Ant is here!

Yesterday was my last CST scheduled for the year 2010. A few more days and our baby was expected to come out into the world. But it turns out, she wanted to come out earlier than expected!

Just recalling how this special day went!

3am - contractions about 15 mins apart so couldn't sleep well

6am - bloody show, "I think I'm going to give birth today."

9am - contractions seemed to have stopped. "I'll pack my bag just in case..."

Here's Ate seeing us off to the hospital. She kinda knew that her sister was coming out today I think. She's all smiles!

130pm - scheduled check-up with Tita S "If I'm only 2cm, can I go home?" I was 4cm! Stayed to chat with Tita Suey a while. Wanted to go home but she wouldn't let me. Walked to labor room.

230pm - 5cm. feeling the contractions now

330pm - 6cm. waiting waiting. sat down

430pm - 7cm. Anesthesiologist asks if i need epidural. "I dunno, I feel fine. What do you think? Should I get it? I want to feel so I can push better. Ok half a dose. In case I need it, it's just a push button if I want." Anesthesiologist says it'll wear off in an hour. Wheeled into delivery room.

5pm - took a short nap. Maybe by 7pm I'll give birth

6pm - "I think it's time to push. Honey, pls call the nurse." Anesthesiologist and I decide to postpone the dose so I can push better.
"She's coming out!" ... "Mommy pls don't push yet, we're still getting ready" ... "I'm not pushing!"

625pm - "okay, push mommy!" 1... 2... 3... getting tired! you better come out next push! 4! Out comes baby. Another half dose Epidural given to me right after she came out since I didn't want to feel any pain after.


December 16, 2010 at 629pm Ant is born weighing 8pounds and 3oz and 54cm in length.

Slit Widens & Baby#2 testing the waters!

We had a good CST session even though we were late. Doc gave extended our time. Ate's slit in her vision is getting wider and she needs to work on it some more.

Momma and baby#2 enjoyed CST especially when Doc widened momma's pelvis AGAIN! Sheesh, I might need a new set of undies again! Baby was in a frog position inside and was "practicing" her position for exiting the womb. It was very uncomfortable and I had a long contraction at that time. She was pressing against my liver and spleen. When she was pressing against my lungs, we decided to lie on our side and breathing became easier. Doc says she backed up from the cervical wall which got me relaxed again. Hmmm... she hinted on December 23 or December 18 on papa's birthday. She wanted to be named after her papa. We have an idea and will ask papa tonight!

Most likes

Luke 11:5-10
5Then He said to them, "Suppose one of you has a friend, and goes to him at midnight and says to him, 'Friend, lend me three loaves;
6for a friend of mine has come to me from a journey, and I have nothing to set before him';
7and from inside he answers and says, 'Do not bother me; the door has already been shut and my children and I are in bed; I cannot get up and give you anything.'
8"I tell you, even though he will not get up and give him anything because he is his friend, yet because of his persistence he will get up and give him as much as he needs.
9"So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.
10"For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened.


This passage translates to me as literally staying up until midnight asking friends n Facebook to click “like” on our photo just so we can have the most “likes” and win a free breast pump which we could really use. And literally it is for a friend who has come to me from a journey for it is for my children who will need expressed breastmilk.

Several nights I persisted. I did get several “likes” and I believe I am currently in second place.

After many messages, chats and emails… and countless vandalizing on facebook walls, I received several positive responses. Many voted for our entry or said they would vote but would get lost in where to put their votes. Several helped me solicit more votes and spread the word to people we did not know.

I got at least 2 offers from 2 friends who said that she will lend me her breastpump if we do not win the contest. A complete stranger offered to lend me her breastpump too. Another friend offered to buy it if it was available where she was if we did not win. And another complete stranger actually bought a breast pump and will have it shipped to Manila. It should arrive January 2011. God does provide and answers in His own way. Sometimes He can be silent, but surprises you with something else.

At a certain point I stopped looking for votes and just let it go. That's when I got the call that someone already bought me a breastpump. I realized I could have appeared desperate. Maybe I was. However, I believe it was my anxiety looking for an outlet. I am anxious about giving birth in a few weeks and having to somewhat let go of my first born as a priority. My first born is a special child with special needs. Who would have known?

Yet, there are those who I know received our plea for a simple vote because of the numerous profile status, messages and wall posts I sent but did not bother to vote or reply or show any support. I know they got it because when I went back to check, they had comments or replies to other people’s posts or comments. Who am I to expect? Just because I have a special child, they will go out of their way and trouble their fingers with a few clicks on their computers. That’s expecting too much from them. I’m not being sarcastic here although it may sound like it. I may also sound bitter, but I am not. There are a handful of people whom you expect full support or a simple, “okay I’ll vote for you.” and get nothing. Disappointed? Not really. Because the support of others more than made up for it. Are they selfish? No. Just passive observers I suppose. And just because I have special needs, I should not expect special attention. It’s just a wonder to me that people you care about… don’t care much.

......

Well… the results came out and we’re at second place. We still got what we needed and I feel we won even before the contest was over! I got a lot from this experience no matter how shallow it may seem. I believe I got more than a breastpump 

Now I need to focus on getting ready to give birth! I have yet to pack my bags for the hospital!

A Slit in Anya's Vision & A Contraction

Today Ate had her usual CST session. Remarkable improvements are her sitting, head control and vision. She sits with support but her tummy needs more fascia strengthening. Head control is there but she tilts it more our of laziness. Her vision was described by Doc as having a slit. About 8 degrees to the left of her center, she sees very clearly in a narrow slit. It's like she's peeking through door. And when she captures your face in that slit, she smiles and screams!

So that explains the momentary eye contact! Reading books highly encouraged!

After her CST was my visit to our nature-path. Hmmmm... mommy is lacking sleep. Intensified by that online most "likes" contest which shouldn't be important! Iron intake must be doubled with the more effective (and more expensive) Spatone. Momma learned the cat stretch which felt really good. And also the figure of eight exercise - much like sexy dancing. Like!

Had a contraction but didn't know it was one until Doc said so. It wasn't painful, just very uncomfortable.

Baby hinted she'll be out before Christmas. No definite date yet.

Babymama's contest, the lotto and working for blessings

Facebook has its way of reaching people. Having a lot of people "like" your FB page will mean more people are aware of your product or advocacy. I recently joined a free breastpump contest where my FB friends have to "like" the host page and then vote for you by clicking "like" on your entry. To date we have a slim chance of winning because someone has around 300++ votes while we have only 120++ votes.

Since I was at home, I was in my FB page waiting to catch friends online to ask them to vote. Oh how tiring! Nothing comes free! We really have to work for this! We're so gungho in getting the breastpump because we can't afford one and nakakahiya to keep borrowing from friends. However, chances of winning this is better than chances of winning the lotto.

My mom's driver was one of those many who wanted to win the lotto. And he was encouraging me to buy a ticket, at least one. And to get Ate to hold a pencil and let her tap on the ticket so whatever she hits is what we'll put. Or to at least get her to hold the ticket for luck! Of course I laughed it out. Then in one of my prayers with God, I asked Him for financial blessings and about the lotto if I should buy a ticket. I was kinda laughing at the idea because I never believed in the lotto and the system and the whole concept of it. Sorry, it sounds so shallow! But I do have friends who actually bought tickets several times! And they never bought before.

Anyway, here's God's very clear answer to me. And He, God, was laughing at me. He said that He had given us Ate as a blessing. He will make sure all that she needs is provided. But we are man and we are meant to work and toil. We still have to work and do our part.. and He will provide us more than what we work for... but we have to work for it. Also, God said that Ate's pure soul is not meant to be used that way --- to win the lotto (this time God was smiling and laughing). Okay okay... there was no harm in asking. So we didn't buy any ticket of course!

Some people often say that Ate is the one who will bring luck in our lives. Na siya ang "swerte" sa buhay namin. We just smile and nod. But deep inside I want to blurt out, "Ano siya, rabbit's foot?" But of course I don't say that. The kind of blessings that Ate brings cannot be measured and may not even be felt in this lifetime. Everyday that I hold her, I know I am holding a pure soul; a true member of the Church militant here on earth; a soul who decided to come into our lives long before we knew it; a living angel. So when you do see us, please don't be shy and hold Ate if you like (and if you're not sick with a cough or cold). Just let me spray some alcohol in your hands which her yayas conveniently have in their pockets. When you hold her, she changes you and you will feel God's graces in your arms.

I just wanted to share that with you about working hard and how blessings will come. I really believe this will be a good Christmas - with or without a new breastpump of our own.

Current Therapies

Recently Ate came home from a trip to Singapore. It was for her second ABR assessment and therapy. I should have a separate entry about ABR and what it is all about.

She had significant improvement in her musculoskeletal development, but more was expected. They were expecting us to log in more hours considering Ate is a very cooperative child compared to other children undergoing the same treatment. Also, considering her fascia isn’t as bad as others. Still we were happy with her improvements.

This is Ate during an ABR session. It's like a massage so she is lying down most of the time.

We informed them of the Bobath approach and that we had tried it on Ate. We saw improvement in Anya using the Bobath approach. I’m sure I have another blog about that somewhere in this site. Every time my parents mentioned Bobath, they just shook their heads in disagreement. It was contrary to their approach and promotes rigidity. It “forces” the child to do certain movements. For some children, it will do them a lot of good – that is if you are lucky. However, in several cases the child will walk but will do so awkwardly and will risk over exerting the muscles that one day the child will just not walk anymore. It happened already to one of their patients.  That's what they said.

Before going to Singapore, Ate was doing a lot of the Bobath exercises. She was also regularly seeing her Cranio-Sacral Therapist CST. Again I have to see if I will have a separate blog on that. ABR nodded to CST since they compliment each other.

It has been several weeks since Ate got back from Singapore and we have been doing a lot of ABR and a lot less of Bobath. The changes we noticed are significant. We realize that we cannot just do one or the other. We have to do both. ABR is very passive and this made Ate quite L.A.Z.Y. We try not to say it in front of her because somehow we know she can “hear” it. We believe the more you call a person that way, the more the person will be inclined to be that way for life.

Our weekly Physical Therapist who was with us during our sessions for the Bobath approach under Pablo Beelen, and who is familiar with ABR told us that we really have to do both. It cannot be just passive therapy and it also cannot be too aggressive and forceful because this may make the child miserable and crying often. We agreed with our therapist. She comes weekly and knows Ate more than ABR therapists in Singapore who see her for 2 days every 4 months. And she knows Ate more than Pablo Beelen who saw her 3 times only and will probably see her only every 6 months for 3-5 sessions each visit in Manila.

And as Ate’s parents, we realize we have to do both. The trick now is time management. And of course budget.

There are also other therapies we want to do but we are limited because of the budget. We spoke with other parents and learn from them what we can try with Ate. One is the HBOT. It is already available here in Manila and many offer it. However, we have to consider the expenses, the logistics and the time spent travelling – which could have been precious time doing the other therapies needed.

This is Ate able to sit unsupported for a few seconds. We were doing a lot of the Bobath approach then. Now she has difficulty so we have to do some more time doing Bobath.

I just gave our helpers and caregivers a pep talk. Reassigned their tasks and gave them targets on how much time they should give for Ate’s therapy. I had forgotten to mention to them though, that they are very privileged to have Ate in their lives. She is an angel so pure and clean. Every time you hold her, you are holding an angel of God. I suppose that is the most important thing to bear in mind when giving Ate therapy. You are teaching her body to get better and improve. Yet at the same time, she is teaching you to be a better person in her own miraculous way.

Pregnant and walking around bazaars

Bazaar Season is in full swing! This is Ate during the Zonta Bazaar in the evening. I know their theme is Christmas Carnivale and every year they have the most colorful bazaar! With a lot of interesting concessionaires of course. We came in the evening so it would be cooler and so Ate could see the lights. There were arts and crafts activities and my good friend G was busy helping kids be creative. Ate enjoyed seeing the lights in that bazaar. Next year, hopefully, she can do some of the activities.

And while I still can, I brave the crowds and do some shopping! Actually, I already did shopping early since I knew I'd have difficulty going around this time of the year. I'm already 8 pounds heavier than when I gave birth to Ate and I'm still growing! Rather, my baby inside is still growing! Getting heavier and heavier each day. It's really just window shopping and seeing new things that make me happy during bazaars. The urge to spend isn't there anymore since I am more budget conscious.

My feet are so swollen. It's a good thing my brother introduced me to compression socks and gave me a pair from his stock. My brother is a triathlete (and I say that proudly). Compression socks help with blood circulation and he wears it after he runs. It somehow helps bring the blood back up instead of remaining down there. Diabetics also use this and doctors recommend it. My feet never swelled with Ate in my womb until the 9th month. In my 7th and 8th month now, my ankles look fat and my feet are chubby! Oh dear!



My brother's compressions socks help relieve swelling even if it isn't the correct size. The leg pain, the leg cramps, varicose veins and edema are also lessened. I tested it by wearing only 1 in my left leg. After a few hours I took it off and compared it to my right leg. Wow! I really saw the difference. I wear them at night if I did a lot of walking during the day. Or I wear it when I am just at home. It doesn't look very attractive. There are compression stockings but I didn't think I needed them so I don't have a pair. Working pregnant moms should invest in those.

Kindermusik Graduation

Ate graduated from her 4th Kindermusik class! This time we had more classmates and Teacher Ana decided to have a potluck celebration afterward. Ate looks at her certificate!
Oma makes it in time for picture taking Ate loves going to Kindermusik class. Woops, accidentally cut Yaya Haidy's face, but this is Ate's best smiling shot captured! She has more classmates now. Other grandmas and daddies came too! But mostly we're just mommas in class. Thank you Teacher A! We hope Ate can be an International Kindermusik Scholar soon - even if she is already your scholar! She has improved greatly ever since she started with your classes. Thank you soooo much!

Anya's Gift: Double the JOY!

Ate’s gift to me: To double the JOY

An introduction to my upcoming pregnancy journal . . . (which really helps with all the stress you know!)

“…here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”  -- The Special Mother by Erma Bombeck

It is true that parents of special children appreciate things more.  For a time I believed that I share the same joy as parents of normal children when they see their child hit certain milestones.  But my friend corrected me, “We have double the joy.  We appreciate it more because it is no ordinary feat for our children to accomplish.”

Special children have a different perspective in life.  That’s a given.  And somehow they teach their parents to change their own perspective in life too.

My nature-path asked me how I am with this second pregnancy.  It was a sincere, “How are you?” question.  And a very simple question that has often lost it’s depth and sincerity. 

HOW AM I?  Before I answer that, let me give a short background…

“What are my feelings?”  That’s different from, “What are my thoughts?”  Since I am more of a cerebral person, it was difficult to get in touch with my feelings.  What I’m thinking is what I’m feeling right?  Not necessarily.  It was good that I had my head straight when news of Ate’s special condition came about.  We didn’t waste a day in research and finding the therapists and needed help.  Sometimes I was in denial, but I had done all the research I could possibly do.  I even went to see a cochlear implant company when we agreed that invasive operation was the last thing we would want to do for Ate.  Still, I did my due diligence of research since I believed the more informed we were, the better we could decide.  And if I had spent days crying and denying Ate’s diagnosis, then Ate would not probably be developing the way she is now.

Still, I could not get in touch with my feelings.  I felt like I had to be speed train – focused, consistent, on track and on time (with our own timeline of course).  I had forgotten to appreciate the inch-pebbles that would lead to milestones.

Now Ate has very good head control, she can sit with minimum support, she can walk with a lot of support, she is slowly using her elbows to prop herself up, and she can definitely see beyond 6 inches.  She has momentary eye contact and smiles at you in that brief moment.  She understands and uses her charm on us.  She complains when she is not comfortable or when she has therapy.  She laughs when she is delighted especially when she is being cuddled and smothered with kisses.

I was feeding her on her (borrowed) Bumbo seat one evening and left the red tissue box on her right side.  I noticed she kept looking down on her right.  I thought it was just her head preference.  I picked up the red tissue box and her eyes and head followed.  I moved it in front of her to the left and to the right.  Up and down.  In a big circle.  About 2 feet away.  And her eyes and head followed.  She can see the red tissue box!  She CAN SEE 2 feet away!  I called her daddy and everyone else in the house.  We repeated the whole thing and they were so delighted.  She was more than a year old at this time.  Normal children would be able to see 2 feet away before they turn 6 months.  Oh what joy it brought us.  What double the joy!

So how am I with this pregnancy?  I am EXTREMELY EXCITED!

For a time I thought it was wrong for me to put undue pressure on our second child always asking him (because we thought it was a boy then) to be the caretaker of Ate.  We would ask our unborn child that he would be like the older brother instead of the younger brother of Anya.  And that he would help her, teach her and guide her.  Then I would mention that I was looking forward to seeing him reach his milestones on time or ahead of time.  I felt a little guilty for a while thinking that it was hurtful for Ate to know that I will be waiting with great anticipation for the milestones our second baby will reach.  Because I never asked it from Ate or I don’t expect it in a timely manner.  What I mean is according to the timeline set by society after many years of studying normal child development.

I am excited to see our second baby’s milestones.  What would the joy be like when our second baby has a long eye to eye contact?  When she (yes it’s a girl based on the most recent ultrasound) starts to prop her head up with her arms?  When she starts to crawl?  When she coos and says her first word?  When she slowly lifts herself up and starts walking?  When she holds on to a toy and knows how to play with it?  These are things we look forward to because these are the simple things we have yet to see in Ate.  I thought I was hurting Ate for thinking this way.

But I had to be told, “That is Ate’s gift to you.  Without you knowing it, you’ve already had a paradigm shift.  Ate has taught you how to appreciate things more.  She has been preparing you for this second baby.”  I shed a tear when I was told this.

“You have to learn to appreciate yourself more, mommy.  For the person you have become because of Ate.  She has changed you in so many ways.  When someone compliments you, learn to accept it.”

So how do I feel?  I am OVERJOYED!  Overwhelmed by the joy!  I love Ate more each day.  She is teaching me to love myself more each day, to love my husband more each day because I just realized that he feels as I do and just has a different way of coping with it.  And we are loving our unborn child more each day.  Excited, not worried or anxious, and confident that God will provide not just our growing financial need, but also the growth in our faith and trust that we will have all the love (and more!) that we need for this happy growing family.

Infant Visual Stimulation - make your own part 2

After reading Glenn Doman books, I decided that I could make my own black and white boards for Ate. I used black board paper to cut out shapes. That's my foot and my hand. I bought those giant photo albums that can be your scrap book too. And I didn't need glue, I just peeled off the clear plastic and the board was sticky enough. The plastic helps in preserving the black cut-outs too.


Eventually I found it easier to do some layouts in the computer. I had them printed on photo paper and stuck them in those albums too. I think I should use plain white board paper though. The light reflects against the plastic cover and the glare isn't helping her vision.


Some things you just can't do and have to buy. I found this irresistibly cute battery operated light decoration in Ikea. Ducks and eggs! And the light changes color! Ate likes it, but I think I like it more. I find it very relaxing to look at.

The Bobath Approach

As soon as we accepted that Ate had Cerebral Palsy (the day that the neurologist-pediatrician diagnosed her with global developmental delay), we immediately looked for a physical therapist. She was only 5 months old.

After some phone calls and visit to the nearest therapy center, we decided that home visits were more appropriate for Ate. She would be one of the youngest in the nearest therapy center and since the neurologist postponed any vaccinations, she would be prone to getting all kinds of sicknesses. Therapy centers are just filled with kids that carry all sorts of viruses so we thought it was best for home visits - even if it was more expensive.

Luckily we found one - young female and determined to get her CP kids to walk. Even Ate's Developmental Pediatrician said that she is one of the best. We're so glad she has a time slot for Ate once a week.

We are very happy with her and for a time I was doing all the therapy at home. Often it can get tiring and sometimes I wish I could do more.

Ever since Ate's seizures (infantile spasms) miraculously disappeared, we saw that development was much faster. After several people suggested the Bobath Approach, we requested for a time slot to meet with Pablo Beelen who comes to Manila 2x a year. We contacted the right people and got 3 sessions with him. It would have been more if Ate had not gotten sick from pneumonia. We had to let her recover first before bringing her out again. She still has no vaccines.

Pablo was very kind and encouraging in our 1st session. He confidently says that Ate will walk and run one day. That was very good news. This man has had many experiences with CP kids and even if no one can predict the future of any child, his assessment bears a lot of weight. It gives us a clearer kind of HOPE.

But he was a bit wary on the cognitive side. She doesn't know how to play and play is necessary for learning. So we have to guide her to play. Wow, how we take play for granted. It's the first step we all need. Ate does not seem to have a sense of body awareness and she can't seem to get her arms to push. She pulls them toward herself. Hmmm... how to overcome this.

Pablo taught us the we have to create the environment and opportunity for Ate to develop. So I have a lot of research to do! Now we know what to address and some of the how... but we need more input, more stimulation for her. For one, I know she needs a lot of tactile input. So textured toys will be needed. But so far I can't find any that would really really help. Will have to improvise!

We also got to see Dra. Alexis Reyes who has a 1 year waitlist. The session was about 1.5 hours with Pablo around the whole time. Wowo came with us too. It was a good session. Very positive and well... we have our work cut out for us!

The Bobath Approach seems very promising and helpful. I would suggest it to parents with special children. And for those who can, to see Pablo Beelen. To know more about the Bobath Approach, check out www.bobath.org.uk

We videotaped all our session and Ate's physical therapist has to break it down for us. What Pablo taught us in those 1.5 hour sessions are priceless. Of course, Ate cried a lot but he had to show us everything he could in a limited time. After 3 sessions in 2 weeks, Pablo's assessment of Ate's cognitive development changed - he says it might be better than what he initially thought. We just have to help her every way we can!

Books for Special Mommas

BOOK REVIEWS

Aside from having a diary as an outlet for my feelings and emotions, the first thing I planned on next was doing a lot of reading and research on special children and conditions my child may have.

I cried many buckets of tears and slowly accepted I have a special child. I had to move quickly, I told myself. The more time I spend on crying, the less time I have to help my child. I read through my diary just a few days ago and it helped me understand how I got to where I am now. A little more stable I suppose. And maybe I’ll share what I felt back then another time.

I did start on researching as soon as Ate’s diagnosis and MRI results were shown. At first it was just whatever was on the internet. Some information would conflict with information from other websites. And I remember Ate’s physical therapist saying that it’s better to read books and publications. So we purchased a few books and still continue to purchase some more. I actually borrowed books and returned them to the owners after reading them. And a few books were given to us by friends who were thoughtful enough to think we needed it more than they did.

Some are for special cases and some books are applicable to parents with typically developing children. It’s just that parents with children with typical development sometimes don’t bother with knowing what MORE can they do for the development of their child. Special mommas will go through countless literature and research to learn what others have tried, if it worked and if it will apply to their child.

Here are a few of the books we’ve read and I hope to add more as I read more:


Seizures and Epilepsy in Childhood: A Guide
By Freeman, Viling and Pillas
A Johns Hopkins Press Health Book

The title says it all! It really is a guide. After reading this, we realized that Ate had seizures even before that day we rushed her to the emergency room. Who would have guessed that lip smacking was already a seizure? All the while we thought she was imitating us kissing her. This book also kept us calm during her seizure attacks. Because of what we’ve read, we did not panic and knew how to deal with it. We also did not have to rush her to the hospital – although there was one time I almost did because she was blue for a few seconds. The neurologist said 20 minutes without oxygen would be danger zone but of course even before reaching 20 seconds of no oxygen I was already rushing to the car. Well, she was able to breath even before 20 seconds and the seizure attack began to wane so that was just one frightful episode.

The book also helped us to decide on the medications Ate was taking. We read the small fine print on the medicines and asked around too. And this book, since it was updated, gave us the hard facts. The liver could suffer long term from medications. And another type of medication would be given should the liver not be able to cope – said our doctor.

Well, keeping her drugged was the last thing we wanted. We did see children who have been on the same drug for several years as maintenance. The parents were happy that their child had no seizures. But looking at the child, I said to myself. Yes, no seizure and also no brain activity – since I had read the book already.

We decided to go with homeopathic remedies. That would be another blog entry. And to date, she has no seizures and no medications. And brain activity is all there!

The Ketogenic Diet
A treatment for children and others with epilepsy
By Freeman, Kossoff, Freeman and Kelly

I do have this book and did read through it quickly. I thought we would need it, but as you can see, we did not need to go on the Ketogenic diet. Thank goodness! Because it is quite hard and expensive to maintain!




What to Do About Your Brain Injured Child
By Glenn Doman

I have no idea why my brother had this book. But I’m sure glad he had it! Even if it’s an old edition, it still helped. He got it on book sale after he purchased the other Doman books – which I have also read and find very helpful.

This is a good starter book for any parent who just found out that they have a special child. It gives you hope and jump starts you on your research and knowledge.

I was about to enroll in the program but we didn’t have enough funds for it. And we were able to do a lot of other research and decided to do other things that are within our financial capacity. You really have to decide where to put your money and what is a good investment for your child.

I would say that this book is a basic must for special parents.

How Smart is Your Baby
By Glenn Doman and Janet Doman

I had a friend purchase this book for me in Singapore although you can get in online too. And when another friend saw the book, he made fun of the title and mocked it a bit which annoyed me at that time.

This book really helped by giving us other activities we can do with our child other than therapy. I would call it “constructive play” activities. Of course there are many other books out there that give you ideas on what you can do with you child. But Glenn Doman activities were made for special children. This book, however, can be applied to other children. And if done so, other typical children would not be in the average but would excel in so many things. I plan to apply what we’ve learned here for our other children.













Other Doman books you may consider are The How to Teach your Baby books – Read, Math, Physically Superb, Encyclopedic Knowledge, Swim. My brother has everything in the old edition which is still good. What we don’t have is How To Teach Your Baby to Swim. Maybe after Ate gets better from her cough and cold we will get her in the pool.

Don’t get all books at once though. It may be overwhelming! Or you can get them all for cheaper shipping fees but you don’t have to do all of them right away. Pace yourself!

The New Book of Baby and Child Massage
By Robert Toporek

This is an easy reading book. Comes with illustrations too! My dad said that my grandmother massaged all her children when they were babies. And in the provinces, the old people have been doing this. There are so many benefits to massaging your baby. And more often the parent benefit more. It’s very calming and relaxing. And really, touching your baby often does wonders.

It’s just great that there is a book with a step by step guide. And part by part too! Even facial massage. The book also explains why you massage a certain way. Ate’s therapist also says that they have studied what “strokes” are the best ones.

But even if you don’t have this book yet, just hold your child and your hands will guide you on how to gently massage her.

Children with Starving Brains
A Medical Treatment Guide for Autism Spectrum Disorder
By Jaquelyn McCandless

Since we are seeing a biomedical practitioner, we thought this would be a good book. We got hold of it even before our doctor recommended it. Haven’t gone through most of it yet, but so far it has been very informative.

Ate does not have autism, but biomedical treatment would greatly benefit her. I wondered why so many supplements are needed these days. The explanation is simple. The food we take isn’t the same as the food we used to take. And the food our parents ate during their pregnancy when they were carrying us isn’t the same as what our grandparents ate. The food has more chemicals, more steroids, more processing, less nutrients, less vitamins, less minerals. More of what we don’t need and less of what we need. The environment isn’t the same. And we’ve paid for it through the years. And in my case, my child is suffering from it.

Each child has a different chemical composition, so to speak, so we need a doctor to guide us. Ate had this test done and we found out that she had a lot of toxins in her body. And that her biological make-up could not cope with it. So there! We have to find supplements that will help her and foods to avoid for her.

Your Child without Glasses? Help your child to perfect eyesight without glasses
By Janet Goodrich

Can’t find a photo of the book online and don’t want the hassle of taking a photo of the book I have. I just borrowed this book by the way. But I would like to get my own copy as well as the other more recent books of Goodrich.

I wish I had read this book before. Or at least I wish my parents did. I have poor eyesight. And the only reason why I don’t wear glasses or contact lenses now is because I had laser surgery done a few years ago. If only I knew these before! Well, at least I can start applying them now and hopefully not need reading glasses at 40 – as what the eye doctor said would probably happen even after surgery.

This book comes with fun activities and even songs with notes for the keyboard! Yes, you sing to your child to help her vision. I’m sure it will also help Ate’s hearing problems! Hmmm… time to find a book on how to improve her hearing.

Embracing God’s Purpose for My Special Child
By Malou Tiongson-Ortiz

I read this book without tears, to my surprise. My dad has been trying to read it, but after a few paragraphs he has to put it down because his face is covered in tears. A fellow special mom recommended it to me and I immediately went to the local bookstore to purchase a copy. It is written by a Filipino mom just like me. Her daughter has Down’s Syndrome.

It really puts everything in perspective and really helps special parents cope. She had put into writing all that was in my thoughts and in my heart. At least most of it! Everything she said I knew, perhaps because of my Catholic upbringing. She quotes a lot from the Holy Bible and it has been the same Christian teaching ever since the beginning of Christianity. She had applied it all to having a special child and reading her book not only inspired me, but organized my thoughts and strengthened my resolve. I know now that God was, is and will always be beside me because of the blessing He gave us.

This is another basic must for any special parent. And I dare say, even for none Christians. It may help you find your faith. All the more I am convinced that the only way we can really love our special child, is to love God and place complete trust in Him.

I read this once, but it is good practice to read it over and over again to find strength.

Lord, I place Ate at the foot of your cross. Ate is your warrior here on earth fighting to save as many lives by touching and inspiring them to be holy and pure as she is. As her mother, I place my life in Your hands. Mama Mary, guide me in being the best mother to Ate. Do as you will, Lord. I pray that my life will be a worthy offering to You, because I know I do not deserve a blessing such as Ate.

Infant Visual Stimulation - make your own part 1

Black and White

Red and White

High contrast colors and toys are great visual stimulation for babies. The vision is the last to develop in infants because inside the womb it was pitch black except for those times when we put the flashlight close to my tummy. We did that flashlight to get Ate to turn around when she was still in breech position.


We found this toy rattle and bought it for Ate for her 1st month birthday. We named this soft rattle Pupu. Not very creative but that's what Ate seemed to be doing all the time -- poopoo!

Inspired to find more infant visual stimulation toys I went around looking for a mobile with these colors. I couldn't find any locally so I ended up making my own blocks. The photos are the personalized touch. And of course, letters forming her name. These blocks were placed randomly beside her crib because before 1 month, she was looking mostly to her side. Eventually she was able to look up at the mobile.


Using the mobile given to us during a baby shower, I placed the blocks I made using red ribbons. I simply tied it to where the other mobile toys were. The mobile turns too! Manual though. And it lasts for 3 minutes so I have to wind it up again.

It was good visual stimulation for Ate, I think. Eventually she started looking up. Sometimes I would put a flashlight beside her and let the light point to the black and white images. She really looked up then.

The downside is these are just printed on photo paper and I assembled them so they're not very durable. But they're very light weight so if they did fall on Ate it wouldn't hurt. Plus, I couldn't put heavy weight blocks anyway.


This is Ate's daddy's crib when he was a baby. It's that old. Ate's grandma also used the same crib when she was a baby. It's really that old!!! Call it a family heirloom. We used it for a while but eventually we got a Graco Pack & Play when she was able to move around more.


Ate had the same color theme for her baptism. These chocolate cupcakes had white frosting with red sprinkles and mini-oreos. My sister in law helped me prepare these.

And even her cake was black white and red. We got a plain white cake and did the decorations ourselves. We used Hershey's chocolates chopped up, mini Oreos and red Gummy Bears!

Steak and Paksiw

Happy 2^nd Wedding Anniversary to us! Happy to be married to my hubby for 2 years now with 2 kids – our little miracle Ate and our second one on the way!

Last September 8 our plans had to change again. The plan was a simple lunch in Bon Giorno in Tagaytay while Ate stayed in her Oma and Wowo’s house. But she had been having this runny nose for a week and on our date, she had a slight fever. We still brought her to Oma and Wowo’s house where it was cooler. And we still had our lunch date, but not in Tagaytay.

We tried a new restaurant called Wooden Horse Steakhouse which was nearby. Molito Building near Alabang Town Center. It’s been on dry run for 2 weeks and grand opening hasn’t been scheduled yet. Some of the items on the menu weren’t available but the waiters were eager to please us. And they looked sharp in their tailored black cowboy shirts, denims and cowboy hats. Only a few dined there for lunch since it was also a weekday.

Food was great! We started with yummy melt-in-your-mouth onion rings which surprised me because I normally don’t like onion rings.

We had sirloin steak and tenderloin steak. Yeah, we’re meat eaters! I wanted my steak a little bloody but to be safe during this pregnancy I had it medium well while hubs had his medium so I could still taste it. The chef and one of the owners is Japanese and we could see him through the glass wall kitchen. I just love it when the chef is the owner of his restaurant. They really make sure everything is served well. Our steak came with options of A.I. sauce, gravy and this Japanese sauce. Of course we had the Japanese sauce which had a little red wine in it. That was good.

There was no more room for dessert though. And we had to head back to Ate to keep watch.

Ate slept most of the day and appeared very weak. Her fever was slowly going down with the help of Paracetamol every 4 hours and constant wiping with vinegar water. Yes, vinegar has it’s medicinal use! Don’t bath your baby if she has a slight fever.

We warmed water and mixed it with vinegar. We dipped her face towel in the mixture, squeezed out the extra liquid and constantly wiped Ate’s forehead, neck, armpits, arms and legs. We did not wipe her back, chest or stomach area since this can add to the colds she already has. Right after wiping with the moist towel, we wipe again with a dry towel so it doesn’t dry up on her skin.

We saw the temperature drop slowly throughout the day. We had a log book and took temperature often. And mostly before and after her vinegar wipe. It would really drop.

Salinase was used for nebulising her and we let her sleep as long as she wanted. We’re glad that she still had her appetite for meals and milk. Lots of hugging helped too. And I spent most of the time just lying beside her. We really think close physical contact is part of the healing.

A great help which we also believe in is homeopathic remedies. Our homeopathic doctor gave us a remedy after I told him all the symptoms. We believe his previous remedies was also what controlled or even stopped Ate’s infantile spasms. More on that another time.

By evening, Ate’s fever had gone down. And hasn’t returned since. We didn’t have to wipe her with vinegar water anymore but she did smell like paksiw. Our little kutsinilla or baby lechon heehee! Yes, it was yummy hugging her!

A short visit to a new paediatrician in the nearby hospital assured us that we were doing the right thing. There was no phlegm in her lungs and it sounded clear. She just had a stuffy nose and sleeping on her belly allowed her to breath better at night. We were to continue with the homeopathic remedy, nebulize and be on the look out for fever. Her rashes on her forehead didn’t alarm the doctor and we observed that it appeared red only when she perspired. Little bumps were still there so we just put topical ointment – Jar of Hope by Indigo Baby which is proven safe, has natural ingredients and most importantly did not conflict with homeopathic remedies.

Right now she’s sleeping on her back again which means she can breath better. She was a bit on the lazy side today, I would say. But that’s okay since she’s recovering. She’ll have her exercise again on Tuesday when she meets Pablo Beelen for the third time. I’ll let her do her other more relaxing activities for the next few days.

Mmmmm! She smells so good now. Will let her sleep beside me tonight.

Unexpected changes in our lives

Earlier posts are my journal entries that I decided to share. This post dated September 8, 2010 is when I started this blog. I realized that I should also share what I had gone through before September 2010. I read through them again and saw myself in the mirror.
....

Here I am again attempting to start a blog! I’ve had a few blogs before but ended up being nonsensical, trivial and sometimes mundane. Most of time, it felt much like a diary of an uninteresting life. Nothing had kept me really wanting to write and I’m not sure if I really had much to share. Only close friends read it I suppose. And when I read it, it was just cherished memories of a simple private life that I decided it wasn’t really worth broadcasting over the internet. Not sure if anyone was interested or found it helpful anyway…

But life has changed. Soon after getting married, we found ourselves pregnant. We were totally clueless parents. Come to think of it, we still are because of all the unexpected surprises!

Finding out that we were pregnant, to begin with, was a wonderful and unexpected surprise! After 9 months and 1 week of wedded life, we gave birth to our first child, Ate. Yeah, she is a honeymoon baby (or technically before honeymoon since we went for our honeymoon a month after the wedding). God has a funny way of telling you that you’re ready for His next surprise.
I waited impatiently long to be married and I’m glad I did not marry earlier because I believe I would have lacked a certain maturity. We decided to let go and let God decide when we would have a child. And I thought that I would have to wait again before having a child. But He has his plans! And boy did He give it to us!

We were the typical first time parents for the first 5 months of Ate’s life. I remember our first diaper change in the hospital without the nurse or my paediatrician friend. It was early in the morning and we were both sleepy. Ate cried incessantly until we both got up. Her poop was still the gooey black type which is typical of babies just hours or days old. We fumbled, she was not comfortable, we forgot to warm the water, it took us several minutes when it should it be quick, but we still did it. It was our first team effort into something so important to us. It was nothing compared to our team effort in fixing up and maintaining our home. It was thrilling, scary, wonderful, fulfilling… just emotion packed! Each moment we enjoyed with her from changing diapers, bathing her, feeding her, having her vomit on you. She smiled and cooed in a few months. She knew her mama and her papa. She looked at our faces and smiled at us and we smiled too. We were the typical family then. We were all growing together. She bonded us and she continues to strengthen our marriage.
But on her fifth month, it was a rude awakening with a rush to the pediatric emergency room. It was her first recorded epileptic seizure called infantile spasms. We were all dressed up and on our way to my brother’s wedding. In her car seat, she involuntarily rolled her eyes up, jolted her arms, extended her back, gasped for air and slowly her lips and skin around her lips turned blue as she did this jerking motion 8 to 10 consecutive times in the car. A few days earlier we had already brought her to a child neurologist after much prompting from our paediatrician friend. She had head-lag and could not lift her head when prompted up to sit. We were to just observe then.

By the time we were at the E.R. that day, all her vital signs seemed normal. The child neurologist said it could have just been aspiration because she was drinking milk from a bottle right before it happened. But I knew it was a seizure even if I had never seen one before. We had an EEG done the next day and there we saw the seizure spikes. A few days later, she had another seizure attack. It quickly became a daily attack and was happening more often in a day. The 8 jerking movements quickly went up to 100 jerking movements lasting several minutes and these episodes increased to as much as 5 times a day. On a few occasions, she turned blue and desperately gasped for air. We could not do anything but hold her close since she had to “ride” through it.
We were all helpless, clueless and it was a time of despair, anger toward God, confusion and sorrow.
We had an MRI done and the results devastated our family.
Ate was diagnosed with lissencephaly or smooth brain….
Since then, our family life has never been the same. We have gone through several buckets of tears and will most likely go through more. As my sister in law so wisely put, the tears will never stop, but neither will the moments of joy.
We are totally clueless as to what will happen next and how to handle it. Thank goodness for family, friends and friends we have not met yet who have shown us unexpected support. This blog is our family’s journey in life blessed with a special child. We are an ordinary family going through ordinary trials that any family goes through. We write here to remind us of the many things we should be thankful for. We share what we go through because either we find them worth sharing online or we simply just want to write our thoughts. Many of what we post here are personal and perhaps may have little to do with having a special child. We are a simple family, trying to live our ordinary lives extraordinarily well. Clueless as to what God’s next surprise will be. Not expecting, but hoping. And we do this all for the glory of God who continues to bless us with miracles each day.

Maybe I won’t be such a “clueless” momma one day. If I say it fast enough with a smile on my lips, it could sound like “coolest” momma – which is what I need to be, cool and collected.

When Anya was hospitalized

When we were rushing to bring Ate to the hospital, mom told my dad to make sure that Ate receives the Anointing of the Sick. I didn’t think she’d need it because I was pretty sure Ate would survive pneumonia. But my dad assured mom that even God were to take Anya, she would go straight to heaven because she’s so pure and innocent. I never thought I’d lose her.


It wasn’t until her 4th or 5th day of confinement when I thought that I could lose her, She was getting well from pneumonia but she had to be given extra medication to prevent ulcer and steroids to open up pathways to her lungs for the phlegm to get out. It’s these complications that happen that could break her. I had feared that her strength would wane before the medicines took effect. And then I cried.

I could not bear the idea that she would be taken so early from me. In her first few months, when she was going through physical pain from her violent seizures, and when I was going through pain thinking that she would live life as an invalid, I had thought that death would be a better alternative. At least for a split second. But I remembered what a friend said, that Ate’s condition is better than other children who have terminal illness. The parents knew that time with their child would soon come to an end. Their sorrow would eventually stop, but so would their joys.

Ate gives me so much joy. Even when she was not reacting to us she still somehow managed to make me happy. It’s kinda hard to keep playing with someone if they have no reaction. Somewhat like autistic children, they don’t seem to care about you. My friend told me too that she would rather have a child with cerebral palsy than a child with autism since they live in their own world. They’re with you, but at the same time they’re not.


Whatever the case, I can’t bear losing Ate. So I cried and cried alone that night since my husband was in the hospital with her and I couldn’t stay with them. I apologized to my baby inside me. I asked him to forgive me for the sorrow I felt that could have affected his development while inside me. He’s a strong baby I know. I talked to him because I had no one else to talk to and he was the best person to talk to at that time. He knew how I felt and probably shared in the sorrow too. I told him not to bear it on himself. Well, that night he was kicking and moving around me and trying to make me feel happy, And assured! And I did feel that. More than his kicks and spins inside me, I felt his love and comfort.

I worry too – I think too much – if I have enough love to show to both my children and my husband. Love is deep and as long as I am anchored in the Lord, I’ll have all the source I need. But on the human plane, will I have enough energy and time (or time management skills) to give them the kind of love and attention they need from me? I hope so! Guardian angel, please help me!

It’s been 2 weeks since we have been out of the hospital and Ate is looking good. Even her 1st session with Pablo Beelen was very good. He promised that she will walk, run and most likely go to elementary school. I think she can do more. I have to believe it.

Anya vs. Pneumonia

August 22, 2010  Ate vs. Pneumonia

Ate has been home since Monday!  Yipeee!

Since we arrived home, we took a day to rest and sleep through most of the day.  The following days was immediately trying to get back to our routine.  We had physical therapy since she had spent a week in bed without any exercise.  We had cranio-sacral therapy for some detoxing and relaxation.  Another day with mommy and daddy just playing with Ate who has been babbling and making a lot more sounds.  She slowly gains her appetite.

Breast milk donations came in at a timely moment and Ate has been drinking pure breast milk to strengthen her immune system.  (We used to alternate potato milk with breast milk).  We would still need more breast milk donations in the next few weeks so please pass the word!  (Formula milk aggravates her seizures, animal milk hasn’t been tried and may be risky too, potato milk is just a very poor substitute) A few more kilos to gain for her and of course, she must maintain it and then gradually increase it too!



We thank you for all the support and the prayer warriors.  Some who did not know her now have her in their hearts.  She also has you in her ever-so-pure-heart.  Ate’s strength continues to astound us.  Even the doctors were glad that with just the least potent anti-biotic she overcame pneumonia considering her neurological condition.  And that this is only her first time to be hospitalized compared to other special children of her age.  Of course, we don’t want it to happen again!

The financial burden we had (during that week long stay) and now face once again is another aspect of our reality.  But we are just too glad that she has been gaining her health back. Though great are our financial challenges, greater are our blessings.  We believe our marriage is stronger as we face and overcome new challenges together.  We feel our faith is growing and our dependence on God becoming more obvious to us that is has become an enlightening experience.  We lost so much but we gain so much more.  If we were our old selves we would probably say how weird we are right now.  Weird nga talaga.


And the greatest blessing is that we have not seen any infantile spasms since!  On the Feast of the Assumption of our Lady, we asked her if she would let us go home and leave the hospital.  She probably said we asked for too little.  On that day and since that day, Ate has not had any infantile spasms whatsoever!  And she has been babbling and making sooooo much noise compared to before!  Of course not yet appropriate to her biological age, but a great milestone for her neurological growth!  Praise God!  Thank you Mama Mary!  Thank you prayer warriors here on earth and in heaven!  Thank you Ate for blessing us all!



The fight history:
Wednesday, August 4: Had a runny nose and slight cough

Thursday, August 5: Cranio-Sacral Therapy helped by letting the runny nose run some more! Mom kept wiping nose!  Slight fever in the evening. Natural remedy was to wipe me with warm towel soaked in water and vinegar. Fever went away.


Friday, August 6: Still had a runny nose.  Cough didn’t sound too good.  Slight fever in the evening. As temperature rose, seizures manifested with greater intensity. Homeopathic remedy was changed to get rid of fever. Cuprum was addressing the seizures but febrile seizures had to be addressed.  Sponge bath with smelly vinegar again brought fever down.

Saturday, August 7: Fever gone, no runny nose, cough started to sound like a bark.  Nebulizing with salinase.

Sunday, August 8: Was barking by now.  Vomited everything she drank with some phlegm coming out.  Fever started to slowly rise. Doctor came for a home visit. Diagnosed Pneumonia.  Doctor stayed until fever went below 38 and gave warning signs if hospital was a must.  Ate had risks of allergic reactions to medications (which she had at 6 months) and all vaccines have been moved to a later date because of neurological condition so immune system may not be able to handle injections and medications.  Febrile seizures still there, homeopathic remedies changed again.

Monday, August 9 Anthony Racho’s birthday: Early morning fever suddenly shot up (probably to 40). Body felt cold, fingers turned blue, lips turned blue, eyes rolling up, may have lost oxygen to the brain, shallow and fast breathing, rushed to the emergency room.  Oxygen support immediately given, heart rate above normal, respiratory rate way above normal.  Felt like she was running a marathon.  Ate’s lungs to begin with are weaker compared to normal lungs.  Nurses screwed up the oxygen support and Ate inhaled some water to her already weak and tired lungs. Parents remained calm.  Anti-biotics given through i.v. after skin testing showed no adverse reaction to medications.  Ate learned to get mad.  For the first time in her life she cried of frustration and pain (except for the violent seizures she had before) because of the many needles.  Slept most of the day.  A few infantile spasms for the day.  Asked for Anthony to intercede in heaven.  Anthony is Mommy's older brother who went to heaven when he was just 9 years old because of brain cancer.


Tuesday, August 10:  Fever went down.  Lungs not yet clear.  Respiratory rate still too fast.  Breathing shallow and fast.  Slept most of the day.  Cannot eat/drink yet, on i.v., stomach continues to churn so new meds given to avoid ulcer.  Blood sugar tests with needles continue.  Ate recognizes the nurses she doesn’t like (those who poke her) and those she likes (those who massage her back with this ridiculously expensive gadget to loosen the phlegm).  Ate is very tired and losing weight.  Neurologist came to see Anya and not concerned with the seizures but with the significant weight loss.  Ate needs to gain 4 kilos asap.  Ant-tart remedy given.

Wednesday, August 11: Fever was gone.  Heart rate much better.  Respiratory rate still fast.  Breathing fast and shallow.  Had more waking hours.  Was carried during those waking hours but couldn’t move around much because of all the things injected in her including the oxygen support.

Thursday, August 12: Xray done in the morning showed significant loss of phlegm but not enough to send her home.  Steroids given through i.v. to open pathways of lungs.  Ate must eat today.  Respiratory rate improved within the day and Ate had good chance of avoiding tube feeding.  It was a matter of how long her strength would last from the time she got sick vs. how long before the medications would take effect.  Good thing her strength is still there!  Many prayer warriors!


Friday, August 13: Are we going home soon?
Email update: Ate was able to drink milk from the bottle!  She did not need the 10 inch tube down her throat straight to her tummy!  After 5 days of no food/milk it was a MUST for her to eat today.  And thank God she did not need the tube!  She drank from the bottle without aspirating and without compromising her breathing!

She still has oxygen assistance but it is slowly being decreased and it seems she is able to handle it.

She still has phlegm in her lungs but also decreasing.  The steroids (given to open up pathways for phlegm to get out) is also being decreased.

Her milk intake is also slowly being increased since she can't gulp down 9oz like she used to.  But she'll get there eventually.

Hopefully she will be discharge by Sunday morning.

Saturday, August 14: Still could not go home but oxygen support removed and Ate is able to breath on her own with enough oxygen levels in her body.  She drank some more milk.  The i.v. was transferred to her leg.  Still saw 2 infantile spasms today.

Sunday, August 15 Feast of the Assumption of Our Lady:  Mama Mary, please let Ate go home today!  She had better plans – we did not see any infantile spasms or seizures today!  We stayed on to finish the 7 days of anti-biotics.  Mommy couldn’t resist and spent half the day with Ate and wore a mask the whole time!  Mommys doctor ordered her to stay away – took anti-biotics and pro-biotics.


Monday, August 16: Finally going home today!  Daddy was getting tired from his day and night shifts at the hospital and was lacking lots of sleep.  Took a while before everything was settled with the cashier.  Upon arriving at Oma and Wowo’s house to pick up some things, Ate was smiling and cooing with excitement.  She knew where she was!  And when we were finally at home with Mommy and Daddy in bed, Ate was rolling on her bed and was glad to be home!

Looking for Breastmilk Donations!

Hi everyone!

Ate needs more breastmilk.  Below is an email we sent several weeks ago and we got some breastmilk donations then.  Thank you to all who shared breastmilk!  Ate cannot take formula and animal milk... So breastmilk keeps her going!

I boldy ask for human breastmilk donations for my daughter Ate.  If you know anyone who has some to spare, we are willing to do pick-up of the frozen breastmilk and I will just give them breastmilk storage bags in exchange.

Ate is 1 year old and has been on breastmilk except for her 6th month when I supplemented with formula.  The formula aggravated her seizures and two child neurologist, one pedia-nutritionist, biomed advised not to go with formula.  Her seizure control improved when we went back to breastmilk full time (along with other remedies and therapy that we did and still do).  We have also put Ate on a GF/CF/SY (gluten-free/ casein-free/ soy-free) diet.  So fresh cows milk, goats milk, soy milk and other milks are to be avoided.  While there is no scientific evidence that these milks will make her conditions worse, we would rather not risk it.  We decided that it's better she is underweight and steadily growing and gaining weight slowly, rather than be the correct weight for her age but have multiple seizures per day.

My milk supply has been very low and practically gone.  My body can't seem to handle it now that I am already 3 (now 4) months pregnant with our second baby.  I know my body will prioritize giving the needed nutrients to my baby inside, then next would be the breastmilk for Ate, then last would be nutrients needed by my own body.  My ob-gyne and nutritionist/ob-gyne confirmed this with me.

While several moms are able to breastfeed their child until they are 8 months pregnant and eventually do tandem breastfeeding, I don't think my body will allow that.  When I do have breastmilk again after giving birth to our second baby, I will be giving breastmilk to Ate - with the youngest baby always the priority.  She will be receiving colostrum which would do her a lot of wonders.

So Ate just needs a supply of human breastmilk from now until January 2011.  She won't be needing as much as a 3 month old baby since she is already eating solids and already 1 year old.  But nevertheless, human breastmilk will help her a lot.  I should be able to coordinate with moms since I can't get all the breastmilk stored in our tiny freezer all at once.

Please forward this to breastfeeding moms if you know of any.  I won't have much to offer them but my gratitude, constant prayers and... breastmilk storage bags.  We live in Paranaque so it would be great if the moms live nearby, although we are willing to travel further to get breastmilk for Ate.  Her weekly therapy is in Greenhills so we can also collect breastmilk there, my sister-in-law lives in Pasig and we see each other once a week so we can also get breastmilk in that area.  And Ate's dad works in Makati so we can also pick-up there.  Just a lot of coordination is needed since we all know breastmilk has to stay frozen until it is ready for consumption otherwise it goes to waste.

Again, thank you for your support!  Ate is doing better now.  We went to a children's party that was so noisy and we got a lot of good reaction from her even without hearing aids.  We really believe she will normalize one day.

We need only 6k Mabuhay Miles for therapy in Singapore!

Mabuhay Miles sent an email for a special promo that they have.  Only 6k miles for a round trip ticket to Singapore instead of 20k miles!  So if you have 6k miles to spare, please do let us know!  Ate has another scheduled trip for therapy in Singapore!

The first trip we made, a good number of friends wanted to donate miles.  But the transfer fee was too much that after computing it, it would come out more expensive than buying a ticket.  Instead, we got generous friends who had lots of miles and gave us 20k miles by purchasing the tickets under our names.  Updates of the trip and Ate's therapy in the previous blog.

In order to avail of the promo, we have to book our tickets between August 2-4.  We emailed Singapore if we could have our next schedule and we have one this October which falls within the promo flight period.

So knock knock again dear friends!  We need donations of 6k miles for each ticket!

March 2010 to May 2010 diary

March 23, 2010

Don Alvaro

On this date, Blessed Alvaro started his eternal life in heaven.  Once he is canonized, today would be his feast day.  We prayed to him and the whole morning Ate did not have any level 5 seizures.  I would say it was a good day today.

Ate had therapy in the afternoon.  And she cried a lot.  Considering that she hardly got any exercise last week, she did fairly well.  Her arms need to get stronger.  And we’re starting her on assisted crawling already.  But already started that before – just haven’t been able to do it lately

March 31, 2010

Ate is officially 9.5 months today.  She got hearing aids.  A bit disappointed since I was expecting more reaction from her.  We’ll just to have to wait and see.


April 24, 2010
A GRIEF I CANNOT UNDERSTAND

I suffer a grief that I cannot explain even to myself.  Today I found myself crying again after several weeks of not shedding tears.  The last tears I had was in January when the hearing test showed that Ate has profound hearing loss in both ears.  The tests say she is deaf.  Back then, part of my denial was at work.  I have not said that “She is deaf.” Because I still believe she can hear and that she will hear clearly one day.  I don’t know by what miracle that would be, but it will happen one day.

What probably triggered my tears this morning was that I was slowly accepting a future I still believe is not for my family.  Yesterday, I was at Christening where I am the Godmother.  Other children were there.  There was a 3 month old baby boy.  He looked just like his father and smiled a lot like him too.  The other mommies and daddies would smile and coo at this baby boy and do anything to get him to smile.  And of course, after some staring, he would break into a smile with some really adorable drooling on the side.  The adults reacted so excitedly and were encouraged to make some more funny faces.

When I brought Ate to them, they did the same.  Except they received no response to their silly faces.  Oh silly and silly them.  I had not briefed them that they should not expect any reaction.  And silly them for thinking my brain-injured child would behave the same way.  The adults stared.  Very briefly, but I saw it from the corner of my eyes.  And I felt it.  They did not know how to react to a special child.  It is kinda hard to be encouraged to make more silly faces if you are not receiving any kind of reaction.  What is worse – no reaction or a negative reaction?  I know of an adult who likes to annoy kids so when she gets a negative reaction, she’s actually more encouraged to tease the kid.

Other older children were running around.  Bobbing balloons on strangers, dipping toys in the little fish pond and basically just doing what normal kids do – playing on their own with kids they had met a few times before.

This morning I was driving past some children’s schools.  There are several where I live.  And one is a progressive school which was suggested to me before – in case I would need to send Ate there.  In the strong likelihood that Ate cannot go to a normal school.  These are words that I still have not accepted.  I believe that in the future, normal schools will not exist and that Ate’s school will not be considered not-normal.

What will my daughter’s future be like?  I had spoken with a handful of special moms over the phone.  A particular mom with an autistic child basically has her life revolving around her 10 year old son.  She home schools him and has a social life only after he goes to sleep.  Her personal time is at 5am to 6am when she goes running for exercise.  The rest of the day, her schedule is filled with lessons for her son.  The whole morning is teaching the boy “life skills” like fixing his bed, dressing himself.  A normal child would take 5 minutes tops.  This boy takes 3 to 4 hours.

How normal will my child be?  How far from normal will she be?  Will she be happy?  I just want her to be happy?  How do I know she is happy if she does not even have a social smile?  When she is not crying then she is happy?  How about when she stares blankly, is she happy?

When she had strong violent seizures, I kept asking why she suffers.  The suffering of the innocents is really a mystery.  I turned to Mama Mary.  While Ate was asleep, I asked her to ask God to give me strength.  I asked her to call on Mama Mary for me.  And I stared at Ate while she slept, Mama Mary let me feel that she shares in my grief.  Actually, she allows me to share an itty bitty part of the grief she had when Jesus suffered.  Of course He was innocent and he suffered for the sins of others, willingly.  Ate suffers and I cannot say it is her will, but God’s will.  Perhaps God chose her to not be corrupted by human will that He chose for her… that she lives with a mal-formed brain.  And with her malformed brain, she has a perfect soul – at least as perfect as it can be since she was born with the sin of Adam.  Is it her will?  It is God’s will.  He decides for her how she should live.

I don’t want her to remain a child forever.  I want her to live a beautiful life.  But perhaps it is a limited kind of life that I want for her.  She is most likely more free than I am or than any of us.  Her freedom is true freedom.  Only a devout and learned Catholic will understand this point.  She is happier than most of us, even if she does not show it with a social smile.  Maybe what is normal, isn’t that great after all.

…

This evening, I spoke with hubs and told him the grief I felt this morning.  Parents feel disappointed when their children fail or do something wrong because their children chose to misbehave or disobey.  I told him how Mama Mary told me that Jesus is innocent and suffered too.  And that He chose to.  Ate did not chose and perhaps lives a will better than ours because she lives the will of God.  I was pleased to hear what hubs said in response.  He believes that Ate did choose.  She chose to be with us, to be born with lissencephaly.  It is not reincarnation.  Our Catholic faith teaches us that our soul is eternal which means … no end, no beginning.  I’m not a theologian nor am I well equipped to defend that mystery.  But I believe it.  Ate, together with God, chose to be with us here on earth.

After that, I had just spoken to a special mom and she told me again… God chooses the parents of special kids.  He chose us.  And now I have a book to purchase and read: Embracing Gods Purpose for my Special Child by Malu Tiongson-Ortiz.  Can’t wait to get a hold of this book!

May 4, 2010

I’ve been a little sad the past few days.  Actually, it was just yesterday that I felt sad.  And 2 days ago I had just gone to confession and thought that I would start feeling more positive again.  And yesterday I also felt really weird, like I wanted to vomit and I felt dizzy.

Possible reasons:
1.    God is telling me something I have yet to understand.
2.    Ate had very very subtle infantile spasms which has not happened for almost a month.
3.    We were at a Gymboree trial class with our birthing class and saw how the other regular babies were doing.  And I’m sad to see that there are many things Ate cannot do just yet.
4.    I’m pregnant.

Should it be the 4th reason, I probably wouldn’t know what to do.  I’ve been checking daily by following the Billings Method and so far I’m not in the fertile period.

May 10, 2010

There is a fine line between pure HOPE and pure EXPECTATION.  It is difficult to find.  And you have to draw the line yourself.  It is also very difficult to explain.

Hope needs faith.  But then again, there is expectant faith.  You hope for something you know you do not deserve.  You expect something you think you deserve.  You want it so much, you work hard for it.  But you have to constantly tell yourself that no matter what you sacrifice, you are still undeserving of it.  Even if it is something you hope for someone else, you have to think that you do not even deserve to see it happen.  That you do not deserve to feel the joy of seeing another’s joy in it.  That you do not deserve to share in that joy.  But you want it so much that you continue to hope, ask mercy and constantly beat yourself for being an undeserving person.  And yet you believe it will be given to you, that the joy will be shared with undeserving you that you never stop hoping but expect nothing.


I have already received something I do not deserve and this gift continues to give me joy that I do not deserve.  This gift is my special daughter.  During my first few weeks of pregnancy I cried to Lord with tears of joy and bewilderment.  I remember it was during the consecration at the Greenbelt chapel one afternoon mass.

Am I ready Lord?  What made me deserve such a beautiful gift?  I am so blessed to carry inside me a beautiful soul.  The gift of life You shared with me Oh Lord.  Please use me as You will.

Several months later, we learned that the beautiful child was in a poorly developed body with a mal-formed brain.

Oh where did I go wrong Lord?  Why does she have seizures?  Why does she go through pain?  She is so innocent and yet she suffers?  Let me suffer instead.  Why have you given this to me.

Not once did I see Ate as a burden.  Not even for a millisecond.  Not once did I worry about losing my life in having to care for her nor giving up my other wants and plans on earth.  Because at that mass when I cried to the Lord, I already gave up everything.

I thought about the joy of seeing Ate accomplish so much in life.  I expected it.  And my expectations were shattered when we learned she had learning disabilities.  She was not to become like all the other successful children out there.

Slowly we came to realize Ate has a bigger goal.  A greater task to accomplish.  Something we did not deserve and still do not deserve to carry out.  She is a warrior for Christ.  She is part of the army the Lord is building on earth.  Who would have thought we deserve to be witness to such?  And to be the physical parents of an angel on earth?  It still amazes us how her very presence changes our lives.  How undeserving we are.

We have learned to hope and not to expect.  And it is so beautiful to hope because it is so beautiful to rest in the Lord.  We can never have shattered hopes.  Maybe shattered expectations.  But hope will always be there.  Faith, Hope and Love – thank you God for these gifts.