April 2015: Born - 40 Weeks, 1 Day - Passed Newborn Hearing Screening (OAE)
*Limitations of OAE's in defining Mondini or EVA issues
"This raises concerns about the use of neonatal screening in isolation without adequate mechanisms for later identification of hearing impairment"
Simple explanation of booth testing, tympanometry, and more.
May 9, 2016 - Well-Child Check: I request an appointment to check his hearing
October 2016 - Pediatric Audiologists appointments start. Q consistently tests as having fluid in his ear. He reacts well in the booth.
Use of Pediatric Visuals:
With younger children, the audiologist pays close attention to the child's reactions to a sound. Your child sits in your lap in the center of a soundproofed room with speakers on both sides. When she looks in the direction of the sound, she's rewarded by the sight of a dancing toy or a flashing light. This test is termed visual reinforcement audiometry (VRA). https://www.babycenter.com/0_hearing-tests-for-children_10320775.bc
We go for subsequent appointments through January 2017, with more questions and no answers, then are referred to ENT.
March 14, 2017 - our first in person appointment with an ENT
May 12, 2017 - PE tube Surgery. ABR had NO results ~ Deaf diagnosis, Severe to Profound hearing loss
Developed impetigo in the following week, which did not clear up until late May.
Q suffered brachycardia
Q's heart rate was monitored nightly after sleeping for 1/2 an hour for the following two months, and sometimes in the middle of the night, if I was worried.
May 23, 2017 - Follow-up Audiologist appointment
May 30, 2017 - First meeting with EI support team (CSAC - Coordinator and SLP)
This team is implemented and from this point forward, among with the many hospital, ENT, and PCP appointments we are now meeting with our Coordinator, SLP, and a TOD once a week!
July 11, 2017 - Quinn's repeat ABR (requested by ENT team, as responses from booth tests did not coorelate with first ABR) shows bilateral SNHL - sensorineural hearing loss
August 24, 2017 - Quinn's MRI & ABR & Hearing Aide Molds, diagnosis of EVA
September 14, 2017 - Q get's hearing aides!
September 29-30, 2017 - Attended Vermont Care Retreat - this was a MAJOR turning point in being open to CI's. Prior to this retreat, I was confident in the path of raising Q as a Deaf child, and prepared to do everything to accommodate his hearing loss. I was able to meet amazing families, to see implanted children, and to have a better comprehensive understanding.
October 9, 2017 - Q Hearing Aid Booth Test
November 7, 2017 - Q CT Scan & ABR, diagnosis of Mondini dyslpasia - This diagnosis determines Q to be a candidate for bilateral CI Implantation
November 10, 2017 - Meet with Q's ENTIRE ENT & Audiological team to discuss options, implantation, and Q's path. We will never be able to express our gratitude for the UVM team pulling this together for us - EVERYONE was available, connected, and wanted the best for Q.
At this time, our families decision was to give Q the CHOICE. We will give him ALL the tools to be a Deaf and Hard of Hearing individual, and we will give him all of the tools to be a hearing assisted and implanted individual. As he grows, he has the choice down either path, and we will wholeheartedly support, and be able to communicate either way.
November 24, 2017 - Q bilaterally implanted with Cochlear Implants (Med-Ed Synchrony https://www.medel.com/us/cochlear-implants). Subsequent 4 days in the PICU, due to CF Gushing
Recent reports of experience with implantation of children and adults with cochlear abnormalities have demonstrated that implantation results in levels of performance not unlike that seen in patients with normal anatomy. Nevertheless cochlear malformations may occur with a higher percentage of surgical complications .
Intraoperative cerebrospinal fluid (CSF) leakages from the cochleostomy site are a serious complication of cochlear implantations. They occur as a result of abnormal communication between CSF and perilymph in the cochlea with possibility of residual CSF fistula and a hypothetic increased risk for developing meningitis postoperatively .
The incidence of CSF leak in cochlear implantation is reported to be between 1 and 5% in large case series [7–10].
In 1987, Jackle
December 1, 2017 - Q Post-Op Check-up. Healing well, bit of fluid and blood from ears so ear drops continued for a week.
December 12, 2017 - Q is activated!
End of December/Beginning of January - Sign Language Facilitator and Instructor begins teaching Jim and I ASL. We begin with "Survival" words!
January 2, 2018 - Q's first mapping
January 16, 2018 - Q's second mapping
February 20, 2018 - Q's third mapping
March 20, 2018 - Introduction of specific CI SLP
March, 22, 2018 - CDC Evaluation for ASD
ASD is characterized by persistent deficits in: 1) social communication and social interaction (i.e., social-emotional reciprocity, nonverbal communicative behaviors used for social interaction, and understanding of relationships); and 2) restricted, repetitive patterns of behavior, interest or activities. To date, estimates of the rate of ASD in deaf and hard of hearing (DHH) children have been similar, if not higher, than those of their hearing counterparts. Many problems exist, however, regarding how to best screen, assess and diagnose DHH children.
Q, at time of this meeting has no significant verbal language in place, and is also leaving the house solely for doctors appointments, and we are only 3 months into our CI journey and ASL journey.
March 27, 2018 - Q transition meeting from EIP to ANESU School District
April 10, 2018 - 2nd transition meeting with EIP and ANESU team (Received call from UVM Campus Children's Center!)
Friday April 13, 2018 - Tour of UVM Campus Children's Center with Q
Campus Children's Center follows the Reggio Emilia Pedagogy
At the core of the Reggio Emilia philosophy is the belief that children are valuable and competent.
Tuesday May 15, 2018 - Q's fourth mapping appointment.
Booth test confirmation that he is in the SPEECH BANANA!
Week of June 11th - Q's signing skills erupt! A switch flips and he starts signing like crazy.
June 18, 2018 - Q signs "Bye Mommy I Love You" and "Bye Daddy I Love You"!!! First time signing Mommy & Daddy
July 9, 2018 - Q starts at UVM Pre-K!!!
August 7, 2018 - Q's fifth mapping appointment. He seems to tolerate the increase well, though we weren't able to get a lot of answers in the booth.
August 10, 2018 - Q starts to independently use the toilet at Pre-K! woohoo!
September - we get a new in home ASL instructor and mentor.
September 26, 2018 - IEP meeting at MAUSD
October 6th, 2018 - we add in home services (SLP) to fit within the Districts requirements.
October 9, 2018 - IEP meeting at MAUSD with 264 present
October 22, 2018 - discussion with MAUSD and 9east
November 5, 2018 - family flu shots! Q did really well!
November 6, 2018 - BCBS approves additional Aural regard for Q. Two hours a week within the ‘medical’ model to support Q’s current IEP.
November 7, 2018 - Q’s sixth mapping! He does GREAT in the booth and sits independently!
November 17th, 2018 - Quinn falls asleep with his processors on!
November 19th, 2018 - Well-Child check, Q is growing SO well!
November 23, 2018 - Q has Croup (it's horrible)
November 27th, 2018 - IEP meeting at MAUSD
November 30th, 2018 - lunch meeting with MAUSD
December 7, 2018 - Parent Teacher Conference at UVM (Q is doing so well!)
December 12, 2018 - Ophthalmologist appointment (Q's ear malformations generally always present subsequent eye issues. He will be monitored yearly into adulthood). This was also an appointment where not having language was a detriment, and thank GOODNESS Q new his alphabet in ASL.
January 11, 2019 - our family relocates to South Burlington, Vermont!
January 15, 2019 - first meeting with Chamberlain School
January 29th, 2019 - Q's first IEP meeting with Chamberlain School
February 4, 2019 - Q receives aural habiliation 4 days a week, beginning this week!
February 5, 2019 - Q verbally says NO!
February 18, 2019 - Q's seventh mapping appointment; met with Med-El representative to go over equipment with 9east present, and Q has AWESOME booth responses with both CI's, and with individual CI's on. Specialist recommends no fine-tuning at this visit. All internal components working great, and we will fine tune in May after more booth testing.
February 19, 2019 - Team meeting at Q's pre-k to review IEP, transitions, and more
March 28, 2019 - Q's says MOO and signs Cow!
April 11, 2019 - Jim and I attend the UVM ASL Club Deaf Panel: "Why is American Sign Language Important"
April 11, 2019 - PCA Eval
April 17, 2019 - Q to ENT, multiple issues with processors, and concerns over fluid in ear
May 2, 2019 - Roni attends The Nine East Network & Vermont Higher Education Collaborative presentation from Bruce A. Goldstein, Esq. "Hard of Hearing and Deafness Legal Update: Protection and Entitlements from Birth to Adult", and is thankful to Nine East for presenting her the option to go and for Vermont Hands and Voices for covering the fees!
May 20, 2019 - Q has 4 year well child check, and does a PHENOMENAL job at the Doctor's office, and receives two booster shots and also does very well.
May 20-23, 2019 - Q develops a small blood blister looking like rash around his eyes/cheeks that looks like freckles due to the shots.
May 29, 2019 - Q has his 7th mapping appointment! He was absolutely incredible!!!! His booth test was the best we've ever seen, and the Med-El reps were present to help us review and troubleshoot all equipment.
May 29, 2019 - Q's 2nd IEP meeting/I-Team meeting. 14 team member present. I was simply floored by the amount of care that goes into Q, and the team surrounding him. It was overwhelming.
June 13, 2019 - Q has Strep
June 13, 2019 - Jim visits EEE at Orchard! They made a beautiful social story to introduce him to everyone for the fall
July 5-11, 2019 - Q has a viral/low grade dehydration and is sick for several days
August 29, 2019 - Open House at Orchard Pre-K, South Burlington VT
September 3, 2019 - Q's first day at Orchard Pre-K! He attends Mondays through Thursdays in the mornings, then rides a BUS to UVM Campus Children's School!
October 8, 2019 - IEP Meeting/Team Check-In
December 13, 2019 - Q to ENT for 6 month check-up. He does GREAT!
December 16, 2019 - Q has an episode of not breathing/waking-up, retractions. We begin to monitor for Asthma after 911 call.
January 19th - Q starts SWIM SCHOOL at UVM
January 24th - Q's IEP Meeting. We find out he is going to KINDERGARTEN!!!!!! It was the FIRST wonderful IEP meeting we have ever had. Positive, nurturing, and so much growth.