Anya’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, Krissy.  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 Anya’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 Anya.  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 Anya’s diagnosis, then Anya 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 Anya 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 Anya.  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 Anya to know that I will be waiting with great anticipation for the milestones our second baby will reach.  Because I never asked it from Anya 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 Anya.  I thought I was hurting Anya for thinking this way.

But I had to be told, “That is Anya’s gift to you.  Without you knowing it, you’ve already had a paradigm shift.  Anya 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, Krissy.  For the person you have become because of Anya.  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 Anya 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.

August 22, 2010  Anya vs. Pneumonia

Anya 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 Anya 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 Anya 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.  Anya’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, Anya 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 Anya 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.  Anya 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.  Anya’s lungs to begin with are weaker compared to normal lungs.  Nurses screwed up the oxygen support and Anya 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.  Anya 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 Krissy’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.  Anya 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).  Anya is very tired and losing weight.  Neurologist came to see Anya and not concerned with the seizures but with the significant weight loss.  Anya 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.  Anya must eat today.  Respiratory rate improved within the day and Anya 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: Anya 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 Anya 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 Anya 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 Krissy couldn’t resist and spent half the day with Anya and wore a mask the whole time!  Mommy Krissy’s doctor ordered her to stay away – took anti-biotics and pro-biotics.  

Monday, August 16: Finally going home today!  Daddy Chito 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, Anya was smiling and cooing with excitement.  She knew where she was!  And when we were finally at home with Mommy and Daddy in bed, Anya was rolling on her bed and was glad to be home!

Hi everyone!

Anya 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!  Anya cannot take formula and animal milk... So breastmilk keeps her going!

I boldy ask for human breastmilk donations for my daughter Anya.  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.

Anya 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 Anya 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 Anya, 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 Anya - with the youngest baby always the priority.  She will be receiving colostrum which would do her a lot of wonders.

So Anya 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 Anya.  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 Anya'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!  Anya 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.

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!  Anya 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 Anya'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!

Wow it’s been that long since we made any updates on Anya.  There have been several significant updates and a few have been asking about her.  So in summary here it is – the good and the not so good (and in the order that they happened)…

    * Anya is going to be an older sister!  And we strongly feel it is a baby brother coming!  Woohoo!  It came as a surprise!  We had planned to conceive our next child in 2011 considering Anya’s condition.  And by planning, we remained faithful to the natural family planning which is “Church approved.”  Breastfeeding full-time and no idea of ovulation time, we also took precautions.  But one miscalculated fertile night, God decided for us that His plan is much better, His timing is perfect.  Feeling nauseous for 2 days, we took the home pregnancy test and prayed our rosary before looking at the result together.  Mama: “I don’t know what to ask for from the Lord.  Positive or negative result.”  Papa: “Then don’t ask for anything.  Just welcome what He decides.” … Waaaah! Positive!  We laughed together and congratulated Anya for she is now an ate.  We stuck to positive thoughts: Likelihood of lissencephaly or any brain malformation is nil.  An age gap of 1.5 years would be good so Anya has a companion and best friend as she grows up.  Baby sibling will be kind hearted, patient and learn a lot from older sister.  Anya will again have a taste of colostrum from Mama.  Baby brother learns to share colostrum! Hahaha!  Baby brother will do cord banking giving Anya the option to do stemcell therapy.  So all is good.  We trust the Lord will equip us to raise well the children He decided to give us.  As the days pass, we are more excited about our new baby!  Anya too!

    * Then the low blow after a high… Anya was diagnosed with very poor vision with an estimated grade of 800, which means, as the doctor explains, she can see only within 6 inches.  Corrective lenses are recommended but we did not avail of any then because the smallest pair of eye glasses was too big for her.  Shattered dreams and more tears came.  But knowing we were pregnant, we tried not to get depression in our lives because being sad just doesn’t do us any good right now.

    * Anya applies for a Philippine passport and gets it within 5 hours she steps in the DFA!  We had some help and went through the courtesy lane.  We presented her medical records and showed that we were confirmed participants in the special therapy in Singapore happening in 2 weeks!  And she got them on her first birthday June 15, 2010

    * Anya celebrated her 1st birthday in her Oma and Wowo’s garden with a few friends and relatives.  Lola baked her famous chocolate rich oh-so-yummy chocolate cake and Oma’s cook prepared her best-selling homemade cheese macaroni and addicting corn dogs!  It was a great simple party just like how our parties used to be back in our grade school days when character themes, food booths and professional party hosts were not basic requirements for birthday parties.  Thank you to those who gave Anya gifts that would help fund her therapy in Singapore.

    * Anya flew to Singapore on mommy’s lap!  Gave mom an easy time by sleeping soundly throughout the whole plane ride.  Stayed with her 7 month old friend Chloe Santiago in Singapore.  Thank you Tito Sonny and Tita Ira for letting us stay with you and having baby friendly equipment (like sterilizers, steamers, baby tubs) to lend while we were there!

    * In Singapore, ABR assessment was not so good – as expected.  We realized things about Anya’s musculoskeletal system that needs a lot of help.  Things we take for granted, like breathing, does not come easy for Anya.  Breathing with the correct expansion of the ribs actually strengthens the fascia (this tissue layer we never took up in biology class but just as or even more important than the muscles in our body).  Anya’s ribs are not developing normally and affect her ability to even do the simple thing of sitting down and bearing her own weight.  This is just one of her assessments.  The trained ABR therapists are positive and very encouraging that all these can change if we diligently apply the therapy technique they taught us.  We must do at least 3 hours a day until the next visit.  We opted to do everything manually since we did not have enough funds to rent the machine.  The machine would log in at least an additional 8 hours a day since the machine can work on Anya overnight.  We target to rent the machine in the next Singapore visit this November 2010.

    * Anya is in search of a qualified nanny/caregiver who can do the ABR therapy at home.  Mama still does it now, but as her tummy gets big, she would have great difficulty.  Any referrals?

    * Anya loves organic food.  We notice how she prefers them over non-organic produce.  She is picky with her food and went wild with delight when Mama added a pinch of salt in her veggies.  Poor little girl has been eating bland food.  Although if it’s organic, she loves it!  Going gluten free, casein free, soy free and preservative free on her diet is getting more difficult!  Mama is now challenged on what to prepare for Anya’s meals!

    * Breastmilk donations have been coming in.  But still need more to come.  Mama ran low on milk because her body couldn’t handle it.  At least Anya made it to one whole year of pure breastmilk from Mama.  Now taking Darifree as milk substitute.  And having donated breastmilk in between.  Thank you to all those who donated!  And for those who have breastmilk to spare, please let us know!  We will pick it up!  Anya cannot take regular infant formula and cannot take milk from animals since this aggravates her seizures.

    * Seizures still present but getting milder and milder.  No prescription drugs and only homeopathic remedies for seizure control.  A much better option for Anya.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth Selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity.

"Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.Once the shock and resentment wear off she'll handle it."

"I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, 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."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

MIRACLE UPDATES as of May 9, 2010

Good news!  Anya’s violent seizures are gone!  And we pray they stay away forever!  She no longer has the convulsive type.  The “remnants” of her seizures are just eye flickering which has also been lessening as the days go by.  And very very very subtle versions of the body jerking type that only Chito and Krissy would recognize.  We believe this is because of God’s mercy and grace and the many prayers sent her way.

Amazing things have been happening.  Anya is responding very well to her detox therapy – pooping out all the toxins she may have inherited!  She has been randomly smiling and laughing.  She has no eye contact yet, but she knows that she is loved so dearly especially when she is cuddled and carried.

Even financially, God has ways of providing.  Now that we are just a single income family, we sometimes worry about daily expenses.  But somehow, we have managed to have Anya’s weekly therapy sessions because of friends (and friends we have not yet met) that unknowingly sponsor such sessions.  Kind people who have shared their financial blessings surprisingly are the ones who thank us for allowing them to help Anya.

We wish to thank this particular lady who does not know Anya and very specifically prayed for Anya during each seizure episode.  She instructed us that for a week, we are to ring her phone whenever Anya is having a seizure.  She would drop what she is doing and pray at that moment.  And every 10pm she prayed for Anya.  I rang her phone for a week because after that, Anya’s violent seizures went away.

Around the same time, a very devout Catholic man and motivational speaker saw Anya during one Kindermusik class and I explained to him very candidly about Anya.  Immediately he asked if he could pray over Anya and of course he did.  After his prayer he said, “Get ready for the miracles.”  We really felt a big miracle coming.  A few weeks later, her violent seizures disappeared.

From January 2010 to March 2010, Anya's head circumference did not grow which means her brain did not grow.  But 1 week into her detox her head circumference grew .5 cm, then two weeks later, another 1cm!  Total 1.5cm in 3 weeks when for 3 months before that, it did not grow at all!!!!  That's faster than normal growth!

To all who have Anya in your prayers, thank you very much.  Prayers do wonders as it strengthens our family and strengthens those who are doing the praying.  Please still include her in your prayers for she still has a long way to go.

We have plans for Anya to have a very specialized therapy in Singapore this June 19-20, 2010.  Luckily, instead of us going to Europe, the group goes regularly to Singapore which is nearer and cheaper.  Anya will be “examined” and a specific therapy will be done called advanced biomechanical rehabilitation therapy or ABR.  We will then take home materials/therapy tools that we should do on Anya at least 3 hours everyday.  After a few months, they will assess Anya’s development.  The website is www.miraclekidz.com if you would like to know more.  

We have a place to stay already.  We just need to raise about PhP115,000.00 to cover for the initial therapy session.  And some pocket money for local transportation.  With our current Mabuhay Miles, we have 1 free round trip ticket.  So we just need one more round trip ticket for an adult and 1 round trip ticket for Anya (about 30% of regular ticket price since she will be on mommy’s lap).  We hope our friends do not tire helping Anya in her journey to recovery.  We know more miracles are going to happen!

This was an email sent last February 24, 2010 which we forgot to upload in the blog.

BTW, target date of garage sale was moved to April 10-11 so we have more time to prepare.  And we've tied up with a piano concert (see photos) for fundraising thru ticket sales and sponsorship packages.

Email sent February 24, 2010

Dear Family & Friends      ....    (long read below)

It has been more than a month since we first sent our first email about our daughter Anya.  And we are thankful for the many supportive replies we received.  So many people around the world are cheering on our little Anya.  Several prayers have been passed around including the prayers below.  We printed out a few and distributed to family & friends.  We will print some more – we ran out of ink!  A few have asked for her photo so that seminarians and nuns can pray over Anya.  People we do not know said they will give us their miles for our overseas trips.  Please hold on to them, we have our first trip this July 2010 ;) A few friends have visited Anya.

The most touching so far is from an engaged couple.  They called to tell us that in lieu of give-aways for their wedding, they will give their allocated budget to Anya’s needed therapy.  They will even distribute the prayers at the wedding.  It is such a beautiful gift.  Their wedding give-away is a message of complete trust in God for they truly believe that Anya’s miracle will come true.  And in the sacrament of marriage, complete trust in God is what is needed.  And to their guests, they share a message of hope, generosity and love.  It brings me to tears every time I think about that couple.

Miracles happen everyday in Anya’s life.  She can roll to her side, her violent seizures are gone ever since she started on homeopathic remedies, her eyes don’t cross as often, she doesn’t scratch her eyes as often (which is a kind of seizure).  She won her 2 week battle over a really bad cough and cold before it got any worse.  Pneumonia is the number one cause of illness and death for the condition Anya has… so anyone who sneezes near Anya gets us really protective.  New therapies that offer a better life for Anya are presenting themselves to us.  A therapist (specializing in cranio-sacral therapy for infants) based in Hong Kong will be in Manila this April and she can do the initial evaluation of Anya then.  That saves us 1 trip!  Afterward, we would have to go to Hong Kong.  People we don’t know are praying for Anya.

A lady whom we do not know received our email and came to our house (which is so out of the way for her) to bring us a message of hope.  She told us of her battles with cancer and how the Singapore government hospital sent her home to die; how she was able to conceive a child after menopause and after a ligation; how she survived liver cancer then breast cancer; and how prayers have helped her.  She will be patching us up with a friend in Hong Kong who does stem cell treatments.

We were not able to email all family and friends about Anya.  We would like to keep all those praying for her updated through email (even if we don’t know you personally).  Please send an email to anya.orobia@gmail.com and tell us that you want to be part of Anya’s pep squad and we’ll keep you posted.  We promise no spam messages and updates are probably every 2 months only.  Also, as part of Anya’s pep squad, kindly print a copy of the prayer attached and distribute to family and friends.  We will call you her pep squad because she can hear you cheering her on.  And we pray that will literally happen! 

Another update that temporarily brought our spirits down was the test result of the auditory brainstem response which indicates that Anya has profound hearing loss on both ears.  The sound of an airplane engine is deafening to our ears but it reaches Anya as a whisper.  Despite this, we still continue to play music, make loud noises and talk to her often.  Okay sometimes we sing with our out of tune voices.  Her ears are okay, it’s the wiring to the brain that needs a lot of stimulation so it can be “awakened.”  We are literally fighting against all odds because prognosis for hearing is … well, there is nothing to say.  But we don’t care because Anya will be the exception. 

Several kinds of therapies are being considered.  Some are available here while others require trips to Hong Kong and Singapore.  We have ruled out therapies available in U.S. and Europe for now – even if they offer better ones.  But even with all the therapy in the world, only prayer and God’s love can heal Anya.  So we continue to ask for your prayers.

Among the many therapies she has to do, we are deciding on which ones to do first given the time and budget.  While we want to do some sooner, we have to postpone because of the needed finances.

Among the therapies / treatment / activities for now:

Ongoing:

1. Physical therapy at home with a therapist who does home visits 1x a week.  We’re lucky we got a time slot!  We do the exercises the rest of the week.
2. Homeopathic remedies for seizure control
3. Brain Food – organic vegetables, gluten free diet, vit B complex and Omega 3 for now.  Other vitamins and minerals after chromosomal test has been done to determine what she needs in her system.
4. Kindermusik
5. Lots of stimulation throughout the day!
   

Others we want to do but still pending because of doctor’s approval and funding

1. Hyperbaric Oxygen Treatment (available in Manila)
2. Cranio-Sacral Therapy (in Hong Kong)
3. Advanced Biomechanical Rehabilitation (in Singapore)
4. Placenta Stem Cell Treatment (in Hong Kong or Singapore)

We are planning a series of fundraising activities so we hope you do not tire of us.  It will take more than one to cover continuous therapy.  Once we start a specific therapy, we cannot stop halfway but complete the recommended frequency.  The hyperbaric oxygen therapy, for example, would require between 20 to 40 sessions over a span of 20 to 40 days.  Afterward, a rest period of a few months, an evaluation and then another 20 to 40 days of hyperbaric oxygen therapy.  So the first set of 20-40 days has to be completed.

We’re starting off with a garage sale (perhaps the 1^st among many).  If you have anything to donate, please let us know so we can arrange for pick-up.  Target date for garage sale is March 20, 2010.  It would be great too if you could help in the preparations.

We finally set up a website so people can see updates on Anya.  We will upload more details in http://anyasmiracle.multiply.com as well as a few of her latest photos.  She also has a facebook account.

Well, that’s the update for now on Anya.  Good news is her seizures are a lot milder and she doesn’t cry all the time.  And the other is we can make all the loud noises, singing in tune or out of tune and non-stop story telling to Anya because she’s the perfect audience needing all the sound stimulation ever!

Lots of Love,

Chito & Krissy

THRU THE INTERCESSION OF

BISHOP ALVARO DEL PORTILLO

Prelate of Opus Dei

 

O God, most merciful Father, You granted your servant Bishop Alvaro, the grace to be an exemplary pastor in the service of the Church and a most faithful son and successor to St. Josemaria, the founder of Opus Dei. Help me to respond faithfully to the demands of my Christian vocation and teach me to turn every moment and circumstance of my life into an occasion of loving You and serving the kingdom of Jesus Christ. Deign to glorify your servant Alvaro, and through his intercession grant me the favor I ask of You...(Make your request). Amen. Our Father. Hail Mary. Glory be…

 

 

FOR CHRISTIANNE LUCIA RACHO-OROBIA’s HEALING

 

Dear Lord we know that there is no physical sickness or condition You cannot heal.  You know all things and You can do all things.  We come before You to intercede for Your beloved daughter ANYA.  With faith in Your promise that whatever we ask in prayer You will grant us if it will be good for our soul.  We beg you Lord Jesus to be with her and her parents.  Allow her condition to normalize.  Cease any malfunction in her system and cover her with Your most precious blood.  Arrest any abnormal state.  Let the grace of Your divine love flow and spread to all the parts of her body.  Comfort her and her parents at this time.  May you constantly assure them of your love.  This we pray in Your name.  Amen. 

Since I started on homeopathic remedies just a week ago, my infantile spasms have been controlled although I still have other forms of seizures.

I no longer have infantile spasms - those painful and tiring jerking movements that really frighten me and then piss me off.  Mom recalls that before I would have an attack, I would literally look scared and sometimes whimper in fear.  Then in less than a minute, the first spasm happens.  My infantile spasms reach between to 80 to 140 violent jerking movements, would last between 5-7 minutes and that would happen around 3 times a day.  At its peak several weeks ago, I would have 5 episodes in a day.

Of course, those were the only seizures my parents took notice of.  After reading a book on seizures, mom realized that I have been seizing most of the day. My new friend Xavi (7 year old son of mom's friend) has 30-40 seizures in a day but mostly the staring type.  And they had a 24-hour EEG to figure that out because some seizures were too subtle.  Mom and Dad are still thinking if another EEG would be helpful at this point. 

My other seizures are lip smacking, staring into the corner, eye rolling with very subtle body jerking, sudden clasping of hands like I am clapping (10-15 in a row), leg stiffening (5-10 in a row), repeated rubbing of eyes and nose with my hands (5-10 minutes non-stop).  All these happened even before my first infantile spasm.  And some still continue now.  Dad thought my lip smacking was something I picked up from the constant kisses I receive from them.  And Mom and Dad thought I was just really one active kid because I have 2 hair whorls (some old saying in our country 2 puyo means malikot or really active).  Ho-humm little did they know.

Anyhoo.... anti-convulsants Valproic Acid with Lamictal tasted sweet.  Mom had a few sips or two.  She wouldn't let me take anything she wouldn't take herself.  But it didn't do me any good except get me sleepy.  And the doctors insisted on having my liver checked because of the possible side effects of the medication.  That really sucked because it didn't work and I had to go through painful blood extractions from resident doctors who couldn't get it right the first time and had to insert the needle in my arms 3x before getting blood.  Well, all that for nothing because I still kept seizing with violent infantile spasms.  (Mom might upload a video of those experiences, but it might depress other family and friends).

Homeopathic Remedies... alas!  Tita Zara's doctor and also mom's friend, Tita Jen's doctor.  She's wonderful!  She gave me some homeopathic remedies and infantile spasms are gone!  Well, not completely since I still have tight fists, herd jerking, legs curling in... but all in a tolerable frequency, intensity and duration that sometimes I don't mind it.  Mom minds though.  She wants the seizures completely gone.  Now with less seizures, I can do physical therapy and Doman methods with more frequency, intensity and duration.  But I'm trying to get rid of a really bad cough.  Mom is afraid it may lead to pneumonia which is the number one cause of illness and death in liss kids. When I'm well, I'll do more therapy.

Other therapies my parents are considering are: hyperbaric oxygen therapy and advanced biomechanical rehabilitation.  Funds are needed for these.  We need to do more research on these too.

We sent this to family and friends through email sometime 3rd week of January 2010

Dear Family and Friends, (finally found the strength and time to do this email)

Some of you may have an idea of this and some will know about it for the first time…

We ask for your prayers and support for our daughter, Christianne Lucia “Anya” Racho-Orobia because she needs a MIRACLE.

She has been diagnosed with lissencephaly type I (may be schizencephaly), hydrocephaly, microcephaly, global developmental delay and epilepsy – a seizure disorder.  She has been having seizures called infantile spasm 3-4 times per day with clusters between 50-120.  Each episode is usually between 5-10 minutes.

Doctors Suspect: mitochondrial defect and metabolic disorder.

Doctors’ Prognosis: severe mental retardation in all areas of development: cognitive, motor, visual, auditory…  Lifespan: may not survive infancy but may also live as a disabled into adulthood.

What’s That? (for more info, you may research about these terms on the internet)

Lissencephaly…Schizencaphaly…infantile spasm (IS)…Global Developmental Delay (GDD) … Microcephaly … Hydrocephaly

What’s Next

She has weekly visits to the Pedia-Neuro.  Visits to a Developmental Pedia, an Optha-Neuro, a Geneticist specializing in Metabolic Disorders, an ENT, etc.  She has many doctors to see on a regular basis.  They will monitor her progress and continue adjusting her medications.  Medications are computed on her weight and on her progress.  The objective is to try to find the amount of least medication needed to control seizures.  Priority is to control seizures otherwise her development will just go downhill with constant seizures.

Tests will be done to find out if what she can hear and see register in her brain.  Initial hearing and visual tests indicate her eyes can see and her ears can hear.  But because of the fluid in her brain and disorganized brain formation, we have to check if her brain is receiving the information.

Anya now has a physical therapist coming over to the house once a week to help develop her basic motor skills.  Once Anya is ready, an occupational therapist may be needed to develop her fine motor skills.  A speech therapist and other therapists may be needed in the future.

Anya is also enrolled in Kindermusik – even if we’re not sure if her brain can “hear.”

Anya has stopped infant formula and taking in breastmilk.  She has started with vegetables as her first solid food.  Since infant formula was removed and medications given, seizures are down to 3 times per day.  On occasion 4 times per day.

The cause of all these is still unknown.  If no known cause can be found, doctors will do a “shotgun” treatment where they will try anything and everything to stop the seizures so “Help them God!” and therapy is to be continued as long as able.

How can We Help?

Prayer.  Anya needs a MIRACLE and we believe it will be granted to her.  We believe in the power of prayer.  We pray to everyone in heaven of course.  And we ask for the intercession of Mama Mary and all the Saints.  Specifically we are praying for the intercession of Blessed Alvaro del Portillo.  He needs a “documented” miracle to be a canonized saint just like Pope John Paul II.  Anya will be the documented miracle that we will submit to Rome.  Please pray with us.

Accompany us.  Even your presence during a doctor’s visit or a blood extraction from Anya will be a great comfort to us.  Anya’s liver has to be constantly checked so she will experience the needle quite often.

Visit Anya.  Anya needs “aggressive” stimulation.  Come over and sing her a song, carry her around, help her move her tiny arms and legs during a therapy session, let her smell you, touch your face, do a session of her stimulation cards, or simply talk to her.  Just let us know ahead of time so that you can catch her when she’s awake.

We want the best for Anya and have dared to explore the possibility of going abroad for treatment if needed.  There are 2 institutes we are looking at: Johns Hopkins Medicine http://www.hopkinsmedicine.org/ and The Institutes for the Achievement of Human Potential http://www.iahp.org/. 

The Institutes will be in Singapore on July 2010 for “What to Do about your Brain-Injured Child Course.”  That would be just the beginning as we intend to enroll her in the Intensive Program.  We are currently raising funds for this purpose.  You can also help us accumulate Mabuhay Miles at your convenience (just email and I’ll let you know how we’ll do it) since this would require frequent trips abroad.

Our little Angel

Anya is not to be pitied.  Every attack is painful and tiring, every blood extraction is painful and tiring, and there would be more painful & tiring experiences for her.  But she has received the gift of life from God and only the select few are called to carry a burden such as hers.  We know she has a mission we do not yet understand.  God knows she can handle it.  We also know that only good can come out of all this so we are always thankful to God.  We are blessed to be a part of her life. -- all these I have to constantly remind myself.

Anya is what the world would call a “special child” and we have accepted that.  Still, we have not finished shedding our tears.  We feel anger, denial, blame, guilt, sadness.  While others may feel ashamed to tell the world they have a special child, we have decided the share this with you.  We are proud of our daughter.  Mothers brag about their crawling 7 month old baby and but we are proud to say our 7 month brain-injured baby has finally lifted her head (whereas their babies lifted their head at 2 months).  Although at times we may evade the question, “How’s Anya?” because our answer will always be, “she is not okay.” 

A friend told me that things will never be okay, but one day I will be okay with it – for most of the days at least.  We continue to ask for your prayers.

Anya has a facebook account “Anya Orobia” so just add her please.  Updates on her life should be there – we’ll do our best since we don’t even get to update our own accounts.

Thank you for taking the time to read this.  Thank you in advance for your prayers and support.