses signs. At the age of 9, her verbal words have bloomed. She still has a long way to go, but is easier to understand. • She sees an Opthamologist two times per year. She has ptosis in her left eye and has strabismus in her left eye. • We introduced Vision Therapy in 2019, but put it on hold due to cost. The doctor changed her prescription and she now wears prism lenses. • 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. She 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 tops 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 in the spring of 2018. One tooth was removed, one capped, the rest cleaned and filled. Her mouth is extremely small, so brushing thoroughly can be a challenge. • Her first adult teeth have started to come in. She has 2 on top and two on the bottom. March of 2020. • We have always struggled with food quantity and variety. She is particular about what she eats. Mainly pastas, crunchy snacks, most fruit, only green peas, and the occasional orange pepper. Of course she loves pizza and french fries. What kid doesn't? :) In 2019 we briefly consulted with a feeding therapist. We have been working on food chaining. • We introduced music movement therapy in 2018. • She has a sparkling smile and her laugh is infectious. She is a joker, loves hide and seek, tag, 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, orange, and grey; toys, clothes, etc. She loves Blippi, The Fresh Beat Band, and Blues Clues. • Summer 2018 and 2019 she attended 6 weeks of summer camp with typical and special needs kids with her full time para. Swimming twice a day, field trips, 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 provided. Repeating Kindergarten 2018-19 school year and off to 1st grade at the end of the summer. • 2nd grade 2019, was off to a great start, but went virtual in March. She has been a trooper. All of her therapies have been zoom calls on her ipad. General education has been limited, but she tolerates about 1.5-2 hours of special education via zoom. • She was unable to attend her summer camp this year, but we are hopeful for next summer. Summer of 2021 she was able to attend her in person summer camp. • We finally have her in a pool once a week for aqua therapy and it has been wonderful to watch her progress. She is now swimming independently for small amounts of time without assistance. She started Equine Therapy in the summer of 2022. We go weekly. She is doing really well with assistance. • 3rd grade,in person in 2021 at a different elementary school, same 1:1 paraprofessional and all of her services. She needed a change and even though we have had some bumps, she has transitioned well. • She had full exome sequencing done at the beginning of 2021. We finally received the results and she has another anomaly on the CUX1 gene. We are still waiting for more information. Milestones: Sitting up at 12 months. Crawling/scooting at 18 months. First word at 3 years. ASL 24 months to Age 7. January 2022 she had Covid. April 2022 she was treated for Erythema nodosum. She stopped walking for a week. It was terrifying! Overall we feel she is doing great. She will be 11 June 24th. She is up to 43 inches tall and weighs 30 pounds. She is walking, running, climbing, and jumping. She knows over 200 ASL signs, but with lack of use does not use most anymore. Her verbal words and approximations have bloomed, 5-7 word sentences. She is a little sister to Raven Snow 12 and a big sister to her brother Griffon Jon 6, he now outweighs her and is a head taller. She is amazing & magical & we love her dearly! Any questions, feel free to reach out at firstname.lastname@example.org Kate and Justin Bagnati