ENT, Hospitals & Anxiety

Z had ENT appointment on Monday. For once, I thought his anxiety level has improve for the last 3-4 months, but I was so wrong...

Last ENT appointment (Sept/Oct last year) wasnt that bad actually. He did cry a bit when the doctor examine him, but that was it. Takde lah sampai meraung2. Tapi kali ni, he was crying as soon as we enter the consultant room! And the consultant room happen to be the same room as Mr Samy (Surgeon)' room. Sebelum nih jumpa doctor (registrar) on a different room, probably thats why he was ok..

Memang tiap kali jumpa Mr Samy Z akan melalak mcm nampak antu.. Mr Samy is a very nice surgeon actually, dia pun heran kenapa Z asik melalak tiap kali jumpa dia. Mama bagitau la sebab Z ada anxiety expecially bila jumpa strangers, walaupun pelik jugak sebab dia mcm ok jer kalau jumpa doctor lain. But it makes me realised 1 thing now, Z is still having trauma from his surgery last year! It does makes senses now. Patutla dia asyik melalak tiap kali pegi out patient dept sebab kat situ la dia slalu jumpa Mr Samy. And he remembered Mr Samy, Mr Samy is not a stranger to him, but probably somebody that make him 'suffer'.

Aaahh poor Z. Bila di ingat kembali saat Z before surgery last year, memang mama rasa nak peluk Z ketat2. Not the actual surgery yg Z takut. He was knocked out during the surgery, so he wont remember. But the day before that (and of course the whole 3 weeks hospital stay in general), when they want to find out about the blockage. He was wide awake at that time. They rushed him to emergency recess room, then poke him all over the place to empty his tummy. He was screaming so loud at that time. Mama plak hanya mampu berdiri di hujung bilik sambil melalak. After that he was rushed back and forth to the x ray room with camera IN his tummy, with coloured liquid IN his tummy and segala macam test lagilah ---- while he's wide awake! Honestly, mama pun trauma bila kenangkan the situation, apetah lagi Z.. Masih terngiang2 di telinga mama Z menjerit2 'awayyyy!! awayyyyy!! gwayyy!!' yes, he cant speak, but that's exactly his word at that time. actually for the whole 3 weeks stay in the hospital. Tiap kali dia nampak nurse or doctor datang jer, mesti dia jerit 'gwayyy!!'.

Day 5 Post SBO Operation

Memula mama heran jugak, apa yang Z jeritkan. Asik ulang mende yang sama jer, and its a new words, very different to his regular babbling. Bila Mairead (Home Teacher) datang the next day, dia yg bagitau mama OMG, I think he say 'Go Away!' . We never heard the words again since he's out of the hospital. So he really meant what he said.. Mairead informed Maeve (Psychologist) about that, and she thinks Z must has traumatic experience when he was in NICU, that's where the anxiety comes actually. Pelik juga, takkan la umo 2-3 hari dah boleh ingat (he was in NICU for 16 days), apparently it could come subconciously according to Maeve..

Day 2 of life - Post DA Operation

Back to ENT appointment, this time for his hearing. Dah 2 kali pegi buat hearing test in clinic North George's St (not hospital), but wasnt successful because Z wont cooperate or in other word, Z was crying! So they refer us to hospital, with the hope that ENT team here could perform the test. Which is not. But at least this time they could do pressure test, and it was confirmed that he had fluid behind his ears. The Consultant still want to have the hearing test result before he could decide putting a grommet. So we have to reschedule the test in 6 weeks time. 

Z during ABR test in Gleneagles, Msia summer 2012

Next time the test will be performed in a separate building, so hopefully Z tak akan phobia sangat. Mama plan nak lalu ikut jalan belakang, then straight to the test room. According to ENT, kalau tak berjaya jugak next time, she will dicuss few other option that we can do for the tes involving GA kot.. Tengok ler camner.. hearing could impact his speech and also his balancing skill! Walaupun his ABR (auditory brain response) test is ok, but the blockage/fluid could impact his hearing. Mama tahu Z boleh je dengar most of the time, but we just dont know at what level. Mama nak rule out all other problem first before we go to autism route.

Autism / GDD

We've done our evaluations (4 sessions) with the Psychologist, not for autism - but for Global Development Delay instead. According to Maeve (the Psychologist) it is quite difficult to do autism assesment on Z at the moment because he is too young, however if the signs still persistence in 1-2 years then they will do the test for autism.

We have received the report last week and to no surprise, Z is significantly delayed in term of his developement. Banyak kali Maeve tanya mama, are you surprise with the result? No, of course not. I know he is delayed long ago, that's why I am worry and thats why the issue about autism arised and that also the reason why I took unpaid leave.

The good thing is (according to Maeve), she thinks some of his autism signs has dissappeared. If based on her initial assesment 6/7 months ago, Z does tick a lot of boxes for autism. Now only few issues left and most of it can be explained by his developmental delayed. For example hands flapping. Katanya babies memang suka shake their hands and arms when they excited.. ok.. (as far as I remember, Z's has been doing this since he was 10 months I think). Then pointing, baby memang tak pandai pointing lagi.. hmm.. ok make sense.. So basically Z is still at a baby stage (10-16 months), that's why he do and can not do what he supposed to do. And the fact that he has improved a lot for the last couple of months, meaning he is able to learn, just the pace isnt the same as any other toddler or even to other DS kids.

So the plan is to continue support him, more therapies, more exercise and hopefully he will reach his milestones soon.

Alhamdulillah, mama rasa berbaloi penah lelah mama for the last 7/8 months. Yes he is significantly delay, but he does improved a lot. Autism is only a diagnosis, a label. I am working on the symptoms. It doesnt matter what the label is. I hope Z will reach his full potential and I believe he will. And of course I will continue to do the very best for him :)

peace.. :)

Teeth Grinding -Video

Watching Peekaboo.. Kelakar sangat kot bagi dia 😆

Dengar giginya berbunyi? ALL THE TIME 😖
Oh and noticed the hands flapping?

Testing from BlogPress Apps.. yeay! dah boleh upload video ;)

- Posted using BlogPress from my iPhone

Rabun

Enjoy while waiting for the appointment :)

Mama tak tahu nak update ape nih.. Tengah lunch hour. Mama x bawak bekal pun harini, nasik dah habis malas nak masak. Sempat grab mini cakes 2 ketul jer tadi.. (sekarang dah jarang keluar lunch, sep duit hihihih).

Anyhoo, Isnin haritu appointment mata dengan Dr Emer. Mama off ler pagi tu. Z was in a very good mood. Walaupun agak lama menunggu (setengah jam jer pun), he was absolutely fine. Memula baca buku, then pegi playroom, then mama sogok iphone. Masa jumpa Dr tu of course la dia melalak kan.. apatah lagi bila doctor masukkan ubat titis dalam mata then suluh2 plak mata dia..

Dr Emer kata mata Z dah rabun short sighted - rabun jauh :(. Tapi dia kata for now belum perlu pakai spec lagi, but she will have to see him more frequently. Memandangkan mama dan papa pun dedua rabun, kami memang dah expect Z pun akan rabun. It just happen earlier than expected jer..

Nasib baik belum kena pakai spec. Kalau kena, mama pun tatau nk buat camner. Z sangat sensitif around his face. Nak sentuh muka pun susah. sejuk2 ni sepatutnya kena pakaikan topi, jangan harap ler.. memang dia akan buang jer. Mama selalu jer belikan sunglasses untuk Z. Ala yang murah2 tu jer, pun sama lah. dia campak jer. Macam mana lah nak pakaikan spec nanti yer? 

Rimas jer bila difikirkan. Sigh.. hopefully by the time Z kena pakai spec tu dia dah boleh faham the reason behind it. 

Now mama nak kena bagi makan makanan yang boleh membantu mata Z. Tapi mama baru baca carrot (orange food) tak elok bagi banyak2 untuk autism. Especially when they have issue with thyroid as well. The worst thing is, Z tetiap hari makan orange food masa duduk dengan bibik dulu (dia kan mana pernah nak buat variasi makanan Z, asal Z suka sudah ler katanya..) So pagi Z akan makan baked butternut squash (pumpkin) with apple, lunch and dinner plak mesti ada sweet potato. itu jer laa tetiap hari. patut la Z posses autism sign. Well at least that could be 1 of the reason for it la..

badan Z tak dapat nak convert carotene to retinol that is useful for his body. disebabkan tak boleh pakai, beta-carotene tu akan berlegar dalam badan end up jadi toxin jer --> toxin is 1 of the cause for autism!!!!. the best way is to treat thyroid first. Tapi sebelum ni dr kata tak perlu sebab thyroid Z slightly above normal jer (TSH 6++). Tapi mama baca even TSH above 4 pun dah sepatutnya kena treat.. (normal is 2-4) sigh.. camner nih. Mama baru jer decide to slowly reduce pengambilan orange food dalam diet Z, now issue with rabun pulak. but the thing is, kalau mama bagi Z makan carrot banyak2 pun tak guna jugak, sebab badan Z memang tak boleh nak convert it to vit A pun.

berbalik kepada issue rabun, mama rasa sebab thyroid la Z rabun. Dia tak dapat enough vit A. Kan? So he need thyroxine (ubat thyroid). Thyroid does effect a lot of things actually. Mama pun tak faham kenapa doctor tak nak kasik ubat. Nampak gayanya mama kena jugak la carik vit A supplement for Z khas utntuk mata. Susah btol nak challange doctor when we are not a doctor ourself. Kan bagus kalau mama nih doctor. Papa? tak pe laahh.. alasan bukan bidang dia. x pernah pun nak buat extra study to understand the situation. Betullah orang kata mama always knows best! or at least mama just want to give the best for Z..

Hmm.. dah mengarut2 dah.. ok lah, baik mama clock in and start buat keje. nanti bleh balik awal sikit.. esok Jumaat, dah cuti :)

Full House

Semalam first day mama as a part time SAHM.. (nak jugak mention tu kan.. :P)

Z ada appointment pukul 4.15 so mama plan sempat la kot nak kuar shopping kejap tengah hari tu.. Sekali pukul doblas baru mama habis mengemas dan mandikan Z, lunch tak prepare lagi. Z mesti nak nap dulu sebab pukul 1 mmg waktu tido dia.. memang tak sempat la nak keluar..

Nak sikat rambut pun susah..

Padehal bangun awal sama mcm hari kerja jer, punya la banyak mende nak buat huhuh.. lagipun ada orang nak datang rumah kan, kena la make sure rumah betul2 kemas (kemas la sangat..) tak per la, esok la pulak kita keluar shopping2 yer Z..

Oh, believe it or not, this is the first time mama duduk rumah berdua jer dengan Z! (I mean for a whole day) Mama pun baru realised. sebelum ni kan ada bibik, kompem2 la dia ada dirumah sepanjang masa kan.. even kalau on holiday pun, mesti ada papa.. so x pernah lagi lah mama kena 'tinggal' berdua jer dengan Z. kalau keluar tu lain la citer kan.. wow.. anak dah umo dekat 2 tahun setengah baru dapat spend time alone dengan mama kan.. kesian.. (-___-)

Ayu tak saye? hihihi.. pipi merah kena eczema lor sejuk2 nih..

Pasal appointment semalam pulak, yang datang Mairead (Home Teacher), Val (Dietitian) and Rianna (Physio Therapy). 

Val datang sebab doctor Murnaghan yang suruh. Kan dia bising2 haritu cakap Z dah underweight.. bila check Z punya berat 10.5kg. Val kata Z takde la underweight yang merisaukan.. sebab his growth chart still on the same line as before jer.. cuma sebab Z tinggi berbanding dengan berat dia, sebab tu Dr Murnaghan bising.. Dia kata its quite difficult for Z to gain weight sebab Z tak makan finger food or any textured food yet. Val suruh tambah protein dalam makanan Z. the easiest way is by adding fat. protein banyak dlm fat. Tambah 1 tea spoon minyak (olive/veg) pun dah ok sbb 1 sudu bersamaan dgn136 calorie dah katanya.. (eh, mama pun tak pernah kire brp calorie perlu diambik..). semenjak balik ni mmg mama dah letak 1 sudu sunflower butter dlm nasik Z. rasa lemak berkrim gitu.. pastu kadang2 mama buat nasik lemak utk Z. santan mmg bagus utk badan kita katanya.. so teruskan jer la.. jangan lepas ni Z jadi gedebob sudah.. dah la lately dia mmg suka makan.. satu mangkuk penuh (penuh sampai atas yer) dia boleh habiskan.. pastu bila mama cakap finish, mesti mengamuk.. dulu susu nak habiskan botol 4 oz tu pun payah.. sekarang (since xenotransplant actually) 6-7 oz pun dia boleh habiskan sekali hadap jer.. tapi berat still maintain, ok la kot..

 

While mama berdiskusi dengan Val, Mairead plak 'bermain' dengan Z. Tapi Z melalak jer lebih sambil bergantung kat kaki mama.. sabar jer laa.. maybe dia ingat Mairead nak bawak dia g skolah kot.. sebab last week Mairead dtg skolah Z. Dia jumpa teacher aoife sambil 'ajar' Z. Mairead kata masa dia kat sekolah tu, mmg nampak Z really unhappy. he looked tired and stress katanya.. sedih mama dengar :( hopefully Z penat sebab the long journey back from msia jer la.. (Dia pegi hari isnin, kami sampai hari ahad). lagipun pagi tu Z bangun tido pukul 4.50am! hopefully on other days he is enjoying his school :(. Mairead pun tanya apa plan mama lepas ni (apart from the part time leave). nak teruskan hantar Z ke creche ker? abistu, apa lagi option yg mama ada.. mama kena keje.. dia suggest find another baby sitter perhaps? sigh.. entah la.. honestly mama lagi prefer kalau Z pegi skolah drpd duduk rumah dgn baby sitter yg ntah hapa2.. kalau dapat yg bagus ok la, tapi mana nak carik? 

Mairead kata dia dah apply Special Needs Assistance (SNA) for Z untuk September tahun depan. Tahun depan Z dah umo 3 tahun, so dia sepatutnya dah boleh masuk Playschool. (toddler class pun tak naik lagi nih..camno?) anyhoo, kalau dapat SNA mmg syukur sangat laa.. sekarang ni satu Ireland mmg kekurangan SNA (budget takde). anak kawan mama (Firaz) yg dah kompem autistic tu pun blom dapat SNA lagi. so far mummy firaz kata dia kena masuk kelas khas jugak.. padehal he is categorised as a high functional autism.. Mairead kata dia dah letak Z as 'special case' sebab dia kan maybe ada dual diagnosis jugak.. so hopefully chances for us to get SNA is higher la.. SNA akan bersama2 Z di sekolah the whole day. so confident la sikit nak hantar dia skolah biasa nanti kan.. Actually this is one of the main reason why mama prefer to stay here in Ireland..  InsyaAllah..semoga adalah rezeki Z nanti.. Amin..

Btw Rianna datang tak buat apa sangat pun.. dia sampai dah lambat (jem katanya). masa dia sampai tu Z baru jer nak ok dengan Mairead. sekali nampak plak org baru, apa lagi melalak balik la mamat sorang tu.. end up Mairead jer la yg dok layan Z. Rianna suruh panjat2 sofa pun, Mairead yg tolong sampaikan.. 

Waiting List

Short note about austism journey. Semalam Maeve (Psychologist) call. Diorang baru ada meeting last week with Dr Murnaghan pasal kes Z tu.. Unfortunately the waiting list was quite long. Spring nanti baru boleh test Z. So far dia suruh mama pantau jer la behaviour Z.

Pastu dia tanya juga pasal Z masa kat Msia haritu (sebelum balik pun dia dah call utk kasik few tips). Mama bagitau la yang Z shown a lot of improvement compared to previous trip. Dulu mmg duduk dalam bilik jer.. now dah boleh la duduk dengan ramai2 orang, as long as nobody approach him or laughing.. Z mmg dah jarang melalak pun.. cuma masa pegi gathering tu memang tak dapek la nak nolong kan..hihihi (nanti mama update pasal Majlis Kasih Mesra Yang Teristimewa tu yer..)

Anyway, Maeve kata we should give him few more months to settle in creche. Sejak dia masuk skolah la yang dia start berubah tu kan.. Maeve kata dia dah pernah jumpa kes macam ni, mostly because they have no sosial interaction at home. So, bila dah hantar Z ke sekolah and he is improving, hopefully all the autistic sign will dissapear soon..

Tapi all those directly related to sosial skills jer.. Mama concern jugak pasal Z punya sensory and stimming behaviour. So far takde perubahan pun.. he still can not hold on to object for more than 30 sec! Pastu still x boleh accept textured food. Then he (sometime) still lost in his own world. So mama tanyalah Maeve ada tak tips utk mama buat in between to help him with his sensory n behaviour.. dia kata Mairead (Home Teacher) boleh bagi advice on that.. We will meet Mairead n Rianna (PT) tomorrow..

InsyaAllah.. Tujuan utama mama ambik unpaid leave ni pun sebab nak focus on this issue lah. We will try our best k.

Pengorbanan

Semoga AidilAdha tahun ini lebih baik dari tahun-tahun sebelumnya..

Mama kerja macam biasa jer harini. Cuti dah habis.. Lagipun takde semangat nak beraya sebab papa kerja, kawan2 rapat yang lain pun kerja.. Z pun bukan mengerti apa2 lagi pasal perayaan, lagi menangis adalah kalau bawak ke Malaysia Hall nanti..

Sempena hari yang mulia ini.. Kebetulan di office harini agak tenang.. Mama nampak dari kejauhan big bos mama pun macam in a good mood saja, so mama pun hantarlah email kepada beliau,

'Hi D, can we meet up? I have something important to discuss with you..'

Segera dibalasnya, 'Sure Laili, I am free now'

Maka dalam debaran, bergegaslah mama ke tingkat 6 sana..

After changing stories, shedding some tears and hugs, mama melangkah keluar dari biliknya dengan senyuman, lebih tenang...

MasyaAllah, mama tak sangka begitu mudah.. Thank you Allah..
I have 3 days to really think about my plan. For my very special son.
I think I already have a clear plan, just want to make sure that this is really what we want.

Semoga pengorbanan mama dan papa diberkati Allah. Semoga perjalanan kita dipermudahkanNya. Dan semoga Z akan mendapat yang terbaik dari kami. InsyaAllah.

Salam AidilAdha :)

Dual Diagnosis? oh well.. :(

Just when you thought thing couldnt be any worst...

Mama dah lama noticed Z ada few signs of autisme, but I didn't really pay attention to it untill recently. So I thought I'll bring the matter to his paed. Since the past 2-3 days mama pun sibuklah membaca mengenai ASD dan DS and baru mama sedar, banyak jugak sign2 yang ada pada Z. Tapi mama pun tak pasti sebab those signs are overlapping with Down Syndrome anyway..

Well today, we have appointmet with Dr Murnaghan (Pediatrician). Lepas lebih kurang 45 mins buat routine check up, I told her my concern. Dr Murnaghan cakap she noticed that as well, tapi dia tak mau mention sebab takut mama risau.. Since mama dah bertanya, dia pun has to agree that Z does has some signs :(

Its quite difficult to confirm whether he has it or not.. Autisme more kepada psychology and behavioural. very subjective especially when he is still young. They have to do few tests just to confirm it. She will refer Z to few specialist for that, but it will take months before we could really assured.

No wonder he is quite delayed compared to other DS child. He has more than just Down Syndrome! Hopefully its just a mild autistic. Dr. Murnaghan cakap she sees few children with DS-ASD before and they grew out of it. Because they were diagnosed earlier and they got a lot of help from the beginning.. Hopefully Z will grew out of it as well..

Mama dah email Dato Halim (Z's Pediatrician in M'sia) jugak. He also remind me that autistic is more of a behaviour - that can be changed! Especially on Z's case where he believe only a mild one. Walaupun Z posses a lot of autistic signs, he still has a very good eye contact. That's the biggest hope as per both doctors...

I might be crying today (and tomorrow). But I will start on something very soon. We will get through this together I promise. Amin.. InsyaAllah.. Semoga Allah permudahkan perjalanan kita.

Mama loves you so much dear!