August 2003 28 - Pediatrician appointment, Riley weighs 6 lbs 12 oz, Rachel weighs 5 lbs 3 oz 27 - Initial evaluation for Early Intervention program which will provide the girls with physical, occupational and speech therapy 18 - Rachel and Riley's first appointment with the pediatrician (Riley weighs 5 10, Rachel weighs 4 2) 16 - Rachel discharged from NICU weighing 3 lbs 13 oz, Riley tested for CMV, hearing, and given a CT scan 11-15 - Rachel has more labwork in NICU, hearing screening, eye examination 11 - Riley discharged from hospital, Rachel given MRI 10 - Rachel tested for CMV 9 - Riley born at 6:27pm weighing 5 lbs 8 oz, Rachel born at 6:31pm weighing 4 lbs 1 oz with a head circumference of 28 cm- both admitted into NICU, Riley discharged from NICU within 2 hours September 2003 26 - Weigh-in at pediatrician (Rachel weighs 7 lbs 2 oz) 25 - Rachel has her first EEG to pinpoint seizure activity 25 - First appointment with Pediatric Neurologist 24 - First Physical Therapy home visit and evaluation 18 - UCLA to meet with Infectious Disease Specialist, Gancyclovir treatment discussed, CMV viral load blood tests administered 11 - Pediatrician appointment (Riley weighs 8 lbs 4 oz, Rachel weighs 6 lbs 0 oz) 10 - Rachel to Children's Hospital of Los Angeles (CHLA) to be seen by retinal specialist, says her CMV retinitis is healing 6 - First opthamologist appointment, Rachel has CMV retinitis, Riley has other issues not related to CMV 4 - First audiologist appointment, both have "hearing sufficient for communicative purposes" October 2003 24 - Physical Therapy home visit 23 - Pediatrician appointment, Riley weighs 11 lbs 3 oz, Rachel weighs 9 lbs 7 oz and her head circumference is 31 cm! 17 - Physical Therapy home visit 10 - Coordination of Early Intervention program 9 - Pediatrician appointment, Riley weighs 10 lbs 4 oz, Rachel weighs 8 lbs 2 oz 7 - Riley has her first EEG to pinpoint seizure activity 6 - Weigh-in at pediatrician, Rachel weighs 7 lbs 7 oz 1 - Follow-up appointment with retinal specialist at CHLA, Rachel's CMV retinitis fully healed Milestones - Riley is pushing up and rolling over to her back. Rachel is pushing up. November 2003 24 - Viral load test results! Riley and Rachel have no more CMV! Their counts are below 200! 18 - NICU follow-up clinic at hospital, Riley weighs 12 lbs 7 oz and Rachel weighs 11 lbs 12 oz...she's catching up! 14 - Physical Therapy home visit 12 - CMV viral load blood tests administered at the hospital 12 - Appointment with new audiologist for hearing tests (Riley's hearing is fairly normal and Rachel's hearing is below normal) 7 - Physical Therapy home visit 6 - Pediatrician appointment, Riley weighs 12 lbs 3 oz, Rachel weighs 10 lbs 14 oz and measures 22 inches--only 1/4 inch less than Riley! Rachel's head also measures 32 cm--1 cm bigger than 2 weeks ago! 6 - Girls receive first of several Synogis (RSV) treatments Milestone - Riley is smiling and vocalizing. Rachel is getting close to smiling and is pushing up. Both sleep through the night. December 2003 16 - ABR's (Auditory Evoked Brainstem Response ie. "hearing tests") performed on girls at hospital 11 - Pediatrician appointment 9 - Pediatric Neurologist appointment and 2nd EEG for Rachel. EEG reveals Infantile Spasms (IS) and seizure activity. Medication recommended. 5 - Synogis (RSV) treatment, Riley weighs 13 lbs 6 oz and Rachel weighs 12 lbs 14 oz! 1 - Opthamologist appointment, Rachel still CMV retinitis free but still has optic atrophy issues, Riley still has other issues not related to CMV Milestones - Riley is laughing, especially at Garrett. Rachel smiles when she feels like it! January 2004 30 - Physical Therapy home visit, Phenobarbital blood levels taken for both girls at the hospital 20 - Opthamologist appointment for Riley to check optic nerves and possible strabismus. 19 - Physical Therapy home visit 16 - Physical Therapy home visit 9 - Physical Therapy home visit 8 - Pediatrican appointment 5 - Synogis (RSV) treatment, Riley weighs 14 lbs 9 oz and Rachel weighs 12 lbs 15 oz 2- Physical Therapy home visit Milestones - Riley is still laughing, doing more pushups and rolling over. Rachel smiles, laughs, talks (squawks) and pushes up. February 2004 26 - Occupational and Physical Therapy home visit 23 - Physical Therapy home visit 20 - Physical Therapy home visit 19 - Occupational Therapy home visit 18 - Site visit from home health nurses to evaluate the girls' needs for home nursing care 13 - Physical Therapy home visit 12 - Girls first appointment with an Occupational Therapist. She will assist Riley with using her hands and feeding/eating and will assist Rachel with use of her feet, hands and feeding/eating. 11 - Final follow-up appointment with retinal specialist at Children's Hospital of Los Angeles (CHLA). Rachel's CMV retinitis fully healed 9 - Physical Therapy home visit 6 - Physical Therapy home visit 5 - Pediatrician appointment 2 - Synogis (RSV) treatment, Riley weighs 15 lbs 12 oz and Rachel weighs 13 lbs 6 oz Milestones - Both girls are eating solid foods now! Riley is still laughing, doing more pushups, rolling over and is scooting on her belly, hopefully crawling soon! Rachel laughs, talks (squawks) and pushes up. March 2004 30 - Girls evaluated and tested by Pediatric Audiologist experienced with CMV, recommends hearing aids for Riley, continued testing for Rachel. 29 - Physical Therapy home visit 26 - Physical Therapy home visit 23 - Pediatric Orthopedic Surgeon determines that girls have Cerebral Palsy (rule out). 22 - Physical Therapy home visit 19 - Physical Therapy home visit 16 - Second EEG for Riley to pinpoint possible Infantile Spasms (type of seizure), EEG read by neurologist as "normal". 15 - Opthamologist appointment for Riley to check for strabismus. 12 - Physical Therapy home visit 11 - Pediatrician appointment, Riley weighs 16 lbs 12 oz and Rachel weighs 13 lbs 6 oz. 11 - Occupational Therapy home visit 8 - Physical Therapy home visit 5 - Physical Therapy home visit 4 - Neurologist appointment for both girls. Medication changes discussed and she notes both girls' progress. 1 - Physical Therapy home visit 1 - Ear, Nose and Throat (ENT) appointment for both girls. ENT recommends a hearing aid for Riley and a Cochlear Implant for Rachel. 1 - Synogis (RSV) treatment, Riley weighs 16 lbs 6 oz and Rachel weighs 13 lbs 10 oz Milestones - Both girls are eating solid foods now! Riley is still laughing, doing more pushups, rolling over and is scooting on her belly, hopefully crawling soon! Rachel still laughs, talks (squawks), pushes up and is starting to REALLY smile! April 2004 17 - Our family moves to Northern California! 16 - Pediatric Endocrinologist appointment for both girls 15 - Physical Therapy home visit 12 - Physical Therapy home visit 9 - Physical Therapy home visit 8 - Final Pediatrician appointment before move, Riley's head circumference is 42 cm and Rachel's is 35 cm. 7 - 2nd CMV viral load blood tests administered at hospital to verify the abscene of active CMV. 6 - Pediatric Audiologist appointment 5 - Physical Therapy home visit 2 - Physical Therapy home visit 2 - Synogis (RSV) treatment, Riley weighs 17 lbs 6 oz and Rachel weighs 13 lbs 8 oz Milestones - Both girls are still eating solid foods! Riley still laughs, works on crawling and is doing well with her hand splints from OT. She is opening her hands (especially her right) and is grabbing things! Rachel is laughing, talking, smiling (in her own way) and working on pushing up!