#31 Diary of Remenzer : Ray Always Strong - This is Our Story Fighting His Severe Aplastic Anaemia Part 6

in HOPE3 years ago

FOREWORD

Greetings, Hive Community! How are you doing? I hope you're all doing well. Before I begin, please accept my apologies for mass tagging. I'm tagging each of you because I wanted to express my gratitude for liking/voting on my post here, which has earned me hive bucks, which I've already used to cover my son's expenses. Thank you, thank you, thank you!

REVISE

It's been 241 days since we've had to deal with life's unpredictability. Ray, my kid, was diagnosed with severe aplastic anaemia. Every day is a fight to win, to survive, and Ray always bold, strong, and victorious. He will keep doing that. He has the greatest of friends and family by his side.

Aplastic anaemia is a condition in which the body fails to create enough blood cells. The stem cells that reside in the bone marrow create blood cells. Aplastic anaemia is characterised by a lack of all types of blood cells, including red blood cells, white blood cells, and platelets.

STORY TO BE TOLD OF WHAT HAPPENED TODAY

GOOD MORNING

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It's 8:15 in the morning. I haven't sleep yet. I've been working from here.
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Looking out the window is truly a gift. It makes my tired eyes and shoulder feel better.
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Nothing else has the roughness and excitement that the guitar has.
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This is how it looked from the inside.
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That the window.

A MUST DO

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Record of Ray's input and output.

Masa/Tarikh : Time/Date
Makan : Eat
Minum : Drink
Kencing : Urine
Berak : Feces
Muntah : Puke
Lain-lain : Others

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The urine output cup is used to calculate the patient's urine output. If possible, urine production should be measured every four hours.

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Wheelchair with toilet. The wheelchair's basin is in the toilet. I'll put it under the wheelchair if it's necessary.

HIS CURRENT STATUS OF CARE

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His nose infection appears to be improving. His nose began to improve after few times of nasal endoscopy procedure.
His blood reading:

Hemoglobin : 10.2
Platelet x 10^9/L : 9
TWBC x 10^9/L : 1.0
CRP : 176.4

After his nose infection cleared, the value of CRP dropped dramatically, from 370 to 176.4. After two months of everyday fight, victory has been achieved.

The next treatment will be focus on Immunosuppressive therapy (IST) with antithymocyte globulin (ATG). Hopefully, everything goes smoothly.

THE CHALLENGE

Fever

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His fever does not take a break. He was given paracetamol every 6 hours, sometimes 4 hours if the fever came on earlier.

Vomit

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He throws up 2-4 times every day.
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The worst. Hmmm

Bleeding gum

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Less Appetite

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Fried mee with fried eggs is all he wants to eat. Thank you so much, Ray! He just eats once a day. He had lost his appetite and was unable to eat more than once.
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DARK SOON

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He usually falls asleep till midnight after finishing his lunch and midday medicine.
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Meanwhile, I take care of the cleaning.
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I'll wait until after 6 p.m. to walk down to the kiosk and buy the that food Ray requested.
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I'm less likely to be exposed to pathogens if there are fewer people around.
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As he requested, I bought him fried mee and eggs.
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I need to take a bath and clean myself in the room next to that door before entering his room.

IT'S NIGHT

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To get me moving, I need coffee. Coffee without sugar is the best!
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The bitterness of the coffee is similar to my face.

MID-NIGHT

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It's almost midnight, I had to wake him up for the medicine
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That's the mid-night routine.
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He's going through his messages from his mother.
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Two down, three more to go.
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After done with the medicine, it's time to clean his teeth and mouth.
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Mouth set cleaner ready.
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It's 1:46 am. Time for him to sleep, again.
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Meanwhile, me, getting ready to create a new post. Which is this post.
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Did I tell you about his fever?
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I also help out as a nurse. He does not want the reading to be taken by the nurse.

THANK YOU

By the time I finish this post, it's already morning here, now I working on the appreciation list. The typed list will be presented first with this post, the handwriting (still work in progress) list will come sooner. Thank you so much for your time. Thank you so much for your upvotes. God Bless you.

LIST OF GRATITUDE

@ocdb, @ranchorelaxo, @azircon, @haejin, @ocd, @vancouverdining, @acidyo, @brofi,
@kevinwong, @ecency, @smartsteem, @therealwolf, @howo, @usainvote, @postpromoter, @zuerich, @thebluewin, @tipu, @bdmillergallery, @traciyor, @softworld, @dandays, @saboin, @dcommerce, @justyy, @steempress, @ocupation, @deepresearch, @french-tech, @ashtv, @chekohler, @roelandp, @kohsamui99, @eonwarped, @laruche, @wiseagent, @hatoto, @minnowvotes, @barge, @ocd-witness, @inb4, @certain, @rodrook, @spydo, @jamesbattler, @ninahaskin, @jeffjagoe, @ammonite, @ausbitbank, @blockchainyouth, @cetb2008, @lisbethseijas, @stevenwood, @robmojo, @maxwellmarcusart, @arcange, @teesart, @tombstone, @foxkoit, @smartmarket, @crosheille, @mintrawa, @outlinez, @xyanthon, @lauramica, @guruvaj, @ackhoo, @straykat, @kunschj, @voinvote2, @hesoyam, @fiveboringgames, @boatymcboatface, @walterjay, @tamaralovelace, @gabygonz, @rem-steem, @nathyortiz, @ninnu, @citimillz, @iansart, @cmplxty, @psychkrhoz, @discohedge, @tomaszs77, @nicollefiallo, @bil.prag, @ericwilson, @arabisouri, @oivas, @bliss11, @almi
@good-karma, @dhedge-drips, @titusfrost, @petrvl, @aljif7, @arrliinn, @ayrin344, @optout, @plantstoplanks, @pitboy, @sanderjansenart, @ganjafarmer, @monster-one, @dinglehopper, @detlev, @miketr, @mrf83, @vvgm, @damoclesart, @d-zero, @isabelpena, @cheese4ead, @iamsaray, @lightpainters, @moyse, @manniman, @archon-drips, @johneyreacko, @olivia08, @olumzy, @imtase, @yashny, @mariajcastro28, @topclean, @maeugenia, @marytp20, @keco, @mcedric, @santigs, @blackberryskunk, @creativemary, @millyzev, @darthnava, @hive-113748, @jagoe, @velinov86, @xmauron3, @artistparthoroy, @juecoree, @chanych85
, @macchiata, @esteemapp, @javilinares, @kaminchan, @tmholdings, @binkyprod, @felt.buzz, @aunik, @fenngen, @kenechukwu97, @playfulfoodie, @desireeart, @dudeontheweb, @futurecurrency, @angeli-b, @miguelaag, @onyechi, @seckorama, @vixmemon, @abhisheksss571, @crystalhuman, @megabot, @pacolimited, @teenagecrypto, @mllg, @theshell, @yourtop3, @konti, @pvinny69, @constgaladriel, @iptrucs, @shadonchandra, @thethreehugs, @jhoxiris, @solymi, @tommyl33, @argeh, @romirspc, @akumagai, @francyrios75, @hectgranate, @nobutsd1974, @shainemata, @dante31, @dcrops, @maxuvd, @abdulmath, @elderson, @josebenavente, @mammasitta, @pladozero, @wittywheat, @zeusflatsak, @fernandosoder, @rezasofyan, @titofit, @afterglow, @casilokodesing, @miroslavrc, @mrarhat, @gabrielatravels, @kryptik.tigrrr3d, @heypuch, @kryptogames, @maleklopez, @mercurial9, @olebulls, @soufianechakrouf, @soyunasantacruz, @syh7758520, @asuk4, @jayna, @kawsar8035, @mister-meeseeks, @redrica, @rubido, @aaalviarez, @barbibsq27, @mariblue, @suzana72, @lotto-de, @venus2203, @berthold, @funnel, @hiveshout, @pallab, @allyson19, @gloriaolar, @hive-143869, @jlsplatts, @kriang3tee, @travelingmercies, @yadamaniart, @desro, @erikaflynn, @giocondina, @malkoo45, @mamun123456, @mejustandrew, @photographercr, @shinoxl, @belahejna, @davidesimoncini, @good.game, @joshuabbey, @anarcist69, @discernente, @kimzwarch, @megusta, @nicanor-mosquera, @steemitboard, @thelogicaldude, @hivelist, @kapitanrosomak, @kingscrown, @osavi, @yohadvartse, @konradxxx3, @koxmicart, @mobi72, @noemilunastorta, @nutritree, @planetoceana, @roomservice, @varunpinto, @ahlawat, @alkemix, @baiboua, @catinthewindow, @divinekids, @dpend.active, @indigoocean, @khiabels, @krisbelfigarella, @master-lamps, @orlev, @the100, @twoitguys, @warpedpoetic, @anafae, @anusrimollick, @bobydimitrov, @dzoji, @felixgarciap, @investinthefutur, @isgledysduarte, @maddie30, @nicxi, @nightportraits, @obsesija, @pboulet, @serialfiller, @sportsfanboy, @travelwritemoney, @viviehardika, @zedikaredirect, @acousticsteveo, @bosco56, @eve66, @hasi00, @hive-169313, @hive-180164, @leveluplifestyle, @ummar, @uncleboy, @upfundme, @alinares, @drawmeaship, @elpatoverde, @fatman, @fengchao, @ilpaso, @ivangeevo, @kattycrochet, @makhzar, @mildred271, @numasi, @parauri, @ufm.pay, @yiobri, @amirl, @athomewithcraig, @athunderstruck, @drader, @eglois, @epicdice, @face2face, @farleyfund, @gudnius.comics, @gunnarheilmann, @hanggggbeeee, @hasan706, @investyourvote, @javyeslava.photo, @jimre1, @kyleana, @smh01, @squareonefarms, @stickupboys, @suntree, @suzn.poudel, @thatsweeneyguy, @wolfofnostreet, @zeesh, @adevieka, @adysscheryl, @asia-pl, @beerlover, @celinavisaez, @duke77, @kellyane, @madefrance, @memesforhive, @myword, @neshk, @norberto1, @noreen, @paopaoza, @sarakey, @ssiena, @tawadak24, @variedades, @antonireviewer, @ayushthedreamer, @azwarrangkuti, @dandelionfluff, @drhoofman, @dwixer, @esther-emmanuel, @folakere, @icuz, @kennyroy, @marriakjozhegp, @martial.media, @newsnownorthwest, @oladunmoye, @oscarcampos86, @paolasatenea, @puza, @ricardo993, @savvyplayer, @schneidy, @shikika, @steempower-001, @tomatom, @treetoptennis, @valthy, @yuza, @alovely, @an-man, @auminda, @danieldrawing, @danieli98, @dappstats, @dragokazo, @edprivat, @francosteemvotes, @goddesseva, @inpursuit, @ma1neevent, @maureenedwards, @medussart, @nadhora, @nante, @originate, @projectmamabg, @raphaelle, @ravthijo, @rickardoh, @rocya, @sachingeorge, @sn0n.dev, @ykretz, @aidefr, @andreasl187, @anri-avgustino, @basterundco, @cabalen, @charcoalbuffet, @charleswealth, @cjsean, @critic-on, @cubapl, @cynshineonline, @davidpena21, @ecency.stats, @effieoutside, @esteem.app, @eudomarplay, @genesisojeda, @getron, @ghaazi, @glstech, @greendo, @guada1, @hrcl.art, @iameden, @jacuzzi, @jalentakesphotos, @jerichternida, @kaywoods, @kharrazi, @kingkinslow, @mengene, @mercmarg, @mightyrocklee, @monster-retos, @nioberojas, @nurhayati, @panconcajeta, @paolazun, @pursuant, @r00sj3, @rappler, @robotics101, @sorprendente, @theithei, @vaporrhino, @voinvote.token, @volkiceper, @wallytiteuf, @zoeanavid, @abbenay, @aiovo, @alandesign, @alex07samir, @alexsilvera, @alypanda, @ambrosechappel, @amphlux, @angelanichole, @as31, @audiarmisg, @babeltrips, @bartheek, @bbarquitectura, @beerlotto, @bellou61, @berien, @betbet, @bidnat, @bouncerjunior420, @bubblingwells, @coinman14535, @cryptogambit, @cryptokingzno1, @cryptovial, @dannychain, @debilog,
@didutza, @diosarich, @echovalormma, @elektr1ker, @emmanuel.willy, @evildido, @fatherfaith, @feedmytwi, @foxyspirit, @franbandola, @frassman, @gaboamc2393, @ganjafarmers, @gboyegaogunmola, @geo.trainer, @gisland, @godlovermel25, @goldstreet, @gracielakuper, @gradeon, @greenunion, @hansvonkatte, @hedidylan, @hive-126300, @hive-154202, @hivelifebg, @hubyr, @imawreader, @imcore, @investprosper, @itharagaian, @joendegz, @kasna, @kevanddave, @kgsupport, @kilianparadise, @lakawero, @leighscotford, , @lennyblogs00, @lifedrain, @lordnigel, @louis00334, @luueetang, @madisonelizabeth, @mahuampionlinemg, @mariamalonso15, @marianavbm, @marymi, @mattbee, @maykk,
@micap12, @mohammad12kh, @mrwang, @nadirali, @neove, @noor-badshah-786, @oleg326756, @oscurity, @papowich, @paulo.sar, @powpow420, @rdst, @reginacatajay, @renataboreal, @showtime, @skepticshakeel, @solarphasing, @soychalbed, @soydiegorojas, @spirall, @sportschain, @steembatangas, @steemitcanarias, @steemmedia.org, @steinz, @stickupmusic, @stonergirls, @strumcoach, @taniagonzalez, @teamoregon, @teampdx, @ten-years-before, @timmypat, @vaishnavi24, @watt.the.watt, @worldwildflora, @yayogerardo, @yuslindwi, @zekecuba, @zonguin, @ahheus, @akioexzgamer, @alex-hm, @amsnoopy, @andimywapblog12, @andres03, @angelga25, @auracraft, @bahrizul, @brahmaputra, @brankobit93, @catajay.vstore, @cribbio, @crypto.story, @dashand, @duekie
@dwipp31, @eswengshen, @freevoluntarist, @gaottantacinque, @gasaeightyfive, @gmw, @heneyko61, @hibachibeast, @icarri, @irisworld, @irynochka, @jklio123, @junnel123, @kyawminoo, @leynedayana, @lezzie, @lindac1992, @makeup.byidy, @masanayee, @mgsoneaung, @mintawa.app, @nalexadre, @nj07, @olddessauer, @ononiwujoel, @panprezes, @pantsulachain, @peakd.top.d001, @plint, @podewils, @polaleye97, @rebeysa85, @reza-shamim, @rotzank, @rsntpl, @samuelvoncocceji, @santigo, @schindmaehre, @shahab021, @shankaru, @siniceku, @sondershausen, @steementertainer, @steempeer.app, @stefen, @suviksha, @thaet653, @tips.tracker, @udeesther, @univers.crypto, @valencreart, @wackyme503, @watchlist, @ycarola, @zdigital222, @zulbahri, @hypnochain

Sort:  

why was i pinged

I already stated why.. I hope u read a post before voted it in the future.. btw Please accept my apologies for pinging you in this post, it won't happen again..

Greetings, Hive Community! How are you doing? I hope you're all doing well. Before I begin, please accept my apologies for mass tagging. I'm tagging each of you because I wanted to express my gratitude for liking/voting on my post here, which has earned me hive bucks, which I've already used to cover my son's expenses. Thank you, thank you, thank you!

I'm new to hive can i know which tag did you use to copy paste text like this
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Hello @sachingeorge 🙂

Just use the “ above in the key that precedes this text field or place a > in front of the text you would like indented. When you do it looks like this…

test test test

What is the use of that tag ?

ok no need to be nice with me im a redditor

You're doing great, he's lucky to have you. You're very welcome. Apology isn't necessary, tag me any time.

Thank you for your kind word @dandays. I wish you all the best.

I'm not much of a prayer but I do hope your son gets better and that you keep finding strength to fight for him.

Thank you for replying to such an encouraging word @rebeysa85. Thanks for the hive you give to Ray. I make sure it will only be used for him.

No worries! I know what is like to be in your position and I'm glad to be helpfull to others in need. Now you and your boy have a friend in Venezuela. Keep us posted of his recovery!

Reblogged for the more reach. May God bless your son with complete good health, no parent should be seeing such time.

Thank you for the vote, thank you for the reblog, thank you for the pray @mobi72

I wish you all the best.

Thank you @stickupmusic, I think I saw you gif, is that you? nice! I wish you all the best!

You don't need to hand write our name. Me and dog are willing to help and as well vote.

100% vote from us.

Thank you for caring and helping your son. We send prayers.

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Hello there Wooda the awesome! Thank for taking the time to reply such a supportive word @ganjafarmer

You are very welcome I hope you have an amazing day

She's gorgeous.

I admire your patience and dedication, ask for miracles and they shall come, keep your eyes open for the signs, many blessings are going your way.

Thank you for taking the time to write such a nice reply @fenngen

I hope your son get well soon. I send both of you all the necessary strength to cope with this moment. Blessings ❤️! Greetings from Argentina.

Thank you so much @lauramica. Thank you for the tip, I will make it will be used solely for Ray's need. We wish you all the best.

I pray 🙏 to God that your son get well. Don't lose hope and have faith on God, only then miracle will happen in your life.

Thank you so much for taking the time to send such a thoughtful note @anusrimollick

Lots of love ❤

Now I follow you to support every next post you make about Ray. You both are so strong, I can tell! A lot of love for the two of you, I hope he gets better ❤️

Thank you so much for taking the time to write such a kind letter @nioberojas

I hope your son gets better ❤️

Thank you for taking the time to send such a kind word @panprezes

Have strong faith😇. I know that he will be healed💖. I will pray with you💞

Yes! Amen. He will be healed. Thank you @icarri

Prayers and love from Brighton UK!
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Hello there @stickupboys. Thanks for the pray, love, and gif.

Poor little man, hope he gets better.

Prayers your way.

Thank you @akumagai. You are a good man.

Greetings friend God by means of everything will go well and your son will improve. God bless you and your son.

Thank you for taking the time to reply such kind words @cetb2008. God blessing to your family

Amen friend

I congratulate you, you are much more of a father than most, what a love for your son, may God preserve Ray's health and may you get some much needed rest.
I apologize for only leaving an upvote in these struggles even if it seems insignificant every penny helps.
I am very happy for the improvements and hope to see more of Ray's progress, God bless you.

Thank you so much for taking the time to write such a kind and supportive words @soychalbed. I was able to rest and recharge my body last night. His favourite nurse was on duty, she ask me to take a good rest for the night while she takes care of Ray. I feel so blessed. Thank you for your concerns @soychalbed

Thank goodness for that and you have made friends with the nurses.
Greetings and a hug

I wish you and your son helf. You are very good dad.

Thank you for the kind word @dragokazo

Good bless you and your son. My granddaughter was hospitalized yeaterday just for a minor infection but I felt so sad. Today she is fine and good in the picture. Everytime you write about him, tag me to upvote and resteem your post. God bless us!

Good bless you and your granddaughter. I am happy for your granddaughter condition where she's fine and good in the picture. Thank you so much for your kind word @olivia08. I see that you are a great singer!

!PIZZA

Thanks! Have some !LUV

Have some !LUV too, plus !PIZZA, on behalf of @savvyplayer! ❤️🍕😁

Connect

Trade


@remenzer! I sent you a slice of $PIZZA on behalf of @savvytester.

Learn more about $PIZZA Token at hive.pizza (2/10)

Connect

Trade


@remenzer! I sent you a slice of $PIZZA on behalf of @tommyl33.

Learn more about $PIZZA Token at hive.pizza (1/10)

Yo sé que los milagros existen, y deseo fervientemente que un milagro creativo de sanidad obre en la vida de Ray en el nombre de Yeshua 🙏

Amen! Thanks @argeh

Don't worry, everything will be fine

I will not, thank you for your couraging word @artistparthoroy, thank you for the tip. I will make sure it will be used for Ray's needs only. Thank you so much.

Congratulations @remenzer! You have completed the following achievement on the Hive blockchain and have been rewarded with new badge(s) :

You have been a buzzy bee and published a post every day of the week

You can view your badges on your board and compare yourself to others in the Ranking
If you no longer want to receive notifications, reply to this comment with the word STOP

To support your work, I also upvoted your post!

Thank you for badge and thank you for your support @hivebuzz

You're welcome @remenzer, it's a pleasure!
Have a nice buzzy day 😊👍

I hope ray gets better soon! Thanks for tagging me, I hope to spread as much awareness about your post as I can. Hopefully we can help you a bit as a community!

Thank you for reblog this post @plint. Than you for your kindness and kind words.

Good bless you and your son 🙏

Amen! Thank you @suzana72

Hello, I hope your son improves soon, it must be difficult to pass all that situation for both him and you, I hope I can get out of this ready, a big hug, strength!

Thank you for spending your time to write such a good words @mariajcastro28. I wish you all the best.

Wow, this must be tough for you. I pray God gives you the strength that you need and I pray He grants your son speedy recovery and good health. My prayers are with you. Stay strong.

We can go through this, thanks for the supportive and kind word @gloriaolar. Thank for your pray. God bless you.

Amen. You're so welcomed.

I pray for you and your family.

Thank you so much for spending your time for praying for us, God bless you @antonireviewer

You are most welcome.

Prayers for your son.

Thank you @afterglow. God bless you.

You're welcome.

Thank God for quick recovery. We will continue t to pray for him.

Thank you for the pray @udeesther. God bless you.

Los que tenemos hijos sabemos la impotencia que podemos sentir al ver nuestros hijos pasar por esto y no saber que hacer. Pero siempre debemos mantenernos con la fuerza y el animo arriba porsi de caemos ellos también lo harán asi que fuerza animos que como decimos los venezolanos palante es pa alla y el que percevera vence

Muchísimas gracias @angeli-b . Thank you for spending your time to write such a good words here. Thank you..

I wish him a quick recovery

Thanks for the good wish @ummar. Best wishes for you.

I sent a request to Jesus to heal Ray. He'll be directly responding soon. Watch for it.

Thank you @bubblingwells. I've been waiting for more than 200 days. I can wait more, as long as the healing is on its way. Thank you!

You are going through a very hard time, I hope you recover very soon

We go through it will all we have. Thank you for you support! @angelga25

always strong

Yes! Always! Thank you for your support @@@nicanor-mosquera

You need to feed your son healthier food than instant noodles. Get in touch with Christian groups to help you out.

I've done that @wittywheat. He likes the softness of this instant noodle's mee in particular. I use only a little bit of the flavoring powder and seasoning (like 1/20), not to a certain volume that will make it considered unhealthy. I've been giving him rice, vegetables, fruits, and other foods for weeks, but his present appetite causes him to vomit it all up. So I have no choice but to feed him with these noodles and eggs at least once, as he has requested. I can't make him eat more (or other food) as a normal boy does or I'll make him much more stressed. He is reacting significantly worse as a result of his stress.

Yes, we got Christian group to help me pray, some from Indonesia, and most of them from the local Church here in Sabah. Aside from that, I don't forget about the financial, prayer, and blood donation support from friends, family, and strangers, regardless of their religion.

I hope the immunosuppressive therapy works like it did for me. Ray will be in my prayers.

Thank you for the courageous word @acousticsteveo. Thank you for the pray. Your story will be one of our inspirations. Thank you so much for sharing.

An innocent soul won't be blessed with battles he cannot win.
...praying for your son's fast recovery!

Thank you for spending your time to write a supportive message to us @imawreader. We wish you all the best.

I actually edited that phrase I sent to you 'cause I think it is somewhat misinterpreting a good thought.

You're welcome!

We never stop praying for Ray, every day he is in our thoughts. He is a blessed child with a wonderful father.

Sending you a big virtual hug ♥

Thank you for taking your time to pray, virtual hug, and write a kind word for Ray, @parauri. We wish you all the best!

God bless you. I pray for the improvement of your boy Ray. Hopefully you get people to help you with what you need.

Thank you so much @isabelpena for your kind words and support. We wish you all the best, and God bless you.

Big hug and much love!

Thank you so much @edprivat.. We wish you all the best!

!BEER

Thanks! Have some !LUV!

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Thank you for your love!
!BEER


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;) Hope your son get well soon, best wishes and blessings for your family <3

My prayers for the health of your son and his speedy recovery, Blessings to you.

Noodles are not very nutritious. I like eggs. See if you can find him some Moringa Oleifera (Nutritree, Miracle Tree, Drumstick Tree). It has the power to alone sustain the body. Nutrition is foundational. Cleanse the environment of all toxins and provide super nutritious food. Praying for healing.

God will always be with you Ray and gaman..

God be with you, may the Lord Almighty continue to hold hands with Ray and you. May God continue to bless and guide you in this cause.

Well that's a lot of work to put into all that tagging I don't know how you could do it you're so busy with your life and your child please take care wishing you the very best and health and strength