These 2 terms were used to describe my daughter at 5 months. At 36 weeks in my womb, the sonologist found fluid in the left lateral ventricle of her brain to be more than normal. 1.15. A week afterbirth, Ate had a cranial ultrasound and the fluid went down to 1.1 (normal should be below 1).
At 2 months we brought her to Child Neurologist Dra. Fojas who did not seem to worry about the fluid but was more concerned of the development of the gray matter. Ate's eyes would sunset and she had a preference to the left side.
At 3 months, we went to an Opthalmologist-Neurologist for further consultation as instructed by Dra. Fojas. Dr. Ul Doroteo, my brother's high school friend and Optha-Neuro spent almost an hour trying to look at Ate's eyes and found nothing. She was looking left and right and showed no signs of sunset eyes. She would laugh and giggle or react to people. And she would follow object with her eyes. She would even follow me as I move around the room while she was in her crib.
At 4 months, Ate missed her milestone and would not lift her head. She couldn't do pull-to-sit. We said she was just a little delayed and set it aside. She was cooing and gurgling and smiling whenever anyone would talk to her.
At 5 months, she was hardly reacting to us. She lost eye contact and still could not do pull-to-sit. After much prompting from our Pediatrician, Dra. Agatha Garcia (since 3 months she was telling us to have the check up with Dra. Fojas) we went to Makati Medical Center and received the shock of our lives.
Ate was diagnosed GDD and Microcephaly.
For the sake of documentation, these are the things that has happened:
November 2009
Nov 17: Dra. Fojas diagnosed Anya GDD and Microcephaly
Nov 18: I cried the whole day
Nov 19: Asian Hospital to do T3T4 test on Ate. They drew out 4cc of blood from my baby and it took about 5 minutes of agonizing pain for my baby. Started Ate on formula milk. Only 4 oz today. Spoke with Beth Novenario, a mom of 2 special kids who bought Playroom Entertainment games from us last week. She's also part of SJRM in ME. She told me about GOALS (a small school for children with special needs) and different schools in BF that I might find helpful. She said, my child will be my greatest source of sorrow and my greatest source of joy.
Nov 20: Fr. Suarez prayed over Ate, hubs and me. We went to someones house in BF Homes. Met Carol Cabangon, a young mom of 3 kids who brought her 2 month baby born with a hole in her heart. Mishka, her 2 year old daughter was with her and was blessed by Fr. Suarez when she was 3 months. She was a bit delayed too but is looking very well today. Carol said she believes in miracles and Fr. Suarez's healing powers given by God. All it takes is faith. She gave me hope. But I knew I needed to increase my faith. When Fr. Suarez laid his healing hands over Ate's head and hands while I carried her, I too was blessed. Spoke with a friend, Julie Mapua who has a degree in Special Education and teaches in Toddlers at Festival Mall. She gave me some contacts for Occupational Therapists. That afternoon I was able to bring myself to GOALS and met Occupational Therapist Hazel Sia.
Nov 21: Visited our ENT Surgeon friend, Dr. Abbie Javellana-Sanz. Ate needs to have an ADR done. Called different schools and visited Communicare - another school for kids with special needs located just outside the BF Southland Classic.
Nov 22: I missed the Woodrose Medical Dental Mission. My yaya took the day off and Dra.Agatha didn't want me to risk getting any virus that would affect Ate.
Nov 23: Went to BDO in Ortigas to sign some documents for the family business. Brought Ate along since I can't seem to leave her anywhere for long. Has lunch with hubs and French at French's house.
Nov 24: Occupational Therapist Hazel Sia of GOALS evaluated Ate for an hour and half. She taught me and yaya Juv some exercises to do with Ate at home. She didn't provide any written report even if I asked for it. Hub's new bosses came to the house for merienda and almost had dinner at home.
Nov 25: Physical Therapist Anna Domingo who does home visits evaluated Ate for almost 2 hours in our living room. She wrote down exercises we should do. That evening she emailed us her evaluation report along with some basic information on GDD and Microcephaly. A home visit is twice the price of a visit at a center, but she seems more thorough and a PT is what we need right now.
Nov 26: Set up the living room area of Ate's first day of home therapy session. It was very tiring and she cried a lot. She doesn't like her physical therapy. We did only 1 set of the 6 exercises.
Nov 27: Visited the 12th out of 32 Developmental Pediatrician in the Philippines, Dr. Francis Xavier "Danny" Dimalanta at St. Lukes, Quezon City. It was traffic going there. French went we me since hubs was at the St. James bazaar selling Playroom Entertainment. Was out the whole day and didn't get to do any of Ate's exercises.
Nov 28: Spent the day at Alabang where Ate had 2 sets of her exercises. Went to St. James Bazaar to help out Chito.
Nov 29: After 7am mass at La Salle, made sure Ate did 1 set of her exercises in Alabang. Went to Janah and Jong's wedding in Ortigas and went home to Ate and hubs at Alabang where we spent the night.
Nov 30: Still stayed at Alabang and helped out hubs pack up at the St. James Bazaar. Did the morning shift for him. Ate had 2 sets of her exercises today. Spoke with sister in law of Jerrybols, Anna. She's a certified Kindermusic teacher and started her own classes. Dr. Dimalanta told me to enroll Ate in Kindermusic to stimulate her brain and this was a timely email of Jerry. Teacher Anna also has a child with special needs. An inquiry on her classes became a 1 hour conversation. She shared that God chooses whom He blesses with special children. And we will be okay.
Dec 1: Ate did only 1 set of her exercises today. Collected her urine for the urine metabolic screening test. Harry brought it to UP Manila Institute of Human Genetics for testing. It was brought in a cooler since I had to freeze the pediatric pee bags.
Dec 2: Dabs and Arm's wedding and our ER experience. Ate didn't do any of her exercises in the morning. SI came over to do my make-up while Ate was at the living room rotating around. By 1pm we were on the road. I breastfed Ate in the car. After feeding, I placed her in the car seat as we were about to pass by for hubs at Hotel InterContinental. Ate was smiling in her car seat while we were wiping her mouth.
She was falling in her car seat and started to choke and gag. Her lips were turning blue, then also her face around the mouth. We lifted her and she still had blue lips, this time not gagging but mouth open. I shook her until she started to breath again. Then in my arms I saw her eyes become light gray. Glass eyes. Her eyes would look left (her preferential gaze) and then roll up. Then in my arms she would fall limp for a second. Then wake up again. And again her glass eyes look left, roll up, fall limp. Then again. About 4-5 times total. The whole time I was talking to her and calling her name. I kept shaking her every time she would fall limp. I ALMOST went into panic. By the time it was over, Chito was getting in the car and Anya was resting in my arms. No more glassy eyes. She seemed tired and was falling asleep in my arms.
Called Dra. Agatha immediately, described it to her. I said it was not a normal fainting spell. It seemed like a seizure. She advised to immediately go to Dra. Fojas in Makati Med or go to the ER so Dra. Fojas can be contacted.
Dra. Fojas did not have clinic and so we went to the ER. Explained the whole story of Ate 3 times to 3 doctors. From the fluid in the left lateral ventricle to the most recent event. They took her heart rate, checked her lungs, pulse, etc. Pediatrician in charge, Dr. Gallo relayed all that I said to Dra. Fojas and returned to us by saying that Dra. Fojas was coming in. Dra. Fojas' flight was the next day and she probably came just for us. The fee was 3 times her rate for ER visit of less than 5 minutes!
But, we were assured anyway that it was not a REAL seizure since Ate did not have any convulsions and did not twitch. It was aspiration due to not burping or gagging. But I know what I saw and it as not aspiration. The glassy and rolling eyes were dismissed. And my concern for the lack of oxygen of about 5-7 seconds was not really their concern because that amount of time for an infant is negligible. An EGG was requested. But Dra. Fojas told us to attend my brother's wedding first.
At the wedding, Ate seemed tired and sleepy most of the time.
Today Dec 3: Ate's EEG while awake and while asleep at MMC. The pregnant technician Ivy told us she found some "spikes" and "sharp curves." She did not confirm if Ate is prone to seizures or if she had epilepsy. Both presented while Ate was awake and asleep. Official report would come only from Dra. Fojas. Dra. Fojas is now out of the country and arriving December 16. I set an appointment for Dec 17. Finally spoke with cousin of Rosa Laurel-Liamzon, Michelle Asence who has Anna Domingo as her child Xavi's PT. Xavi, turning 6, was diagnosed with microcephaly and lead to his cerebral palsey. We're meeting up Thursday next week. This afternoon, Ate did only 1 set of her exercises. She gagged today while I burped her and that kept me on my toes the whole day. I set an appointment for the Optha-Pedia Dra. Pauline Santiago for tomorrow 11am. I might move it since Dr. Dimalanta won't be seeing us until next year anyway. And Dra. Fojas is out of the country. And Ate seemed to be better today because she is not as tired. Will let her rest tomorrow.
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