|Name||Wolf Grace Bagnati|
|Parents||Justin and Kate Bagnati|
|City||Norwalk, CT, USA|
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.
- She has SMO's for pronation in her ankles, but refuses to walk when wearing them, so we don't bother.
- She had a Mini Rifton Pacer Gait Trainer for mobility.
- She sees an Occupational Therapist in school. She helps with fine motor skills.
- She sees a Speech Therapist in school. She practices ASL and has an iPad with speech apps to help her communicate. Her receptive language is quite good.
- 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.
- 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 smiles and laughs. She makes sounds, ahhs, bahhs, gahhs.
- Bottom line: She is doing great. She goes to public school Pre-K, 5 half days a week, with a full time aid and all her therapies are provided through her school. She is amazing & magical & we love her dearly!