Selamat Hari Raya Aidilfitri!! ..maaf zahir dan batin...

P.S Decided in the end to do a virtual card raya in the end...hehee

Eid Mubarak...Kullu 'Am Wa Antum Bikhair..

Eid Mubarak!!! This year, somehow I am not in the mood to do a virtual raya card with pictures of my family cause we have not taken any nice ones pun lately and also somehow so lazy to update the blog....hehee....busy with Ramadhan? Sort of I think....though this whole Ramadhan was spent mostly at home this year as we didn't go at all to Ridhwan's weekly therapy at the hospital..anyway, hope to see Ridhwan's favourite therapist again after Eid, Insya-Allah.....sooo, to compensate the usual virtual family raya card, I instead am taking this graphic as a replacement to my yearly virtual raya card...hahaa...have a wonderful Eid everyone! May our Ramadhan this year be accepted by Allah...ameen..Insya-Allah...and have a safe journey to those who will going back to your hometown!s Selamat Hari Raya Aidilfitri, Maaf Zahir dan Batin Ikhlas daripada Reenaz sekeluarga...

Ramadhan Mubarak!

Ahlan Wa Sahlan Ya Ramadhan!! Can't believe it is already one year ago i met Ramadhan and now the Holy Month has come again and how I am very much looking forward to it this year, Insya-Allah...last Ramadhan was quite a challenge for me as Ridhwan had his fits again and it was at it worst..still remember me worrying every minute about his fits coming and going at that time...but as in the Quran "Verily, with hardships come relief..." and I so believe in that...as relief was seen soon after that in the form of his progress....

Anyway, may this Ramadhan be more fruitful, blessed and filled with lots of Ibadah to get the blessings of Allah..amin..Insya-Allah...I hope this year too I will get to perform tarawikh congregation sometimes too as most of the time I have been doing at home only ever since having Ridhwan....as they say, we plan but Allah decides what is best for us kan...wallahualam...

To all family, friends and muslims out there, may this Ramadhan be a blessed Ramadhan for all of you this year and may all our ibadah be accepted by the Almighty..amin..Insya-Allah...WELCOME RAMADHAN!! WELCOME!

Freaked myself out!

In my earlier post I know how I kept telling everyone about how scared I am with this H1N1 thingy out there..and yes...it still does scares me...and bringing Ridhwan around in crowded areas is something I am trying my best not to....but then there was the question of...should I bring him to his new brain development class then? ...hmm..and since we've already paid for a term...which is 3 months...to just forgo it would be...oh my, gone with the wind the money then??!!...so then me and hubby started thinking...are we too freaking out with this H1N1 right now...are we actually being good parents in protecting Ridhwan as much as we can from any exposure of even any flu by home quaratine him...good question ya?...

So this morning, my hubby told me to call up the center to see if they made any screening..called..no one answered...so okay, think I have called them way too early...hehee... then decided, okay sms to the principal then...but since my grandmother was warded into the HDU in Damansara Specialist Hospital..that's another story here..we decided to send my mom first to DSH then go to TwiddleWink to check out IF they have any screening..and so we dropped off my mom...rushed to Jalan Abg. Hj. Openg...and then we saw the principal and her lovely kids...then one by one saw Ridhwan's classmates pulak..and said to ourselves..."So how? They saw us already...go in? leave?...they seemed okay...not sick or anything..." ...and somehow, without us realising...or we did...I took Ridhwan and brought him to class! Oh god, am I a hypocrit now?! :( ....so since I went into class now with Ridhwan, I told hubby to talk to the principal and ask her if she plans to do any screening on the kids and how is she curbing or doing whatever with this H1N1 thingy going out...

So, one hour came and went by...I had fun in class...I think Ridhwan did too! ;) ..and after the class I asked hubby what was the principal's opinion in what hubby was going to ask...which was the temperature screening tests on children...and so this is what she said...she has asked Dr. Musa one of the best paeds around and a doctor in DSH and other paeds around too, and most of them say, this screening test is not going to make any difference anymore...this H1N1 is now locally transmitted and there is no way in determining if one has it by doing any temperature screening on them...so in short...no point doing any temp screening on the kids or the adults....hmmm...quite true also cause as it is, we don't see any of these anymore in the hospitals as now only I recalled that our neuro paed mentioned they too decided it was a waste of time as its already pandemic and these temp screening would make no difference anyway...hmmm... then the principal continued to tell my hubby an interesting yet very true point to him....she believes, that they are promoting and hoping to instill in parents and especially children that a happy child will always be a healthy child..and by them being happy, with gods will, they too Insya-Allah will be healthy....gosh..that is so true kan..I mean, its logic too in a way...cause look at us ourseleves...if we are happy, we feel good, our whole body works well and our systems just works at its best...but when sometimes we feel sad, upset, angry..then comes the back ache lah...sore throat lah...runny nose suddenly comes..and many more...true right? ...So today i was reminded again...how one can sometimes forgets and panics so easily at times ya....that anything that happens is god 's will...and we as humans really can't do anything much...BUT ....doa...yes...doa...that's the one powerful tool we must believe in kan...how could I let myself worry so much ya...oh well, I'm only human right, I do have my weaknesses....or maybe its that time of the month..darn it...oops..hehee...

So, today lessoned learned....yes, I may have panicked, thanks to that I sort of cancelled an outing that was planned ages for tomorrow..but then other circumstances associated to it can't be avoided....and so, one must always...I repeat ...always turn to Allah at times of worrying and distress....I may have gone a bit worried, more than usual...plus seeing the situation at the hospital....I think indirectly seeing the list by my paed made me lost it too! Hahhaa...and I guess the fear...yes, the fear of thinking how awful it was to be in the hospital for nearly a month last year still haunts me till today...hmm, haunt? is that a right word here....anyway, the fear lead me to be even more scared and be over protective towards my one son...my dear darling son....also, with addition to my husband's fear of H1N1 stories from close friends and family members....oh well, all that must have added into it ya.!...you see, I thought when you've been in and out of the hospital a lot of times, it should prepare you for the worst, right...well...I guess I am only human, cause truthfully it doesn't...but then, its all about faith isn't it...have faith that your child will always be protected and most of all...have faith Allah is always there with you...Insya-Allah

But, despite the short term panic me and hubby had...yes...hubby too panicked and freaked out! Hahhaaa....I will still try to avoid crowded areas at least for Ridhwan....cause he still needs to be protected someway in another...as best as I can kan...so, for that, just carry that extra adult and child mask in your handbag ....and that hand sanitizer too...you never know when you need it...and as they say....prevention is better cure...and I pray may Allah protects us all in this pandemic time...Insya-Allah....wallahualam....

H1N1...social distancing...

I wanted to write about this influenza yesterday but decided not to...but when I hear more and more cases are being reported in Malaysia and the fact that our paed also looked so haggard as her patients in the ward has come to more than 20..yes more than that probably as she showed me the list at her clinic yesterday...I wanted to count actually but was just too shocked to see the list as it is....so all I did was just asked her about it instead....

My dear friends, I think for those with small children and staying with your elders, it is about time to do social distancing...and that goes for me too! I remembered my mom complaining that she read in the newspaper and said after all these cases slowly rising now only they say to do social distancing..when initially they kept saying, don't worry, its okay, our country is handling it well...banyak lah handling well, my foot!! sorry for my language...From what I heard from my paed yesterday...SDMC or formerly known as SJMC has been chosen by the ministry as one of the hospitals to accept H1N1 cases on 17th July onwards as Sungai Buloh hospital could not accommodate the amount of cases coming in anymore...not only that....IMR and Sungai Buloh too could not do the tests as much as they wanted to as to determine if a patient does have H1N1 cause they could only do a maximum of 180 test per day...soooo, because of that, now only the health ministry is planning to purchase more machines to do the testing not just in the Klang Valley but in Johor, Melaka and so forth..and when did they suddenly decide this...ummm, after we have already reached 1000 cases!!!! So, it seems that last weekend there was a dialogue between the public and the ministry in SDMC..hmm..tak dengar lah pulak about that kan...and our paed told us that many, many questions were being throwned at the minsitry..hmm..wonder what were the answers lah ya!...but not only that, it shows too many are having flu these days ...as our paed said, the ER is so packed these days that at one time, she saw people and only people in the ER as people are coming to get themselves checked....now, isn't that scrarry!

Anyway, this pandemic is somewhat scarring me a little...correction...a lot today ....as when I went yesterday to SDMC for Ridhwan's follow up check up and to get his medications...the sight of the hospitals has definitely changed....2 weeks ago, the nurses/reception people at the clinic was happily smilling and entertaining us without wearing any mask and practically touching every little cute kid that came to the clinic...yesterday? ...everyone...I mean, nearly ALL hospital staffs were wearing a mask!! Especially the ones working at clinics...even nurses who is only on stand by shift at the clinics did not forget to wear one...scarry tak? ...not only that, the majority of the little children who came to the clinic was either coughing and sneezing...and I heard the nurse telling our paed, 'Semua nie datang pasal tak sihat doctor....' god was I panicking at that time!!....so told hubby to place Ridhwan far far away from anyone who seems to be sick or with a flu and I will only call him and Ridhwan when it was our turn..and so I too took out my ever ready mask in my handbag and wore it...yes, call me paranoid but I have a stash of adult and child mask in my handbag along with Dettol's hand sanitizer....yup, when you're a mom, you're a mom....heheee...also, one must always be prepared for the worse right....heck since school I was always the one who had everything, tissue lah, stapler lah, staples lah, everything lah...hehee...now that I am a mom, lagi lah the handbag is packed with other things...now my hubby knows why in the world I want a big handbag aje yea ;) hehehe....

Well, back to the story of the hospital...and our paed...and so I asked her are these children in the wards having H1N1...she said not all..only severe ones, cause most of them who has H1N1 are asked to go home for home quarantine as they can't afford for non-H1N1 patients to contract that flu pulak while in the hospital...hmm...there's a logic in that isn't it...but one thing that is worrying her...are the childrens...too many are having the flu, not H1N1 that is, of course some are..and those with seizures are getting even worse seizures where they are having non-stop seizures in them!! Hah!! Nauzubillah...for a mother who has gone through an awful episode last year where her child had seizures for nearly 3 weeks that came and go..to hear that news...that scares her very much...as she realises also, that special needs children somehow has low immunity due to their condition...so in conclusion...Ridhwan is strictly staying at home from now on!!! Call me an over protectice mother...getting paranoid for no reason...but seeing that list of patients in the ward at SDMC..and mind you, that is only under our neuro paed...god knows, how other doctors in that hospitals have how many patients under them! ....for that I think it is best for me to share this info that I have learned yesterday and call out to all mothers and parents out there...despite what the news are telling us...or the media are telling I think it is no harm in taking extra extra precautions to ensure the safety of our children....I know, you have just gotta watch that movie, you promised them..you always wanted to eat in that restaurant with them all this while...you miss bringing them to the park and let them play their hearts out...but think...is their health...is their life means so little to us that we keep closing our eyes and do our normal routine and ignore the ongoing increase in the number of cases and the deaths that is somehow affecting more of the young ones....the children...

Thus, lets try to be patient ..and that goes to me too you know! ...and sort of home quarantine our child and probably us in these hard times for the benefit of our children and us too...when you have seen your child in and out of the hospital so often, trust me...no mother should endure that and should want to go that...these little children needs us to guide them and protect them...let us be those mothers and parents ya...Insya-Allah...

More of Neurosuit...

As you all know, I had the chance to go out of the house last weekend and attend a seminar...hehee..yes, sort of like a time off for me lah ya, ya rite, attending a seminar on how to help Ridhwan progress even better is still work for me...but a good work ;) ... anyway, initially I was worried about going to a seminar as I've left work for such a long time already and the thought of going there to listen people talk worries me that I may just fall asleep...hahaa...and the thought of mingling around with people too detest me as I'm such a shy person at times that I would probably just smile and clam up when people approach...well....so much for that, it turn out just fine and actually very interesting!! Heehee...yes, I wasn't that shy, I did speak to some parents and therapist there...and most of all, I gain a new knowledge that I find to be very interesting and quite beneficial...in terms of knowledge lah....

Anyway, the seminar was a whole day event...from 9 am to 5 pm, thus Ridhwan is stuck with his dad...hahaa....good practice for my husband anyway...but of course, his ever loving grandmother is just a room away...hehee...throughout the seminar I did miss him a lot and wondering how he was doing at home but most of all, trying to see if this Neurosuit is suitable for Ridhwan or not...

I'm sure all of you are asking, what in the world is this Neurosuit thingy all about? Taken from the NeuroSuit website, its definition is as below:

The NeuroSuit™ creates a breathable, soft dynamic orthotic. It improves and changes proprioception (pressure from the joints, ligaments, muscles), reduces a patient’s pathological reflexes, restores physiological muscles synergies (proper patterns of movement), and loads the entire body (anti-musculature) with weight (a process similar to the reaction of our muscles to gravitational forces constantly acting up on us ).

All of the above normalizes afferent vestibule-proprioceptive input (information arrives to vestibular system). The vestibular system is a tremendously important center. It processes, integrates and sends back all the information that arrives from muscles, joints, tendons, etc. It influences muscle tone, balance and position of the body in space.

The more correct proprioception from the joints, ligaments, muscles, and tendons, the more correct the alignment. The NeuroSuit is a tool that allows the body to be correctly aligned with compression to the joints increasing proprioception dramatically!

Ridhwan with NeuroSuit founder, Patricica Gonzalez

Hehhee...for those who are unfamiliar with the jargons above may say to yourself, what??!! Hehee...trust me, I too intially was always gaping when the doctors and therapist talk to each other in their medical language....okay, from my own understanding, this NeuroSuit is a suit where it is attached and connected to each other by a bungee cord(something like an elastic rubber, a very strong one too) to a vest, an elbow pad, a pants and knee pads, where connecting these cords together with a specific way will enable the child to move in the correct way or in other words...be able to sit like us normal people, be able to stand correctly, and most of all be able to eventually walk like a normal child....that's the target of the suit lah..however, as their founder mentioned again and again in the seminar, this is not a miracle suit...this is not a suit, where you wear it once, and tadaaa...my son can walk! No! ...It is a suit that helps the body to be aware of itself and hoping by having that sensory information being given to the body all at one go, the child will feel better with their body and with proper consistent exercises, the child will eventually reach whatever its milestones he/she needs to reach...sounds logic to me...also, its not all about the suit...the suit just enhances and speed the progress as we need to incorporate other therapy while using the suit, such as hippotherapy...no, we do not use a hippopatamus here! Hahhaa....hippo is horse in greek! Yup, new word i learned last saturday...or in other words, horse riding lah nie..and other therapy like the usual exercises we do with ridhwan in physiotherapy and occupational therapy...meaning intensive therapy with the usage of NeuroSuit will hopefully speed up the childs progress by few months or weeks I suppose, unlike the conventional straight forward therapy we are doing to him all this while which could be slow and may take years some time....hmmm...menarik kan....truthfully, who wouldn't want your child to walk faster! sit faster! or anything that he needs to accomplish faster...

But...as Jia Kenn's mother is contemplating too right now, the one hour session we had with Tricia(NeuroSuit's founder) somehow has not given us 100% confidence that this suit will work...but of course, when I remember what Tricia said to us, it takes time, just that its faster than the normal therapis we are doing....maybe its true ya?...wallahualam...

Well, the try out that Sunday was good...though I still feel an hour of testing wasn't enough to test the suit's capabilities....but one thing my husband was amazed was the fact Ridhwan could walk quite well without an AFO, which is a real plus point and he stood one time very straight and upright...something which he doesn't really want to do everytime we do it on him at home or even during physiotherapy...and the fact that he didn't resist and scream away when we wore him the suit..that's an even plus sign, which means that he must be feeling all the sensation given to him at one time from the suit..as I could see he was very quiet and thinking...must be thinking, apa benda ni! wow..what are these feelings....

Soooo..ntahlah, ikut harga, darn expensive...but, for Ridhwan I am willing to find or borrow it for him...but still...is it really worth it to spend that much...and will it really work? ....but then again, everything about a brain injured child needs repetition right....but if the repitition can be done with a tool that shortens the period to reach the milestones...that's even better right? ...truthfully...if i had that much of money in my bank..I'd go for it...what do have i to loose...okay, so my money..but there were examples that I saw on last saturday and it amazed me...so maybe different child will take different time...but if it helps somehow...why not right? ....I think I need to solat istikharah for this one....also wait for the feedback from our rehab dr. also, she looked pretty excited with this suit....so far our therapist likes the suit...but wether it would be useful for Ridhwan is still debatable as Ridhwan has progressed so well now...but then its that word, speed...faster....man, i want him to walk fast if I can kan!...sabar Reenaz...sabar...

Anyway...may Allah give me wisdom to decide this NeuroSuit thingy....and if ada rezeki to buy this..ada lah Insya-Allah....but for now, thanks Pui Yen for calling me about this suit...thanks Fezia for setting up the time to try out the suit ...and thank you Tricia for designing a wonderful contraption/tool that is helping so many special needs children out there!!

Tricia wearing the suit on Ridhwan, sedap naa dia baring atas Auntie Sarjit(Physio therapist) dia yea..hehee...sabor je lah....

Okay, suit is on now!

See how Ridhwan seems to struggle when he is made to walk...this is very normal for me...forcing him to walk...

See how he tends to bend when walking...need to adress and overcome this too..I mean you do bend when you walk, but Ridhwan overdoes it...

That's right Ridhwan! We teach you how to stand straight okay! Truthfully, this is one of his most upright stand, we've ever seen...hmmm...so NeuroSuit working? ...

Comelnya anak mama with the hat! He lookes so cute in it...but as usual he hated it when I placed it onto his head...hehee

Ridhwan with his full NeuroSuit! Cool ya..and to think this suit has made a 5 year old boy in Hong Kong walk without assistance as far as 3 meters...amazing!! So...beli? tak beli? ...hmmm...

Neurosuit seminar and try out

Last Saturday I had the opportunity to go to a one day seminar to hear about this thing called Neurosuit...actually, there was an article about it in NST some time ago...my mom showed me the paper cutting she cut out and I just read with eagerness as it sounds so interesting as it originated from a suit being used by cosmonauts in Russia last time and it seems it is still being used by them now!...wow, Ridhwan in a suit worn by cosmonauts!! (in the US they are called astronauts as well all are more familiar with) ...however, then I wondered if this special suit is from the states, then how much would it cost after times 3.6 or so like that, dah lah austronauts guna woooo...so, I never bothered to ask the person responsbile to bring it into Malaysia, thinking it would probably cost a bomb!...untiiiil...yes, until dear Jia Kenn's mother called me up asking me if I'd like to know more about it and try it out if it is suitable for Ridhwan...and for that Pui Yen, I am so grateful that you made that call to me and the follow up with Fezia as it has been a wonderful experience and eye-opener for me last weekend...

Okay will talk more about this suit...for now I'll be posting pics only....and to know more about Neurosuit, you may google it up and find quite a few pics of it and their main website is www.neurosuit.com ....I'll be back with more Neurosuit ya ;)

Ridhwan trying out the Neurosuit for the first time!

Ridhwan's new school!

Yup, Ridhwan has a new brain development class!! Well, we were going to Shichida all these years...I still can't believe that Ridhwan has been attending Shichida method since 6 months old and he is already 4 years old now! However, lately I noticed that Shichida was somewhat not suitable for Ridhwan anymore as the class was a bit too advance for Ridhwan....you see Shichida method is good, that I do agree, however, i noticed as the child gets to the age of able to write, they tend to have lots and lots of writting exercises in class which is actually good but for someone like Ridhwan, which have not learn to even grasp a pencil or pen that well...it can be quite frustrating to the mother...yes, the mother is the one who gets frustrated...hehee...well, maybe Ridhwan too kan, its just that he never shows it aje...so after forcing my hubby to attend the Shichida class a few times and made him see for himself why I told him that I am now a bit 'tawar hati' with the class...he understood why I am frustrated....but then...yes the but....I just can't quit Shichida and not have a backup class for him...he stills need stimulation and interaction with other kids as it would be very beneficial for him....and as if Allah has answered my prayers, it so happened that one of his classmate's mother was starting up a new brain development center! As Shichida is from japan, this new class is from America...Sadly, I didn't have the chance to hear the founder from America gave a talk when she was here early this year..or was it last year...anyway, the wonderful mother, yes I like her a lot, such a sweet and gentle person and friendly too! Well, she told me all about the new centre and told me, if anytime I'd like to join it should I leave Shichida, just contact her and do come and visit the centre whenever I wish to. So, I decide first to look up in the internet this new place called Twiddle Wink....Its link is here ya Right Brain Education ...and this is a paper clipping of the Twiddle Wink centre being visited by our Prime Minister's wife, Datin Rosmah.

Anyway, I've only been to one class with Ridhwan at Tweedle Wink as he was down with chicken pox recently. But just by being in one class, I find that this class or centre is somewhat different from Shichida and is unique in its own way. For those mothers, who have been telling me that you are in the waiting list of Shichida or even been rejected, do try out Twiddle Wink as your 2nd choice as personally Shichida in some ways have helped Rdihwan a lot but maybe you could try with Shichida one year or two to get the ideas on how to do home practice and if you want new interesting brain development centre to enhance the child mentally and physically, yes, physically, one of the advantages and plus point that I see in Twiddle Wink is it's not just about seeing flashcards and playing games on the table, but there is trampoline time or rebounder as they call it there and even big ball time just like Ridhwan's physiotherapy at the hospital! Which is very good for normal or special needs child.

So, this weekend hopefully Ridhwan is going back to his class...after 3 weeks holiday...boohoo..sian Ridhwan every week asking "Class? ...class?"...and sometimes saying "Class time! class time!" but he was stuck at home....sian anak mama...anyway, looking forward for the next class! Lets "have fuuuun"! as Ridhwan would day ;)

Here are some pictures of our wonderful sensei Christy and us during her last day at Shichida...I do miss her a lot..she is such a great sensei to Ridhwan....

Ridhwan and his favourite Sensei Christy on her last day with Shichida Method at Centrepoint, P.J.

As usual, my dear son wriggling away when sitting on other people besides his mother and father and grandparents..aiseh Ridhwan....

Thank you for 3 wonderful Shichida years Christy, you have been a wonderful, patient and caring Sensei to Ridhwan. You're the best lah!

Ridhwan has chicken pox!!!

I still don't know where in the world he got it...as he stays at home with me all the time...ever since the chaos of H1N1 , we too have been avoiding shopping complexes and crowded areas...well hubby and I do go out to buy groceries or important things for ridhwan but Ridhwan has always stayed home...except..one sunday afternoon where we went to SACC but that was a very short stop...and then of course we went to Ridhwan's new brain development class in Taman Tun Dr. Ismail...which will be my next posting ya ;) ...so then the question arise, he got it from the kids in the new class maybe? though the other kids were fine...OR did he get it from the new speech therapy at SDMC which didn't touch or interact with him pun and that was like 2 weeks before he got it....hmm..wondering...wondering...

Anyway, wonder all I can...he got it! It freaked me out a bit at first as hubby and I initially thought it was 'bisul' at his thighs but as usual the mother's instinct knows better...I told myself if this was not bisul, it sure looked like chicken pox...but then, he has no fever...and also it was that one little bisul which looked watery on his thigh, so I though, nantilah ask my mom and it was probably just bisul....and so the instinct was right!!..on Tuesday morning, he was covered with spots! Red spots and some watery!! Oh dear, it is chicken pox...but since the spots were so small unlike mine, when I had it at standard 5, loooong time ago...I was thinking, eh tul ke chicken pox nie or is this some other allergy or something...well, me and my mom decided, query all we can to ourselves, the best thing is to bring Ridhwan to his neuro paed in SDMC. And so, on a tuesday afternoon (cause she only has afternoon clinic on tuesdays) we brought Ridhwan to see his neuro paed....Yup, I was right, it was chicken pox! Though the thing was, he already had a vaccine jab in 2006...and somehow he still got it! But since he ajready had a jab, the neuro paed told me that it would probably be mild and from how it looks and spreading, it looks like a mild one and also since he had no fever...well, it is sort of good news as the one thing we would be worried is if he gets fever...and fever scares me cause it means, temp rising and fits....yes...the scarry thing called fits may just re-occur...nauzubillah...so in a way, it was sort of good its a mild one and he got it when he's young and also my dad said this would definitely boost his antibody and his body will be stronger..Insya-Allah...amin...

So, past one week, all I've been doing is putting calamine on all his spots...he was a bit cranky last week but he is such a good boy as he really didn't complain and not much crying you know...I am so proud of you Ridhwan, you are one strong boy and you really didn't cry much but was just cranky once or twice in a week because of feeling itchy..but that's it...otherwise he has been such a patient and calm boy...mama is so proud of you my love!!

Oh and today, he did something so sweet...he crawled to me quickly when he saw me as I just finished cooking his porridge and he tried to climb on me and said "Mother...mother...angkaaat...angkaaat..." ..yes....he sometimes likes to call me mother...hahaha...and then when I did eventually carry him, he hugged me and said "My mother!!".....gosh! I was surprised the fact he knows the word, 'My' and he used it with 'Mother' and to tell I am his mother!! You made my day today Ridhwan...you really did..and my son...your mother loves you so much and prays everyday you'll be a healthy and strong boy always...amin....

P.S Pic of him with calamine is coming soon ya...i get so engrossed in taking care of him sometimes that I even forgot to take pics of him...hehee...

Inspiration...

How much do you watch TV? Me?? A lot....sad to admit lah...hehee..but yesterday I sort of needed or wanted to watch TV as it was sort of a break for me from printing after printing of materials for Ridhwan's pre-writing exercises....it took me such a long time as I wanted quality materials and if possible coloured materials, which is susahnya nak cariiii! So, after much thinking, and frustration, I decide, oh well, buat sendiri je lah..besides having gone to Shichida last time would help me to get some ideas to prepare Ridhwan's writing material ya..Insya-Allah...

Anyway, back to the story of TV....last night I watched a movie called 'Front of the class'...I actually saw it a few days ago...the ending that is..couldn't understand it actually..yelah, saw for 2 minutes, the movie finished...hehee...then a day after that saw it again or actually glanced at it since my dad was changing channels ...in my mind...hmmm, menarik movie nie, why is that boy doing that yea? but still didn't watch it....then, last night, I got to sit down and actually watch it! Woohooo! You see, the movie is a very simple movie but soooo inspirational for me...the movie is about a young boy's journey in dealing with his condition called Tourette syndrome....a little explanation of the movie and Touretter is given as below ya...

Brad Cohen is a motivational speaker and an award-winning teacher and author who has severe Tourette syndrome (TS).Cohen described his experiences growing up with the condition in his book, Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had, co-authored with Lisa Wysocky. The book has been made into a Hallmark Hall of Fame TV movie titled Front of the Class.

During his childhood, Cohen was accused of being a troublemaker in school and was punished by his teachers for the tics and noises caused by TS. He decided to "become the teacher that he never had". After he graduated and received his teaching certificate, 24 elementary schools rejected him before he was hired at Mountain View Elementary School in Cobb County, Georgia. As a new teacher, he was named Georgia's First Class Teacher of the Year.

Tourette syndrome (also called Tourette's syndrome, Tourette's disorder, Gilles de la Tourette syndrome, GTS or, more commonly, simply Tourette's or TS) is an inherited neuropsychiatric disorder with onset in childhood, characterized by the presence of multiple physical (motor) tics and at least one vocal (phonic) tic; these tics characteristically wax and wane. Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics.

Anyway, these is just a summary of the movie, what made me inspired from the movie was the dedication in Brad Cohen's mother to find the cause of his 'tics' and his behaviour which his father sad to say always kept thinking was his own doing out of spite when in actual fact he had no control of it whatsoever...I really felt pity and sad when he was treated badly by other teachers during interviews and even students when he was young...and realised how ignorant we human can be...but his mother is someone you can't help admiring for she instilled in her son the will to fight his syndrom and prevail above all despite the 'disabilities' he was facing and the way the society reacts towards him...that...really saddens me...that made me cry...yes, society my friend...a scene that realy made an impact to me in the movie which made me see there are still some hope in the society hopefully..and malaysian society I hope...though I am doubting it though....anyway, the scene was when Brad's teacher send him to the principal's room after he was considered disrupting the class with his 'tics' which sound like barking at times, and yelping...he has no control of it for goodness sake you moron! Oopps sorry for the language..I can't help saying that to the teacher character in that movie who send him to the principal's office as it is so obvious how ignorant he is....well, when Brad waited for the principal, the principal came out of the office to meet Brad and looked very upset...and asked Brad "what is school for?" ....Brad just looked at him...and the principal himself answered the question...he said "to educate.....to teach knowledge to eliminate ignorance..." (i think the word is eliminate or somewhat similar meaning) and then he asked Brad to come to some school orchestra later during school that day...and Brad initially said no cause he'd disrupt it with his 'noises' as he calls it...but the principal insisted...and so he went...and of course, during the orchestra playing, he couldn't help himself by making all the tics sounds and other kids were shhhhh-ing him all the way...it looked so sad at that time cause he really couldn't help doing it....then right after the music finished, the principal called Brad to the stage and asked the audience "did you hear the noise just now?" the students said yes...he even pointed who made the sounds....at that time, Brad looked pretty upset and is making even more tics sounds....then the principal said " come up here Brad Cohen..." and he asked him one question at a time...why Brad did it...he said its a neurological disorder...why does he not take medications?..Brad says there is no cure for it....why didn't he stop it...and so forth...which he is indirectly telling or teaching the teachers and students why Brad was behaving in such a way...and one question that made me smile was when he asked Brad "What can we do Brad to help you with the syndrome....what can the whole school do to help..." ...that made me cry.....why?.. here was a principal indirectly educating his staffs and students to learn about why this young boy is behaving that way which is out of his control and has no cure, and most of all, he cares....he actually cares how Brad was feeling...and he was eliminating ignorance in his school....ignorance which our society has yet to overcome...which made me cry even more as I straight away thought of Ridhwan...his future....his interaction with the society when he is older....the fear..of how peoples ignorance could actually weaken him at times and saddens him just as Brad felt in his many rejected interviews to become a teacher....BUT..yes the but, Brad was an example that dreams do come true, he wanted to become a teacher, he became one! He overcomed peoples ignorance by being very positive and answering all their ignorance in a well mannered way...he overcome his Tourette by explaining to other teachers and students..and eventually earning their trust and most of all respect.. for being brave and daring to reach his dreams despite having to deal with his condition...that made me really cry like mad as that is so inspirational for a man to be strong despite his 'disabilities' as some may call it...but his condition is also a blessing for him and his strength to face the ruthless ignorant world we have these days....

For that, I am so inspired with Brad's strength and achivement that I do hope that Ridhwan too will have that confident, that strength, that patience when he grows up one day....and I know, I need to be that mother that Brad's mother is... to always be there for him, give hope and confidence in him...and of course unconditional love....Though, I know our society still lacks or are so ignorant of the brain-injured people out there...and that saddens me a lot....I have heard of many stories mothers are having problem even sending a child to a kindergarten so the child may interact, socialize and learn...all they want is to learn ...please...why deprive them from that?...why say no just because his head is small..why sat no cause he's autistic...why say no cause he keeps asking to much questions...why say no just because he can't walk...why say no beacuse he can't see....whys say no just because you yourself don't understand what cerebral palsy is or microcephalic is....why?? why?? you answer me you ignorant so-called educators out there!! ...sorry, got a bit emotional ya....hehee...but, these are what we brain-injured/special needs parents are facing, going to face or have faced....so may Allah give strength to these parents and most of all to the child...to just do what he/she wants to do and would like to achieve and not let their disability and society's ignorance to hinder them from doing whatever they want to do or be....

It made me think too you know....you say you want to be a teacher...but think again...why do you want to be a teacher? to educate yes...but is there a clause somewhere that says..I only want to educate normal children..normal students...normal....then, what about the brain-injured ones? ...as an educator, shouldn't they have the priviledge and chance to learn and be educated too? Just because the child has ADD or ADHD or autistic, you suddenly indirectly write in your resume "will teach except to special needs" ....hmmm?? ....I beg teachers out there or future teachers out there please think back of why you want to be an educator ...the principal who made Brad's day in the movie is a man who deserves his title "an educator" ..as he himself said, "you go to school to get an education....to get knowledge...to eliminate ignorance..." ...so whenever you see a brain injured/special needs child...think of how he/she sometimes feel frustrated not being able to learn certain things at a normal pace as other childrens are doing.....think of how, he/she would love to play and learn just like their so-called normal peers..think of how, they are actually struggling and have to work harder to do what is called simple but could be darn difficult to them...

So, my dear friends...I urge you to educate yourself...I myself am still educating myself too...educate your children about how the world out there isn't exactly a perfect one, BUT...can be a better place for your child and someone elses brain injured child ...cause you know, you learn, you have educate yourself about the many differences between a brain injured child and a normal one..but at the end of the day...they all want the same thing....to be educated...to be learned...to have knowledge..to live together with everyone else...to have a life...a meanigful life.....

Excuse me for some of my languages ya...but seeing the movie really made me think hard and how our society lacks the education in special needs...and if I can just share a bit of how a special needs parent feel and experience...I hope you will have some idea of how Ridhwan or in general brain injured children are facing and will face in future..and please try to help them as much as you can, stop staring at them, don't open your mouth and gap at them, don't run away from them seeing them in their wheelchairs or funny shoes or apparatus on them....but smile....yes...smile...smile at their parents...smile at the child...and most of all...bersyukur....syukur banyak2x that you are normal and you have a normal child....be thankful to Allah that you are blessed with a child and pray that your child one day will make a difference in the future and never let them be ignorant around the special ones...the special needs ones....wallahualam....

The EEG test results...

Monday last week was Ridhwan's scheduled EEG..the last one we had was probably last year kot when he was warded for nearly 3 weeks....anywa, to my sadness but as I have expected, Ridhwan still has seizures in his brain...hmm...sigh...we arrived at SDMC around 9 am to go straight to Level 1, North Tower to the Diagnostic lab...I think I have been in that department so many times, I even know if they are new people in the department..some who knows me or recognise me I suppose would nod at me or smile at me...Today's lab technician or assistant..or what do they call themselves ya? Anyway, she was new..I think or... maybe old as in old staff yea ;)...but she was nice...anyway, this young lady was eager to perform the EEG test on Ridhwan but little did she know, Ridhwan just hates, and I mean HATES anything to be on his head or hair...so initally, it was quite a commotion in the neurology testing room 1 as we were trying to hold Ridhwan's hand..hold down his head and calming him down as the young lady tried to place the wires on Ridhwan's oh-so-comel head....that was hard for me...truthfully it was....why? well, first because he was moving his head non-stop trying to stop the young lady from placing any wires on his head...then he started to cry..alamak...this was hard for me...I noticed as the child gets older it gets harder to do any test on them cause they understand better and they show if they hate it or feel uncomfortable with what is being done to him...but after much coaxing and singing! Oh yes I sang Hahahaha...then he finally settled down and allowed the wires to be place on his head..mind you, banyak bebenor wires dia...though I am used to this test but somehowe I don't know why it gets a bit harder for me to see it these days but at least knowing this test would last around 3 hours, I'm somehow prepared about it...sort of...hehee....

Since Ridhwan refused to sleep! You see the EEG test needs the child to sleep for at least 30 minutes to check and see how the brain works during resting period...this is also good to see how the brain is during resting period where it should show no sign of seizures as it is resting..but so much for that!! No matter how many times I tried sleeping next to him...or even my husband tried to sleep next to him...he was just not interested to sleep...soooo, it looks like the 3 hour test is set to go! However, me and hubby took turns to go in and out of the room before we both become too agitated just like Ridhwan was getting to be....so, sometime during the test, I went and busy bodied myself in the next room to actually see the results of Ridhwan's test on the pc...and to my sadness...yup...its there alright even when he is practically lying down doing nothing..and so I disturbed the technicians about how in the world do you read the results..which is the right and which is the left...what in the world is that line doing that? ...and so forth...but all in all, I learned quite a lot in a very short time and sort of knew what the readings were all about....then after 3 hours of lying down on the bed....Ridhwan that is..we were finally asked to leave or in other words, dah abis test dah!!

Since the technicians and the young lady needed some time to properly tabulate the results or readings, they asked to come in an hours time...aiseh, that means, we can only see our neuro paed after lunch?!! Hmm..why am I not surprise..how ones memory seems to forget that this was the same scenario we went through last year...or wait, was it during Ridhwan being warded...hmmm..see...the mind..the mind...well, after a good lunch at the cafeteria, thank god the food there has always been yummy! heheee...we then made our way back to the diagnostic lab to get the results and then to the neuro paed's clinic....and after waiting for half and hour or so it was our turn to see the neuro paed....and not to my surprise, surely enough she said there are still seizures in Ridhwan's brain :( ..however, the sort of good news is the seizures are lesser than the previous EEG test we did....yahoo! walaupun tak hilang semua, its good news you know to know its slowly getting less...amin...amin...however, then only also I know from the EEG you sort of know if the brain is matured already and Ridhwan's was getting there but not yet fully matured...hmmm..and then the neuro paed showed a matured or a 4 year old brainwaves..and I was like...oooh...alamak...hmmmm....work it girl! work it!! yes...that was what came to my mind when I saw the difference in the brainwaves.....however, the visit to the neuro paed was as usual long ..however, fun this time as Ridhwan was actually interacting more with his neuro paed....but it then shows that seizures are still there..and we have got to make it go away....how..well for now its medications....additional pulak tu!!! sigh...but doa....that's one way to do it..most powerful thing you know the doa right...amin..Insya-Allah...

So all in all, seizures? expected..increase in medications? yes....sigh...otherwise its back to constant therapy and therapy and therapy.....so Ridhwan, our journey is still a long way to go....may Allah always be with us...and give mama strength to give what's best for you yea...Insya-Allah...amin...

Why? ...why does he do the head banging thing...sigh..

Lately, before and after the seizure episode, Ridhwan has been having head banging session so often that not only is it driving me nuts its mentally torturing me and drowning me emotionally..lately tears have been on my cheeks cracking my head or worrying why in the world does he do that??!! Some may say it could be behaviour problem..what??!! God knows what brain-injured children does sometimes isn't it...but he has been such a pleasant boy all this while...never had this head banging going on..and now lately, its what he does most of the time when he wakes up...huwaaa!!! though one worry that is making my head spinning around and tears dripping on my cheeks even more is that he may still be having unseen seizures in his head....oh no...for example in the morning just now, he looked at me, smiled, then suddenly made a sad face and said, "sakit.."...and rubbed his head....then he played for awhile in his cot...and then said again "sakit..." and rubbed his head...huwaaaaa.....truthfully, these past few weeks have been very hard for me...and somehow its not doing me any good as somehow I am not able to bring myself up like I usually do and am in a depression state at times that its pulling me down even worse....and I hate that so much!! ....I must be tired....or too worried...or dunno lah...all I can say, I have to be strong wether I like it or not...and I am praying like mad that his EEG next week will be okay....or not? ..seee! this negativity in me...sigh...Ya Allah, I pray to you, please keep me strong in times like this, there is no one else I can turn to except you...please keep me strong and please protect Ridhwan from anymore seizures....please....sob.....sob....

Ridhwan's makan2x at Nenek's house....

On 31st May, we decided to make a very small makan2x at Ridhwan's nenek house to celebrate Ridhwan's fourth birthday...Initially we wanted to do at my house as we did last year but then thinking of my aunt who had stroke and still has difficulty in walking, our house would be quite a challenge for her to go to the bathroom when nature calls ;) So, this year, Ridhwan's grandmother decided we do it at her house instead. However, sad to say, my aunt and grandmother could not attend...but its okay, at least my uncle and my brother's family was there...I sometimes ask myself, maybe I should make one big party for him like how I see many young parents these days are doing for their children..as much as I'd love to do it, I keep thinking, who's the one whose going to enjoy it most? Me? Eating away and chit chatting away...or Ridhwan? Who'd be looking around at the commotion and not having the opportunity to run around with other childrens and join in their fun or play...so after much thinking, 2 years ago, I decided, his birthday party in the big event will be when he actually walks..that would then be a celebration to celebrate his biggest achievement and at that time hopefully he will enjoy to eat and play with other children his age, younger or even older...so after much consideration, I will stick to this plan, where the 'big party' will be held when he walks, maybe next year kan? hehee..amin..so at that time, I will smile in glee and joy to see how he has achieve something that we have been working so hard all these years and for him, it is his time to shine and show the world, I did it and here I am...Insya-Allah....kita merancang, Allah jua yang Maha menentukan....wallahualam...

Anyway, a party is still a party despite now or future right? :D So, on sunday, early morning, Ridhwan wakes up by humming the birthday song to himself..how cute! And he kept saying out loud, "partyy..partyy.." Yup, he knows what is going on...hehee....and is definitely looking forward to his small party! ;) So, here are some pics to show the event, Ridhwan was a bit emotional when we started singing the birthday song...god knows why..maybe cause he knows, his party will end with his father going off to overseas and that saddens him I suppose...alah, sian anak mama rindu dah kat ayah yea? ...hehee..but we still sang the birthday song to our heart desire and he cried to his heart desire too...hahahaa...reminds me of the song "It's my party and I cry if I want to, cry if I want to...." ..but, he did enjoy them in the end as he got to open presents and played with his twin cousins...thank you Pak Long, Auntie Jah, and Long's family for coming....we really appreciate that you could make it....jazakillah khairon....

Enjoy the pics....

Alahai comeinya anak mama duk simpuh pulak..heheee

Ridhwan was being a bit shy with his Wan Jah pulak...love his new cute chair..he likes it too!

Being shy and at the same time looking at his nenek...

Ridhwan having his food first before we had ours ;)

Tze foodies at tze table!!

We had my mom's delicious mee kari and some satay..

The lovely balloons my mom blew the night before! Go nenek Ridhwan..hehee

The twins at their own corner and 'special' table...

Some of the pressies..thank you everyone!

My last minute cake cause Bakers Cottage in Shah Alam couldn't make a children cake...the cake person apparently quit his job the day before I wanted to order!!..sigh...

But was compensated by my brother, he brought one cool cake instead! Yea! Thanks Long!

Ridhwan waiting for the cake cutting ceremony...in his new chair...

Yes, he was crying at this time, notice how the twins are more excited to eat the cake...hehee

Here we were singing to Ridhwan and trying to comfort and pacify him...while Shafeeq was helping himself to my mom's tiramisu..hahaahaa...

Happy 4th Birthday Ridhwan!!

How time flies so fast and the next thing you know your son is soon reaching the age of going to school..yikes..that's scarring me right now...anyway, Alhamdulillah, 2nd June 2009 Ridhwan is now 4 years old...so many things have been endured by him throughout his 4 years of life and I pray that many good things will he be experiencing in years ahead, Insya-Allah...most of all, I pray so much to Allah for him to be a healthy child and lead a seizure free life one fine day..very soon hopefully ke...amin...amin...to my beatiful and wonderful son, I love you so much, there is not a day I ever regretted deciding to be a mother to a son like you, a wonderful boy and a joyous person as you are....Mama doa yang Allah sentiasa lindungi Ridhwan and semoga Ridhwan jadi anak yang soleh yang sihat dan berjaya di masa hadapan..lets show the world what a great man you'll be kay! ;)

Mama Ridhwan cutting the cake cause Ridhwan was crying away before that..

Oh, more pics to come soon..malas nak upload banyak2x malam nie...hubby just came back from overseas...bonding time for me, hubby and Ridhwan...heheehee... ;)

He had another seizure...sob...

Seizure...what is a seizure??....truthfully, I always got confused between the term seizure and epilepsy...also sometimes to explain to people what is a seizure or epilepsy can be quite disheartening as many don't know much about it...or some don't even know about it...but i can't blame for other peoples ignorance as I was once an ignorant person myself before I had a special needs child...so to summarize what is a seizure or epilepsy is,I thought of sharing with you what are its definitions according to epilepsy.com ...which is a frequent viewed website when Ridhwan gets one of his seizure episodes...or fits...yes,yes, another term that people use is fits..hmmm...anyway...

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar. Sometimes, according to the International League Against Epilepsy, epilepsy can be diagnosed after one seizure, if a person has a condition that places them at high risk for having another.

The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.

By: Carol Camfield, M.D. / Robert S. Fisher, M.D., Ph.D.

Does this make sense to you? Umm..more or less lah for me....hehehee... this now is the definition of a seizure...

A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

Topic Editor: Steven C. Schachter, M.D.

Okay, so in short, what I can understand is that if you got one time seizure only you won't be categorised as having epilepsy, but, if the seizures occurs again and again, then you are likely to have epilepsy or some called as epileptic or what not...so in this case, yes, ridhwan has epilepsy and mind you...he has had different types of seizures within his 4 years of life now...

So, from what I've seen and read he has had more than 3 types of seizures already...but overall it was in the primarily generalized seizure type...Primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once. Now, he has had absence seizures - brief episodes of staring. Another name for them is petit mal (PET-ee mahl). During the seizure, awareness and responsiveness are impaired. People who have them usually don't realize when they've had one. There is no warning before a seizure, and the person is completely alert immediately afterward....so, this seizure happened when he was less than a year old I think...where he would stare away into the distance as if wondering about his future or something..and so I thought!! Rupa-rupanya it was one of those silent seizure...oh my...

Then he also had what they called the myoclonic seizure..now for your information, most of the seizures that Ridhwan had before looked harmless and somewhat not so scarry like the seizures I'm sure most people are more familiar such as the falling down, and trembling like mad and excessice drooling and foamy drooling coming out...yes...ridhwan had one of this yesterday...and it scared the hell out of me! Sorry about the language...buut...from what our neuro paed explained...it is the myoclonic seizure that I should be more worried about...hmmmm...anyway, what is myoclonic seizure...

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

Ridhwan had this last year...it started around May or so..or earlier..darn my memory is so failing me these days...anyway, when I saw it first time, it looked as if someone who was in shocked as if going to fall from the bed where your hands is raised up in the air...Ridhwan was like that but as the definition says more of jerking...and it sort of got worse until he had to be warded in October last year for nearly 3 weeks...and it seems, that this particular seizure is a difficult one to cure or get rid of from what our neuro paed said..that scared me even more...but she was very positive about it and said Ridhwan had overcomed his fits for 2 years before and there is a chance he will have no more fits again...amin...I have to be positive about that...and I am....

Then, when we all thought the medication combination of Lamictal and Topomax is going to be it..he had an episode in december last year...just after 2 months being warded...now this is the tonic-clonic seizure..from what I read and understand lah....

This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.

Now...what Ridhwan had yesterday was clenching his teeth, excessive drooling and the arms and legs begin to jerk rapidly as if he was being shaken badly by someone....and from what my neuro paed has informed me many times...observe how long your child's fits occur...if more than 5 minutes, insert the rectal diazepam to stop the fits...somehow my neuro paed has entrusted me with this responsibility and confidence that if any seizures may occur with Ridhwan that lasts more than 5 minutes, do not go running around the house panicking or cry away like there is no tomorrow as what I need to do is put him to the side, while he is lying down and stop the seizure once and for all....and that's what I did....yup...I did that....but....Allah only knows how my heart nearly stopped seeing him in this condition as he was somewhat unconcious at times and part of his face was stiffening and drooping....a look I fear so much and dread seeing again after last years december episode....

Okay, let me just tell you what actually happened ya...yesterday I was happily chatting away with dear Chery about weddings and all and Ridhwan was as usual in his cot sleeping away...then suddenly, he woked up sitting down in his cot...looked at me...called out "Mama.."... then was drooling like no ones business...at first I thought, oh no, is he trying to get rid of his phlegm or something?? Then the drooling got a bit more...the fear hit me...oh no, oh no, please not a fits...not when hubby is away in the office....and so I told Chery that I had to go thinking some sliver was coming out of his mouth when it was the starting of a seizure..the first thing I did then was looked at the time, count Reenaz, count...how many minutes is this....and while doing that, struggled to get hold of Ridhwan's rectal diazepam in his cupboard next to his cot...got it...then it became just as I feared, looking a bit violent or rapid jerkings...I panicked...I quickly carried Ridhwan and rushed him to my mom's room and told my parents, "Ridhwan dapat fits!!" ...and that's when the commotion got even more lah kan...hahaha...okay, no reason to laugh about it....but after seeing its more than 5 minutes already, calling hubby couldn't, line was barred! Aiseh abang, tak bayar bill ka....and oh, what am I waiting for......so I inserted the rectal diazepam as have been done before and has always been dreaded before...sigh...

The seizure didn't really stop straight away....jerkings was there...facial expression was still stiff...but he was slowly wanting to doze away...sleepy....ya Allah, the medication is starting to work I hope...and soon enough, after I carried him in my arms...he was fast asleep in my arms in a very deep sleep....

All in all, the seizure episode on saturday really freaked me out...one the stiffening of the face....it looked so abnormal like as if someone pulling his face ..then the jerkings, repetitive scarrily looking movements...and the fact it didn't react fast to the medication, so wondering, oh my god, is it going to stop??!! And of course, hubby wasn't around..that made it even more scarry...it made me also think, at this rate, it still is so much safer to live with my parents with Ridhwan's condition despite having my own house....also hubby travels nearly every two weeks...gosh, imagine me all alone in that situation in my house and what if it had been more than 5 minutes cause then I'd had to rush to the hospital all my myself...

But thinking about this all is of no use at this point...as what I should be more concerned is the fact....darn it, it came again, meaning the due EEG this 16th June will pretty much summarise that there are still seizures in his brain and medications may either have to be increased or change...and so since Ridhwan is scheduled for an appointment with his pyhsiotherapist this wednesday, hubby and I have decided to see Dr. Sofiah too after the theraphy session...not wanting to wait any longer for any new episodes...oh no siree....nope....

What I learned now...as years passing by as a mother to a special needs child and an epileptic one too...I need to be equipped with knowledge....knowledge not just concerning how to give therapy to ridhwan but especially concerning seizures....cause you see, there doesn't seem to be only one type of seizures that Ridhwan has encountered....and what to do if he had any, too was very important....and so I urged parents out there whose child had seizures before please read up or better still ask your neuro paed to explain what your child had or having...knowing is an advantage as it may just save your child's life...and I need to know more....cause I still feel I know less...but most importantly, I pray to Allah so much that Ridhwan will be fits free one fine day...amin...cause I know he is such a smart boy and there is so much goodness in him to be shared with people out there...mama doa Ridhwan that Allah will always protect you and whatever that come our way, we go through it together one thing at a time kay...I love you Ridhwan.....

fuish...panjangnya tulis kali nie....hehehee....

Gals day out!

Sunday, 17th May was one of my anticipated day cause it was booked especially to spend some time with my darling gals for a birthday outing....usually lunch or dinner....and this time around it is for dear Loges the new mummy to Meera Tioe. Loges birthday was actually in April but since she was in confinement at that time and just delivered, it was best for her to finish her confinement before going out to have fun with her wacky and umm..noisy friends?? hehee...

This time around, our little outing or date was held in Alamanda, Putrajaya..I was quite delighted to go there as it was ages since I've been to that shopping complex...it then made me recalled the good old days when the four musketeers would dash in the cute little kelisa or satria for lunch on Fridays..at that time I was working in Serdang so Alamanda was not too far away..or was it...oh well, its a Friday anyway, who wants to stay at the office...and we were getting sick and tired of going to Mines anyway...hahaa...

Well, I really can't remember when was the last time I went to Alamanda but thought, okay I know my way there...used to go there once...should be okay..besides the other two gals would probably know since they travel a lot more, unlike me where my route is home to SDMC and SDMC to home every week....well, so much for that!! ..cause it seems the other two have never been there at all!! Haa??!! Haahaahaa...and so initially we got a bit lost in Putrajaya and since the last time I was in Putrajaya a lot more buildings have come up..my bearing was at its worst...buuut after much commotion in the car and GPS and all...we finally reached there...thank god! Not too late too! Hehehe...

We had lunch at one of the restaurants in Alamanda and which I think I have not been to in years...yes everyone, this shows how much I don't go out anymore right...well that's the part and parcel of being a mother which I actually don't have much complains...home is where the heart is right? ;) ....well, we sat...we ordered but one thing we forgot ...to lower down our beautiful voices...hehee..yes, you see when girlfriends get together especially when they have known each other since school, its hard to lower down your voices and not sound excited with whatever is happening to each other...I think many people would had given us the glare...which ignorantly was not noticed by us...hahaa...sorilah yea sapa2x yang dengar these ladies talking a bit loud...but truthfully, I can't help it or we can't help it as this is how we are and its just so nice to see everyone at one time and update each other about everything when you hardly see each other unlike school days last time...so please excuse us for being loud or noisy or actually happy and delighted...hehee...

To my lovely ladies, thanks for a lovely lunch outing! This mother really looks forward to this outing every birthday and always wish could do it more often actually....so looking forward for our next outing or birthday event...love you gals to bits! Friends forever!!

From left: Me, Aliza, Chery and Loges...belin was taking this picture..

From left: Me, Belinda, Chery and Loges

Pre-writting skills...

You know, as someone who considers herself 'normal' in terms of physical and mental, it never occured to me that writttng skills for a special needs child or brain injured as Glenn Doman would always refer to, would be quite difficult and take many many many many practices to master it and where we take for granted for our so-called 'normal' ways of holding a pen and learn to write...so before I begin the story of my 'oh darn it I so have to work harder now, to make sure he can write!!'....I'd like mothers out there whom have children to give a biiig kiss to that precious beautiful head of their child that stores one of the most precious and valuable organ in his/her body...that is the brain...and most of all be so thankful to god that no matter how your child may drive you nuts at times or how tiring it is to take care of them, know it in your heart that your biggest worries about them going to school is not really much of a worry actually cause Insya-Allah they'll do fine and most of all, the ability to use that cute little hands of theirs to write on a piece of paper will come automatically and will be used with much delight and happiness by them...

So this is where my journey or story pulak starts as I learn the hard way...or maybe have known but was concentrating more on other parts of the body that I forgot that there is more to learn and know....hmm, my midwife was right...should write a book about this kan...who knows...one fine day....hehee...ooh, by the way I loved that movie...oops...getting sidetracked...hehehe...

The story starts last Friday when we had our bi-weekly session with our so sweet occupational therapy or in short OT. Ridhwan's OT is very nice and sweet and on top of that, quite knowledgeable too! For someone young, she sure has amazed me with her experiences and most of all her knowledge. Which of course is good lah kan, cause it would then benefit me a lot! Anyway, as usual we would be doing our usual therapy session, playing with the thera-puty or sticky as Ridhwan calls it...hehe..it is actually something like playdoh but oh so much better cause it can come of easily by just using itself to clean away the thera-putty away...one of its advantages is to strengthen your grip..using Thera Putty can also help with the rehabilitation of injuries to your fingers, hands, and forearm muscles by simply squeezing and moving the putty in your hands. There are 5 different levels of resistance to choose from and to help build up your hand muscles. Here are some pictures to show an example.....

One ways of using the thera-putty

See how one can actually stretch it without breaking it

Different colour coded thera-putty with its different resistance

Thus, our OT would be doing some exercise to strengthen Ridhwan's grip and make his left hand be more usable by pulling the thera-putty that was stucked to his right hand...and so we have been doing this for some time already until our OT said that today lets do some writting exercises and I said okay, would be just like Shichida. Then, she took out another cool thing which was some plastic cards where we could use a special crayon to write onto it and then later just use water to wash it away. The key word here is recycable!! Trust me, when you are a mother who is 'forcing' her child to write a lot you need recycable materials definitely! So as usual, Ridhwan was not into holding the crayon, holding it then throwing it away, make him hold it again...throw it away....then the OT said, 'Okay, never mind, time to give homework!' I was like, what??!! Heehe...not that I hate homework, but you see when you have a child who doesn't really know how to hold a pencil and is given 'homeworks' monthly..umm this is from shichida ya...hehee...you'll be like, okay, hope this is not going to be one of those, in the end the mama finishes his homework...hahaa...yes, I do that sometimes...baaad mother...but i can't help it sometimes cause there's so much other things I need to do for Ridhwan you know...but he does most of his homework anyway....really!! ;) ... and so the OT gave 2 pieces of paper and said, go home and practice doing this ya...and I was like, hmm..what's this and on the top of the 1st piece of paper writes 'Assessment for pre-writting skills' and followed by simple pictures that Ridhwan needs to practice and acquire the ability to copy the pictures...and then it hit me...oh my god, he has a hard time holding a pencil and he has to draw that horizontal line??!!! okay Reenaz, you have got to do something pronto woman!!!...and to scare me even more, it writes there the normal age a child could actually draw a horizontal line is 2 years old!! What??!! He is going to be 4 for goodness sake!! Then it hit me again, now it make sense why Shichida forces their children to write at such a young age....oh my...oh me oh my...eh that sound like bunnytown...oops sidetrack again...:P

So, I realise a bit late, or maybe not I hope...that Ridhwan needs pronto full speed ahead therapy on his fingers and hands to ensure he would be able to write soon..or fast for that matter!! And so the quest to find out what this pre-writting skills is all about is being looked out now...darn I'm so angry with bookshops in Malaysia...hampehs big time!! You see, being a special needs mummy, yes you rely on the internet for info and ideas to help your child, but its nothing compared to reading a book and getting hard facts from reputable people and writers which you sometimes question when reading a website that talks about the condition your children is...but sad to say, our country lacks in this area big time...really big time...this reminds me when I called a bookshop one day asking if they had a book on Cerebral Palsy...the guy who answered was very nice actually, not knowing how to spell Cerebral Palsy, I spelled it to him nicely and he told me to wait and check in the system and he said 'I'm sorry, its not in our system...do you have any other books you'd like to find?' ..And so since he was really nice attending to my needs, I gave him 2-3 more titles of books on cerebral palsy and 'not to my surprise' there was none in his system...by that time, he somehow sounded feeling bad that they had no book of that title at all and asked why did I want the book..and so in short I told, I have a child with cerebral palsy and so I'd like to read a book about it...and somehow from his voice he sounded even more upset and must have felt bad that there was no book at all on CP in Malaysia at the moment and felt helpless...poor guy, I said its okay, not his fault...he did then say I could order and I said, ya I know, but you see I'd rather see the book itself first and check its contents before ordering it or buying it so I know its a book worth buying....so the moral of the story...our society is still not a reading society and most of all it shows how unaware and unexposed our society is concerning special needs society...and that really saddens me that day..and so I was criticising our bookshops and libraries to my husband the whole night that day...hehe..sian abang kena dengar wife dia membebel and kutuk the lack of knowledge our society can be at times...sigh...

Anyway, that should not be an issue to me right now as I have a bigger important task at hand to overcome...but never mind, I have seen a boy who had meningitis as a baby and due to that he was considered CP but now is 5 years old and one look you'd never know he had meningits once and is CP as he could talk well and one thing that amazed me was his ability to write so well and count so well after all the things he had gone through...but one advantage he has is he is well taken off in a special school in australia that emphasises their special needs children to be able to go to a normal school at the age where your child will enter school...which as usual this oh so beautiful country is lacking....hmm...but who cares, I'll do it my way somehow...as it is, our neuro paed has pressured me that she wants Ridhwan to enter a normal school regardless his condition...and I for that matter, prays very hard that he will and believe he will...he must!! But that also means pure hard work for me from now on..slacking is a big no! no!! ...oh me oh my...:D

All I can say, I pray to Allah to give me strength to do what is best for Ridhwan everyday, every hour and every minute if possible..I'm only human and I do slack and get lazy at times...but I pray that most of the time I work hard and do what's best for Ridhwan as it is an ibadah what I'm doing for him, Insya-Allah and may Allah redha it....amin....so Ridhwan my dear...we have a looong way to go but we can do it my dear, cause I'm not going to give up and have never ever given up ...and if I could overcome my Masters while taking care of you last time and yet scored with flying colours...will give ourselves flying colours results too okay my dear Ridhwan and one day give ourselves a 'standing' ovation for it ya...amin...wallahualam...