THIS GIFT THAT IS XAMI

Five years ago today, I felt specially blessed because at last, I was coming home from the hospital with a living and breathing 4000g baby after the heartbreaking losses of the previous two years. I have been a thankful mother, since then. I thank the Lord everyday for this gift; a source of joy not only to us but to many people who knew our story.

Since Saturday, I have been trying to process the new challenge that has besieged our family. I was telling a good friend the other day, that it seems, no year passes me by without something throwing me down to my knees with my face to the ground begging the Lord for more grace to face my days. Today, it finally sank in that indeed, my little boy is different. For the longest time, I knew that there was something going on with my boy, but my Igorot human mind keeps telling itself that the reason why my boy does not talk and behave like other kids his age do is in all likelihood attributable to the fact that he is in an environment where more than three languages are used everyday to communicate. We asked doctors’ opinions and the ones who saw him said that he only needs help in improving his communication skills so he can express himself properly--that what he has is called an expressive and receptive language delay.

But then he started school, and he does not play or run around with the other boys. He asks to eat ice for snacks at the same time everyday. He fixates on a toy or anything around him that catches his interest and plays with or stares at it studying it for a long time all alone, not wanting to be joined by anyone, screaming his heart out when someone disturbs him. He hates noise with a vengeance; he would cover his ears with his hands when he hears different noises like the normal talking and shouting from his classmates. He screams nonstop where other kids would cry or fight. You call his name and he does not turn to you not even to give an indication that he heard you. When he accidentally gets hurt, he would bang his head on to the cement floor or the wall for a second time. With him, every pain has to be in pairs. He is more interested in how the wheels of a toy train work than letting the toy train take a run around its rails. He would open a door, enter, lock, open it again, come out and do the same thing over and over again until you sit him down, hold his little face in your hands, look him in the eye and tell him slowly to stop.

Last Saturday, we went in for another developmental evaluation, and sure enough he was diagnosed with ASD. Every parent believes their children to be special, but I bet no one wants them to be as special as this. I have been reading a lot of articles and forums regarding autism and learning disabilities and so I had my suspicions even before Xami reached two, but I guess I did not want to accept that this precious gift given to me five years ago will need special help with his special needs, and learning challenges, and peculiarities. I was advised by the doctor to schedule him for speech therapy three times a week, and also get him to occupational therapy sessions to help him reach the milestones he should be reaching and teach him the skills he needs to live a normal life, and also that he needs to be enrolled in a SPEd school to make sure he is learning what a boy his age should be learning.

After we got home from the doctor’s office, I went straight to the net and read as much as I could, and watched videos about the condition. Some said ASD (Autism Spectrum Disorder) is sort of an umbrella or a rainbow where no two individuals fall on the same point within the spectrum but the point is that my son is somewhere in that spectrum. Cognitively, his brain is functioning more than it should as a five year old, as evidenced by his eye for details of colors, lines, and curves, shapes and figures. But his language and social skills are that of a 2 year old. I was encouraged when I saw videos of autistic adults speaking publicly at organized events to advocate for themselves and the generation of autistic children coming after them. Apparently, 1 in 68 children in the US is autistic. I do not have the statistics here in the Philippines, because sadly, there is not much program for children or adults like Xami in the public health care and educational system in the country. There is one website called autismpinoy but the latest update on their homepage dates as far back as 2013. I have also learned that in the whole province, there is only one trained speech therapist and there is only one school in town that provides special education for children with learning disabilities, pardon me for my im-(non-un-)political-correctness. In the neighbouring city of Baguio, there are two places where one may go to get special help for speech development in children who has language delays and learning disabilities, at least that is what I gathered from the web.

Now we are faced with a big decision to make to be able to give Xami the maximum help we can get for him and there are lots of factors to consider and questions to answer. Should we relocate to the city for a little while in order to enrol him in a SPED school and get him the regular speech and occupational therapy that he needs to be able to catch up in his development? I don’t know. Yet. But in this, I want to have a life of faith personified.

THE RACE TO SAVE XAMI’S LIFE

It was Monday morning after giving Xami a bath when Bong asked me to feel Xami's forehead because he seemed to be running a fever. I took his temp and it was 39 degrees C. We decided to wait for 24 hours before taking him to the hospital, giving him fever meds for the whole day. We waited for his fever to abate, for 6 hours, then 10, then 12, then 15, then 20, still the fever persisted. I read up on possible diagnosis for a fever that won't listen to antipyretics, with no other signs and symptoms. Instead of waiting for the 24-hour period to pass, we took him to the ER at 3 in the morning because his fever was even getting higher then stayed at 40-41. We arrived at the nurse's station where everyone was asleep. One of the nurses stirred and sleepily interviewed us, took Xami's temp and weight. She gave us instructions to take Xami to the lab for a blood count and urinalysis. On our way to the lab, we met the resident doctor and she told us to go back to the ER because she'll examine Xami there. She asked me a few questions, and then asked the nurse for a tongue depressor. After opening and closing drawers for a couple of minutes, the nurse came back with a 10cc syringe, saying that the hospital has ran out of tongue depressors so we'll have to make do with the syringe. So in vain, we pried open Xami's mouth and tried to use this big cylindrical plastic as a tongue depressor. I did not see Xami opened his mouth enough to see through his throat but apparently the doctor saw that his throat was red and swollen. She concluded that it was most probably a streptococcal infection so she prescribed an antibiotic with instructions to get Xami checked again if the fever persists for three more days.

Xami was still febrile the whole day Tuesday until early Wednesday afternoon. He seemed to have gained strength late afternoon Wednesday and was running around the house for a whole two hours. At 5:30PM though, he crept into bed and was looking very ill again. The fever shot up to 39.6-41 again and stayed within that range the whole night even with Paracetamol. On Thursday morning, he was at 38-39 and seemed to be just a little weak but seems to be recovering. So we decided to go straight to Bagabag to teach my morphology class at the LCI and to drop by the doctor's office on our way back. While I was teaching my class, Bong tried to get Xami to drink Gatorade as much as he can. At 11AM, we took him to a new pediatrician. Upon seeing Xami, she quickly decided to send  us to get Xami tested for Dengue. We went to another hospital because the test called Dengueline is not available at the Danguilan clinic so we went to MMG. The medtech took Xami's blood and we waited for more than two hours for the result. While waiting, we went to have lunch at a nearby restaurant and Xami thirstily drank half a glass of iced tea and then a few drops of water but refused all the solid food we tried to give him.

We went back to the lab to get the blood test results and I saw that it was negative for dengue. We brought the results to the doctor's office but the pediatrician already left and we were told that she won't be back until 4:30PM. It was already 2PM at the time, and since the dengue test was negative, we decided to go home, and just come back in the morning. We arrived at our apartment, and Xami and I  fell asleep. When I woke up at 4:30, I saw that I missed three calls on my phone and there were 6 messages from the same number. It was all from the pediatrician saying that she is waiting in her office. I told her that the dengue test was negative and that we'll come see her in the morning. At that moment, I looked at the lab result more closely and I saw that there were actually two different tests, and the second page was a detailed CBC, where it was indicated that Xami's platelets were at 45 when the normal range is at least 205 upwards. I also noticed other numbers that were either too low or too high compared to the indicated normal values, so I immediately sent the abnormal values to the doctor and asked for her advise. She immediately texted back that we need to get Xami to the hospital asap because although the dengueline test was negative, the very low platelet count was still indicative of dengue. I asked her to meet us at the only tertiary government hospital in the province but she said she is no longer connected with that hospital but that she can refer us to someone. She named a doctor, and that was the doctor with whom we had a very bad experience regarding Xami's past seizure disorder.  She named another one and it was someone I never consulted in the past but I have heard good reports about her from my relatives.

We went to the nearby provincial hospital in town since that's where the other pediatrician is connected. The scene that greeted us was rows after rows of ill people lying on cot beds outside the hospital buildings.  We went directly to the ER and the admitting resident and nurse immediately hooked Xami to an IV line with a Paracetamol push. We were at the ER for almost an hour waiting for the doctor to come see Xami for further instructions, as the nurses promised to inform the doctor that she has a new patient in the hospital. We were wheeled into a room with five other patients already occupying the room. By this time, Xami was profusely sweating and growing weaker. I saw a doctor entered the building, and she fits the physical description I was given, so I asked a nurse if that was this particular pediatrician. It was indeed her so I made a request to the nurse to inform the doctor that the patient referred to her was at Room 5. The nurse told me that if we were referred to her, she will certainly drop by our bedside. After a quarter of an hour, no doctor came, so I went in search of her. I found her at a nurse's station in another building and after a moment hesitation I drew near and I introduced myself saying that I am the mother of the 1 year-old dengue patient who was endorsed to her. She said no one has endorsed anyone to her and I was stunned. Having no other choice, I begged her to come see my baby. She came after another quarter of an hour or so, and then after looking at Xami, she asked me to step out with her. We went to the back of the hospital building to talk. She said many things but the gist of it was that she cannot accept the responsibility of caring for a patient who clearly needs more care than that particular hospital and the staff can provide. Apparently the staff in the hospital are all new (due to the change of government in the province) and she does not want to entrust my baby's care to them because of past mistakes in the past few days in implementing her orders.  She also said the hospital has no ICU and that my son clearly needs close monitoring preferably in a well-equipped ICU. I asked her if she can recommend another hospital and she mentioned the one we went to on Tuesday morning. A nurse made a call to that hospital and the answer was that we have to bring our own bed and be satisfied to stay by a porch because the wards and the hallways were already full.

I called the doctor who saw Xami that morning and asked her to take Xami back as her patient but she said she's traveling to Manila the next morning. I also told her that we will be moving to another hospital near her clinic but  she said that that particular hospital was also full. At that point, I was already thinking about going to Baguio City but I know that the distance will be a big problem for Xami. It is a good thing, the second doctor I was talking to suggested a relatively new private hospital in the province (which never crossed my mind although I know of its existence) and she encouraged us to go there. After Bong settled the bill, Xami and I boarded an ambulance, while Bong followed us in the car. (I wish nurses who come along sit with the patient and not beside the driver where one cannot really ask for their assistance while the ambulance is navigating the traffic at 100kmph. I needed help trying to keep my seat and keep Xami on my lap and not to get his IV line dislodged but I was alone at the back of the vehicle.) Xami's IV needle was indeed dislodged as a result.

At 9PM, we arrived at the new hospital and by that time Xami's condition was already worsening. His breathing was shallow, his heartbeat and pulse were erratic, his skin was looking gray and his eyes were lifeless and staring... all pointing to the fact that he was already deep into septic shock. The doctor who admitted us called a consultant to ask help regarding Xami's care. After a few minutes of talking on the phone, the doctor mobilized everyone to do all the orders that the other doctor on the other end of the line must have instructed. She said the priority was to pull Xami out of the shock. She feared that Xami's kidneys were shutting down. He did not have any urinary output for more than 8 hours already. They hooked Xami on another IV line and tried to collect blood for another CBC from the line before connecting it to the IV fluid but his blood has already gotten too thick that it won't even flow no matter how they squeezed.

They fast dripped 300ml of IV fluid and waited for Xami to pee, but still nothing; fast dripped another 300ml, still nothing, not even tears or sweat. Fast dripped another 150ml, still nothing. They changed the IV fluid and fast dripped 300ml of the new fluid, but still nothing. They alternated different fluids and different rate of drops to keep the integrity of Xami's vein. Too much fluid too fast can also cause vein collapse and that would also be fatal. By that time, Xami's vital signs were already going extremely low. The consultant doctor came to see Xami for herself and she and the resident doctor discussed further procedures. The consultant jokingly told me and Bong that if she met an accident along the way, her husband will blame us and take us to court. Apparently, she does not drive at night but her hubby is out of town, so she forced herself to drive to the ER to see Xami. She was coming from another town. Of course, the Hippocratic oath was also to blame. :-)

The staff wheeled us to the ICU and hooked Xami to more tubes and wires; some for monitoring and some as precaution for emergency life support in case things get from worst to more worst (OK, that is ungrammatical but what can I do, we are already past worse). Two nurses were stationed there to monitor Xami every 5 minutes until he pees and his vital signs stabilized. The monitor kept flashing red and going toot, toot, toot, every few minutes because of the unstable heart rate, respiration, pulse rate and oxygen intake of Xami. Bong and I just kept holding our son, silently praying that the Lord would give us more time--years to spend with him. At 4AM, everyone sighed when we checked Xami's diapers. The nurses weighed the diapers and found that Xami had a 300ml output. After that, his vital signs started to become more stable and the monitoring changed to every five minutes to every 15, then 30, then every hour. Xami's situation continued to stabilize but his temperature was still extremely high. They kept watching for signs of bleeding. Apparently, he already started to bleed because when Bong changed Xami's nappies at 4:30PM, he had blackish stool, indicating intestinal bleeding. The doctor decided to keep Xami in the ICU until all his vital signs normalized.

This morning, when the doctor came to see Xami, she told us that she already had brain  and heart muscle  stimulants prepared in case Xami's other vital organs start shutting down, and that she was really worried that all her solutions would not be able to pull Xami out of the shock. That was short of saying it was a miracle Xami was revived.

All those hours of watching Xami fight for his life, I had two alternating thoughts.  I was blaming myself, thinking why I did not take Xami to the hospital earlier than we did or that I should have forced it at the hospital last Tuesday to get his complete blood count. I kept thinking that if we lose him, I would certainly lose my mind. Then Bong would hold my hand and then I would be reminded to pray, and tell myself to trust the Lord and thank Him because it was truly by His guidance and wisdom that we were able to take Xami to the right place and right doctor/s who were willing to interrupt their sleeps and leave their children at home to save another child's life.The Lord also knew that I would go crazy worrying and blaming myself, so as it happened, I had accepted an online writing job the day before that was due that Thursday. So when Xami was hooked to all the tubes and wires at the ICU, with the nurses hovering every few minutes, I stepped out of the room to look for a corner where I could write. I had to write five search engine optimization articles with a minimum of 350-words each about a certain topic. The thought of beating the deadline took my mind off my self-blame and worry for a whole hour and that was a gift. My submission was late as I finished writing at 2AM Friday but my kind and considerate agent accepted the articles.

We are home now with a son who continues to be a source of joy not only to us but also to our extended family. I also told Bong that he won. He is okay with only one child, I would like one more.  But after undergoing this ordeal, I told him, I will never ask him for another child again because I do not want to feel so brokenhearted, helpless, and fearful about losing a child ever again... Bong smiled his smile that says, Yeah Right. I guessed that's because he knows I change my mind and my mood ten times a day.

Special thanks to Dra. Remigio, Dra. Padre and the resident doctor and all the nurses at PLTC-Luis A. Tiam Memorial Medical Center for your part in restoring Xami back to us. We are forever indebted to you.

Now, I thank my Father God for His gift of life and healing for my son and I thank Him for the gift of a husband who has shared and shown no less than sheer strength, quiet trust and unwavering faith in God that He is in control, and gentle support for me even when I and everybody, even the medical and nursing staff was already on the verge of panic. I thank my Lord Jesus for friends all over the world who were there to intercede for us through their prayers. I thank my God the Holy Spirit for the peace and comfort He gave to my heart, knowing deep down that no matter what happens, the Lord knows best and that His Name will be glorified.

IN A SUITE

We are checked in at a nice room at the SIL-P GH. Xami wasn't feeling good today.  Flying to Mindanao tomorrow.  He was clingy and crying a lot this morning.  It was good that he started to feel better as the day progressed.  It was probably the tiredness!  It wasn't a joke going and coming back to and from Nansiakan and then be on the road again for Manila.  It was a long drive at that what with his papa taking 8 hours from NV to MLA. :) Still Xami is a good boy.  Funny though because I let him taste Lomi soup that his papa bought from the UBE House in E. Rodriguez and he wanted to drink all of it like when I stop to spoon some more, he cries.  The same thing happened when we went to Solano at Balai Gloria's and I let him have a taste of Crab and Corn soup.  It seems I won't have any problem feeding him with veges. Well, we'll see, shan't we?

Old Home

Last Friday, I got to visit my birthplace again after nearly three years, and this time with my precious little big boy Xami.  We started out in Bambang at 12:45, nearly three hours behind schedule.  That was because our jeep which was supposed to go for a road test seemed to have become afraid of the Nansiakan road.

Xami was an instant celebrity among the passengers, everybody commenting along the lines of "You look like your lolo Longcoy," which I'm sure means Xami is a handsome-looking little boy. Hahaha, so I sound like an old mama, well, my Xami does look cute whatever he does. (Right now, he's humming himself to sleep beside Room 11B at the SILP Guest House in Horseshoe Drive, QC.  Our room is really cold, what with the aircon on full blast.  Xami likes it that way, he is a profuse perspirer (I know that is not a word, it sounds better than Big Sweater though :) That latter one sounds like something mama could wear! LOL) As I was saying, the trip to Nansiakan was basically uneventful except for the fact that going up that village via a truck always involves a certain risk.  You risk your butt to get all splotchy due to blisters from trying to not be unseated.  You risk your head from getting bumped what with you being thrown about as the the truck climbs the mountainous terrain.  You risk your life relatively because the road looks nothing like a road is supposed to look like.

We arrived in Nansiakan at around 4PM and dropped by Uncle Alipio's house to see the cousins.  Uncle, Christopher, Jenny and Chloe, Jeremy and Yna, and her baby sister were there.  We had coffee there and afterwards proceeded to the church because Auntie Sofia's house where we usually spend the night was closed.  We came at the ladies of Nansiakan practicing their song.  I was carrying Xami on a sling and as soon as he heard the singing, he launched into a concert of his own humming so loudly. Everybody was amazed at this little wonder.  Some ladies were commenting that Xami was even bigger than their own babies who are more than a year old.  Xami then got bored and restless.  His Lola Tessie took him but after a while it was time for Xami's dinner so his mama made some cerelac meal and went to feed Xami.  We then went down to the Calixto house where Xami met his fourth cousin Bernalyn Calixto and her adopted brother Nathan.  Later on, Ninang Cristy came and carried him away. He fell asleep and slept throughout the evening session with Ninang Cristy holding him.  

The makeshift bed they offered to us was barely enough for Xami, so I took the mattress and laid it on the floor.  Mom lay on the other side and I on the other with Xami in our midst.  They were all anticipating that Xami would cry a lot during the night as babies usually do, according to them, when they are in a new environment but Xami slept like the baby that he was.

In the morning, Xami charmed his way into many hearts :).  Everyone wanted to kiss him, thankfully, Cristy jokingly fend off most of them. It would have been different if it was I who was carrying him and to tell people not to put their faces too close to Xami's... the lot of them has colds, hehe, and all that.

I was in front teaching a 150+ ladies when Auntie Medy gave me a note that says, Xami was crying and probably needs to feed.  I interrupted my talk, gave the people something to do and went to look for Xami.  Mother, ninang Cyndie, and Ninang Cristy were in a panic trying everything to lull Xami.  Poor baby was hungry.

We came down to Bambang at 3PM that same day but when we reached Loyek, the jeep suddenly halted.  Apparently, Ninong Pollang who was our driver was trying to direct it but it just went to the side, into a ditch and died.  The U-bolts that held the front wheels together were broken and so we disembarked and walked from Loyek to Balihyon.  It was probably a 4 kilometer walk.  We waited there for 5 hours until we were rescued by Uncle Robert who came with bolts and a skill to repair.

Xami grew restless as we wait at Uncle Timoan and Auntie Bihni's house in balihyon.  We ate supper there. Cull i inhida mi.  Funny because we were offered a bed and Xami won't lie on it until I laid his blue blanket over the sheet.  He kept looking at the sheet as if there were bugs or something.  The sheet did look like it hadn't tasted soap and water for decades. :-)   We left at Balihyon at 11PM and arrived at half past 1AM the next day!

What a ride!

Thank God for bringing us safely home despite the road dramas.

my toes

Xami learned a new trick today.  He is now able to hold his foot with one of his hands.  He was trying to bring it to his mouth but his tummy fat won't let him fold that much.  It is so funny and cute! :)  Xami is so behave today even if he vomited twice due maybe to Mama's medicines or maybe for eating too much Cerelac and milk.  But still he is happy and naps when he should and when he awaken, he smiles.  We ran out of Cerelac so Mama harvested Lola's squash. Mama boiled it and mashed it but Xami won't have anything to do with it.  We even mixed it with Nestogen milk but still he vomits when mama tried to spoon some into his mouth.  So anyway, no solid food for Xami today, just milk. 

Lola Medy B came to have her tablet configured so she played with Xami for a little bit while mama was configuring the pc to the CFM internet.

the little insomniac

Baby Xami woke up in the middle of the night and now it's 1:09AM and he won't go back to sleep.  He keeps making this cute noise with his lips smack together and producing some kind of a bilabial fricative.  I am keeping myself awake by looking at House MD extras, while Xami finds it in his system to fall back to sleep. I think this is one of my unlucky nights, now he has rolled over onto his stomach and is momentarily occupied with the sheet, now he's lying on his right side and nibbling on his mittens.  Oh Xami, dearest!

And it's been a while since I've written anything here... well, obviously, I've been too lazy to do anything else but look after my little giant!  It is incredibly and enjoyably exhausting. I have been exhausted many times before but more like the I-am-mentally-fatigue kind of way, not the achy-muscles-due-to-carrying-around-a-heavy-baby and-headaches-due-to-interrupted night sleep kind of way.  A very welcome change, I must say.

Xami is coughing like an old man, it is so funny! :-)

Your Dedication Day

Yup! We dedicated you to the Lord last Saturday, Nov. 26th, 2011.  Your granddad, grandmamang, Tita Amore, Tita Maemae, Kuya Aschy, and Ate AD were all here. I should post a picture so I don't have to enumerate everyone who made it.  Well, you have a lot of Ninangs and Ninongs but only a few were able to come. The only one who lives quite farther away that came was your Ninang Jean.  Oh well, basta, you looked so adorable in your little barong, a gift from Ninang Cecile.  You got so tired during the long ceremony that when it was already time for pictorial, you dozed off.  The songs I chose were sang beautifully by your ninangs Malu and Sharon and Cristy and our Kumpare Norman and his friend Junior Banig.

Your lola and lolo and the rest left last Sunday night.  Tita Amore stayed though. 

Today, you are exactly four months and you did something amazing.  I lay you down on your back with your head on the groove of your special pillow and I went back working on my computer as I was trying to finish the brochure that we are going to use for our booth in Manila. After a few minutes, I heard you making strange noises, and something keeps banging at the side of your crib.  I put away my computer and sat up and lo and behold, your feet are on the pillows and you are hitting your head on the footpart of your crib.  Goodness, you turned 180 degrees!  I scolded you and you looked up at me with your toothless grin.... so adorable!