Say What?: At the RMH in Rochester

I'm typing this on a tablet, so forgive any formatting errors!

We made it up to Rochester pretty quickly. I am so grateful for the Ronald McDonald House. Now we're trying to settle Nolan down. Hopefully he'll go to sleep soon!

Timeline

December 6, 2016: Cochlear Implant Activation
November 11, 2016: Cochlear Implant Surgery and Tympanoplasty
September 12-14, 2016: Cochlear Implant Evaluation at NYU
May 29, 2013: Ehlers Danlos Syndrome Diagnosed
April 9, 2013: Revision Supraglottoplasty at WCHOB.
April 2, 2013: Sweat Test at WCHOB
March 18, 2013: Pre-op appointment for second attempt at Revision Supraglottoplasty (WCHOB)
February 26, 2013: Revision Supraglottoplasty at WCHOB. Surgery cancelled due to massive airway infection found at bronchoscopy before surgery.
February 13, 2013: Hearing Test at WCHOB
January 11, 2013: Sleep Study/C-Pap Titration
October 19, 2012: Microlaryngoscopy and 5th set of PE tubes placed
October 8, 2012: Hearing Test
July 2012: Hearing Test - progression of right ear.
March 7, 2012: Endoscopy with Biopsy, Nissen Fundoplication, and Gastrostomy (Mic-Key)
December 5, 2011: Referral for fundoplication evaluation
December 2, 2011: Hearing Test - stable!
November 2011: Sinus CT Scan: chronic sinusitis discovered
September 6, 2011: Cleveland Clinic Genetics - microarray ordered and heart murmur discovered.
July 21, 2011: C-Pap Titration
July 5, 2011: Hearing Test
June 27, 2011: Upper GI Barium
June 7: Hearing Test
May 3, 2011: Sleep Study #3
April 8, 2011: Anisometropic Amblyopia discovered
December 14, 2010: Supraglottoplasty, Lingual Tonsillectomy, and Verification Bronchoscopy
December 7, 2010: 24 Hour pH/Impedence Probe
November 30, 2010: EKG and Echocardiogram
November 15, 2010: 24 Hour pH/Impedence Probe
November 10, 2010: 3rd Site Hearing Evaluation at WCHOB
October 12, 2010: Bronchoscopy/PE Tube Set #4
August 23, 2010: Hearing Test to confirm conductive component
August 8, 2010: Sleep Study #2
July 2010: John Tracy Hearing Test; conductive hearing loss discovered
June 24, 2010: kidney/bladder U/S and urology appointment
May 20, 2010: Hearing Test
April 13, 2010: Tonsillectomy/Adenoidectomy/PE Tube Set #3
March 23, 2010: sedated MRI for Central Apnea
February 10, 2010: EEG (sleep deprived)
February 2010: Central Sleep Apnea diagnosed
February 2010: Obstructive Sleep Apnea diagnosed
January 20, 2010: Sleep Study
January 12, 2010: Booth Test
August 2009: Endoscopy/24 hour pH probe: Severe GERD detected
July 9, 2009: Upper GI
June 23, 2009: Booth test
June 1, 2009: Cystoscopy and PUV ablation
May 19, 2009: Feeding Evaluation at Children's
March 2009: Urinary blockage detected
December 2008: Second set of PE tubes placed
December 8, 2008: Third Booth Test
August 28, 2008: Second Booth Test
August 11, 2008: Sedated MRI
May 15, 2008: First Booth Test!!
March 27, 2008: PE Tubes Placed
March 18, 2008: Sedated CT Scan
February 8, 2008: Geneticist Appointment
January 9, 2008: Get hearing aids!!
November 26, 2007: ABR #7
October 24, 2007: ABR #6, OAE, and tympanogram
September 13, 2007: AABR numbers 4 and 5 failed at 35 and 40dB
August 28, 2007: Three Screening AABR failed at 35dB

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Tuesday, March 6, 2012

At the RMH in Rochester

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