Sh*tty Week

December 16, 2009

I am tired.  My head aches.  I am sad.

So far, the most difficult challenge is to remain cheerful. I feel like a clown - wearing a mask that hides what I truly feel inside.  Interior cheerfulness is very difficult to maintain.  Why Lord of all problems did you give me this one?

Ate was hardly responsive today.  She gave me a few half or rather quarter smiles today at Kindermusik during the Hop Up song.  It is probably the motion that she enjoys when I lift her up.  When it was time to sing the song "You are My Sunshine" I didn't sing it because I didn't want to cry in public again.  I knew I'd feel shi*tty.

I find there are so many things to do that could help her.  Physical Therapy, Kindermusik, Mozart Sonata K488, Mozart Concerto K488, a lot of hugging and kissing and talking to her, a lot of breastmilk.  I need to give her as much breastmilk as I can because that is the highest source of brain food.  Even that simple task I find difficult because .... I tire easily.  I have to keep up with her sleeping hours.

I feel I have no time to socialize for myself.  Not that I am complaining.  I wouldn't mind giving up my alone time if only she could just smile at me.

I wish I had other problems.  I prayed to the Lord to show me my path to heaven.  Now I find myself praying for an alternative path.  Sh*t.  This has yet been a sh*tty week.  Simbang gabi has started and I just can't feel Christmas coming.

6th Month Birthday and some SMS

December 15, 2009

SH*T!  Michelle was right... I'm not yet done crying.  Today is Ate's 6th month birthday.  And I just couldn't bring myself to sing her Happy Birthday.

I remember the first day we found out about Ate's GDD and microcephaly, we found it hard to start the prayer that night.  Hubs and I take turns leading the prayer and we always start with the words, "Thank you Lord for today..."  Because we were not very thankful to the Lord that day.  That day sucked.  And today is another lousy day.  My child's half year birthday was somewhat a sad day for me.

Often it is difficult to stay positive.  My husband reminded me last night to keep on talking to Ate because she can hear me.  She just may not appear to respond like she used to.  When hubs would rub his nose to her nose, she would laugh.  Last night it was as if nothing was happening.  We sing, we talk, we carry, we even touch her face.  And she won't react.  Just keep doing it - is what hubs would remind me.  It's not as easy because it all seems so useless.

But I know it isn't.  It's just difficult.  What's going on in that brain of my child?  In the literal and figurative sense.  Damn those damaged neurons!  Sending electric signals when they're not supposed to.  And can she feel / know that hubs and I love her so much?  When we touch her is it just her skin feeling it, or is her brain telling her that her mommy is holding her.

Yesterday she had 63 spasms in 1 cluster and as I counted pass 40 I had to hold her.  I normally place her on her side as advised so she can breath a little easier.  But when the spasm did not start to wane and just became more intense, I felt scared.  Sh*t I say again!  I'm losing my baby.  I wonder what is more painful.  To lose her this way as her brain becomes more damaged at every seizure, or to lose her to sudden infant death.  Sh*t!  Why did I even think of that?!  At least the Lord has given me a chance to live with her.

Today I am sad and I am angry.  It was not a happy birthday.  Tomorrow we have Kindermusik - that might be better.

Reading text encouraging text messages sent to me before might help.... (besides, time to delete them for more phone memory space)...

18 Nov 2009 4:26am from Papa
Good a.m. Fr. Rocky.. This is Des Racho. Can u please tell me the schedule of Fr. Fernando Suarez. When and where are his next Healing Masses? When will he tennis again? I need a miracles - a BIG MIRACLE - for my five-month grand daughter ATE! Three doctors: a pediatrist, a pediatric neurologist, and and opthalmologist-neurologist hev each n separately examine her. They said that ATE's growth - of the brain, head, neck, n motor skills are very late. And that "at the age of twenty years, she may grow to be like ten years old"., Fr. Rocky, I need your prayers for a MIRACLE!

18 Nov 2009 7:44am from Papa
Reply of Fr. Rocky Aquino SVD, President of St Jude School near Malacanang - Fr. Suarez played tennis with them last Fri where I met him.  I tennis with Fr. Rocky every now n then, doubles..: Sa monday po and healing nya, after tennis.

18 Nov 2009 8:48am from Z
Hey there. I just talked to French. Hang in there. We're all praying for Anya, u and hubs. I wont call u up now so u can rest. Pls rest. I'm sure you haven't had any sleep yet. Just know that randy and i are here to help in watever way we can. If i need to talk to julie to know more about GDD, just let me know. Take care and pls call me up anytime if u want to talk.

18 Nov 2009 11:43am from Evea
Hi. Talked to agatha already. I'll call you tomorrow so you can rest na tonight. Keep praying and be strong. With a lot of help and aggressive therapy Ate will do better. I can't imagine what you're feeling but always remember that Ate's condition is nobodys fault and He must have a special mission for Ate and you. Everytime you put Ate to sleep, always whisper to her to pray to make her a strong baby. He's always listening to His little angels :)

63 spasms, 38 spasms and a wonderful massage

December 14, 2009
This morning I placed the prayer card of St. Josemaria Escriva and Blessed Alvaro del Portillo on Ate.  I firmly believed she would wake up without any seizures.  And she did!  She woke up at 730am today and she reached 10am without any seizures - at least the one where her hands go up, her legs stiffen, her eyes contort and she loses her breath.  That didn't happen when she woke up.

But at 12:30pm, right before taking my lunch, she had an attack.  The prayer card wasn't on her.  It was 63 spams with short intervals in between.  And it was an intense spasm each time up until the 50th one.  The last few spasms were milder and that was when she was able to cry in pain.  The earlier part of this cluster of spasms was so hard that I thought her left eye would permanently be distorted.  It was so close together and most likely very painful that she could not even cry.

I held her close to me when she started to cry and the spasms continued.  Why my daughter?  I wanted to cry and I felt tears coming, but I held it back.  Instead I prayed to the saints.

She latched on to me for comfort but I could tell she was just too tired from the seizure.  So I waited and lay beside her in bed.  I should have been praying but instead I fell asleep.  And at 2:45pm she had another attack of 38 spasms.  Her face was just as convoluted.  Are the damn meds working?  I hate that Valproic Acid.  I finally read the small prints and saw the possible side effects.  It could screw up my daughter's liver.  But I guess better her liver than her brain.  Damn it!  I just got angry again.

I spent the rest of the day taking her in and out of the house, talking to her.  And oh, we did some physical therapy.  She didn't like it.  I distributed her sit-ups and played in between every sit-up.  Although her therapy session before lunch was a lot better since we did the whole routine fairly quickly.

Finally she pooped.  She gathered all her poop and saved me on diapers!  She started her Soy Based Isomil Infant Formula today.  It seemed she was frustrated at my breast since the milk wouldn't come out fast enough.

I gave her a warm bath.  And then the best part so far today... I gave her a massage.  She seemed to enjoy it too since she let me massage her for quite a long time.  She just didn't like it when I put her on her belly.  I noticed that her right arm which is what she usually uses to rub her face, was very relaxed when I held it for a massage.  She didn't try to pull it away so she can scratch her face.  And she didn't use her left hand either, she just relaxed.  Chill.  When I let go and started on her legs though, she would use her hand to scratch her face.  But when I would hold it again, she would let me massage it.  There was no struggle.

Now she is asleep.  Her papa isn't home yet.  But can't wait to see him come home.  I pray tomorrow will be a better day.

My daughter's burden

December 14, 2009
Sometimes I think she was given to me so I can be delivered from my sins.  Sometimes I think she suffers for my sake.  So that my sins may be forgiven.  During her seizure attacks, she cries in pain.  When she has an upset stomach filled with gas because of the medication, she cries for 1 hour straight.  All I can do is rub oil on her belly, put hot compress and keep lifting her legs up so she can release gas.  And the whole time she is crying.  If she were able to speak, she would tell us that her head aches during and right after a seizure.  Why does my baby suffer so much?  Why not me instead?  I deserve to go through the pain and my baby does not.  Perhaps she carries the burden of her sinful mother.  She is suffering on my behalf.  And seeing her suffer is the only thing the Lord will allow me to suffer.  Whatever the Lord says.  My baby can handle it, I cannot.  I just have to bear seeing her in pain.

A few friends have told me not to blame myself or ask if there was anything wrong I did during the pregnancy or right after I gave birth.  Not once did I think of that.  Nor did I think that the Lord is allowing this so I can suffer.  It’s the other way round.  Ate suffers to sanctify me and perhaps a few others.  Well, at least that is what I think.  My sinfulness is what I blame for Ate’s condition.

The prognosis that Ate will have mental retardation led me to think that Ate will have a limited capacity for happiness.  That is, happiness in a way we all experience it.  Oh I believe she will be happy to the fullest of her capacity, but not to the fullest of our capacity.  We have a large glass to fill.  She has a small glass.  And that small glass is easily filled.  Here I blame myself again.  Because I ask why did the Lord give me a child that has a small glass?  Is it because the Lord thinks that I cannot fill her glass if it were bigger?  Because I cannot fill my own glass to the brim, I can only fill Ate’s with a small amount.  And because the Lord loves Ate so much, He made her a smaller glass because her mom cannot fill a big glass.  Is that all that I can give to my daughter?

Others have said that mothers with special children have more to do in order to give their child happiness.  I would rather say that it is much easier to make these children happy because their joys are simple.  Simple compared to what we usually expect.  I don’t need to send her to Disneyland to make her happy.  I just have to be there for her.  That should be easier, in essence.  It is hard to give up many things like my alone time.  The Lord wants me to simplify my life.  I have to give up certain comforts.  To do the right thing is actually more rewarding.  So the Lord is giving me an opportunity to do well as a mother because Ate will not be asking much.  She will be asking a lot of my time.  The Lord has given that to everyone, but not everyone uses it wisely.  Now my room for error is less, because I will obviously be spending more time with my daughter.  Ate does not give me an excuse to make a mistake.

I am the burden that my child carries.  The Lord has given me an opportunity to do things right.  Ate’s development on earth is not a measure of my success.  I just hope I don’t screw up.

Part of my Anger Stage

December 12, 2009

Perhaps it is because I am in the ANGER stage that I was or am still upset about people asking, “How’s Ate?”  But I take back my complaints, because some people really do care even if they ask through text.

I finally met up with a fellow mom who has a child with microcephaly.  Her son is now 6 years old, cannot talk, cannot walk, cannot lift his head, and cannot close his mouth.  But he can smile, he can hear, he can understand, he can show his love in ways only those who love him can tell.  His mother is an accomplished businesswoman running her own retail company with over 100 locations.  She is strong willed, determined, a survivor.  You wouldn’t be able to tell that she has the burden of caring for a child that is as floppy as a puppet, a child with cerebral palsey.  You really would not know.  I believe it is because she knows her child is blessing and not a burden.

So forgive me when I feel some resentment at people asking how is Ate.  I should say, Ate is an angel.  She is surely going to heaven.

How's Anya?

December 10, 2009

How's Ate?

So far this has been the most difficult question to answer.  A good number of people know that Ate has been in and out of the hospital and a few know about the diagnosis.  Some, like those who ask this simple question, just know that Ate has some sort of problem.

Sometimes it annoys me.  Well, I guess it depends on who is asking.  When Oma or Wowo asks me, it's quite simple since I just update them on what has happened to Ate for the day.  But for those others, especially those who ask through text, really don't seem to help me.. or Ate.  Are they really concerned?  Do they expect an answer through sms?

Sometimes I just want to answer, "I don't really know how my daughter is doing."

Or here's a list of possible answers:
1. Oh Ate has epilepsy.
2. She's on drugs - the powerful kind that can knock you out or give you liver problems.
3. Ate could be mentally retarded one day, clinically speaking.  Sometimes she acts like it already.
4. Her brain isn't developing so I really don't know.
5. Ate has about 4-5 seizures in a day and sometimes she loses some oxygen in her brain.
6. She's brain damaged and we don't know why.
7. Ate isn't hitting any of her milestones and her eyes wander around aimlessly sometimes.
8. She doesn't react to people and can't look at you straight in the eye.
9. Ate has infantile spasms and you can just look it up in the internet to save us some unpleasant conversation.
10. Do you really want to know?  After I tell you how she is, are you really going to care?

Of course I've already put in my head some possible answers to acquaintances:
1. Ate is almost 6 months and getting heavier.  (I can't say she's growing up so fast because her brain isn't allowing her to grow up).
2. Ate is there in my mom's house probably sleeping by now. (Telling where she is could be a satisfactory answer to a question they aren't asking).
3. She has her dad's cheeks. (Describing her cute looks could also do)
4. Ate and I are enrolling in Kindermusik (Changing the topic to Anya's activities helps)

And to friends who I think would care...

I'd like to say Ate is doing better but I'm not really sure.  She's on medication now which is somehow controlling her seizures but that could affect her liver in the long run.  And although there is slight improvement in less frequent and less intense seizures, I'm not sure how her learning is affected.  She seems to be there but sometimes she's not.  We haven't been doing her physical therapy daily exercises since she's adjusting to the meds.  She gets gas a lot as a side effect and she cries for 1 hour straight.  But gas pains is still better than brain cells firing off and causing more brain damage. Please pray for her.

Well, that's how it went for at least 2 friends this evening.  One friend is a mother of 4 and her 2nd child is my God daughter - who happens to have cognitive problems too.  I had just found out.  Because she also just found out.  I wanted to say, at least she can walk.  But what's the point trying to say that my child has a bigger problem.  She was very positive in a sincere way.  Her daughter has special needs but goes to regular school.  She has seen kids with special needs in that school and they are doing a lot better than the first time she saw them.  She will give me the school's contact details.

Maybe I was able to casually converse with her on the matter because we had just both attended a recollection.  The priest was telling us no matter the hurdles or problems we face in life, we still cling on to God unquestioningly.  And we have to strengthen our faith.  Yeah, easier said that done.

The other friend is from my church group and she has epilepsy.  Her last attack was about a month ago.  And it was only after she got married that the seizures came.  They came even when she was pregnant.  We compared notes on the medications we were using and she said she would ask her neuro to find me a physician who would do the ketogenic diet with Ate.

Hmmmm I would say it was a productive day.  Ate had less intense seizures although she had about 3.  And I just realized some of her antics like lip smacking, straightening/ stiffening legs, rubbing eyes, repeatedly clasping hands -- are also seizures.  She's been doing this for quite some time now.  I can't possibly count how many seizures she has in a day.  No wonder she can't learn anything.  She has some sort of seizure practically every hour - including her sleep time.

The ketogenic is recommended if medications don't work.  But in the long run, I want Ate on the diet because medications have side effects.  And to be seizure-free and medication-fee is my target.  Ate has a 60-75% chance for a better prognosis with the diet.  I want to start her on it as soon as possible.  Time is of the essence.  I will make my phone calls again tomorrow.

Kindermusik and finding a Saint

December 9, 2009

I made a few phone calls today and scheduled an appointment with one of the doctors in St. Lukes Hospital.  Hopefully she still administers the ketogenic diet and takes Ate as a possible candidate.

Ate had another Kindermusik trial class today with Teacher Ana Castro.  I already scheduled this for her last week.  I had spoken with Teacher Ana over the phone just to inquire about it.  We spoke for an hour.  She casually opened up to me about how she became a Kindermusik teacher.  Her child has special needs.  She had left the corporate world to become fully dedicated to this.   Naturally, I also opened up to her about Ate’s condition.  Immediately I knew I had to take the class with her. 

Although Ate and I already took a demo class with another teacher last Saturday, I still decided to attend Teacher Ana’s class.  And of course I found her very warm and accommodating.  Today, we sang You are my Sunshine.  And while I sang off key to me child as she breastfed from me I cried as I sang, moved by the simple yet piercing words.  We were asked to replace the word sunshine with the name of our child and so I sang,

You are my Ate, my only Ate

You make me happy when skies are blue

Oh you don’t know dear, how much I love you

Please don’t take my Ate away

Each time Anya had a seizure, she seemed going further and further away from me.  The seizures were taking her away from me.  She became aloof to the world around her.  Almost not receptive to anything at all.  Or at least she could not show it with simple coos and smiles.

My husband and I have been looking for that smile and laugh she once had at about 3 months.  She hasn’t smiled at us nor looked at our face.  It always seemed that she just looked through us all the time.  And her eyes wander around aimlessly.

Today at the trial class, she uttered some sounds and reacted to the Kindermusik scarf and rainbow makers.  That simple, “uh” she said a few times really started my day right.  Except of course for the episode she had earlier today.

Earlier today, Ate woke up and started stretching her arms and kicking about.  I prayed to Mama Mary to hold her, protect her and not allow any seizures to happen.  Infantile spasms usually happen around the waking hours of the baby.  And I was already anticipating it.

As I held her and stroked her, I kept praying to Mama Mary to protect her.  When several minutes had passed I knew Mama Mary was holding her hand.  I prayed, “Mama Mary, please ask the Lord to spare her from a seizure this morning.  Use your faith not mine, your devotion not mine.  Because my faith and devotion are so weak and lacking.” As I said this, Ate was spared from her seizure.  Because I had rested my faith on Mama Mary’s faith.  But when reason came in … “she has to have her seizure, it has to happen, it’s bound to happen…” I started losing faith.  And then the seizures started almost instantly.

Again I prayed to Mama Mary loudly.  And after 10 or so spasms, the intensity started to wane.  It reached 20 spasms, but it gradually lessened in intensity.  I thanked Mama Mary for stopping it.

And then we had Kindermusik!  What a wonderful morning!

Before going to the pedia neuro, we went to Oma and Wowo’s house for lunch.  Luckily Marita Gomez was there.  I had been wanting to talk to her over the phone.  Now we sat at Oma’s lanai and exchanged stories on the challenges we faced with our children.  Her eldest child had also seen the same pedia neuro because was a bit delayed.  She promised me more contacts and even some music cds to help Ate’s development.

I asked Dra. Butler about the ketogenic diet for Ate.  She said that was for extreme cases if the drugs we are using now do not take effect.  Although she told me that the kind of condition Ate has will be a difficult one.  She personally does not subscribe to it, but Dra. Fojas has used the very strict ketogenic diet on several of her patients.  I’ll have to ask her about that when she gets back.

Wowo called me this afternoon.  And told me that he has prayed to many saints to intercede for Ate.  But he was told to focus on one so that that saint would take charge.  He chose Blessed Bishop Alvaro.  Oma had also told me this morning to pray to him and ask for his intercession.  Also my French.  So I guess we have decided.  I will ask Ate tonight if we can help Blessed Alvaro by praying to him.  When Ate does get well through the help of Bishop Alvaro, then we are a testament to his becoming a canonized saint.

So Ate, who will we help become a saint?  Ate now has a very important task – to have a saint canonized.  We start today.

HOPE

December 8, 2009

Today on the Feast of the Immaculate Concepcion, I found HOPE and an answer.  At Holy Mass today I prayed to Mama Mary to be the mother of my baby Ate.  I consecrate her to you, Mama Mary.  Take her because I do not know what to do and how to be the mother you want me to be for Ate.

It was just yesterday when I was told that my baby has epilepsy.  She has infantile spasms, which is found in 1 in every 5,000 births.  It was finally an answer, but not the answer I wanted.  Because when I did my research on infantile spasms, practically all the prognosis was depressing.  It was as if my child’s future was already written in the book of statistics and mental retardation was a definite outcome.

I was told a few days ago by a mother of a child with cerebral palsey, “It will not be okay. But one day you will be okay with it.”

I took this to heart then, but when the future had mental retardation written all over it, I refused the idea on one day being okay with it.  A mentally retarded person is someone who is there, but not quite.  Probably one of the most difficult situations any parent can face.  Possible prognosis for my daughter was cerebral palsey, autism, mental retardation.

I was told to “accept” so that I could “deal with it.”  I will accept that my child has GDD, microcephaly and infantile spasm.  But I will not accept what statistics predicts to be my child’s future.

As I researched online about infantile spasm, I cried at every page I clicked.  Until I found ketogenic diet.  It gave me HOPE.  A definite answer to the current problems my daughter faces.  Is this Mama Mary’s answer to my plea?  I believe it is.  I researched today and found definite answers.  Tomorrow I would be ready to make those phone calls to explore this lifeline Mama Mary gave me.

Thank you Mama Mary.  Tonight I can sleep better.

GDD and Microcephaly

GDD. Microcephaly. It has been 17 days since I first hear these words.  GDD is Global Developmental Delay which means your child is delayed in 2 or more of the important areas of development: motor skills, speech, ability to learn, social interaction. Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

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.