Wolf Grace Bagnati
January 19, 2015
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 2.5 years later we have seen many specialists and therapists. The laundry list is below.
- She sees a Nephrologist every 6 months. 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 GI doctor every 6 months. She is currently 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 Physical Therapist once a week. She has low muscle tone and is extremely flexible.
- She scoots, cruises, crawls up the stairs. This past December 2014, she walked to her dad, roughly 5 steps independently.
- She has SMO's for pronation in her ankles.
- She has a Mini Rifton Pacer Gait Trainer for mobility.
- She sees an Occupational Therapist once a month. She helps with food feeding and gives me ideas to help stimulate her mouth, hands,etc.
- She eats food orally. But is picky. Currently she favors white foods like pasta, rice, bread, crackers, & cheese.
- She sees a Speech Therapist once a week. We are trying to get her a device that will help her communicate
- She sees a Special Education Teacher 2 times a month.
- She has seen an Opthamologist and has a follow up in March. She has ptosis in her left eye. Her older sister had strabismus in her right eye. He wants to monitor her for that as well.
- She smiles and laughs. She makes sounds, ahhs, bahhs, gahhs. She uses ASL. She knows about 20 signs. The only verbal word she has is Hi. Her favorite TV show is Signing Time.
- She had RSV in the winter of 2013.
- She sees a Pulmonologist.
- We recently took her off all medications and added a Homeopath to her list.
- She is doing great. She is in a weekly gym class. Goes to a special needs school 2 half days a week. Has aqua therapy once a week. She is magical and we love her dearly!
Overall we feel she is doing very well. She is just under 18 pounds and 31 inches tall. She will be 3 this June of 2015!
--- Justin and Kate Bagnati
|Name || Wolf Grace Bagnati
|Date of Birth|| Jun 2012
|Gender || Female
|Diagnosis || 46,XXdup(10)(q23.32q25.3)
|Parents || Justin and Kate Bagnati
|City || Norwalk, CT, USA
|e-mail || katiebutternutsquash[at]gmail[dot]com (change [at] to "@")
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