Ashraf's birth...

Now days time flies too fast that the next thing I know is that Ashraf my youngest...wait, WOW! I have a youngest and eldest in my vocab for my children!! woohooo!! Heehee, sori but I still can't believe Allah has blessed me with two beautiful children...I did want to add more children in my wonderful family as it is, but still can't believe I now can say if people were to ask "Anak berapa?...Oh,dua!" :D ..heeeheee...alhamdulillah, alhamdulilllah, alhamdulillah...tak terkata betapa bersyukur sangat2x padaMu ya Allah...anyway, Ashraf my 'youngest', heheee, is already 5 months old!! Gosh, it feels just like yesterday I did the pregnancy test and discovered that I was positively pregnant!!

However, during Ashraf's pregnancy, it was a very eventful pregnancy, eventful indeed, not only for me but also for ridhwan..it was a life changing situation as it was the start of Ridhwan realising that his mama has changed physically and slowly not being able to hold him anymore....which was really sad cause it did affect him initially..and then there was the one time scare that nearly drove me insane...yes, you read correctly, insane...why...well, maybe not all gynae or hospitals does this routine check during pregnancy, but my gynae or sjmc it seems, does this triple screen test at about in the month of, ummm, can't remember when but after the first trimester I think, to check should your child in the womb have the probability of being...down syndrome....hmmm...not a nice test ya..and so, well I did do this test with ridhwan last time and of course alhamdulillah okay lah kan...and when I did with Ashraf....a few days later after the test, the clinic called and said,"Puan, don't be alarmed yea, but according to the triple screen test the probability of the child in the womb has down sydrome is 1 to 130...and so dr. wants to see you to discuss about it..." I was like what???!!!! ...my heart totally broke at that time, pecah jatuh, berserpihan...god knows, how I felt at that time....yes, I didn't tell this in my blog as I was worried, and didn't feel like sharing it here until now ....I remembered how I broke down to all my girlfriends, calling them one by one, crying away and sobbing away, thinking of the baby's fate and all...and it didn't help that my gynae was giving me all the worse case scenario of having a down syndrome child...sigh...but then alhamdulillah, support and strength from parents and my girlfriends, you gals know who you are ;) ...i started getting a grip on reality and thought, wait a minute, Reenaz wake up girl!! I already DO have a special needs child and look how far has he achieved, see how well he is doing, and see what I know and have done to ensure he has progressed this far...and so I thought to myself, I can do this, regardless whatever is the outcome, the baby is still mine and I will love the baby wholeheartedly no matter what!!....so initially my gynae asked me to do the amniocentesis...the part where they poke a needle into your tummy and get amniotic fluid to further confirm if your child is down syndrome or not or other case pulak ke...but I said "NO!!" ...I will not take that risk of hurting my child pulak in the event of doing that, its not as if , if I knew the child is down I'm going to abort the baby...yes, my friends, only then I knew at that time that some people do this amniocentesis thing to determine if the baby is really down or any other syndrome to decide whether to continue with the pregnancy or abort it...what??!!! gilo ke apa? dah allah kasi anugerah yang paling indah and you senang2x nak abort it by doing this amniocentesis, cause, oh u found out it might not be a normal child, so why keep it....yes people, some people view it that way and have done that...very sad indeed to know that many, yes, i say here, MANY after finding out that the child in the womb is not normal by amniocentesis they decide to abort it....I feel very very sad a mother should want to decide that...maybe to some, they say, why keep it cause it'll be hard on the family or even the child..but have they ever thought that god is giving them a blessing already, regardless how the child may end up physically or mentally in future, many people are trying so hard to be pregnant and yet some with just one poke of a needle(amniocentesis) they decide the fate of the child in the womb even before seeing the baby, that it has to go just because it may not be normal...I'm sorry but I so don't agree with that, but as some people say it is other peoples right on what they feel is best , and that is their right lah kan...but to me, I feel sad at the thought that some mothers would even think of it, just imagine if the child should know that even before he/she comes out you don't want it anymore, sad isn't it...cause Allah is great, who knows what those test results means too, for all you know, it may even be wrong! cause at the end of the day, Allah will decide should the child be normal or special, but at the same time the child is still another living human being inside you...anyway, when my gynae suggested amniocentesis I was upset to even think that this test is supposedly to let me decide the fate of my child, no, I can't do that, its against my belief and stand, regardless if the child will turn out not 'normal'...and thanks to my friends who knew me better, they all knew and told me whatever the outcome is with the test results and during delivery they know I will keep my baby and love it just as much as I am loving Ridhwan...and they are right, I always felt that regardless what the test results were....though, as much as i accepted that "probability", I must admit deep down in my heart, I did worry, I was worried for my baby's sake and that did affect me very much...you see, once you have a special needs child, the fear is there, the fear that plays in your mind and heart that asks these questions, will he be normal? will he be able to lead a normal life? will this pregnancy be fine this time? ....its only human I guess that as a mother you can't help asking these questions to yourself in the next pregnancy when you already have one special needs child...

but again, Allah is great, I am so lucky and thankful to meet so many inspiring people and nice and wonderful people ever since Ridhwan came into our life as when I got this alarming news the next thing I did was to discuss about it with Ridhwan's paed, Dr Sofiah...it was her words of wisdom and encouragament that gaved me hope and realise that as much as I accepted the situation, all is really in the hands of Allah and then there is that great thing we have...doa....doa...and doa....and with that in mind, well since it is just a probability anyway, I prayed real hard that the test was just a 'probability' and that my baby will be a normal healthy baby but should it be special, I will love it with all my heart regardless.....so, thank you Dr. Sofiah, that day when I met you with my husband to talk about this really gaved me strength and hope to go through my pregnancy without worrying and driving myself nuts...talking to you really made a difference and made me face the days ahead with much strength..thank you so much dr!!....Dr Sofiah was right in saying that anything can happen even in the womb, the baby still have a lot more months to go and also tests are sometimes not accurate and no matter how canggih our technology is to detect abnormalities and what not, Allah is the one who decides everything...and to Allah should our doa and hope be turned to...wallahualam...

Anyway, that was the one real scare I had during Ashraf's time lah kan...then there was the time or actually 2 times Ridhwan was warded...gosh, banyaknya dugaan our family during that time....but it was at that time too, in the midst of all these, Ridhwan attended WQ Park which is another blessing as it has given Ridhwan so much hope and progress that I am very happy to have placed and made sure Ridhwan was accepted into the EIP....thank you Dr. Sofiah and Dr. Taayah for accepting Ridhwan despite his disability in the form of not being able to walk yet, at that time that is...I know it must have been hard for the teachers and therapist initially to handle ridhwan but well, look at Ridhwan now right? :D heheee...thank you teachers and therapists, you guys are the best!! ...but the part when he waswarded into the hospital for seizures...twice!! really stressed me up....what an experience it was, the first time warded I did stay together with ridhwan but with the help of my hubby of course as I was already 6 months pregnant at that time...but the 2nd time I just couldn't do it., with a sad heart I had to stay home and rest as I was already in my 3rd trimester and getting heavier and easily exhausted..and it was during ramadhan pulak tu...gosh...I don't think I'll ever forget spending my ramadhan and most of all breaking our fast in the ward nearly one week!! without fail my mom and dad would come before azan maghrib with the food and we'd all gather around the small coffee table to hear the azan from the tv to break fast....if i were an outsider, I would think it would be such a heart wrenching view to see a family having to break fast in a ward at a time when it should be done in the comfort of the home kan...but Allah is great, Allah have gave each and everyone one of us much strength to endure the moment, especially Ridhwan who was the one who was going through a real hard time...sian my darling son....but it was a time that I will never forget and also am really, really grateful for having such wonderful parents whom without fail came to break fast in the hospital with us and to be with their grandson....my tears are running down while typing this thinking of their sacrifice for us all this while....thank you mama and ayah...Allah sahaja yang dapat balas segala yang mama and ayah have done for us...may Allah panjangkan umur, murahkan rezeki and berikan kesihatan yang baik pada mama and ayah...amin...amin....

Well, enough sad stories....cause with all that has happen Alhamdulillah I have delivered a beautiful healthy normal baby boy on the 15th of October 2010 at 12.44 am on a Friday morning...what was suppose to be a normal deliver suddenly turned caesar...yes, sad to say...but as they say, what matters is that baby is fine kan...and so I am officially then, a mother of TWO!! Two boys lagi! Heeheee...since I had to do an emergency caesar, I must say it was a scarry first experience but alhamdulillah again, seeing my gynae and especially seeing Dr Sofiah was there in the operating room, reaally, reaallly made me calmer...everything went so fast after they decided they had to do an emergency caesar on me coz of high blood pressure and baby refused to come down after even 12 hours of induction, that I didn't even have to time to talk to my hubby how I am feeling, that the next thing I know I am being wheeled into the OT already!!....but when I saw Dr Sofiah, I really felt...legaaa...yes, that's the best word to describe it...heheee...and thank you again Dr Sofiah cause it seems you called Dr. Taayah in the middle of that night to ask her to pray for my safe delivery rupanya yea...heheee....I am soooo touched...thank you Dr!!! Terharu when I heard that, when Dr Taayah told my dad....And for that, I am so blessed and grateful to meet such wonderful people like you Dr Sofiah and Dr Taayah, you both are truly inspiring, kind hearted and dedicated people in your work...never have I met such passionate people who are doing their best in their work and for the benefit of the many special needs children out there...may Allah bless both of you always...amin..amin...

Well, that's about a summary or should I say a looong summary of what happened during my pregnancy with Ashraf....my dear Ashraf....not once have I regretted the 'sudden' pregnancy I had with you...it wasn't really a planned one, I must say, but it has always been hoped...and my dear Ashraf you are a true blessing and joy to all of us now and mama loves you with all my heart....may you always be a soleh son and hopefully be a good brother and best friend to your wonderful big brother Ridhwan.....Insya-Allah...

My darling baby on his first day in our world...

Safe and sound at home in his cot...

Abang Ridhwan looking at his baby brother, such a good abang he is...

Special pose from Ashraf!

My baby boy...and other stories to tell...

Gosh, how time flies so fast and I have been soooooo lazy to update, even surfing other blogs or updating facebook or even checking mails is something I rarely do these days..yes, one child you can still do other things but when you have two! Oh, no joke man, it so happen I woke up quite early today and felt 'rajin' that I decided to update my blog which I've left for months already...Now that I have Ridhwan AND Ashraf, I slowly notice that I have less free time for myself..especially in the mornings....I think also maybe cause I am not working that my time is taken taking care of them and most of all ENTERTAINING them! hahhaaa..oh well, that's the joy of being a mother ya ;) No one can beat this job!

Anyway, my darling baby boy Muhammad Ashraf is 5 months already! Gosh, time does fly really fast these days...and as it is I am cracking my head again what games I should start with Ashraf as I did with Ridhwan during his Shichida days. Even Dr. Sofiah also told me to apply what I have learned before in Shichida to Ashraf. Insya-Allah ya Ashraf, mama do the games and activities that I learned before and umm..try to recall what they were too!! The mind has been a bit blur lah these days..maybe cause its more of do, do and do activity with me without much thinking....

Well, enough said, I plan..yes plan...plan to update a lot in the next few...days? weeks? months? god knows when i'll next update but as requested by some of my friends, I will try to update about Ridhwan and Ashraf...and maybe about me too...hehee...but so far, It'll be about Ridhwan's progress in WQ Park, alhamdulillah he is doing well...then there was the one time show of Wanita Hari Ini in WQ Park! ;) ridhwan was the star in it! wohooo! ....oh of course Ashraf's birth....and then there is my craze with korean dramas and songs lak lately...sigh, heehee...and so forth updates of our life....so will try my best to update ya ;) For now, I'll post some pics of ashraf and ridhwan here....see ya all again soon!

My darling baby boy Ashraf...mmmuaacckkss!!

My number one hero, Ridhwan dear...mmmuaackkksss too!!

Delivered yet? Nope...heheee

Yes I am now in my most lazy mood to update anything in this blog...hehee...anyway, have not delivered my beautiful baby yet...am nearing my due date already...if baby doesn't pop out yet then gynae says to induce which is set to be this 14th ...so if there is no news from me, you'd all know that on 14th I'll be in the hospital by then...do pray for a speedy, safe and smooth delivery for me ya my friends and may baby be a healthy, perfect and most of all soleh/solehah person...amin....

To all muslims, A Happy Eid to all!

So many things to share but so little time..

Yes, I've promised to update on a lot of things ya but so many things have happened and are happening at the same time that I don't know which stories to tell...hehee...

Anyway, was suppose to tell about Ridhwan's seizures episode and he was warded in July right...well, so much for that update, he was warded again before 'Merdeka' due to pneumonia, but Alhamdulillah we only stayed until Merdeka day, though this time my health was not at its best as since I was taking care of Ridhwan with his cough and sneezing, not knowing it was pneumonia, but mother's instinct felt it might be...anyway, I contracted the flu too! Gosh, once again I was sick again...how depressing it was for me..this has been a very hard pregnancy for me..in terms of dugaan and health wise lah...but met the gynae got some medications, eventhough I really didn't want any but thinking Ridhwan has pneumonia, what do I have then?? Fear of that led me to think, better take some than nothing at all for the sake of me and baby.... So i took some with a sad heart but now feelin much better....so because of my health, first time in my life I did not sleep in the ward with Ridhwan!! Huwaaaa! That depressed me too because never have I not been with him when he is in pain or sick.. But hubby stayed for all those 6 nights in the ward and that I saw what a truly lucky wife I am to have married such a loving and dedicated husband cum father...and his perseverance and patience has made me love him even more...I am truly blessed....Alhamdulillah....so, now Alhamdulillah we are back home safe and sound...preparing and waiting for Raya...my Ramadhan? sad to say, many ibadahs were put on hold due to the trips to hospitals and my health...sob...sob...but all I can do is pray hard that even small or not much ibadah that have been done during this Ramadhan is accepted and blessed by Allah...amin...Insya-Allah...

Ridhwan's birthday in June? Nantilah update yea..that would take one post to tell! ;) Heheee...in short, Ridhwan had fun, the kids had fun, the teachers had headaches to stop them from playing the toys in their goody bags, my fault also! Hahaahaa..but it was a really nice small party that I've always wanted for my dear son....

Happy 7th Anniversary to me and hubby! Yes, alhamdulillah, it is our 7th anniversary already....gosh how time flies so fast yea...in 3 years time, masuk 10!! Wow! I am so blessed to have married a wonderful man...such patience...such love and care is seen in him with each passing day...May Allah give berkah and rahmah to our marriage today and tomorrow and years to come, Insya-Allah...I love you abang!! May we both be soleh and solehah husband and wife and be strong as one in whatever we shall face in future and at present...amin...

Next, would be my....delivery???!! I am now counting weeks...can't believe it I am now in my 8th month..ending of 8th month lagi..baby alhamdulillah has been growing fine...fear...yes, as many blogs I have read, once you had a special needs child, the fear is there for the 2nd one or future...but I have faith in Allah and I believe at the end of the day, Allah knows best what to give us isn't it...so may Allah give me a sihat, sempurna and soleh baby..amin ....amin...and thank you Allah so much for giving me a 2nd chance to be able to be a mother to another child...my darling 2nd one is really a rezeki from Allah that I can never thank enough...do pray for a safe and quick delivery for me ya....will tell when 2nd one is here....

Well, that's about it for now....many things to tell but time is constraint now....for all muslims out there, Selamat Hari Raya Aidilfitri and Maaf Zahir dan Batin! Have a safe journey to wherever you're going before, during and after raya, have a nice raya too, enjoy the food, hehee..I will...and especially the company of your family and friends...we never know when a family may leave us forever, so take this time to seek forgiveness from them and enjoy their presence right now....take care everyone! Ikhlas from me, hubby and Ridhwan!! Salam Aidilfitri to all!!

Overdue updates...update #1

Yello! Eh I mean, Hello! Hehee...yup, am actually blogging again...should be doing other things like sorting out baby stuff but thought, of well, might as well update again since I promised I will...or not god knows when I'll update again..after I deliver?? Hahaha...

1st update would be - Ridhwan's school! Yes, alhamdulillah Ridhwan has finally entered into a school cum kindergarten now. Its been nearly 3 months now, we started him mid May and tomorrow would be his 1st re-assesment with our neuro paed, teachers and therapists to see how far has he progressed and what would be the next step.

Ridhwan in his very first class...its circle time..one of his favourite activity...now they have moreee chidlren..moreee headache also..heehe...ganbatte ya teachers and therapists! ;)

Another picture....Ridhwan on Aini, his long time speech therapists..I like the classrooms, very colourful!

Physically I would say he is getting better. As it is he now has a new AFO called a dynamic AFO. AFO is a special splint or shoe made out of special plastic polypro..pene..something lah, sorrylah forgot all my chemistry already...haha..anyway, its this special plastic that you mould and shape according to the patients feet so the patient can walk or stand better. In Ridhwan's case it is to ensure that his left feet is placed down properly instead of being in a ballerina gait as our dear Sarjit, physiotherapist would call it. Or easier said, so he won't tip toe when he walks. If not for the left feet always wanting to tip toe when he stands, he would be walking quite well right now, I should think. Cause for the right foot, it was just like a miracle it suddenly straighten itself and was placed nicely flat when he stood up. Oh how I remember the tears of joy coming down my cheeks when out of the blue his feet did that. But, before that, it was a lot and a lot and a lot of massages done on both foot. Sooo, I'm still hoping for that 2nd miracle on his left foot, where one day it too will placed nicely flat on the floor when he walks one day...amin...Insya-Allah...but for now, we'll use the dynamic AFO and hopefully that will help him reach that goal...Insya-Allah...

Ever since he joined the EIP, he has been made to walk so much more compared to at home...yes, sad to say, this mother who became pregnant has reached a stage where her energy and enthusiasm went down the drain and was too tired to do exercises and massages on Ridhwan in her 1st trimester and god knows, how it affected me and Ridhwan emotionally...but Allah is great, He has granted my prayers and Ridhwan got a place in the EIP at WQ Park and now in the morning for 5 times a week he is doing lots of walking exercises. He now enjoys walking, always saying "Mama...nak walk!"...and on top of that, when I hold his hand to help him walk and it is sooo much easier as he is putting weight on himself and not depending on us to pull him and hold his weight...alhamdulillah..alhamdulillah...but the goal to walking is still far ahead...but soon Insya-Allah...I have faith in that...we all have to actually....I realise or actually know this but need to remind this to myself again and again...that with a special needs child we so need to repeat..repeat...and repeat what we do...I now can understand why Glenn Doman in his book says do 50 times a day, and when I read that last time, I said to myself "Are u nuts??"..but the truth is, he's right! If a normal child needs maybe 10 times to actually learn ABC...a special needs child may actually need 100 times to actually register ABC in his/her brain...so I do believe and have seen for myself that special needs children DO need repetition on a daily basis...then again, we are all only human, as much as I am not working and now heavily pregnant, there are times the lazy bug sets in and instead of doing 20 times, I'd do 10 times instead...which saddens me and frustrates me a lot at times....but on and off, I think we special needs parents need to be motivated and remind ourselves that repetition is good and essential for our children kan...may Allah gives all special needs parents out there strength, wisdom and perseverance to give our children their needed therapy and also fun and joy at the same time ;) Insya-Allah...

Okay, next progress of Ridhwan in his EIP is his social skill...Alhamdulillah, he now has better eye contact with other children his age and actually is not afraid being with them...god knows, ho many times he has cried when we went to see our friends and they have children his age and younger and he'd go into a frenzy cry whenever they scream or cry...gosh....but now, Alhamdulillah sangat2x, he is so much better...all the screaming and crying by his classmates are immuned to him...hehee...and not only that, even his neuro paed acknowledges that he is interacting more with her and wants to communicate more. Last time, Ridhwan would even refuse to look at his neuro paed but instead smile and acknowledge our neuro paed's nurses instead! Hahhaaa....So she said, she can see that changes in Ridhwan...alhamdulillah...

Intellectual wise, he is learning better....I've always known deep down in my heart, he is a smart one and he is...cause I remember reading books after books to him before I was pregnant and before we entered him into the EIP, and one fine day he actually was repeating the pictures on each pages of book! All I did was showed him the picture and he said it out loud with no pelat whatsoever and pronouncing it correctly!! And then when Aziah our OT came to our house once last time to see what is his progress so far, he confidently read aloud each picture on each page to Aziah without any prompting by me or Aziah. Yeeaaah Ridhwan! So from then, I could see Ridhwan needs lots and lots of repetition, be it reading a book, playing puzzle, flashcards and basically anything lah...to see output, I so need to do extra extra input...now I can see how Shichida really works...at times I was thinking "What in the world are these people showing my kid..the same thing again and again, week after week..." ...when actually that is the key and method to enhance the child's brain to register what they have and need to learn and remember...so for that, I sooooo need to update Ridhwan's flashcards...I've been relying lots on the ones I buy aje lately...need to do more and more and more!!! Insya-Allah...

In the area of hand function and manipulation, Ridhwan still needs a lot of help and that I feel sad I can only do so much as I find it difficult sitting in his small chair and table and bending to assist him to hold something or even pencil...but Alhamdulillah lah, they are doing that in the EIP..but as I said, truthfully, depending on EIP or regular visits to therapists at hospitals is so not enough for Ridhwan or special needs child in my humble opinion..at the end of the day, the mother, father or even grandparents do need to play a role in enforcing what has been learned in school/therapy session so the child can enforce the knowledge he learns...I now see why Glenn Doman and Nury too emphasises sangat2x on the parents role in educating their special needs children...where parents do need to back up each other and support each other in hope to achieve their goals and desires...no one parent only should do this task...I'm thankful that hubby helps as much as he can eventhough sometimes work and travelling discourages him to do as much as he wants to...but he is there for all Ridhwan's follow up check up and he is there when I ask him to do certain exercises or help me with doing flashcards and that really makes me love him even more...I always tell my friends who have special needs children to try to make their husband be a part of your child's therapy and education as much as you can, cause truthfully, why bear the burden all by yourself isn't it...and also when the father is involved together, it makes the learning experience for the child even more joyful and fulfilling as he/she sees how both his parents love him and appreciates him by doing the activity together with him..at least that is what I see in Ridhwan lah..the smile and laughter he gives out when both me and hubby performs the exercises and teaching process together...when even sometimes we'd even play different musical instruments, hubby play the guitar, I bang something like the bongo or xylophone and we'd give the maracas or castanet for him to play..and after that he'd smile and clap with such joy that you can't help feeling proud that he has reached this far, maybe not much to some, but at least I know he is happy and he knows he is very much loved by his parents..he sure is!!

So, I hope this EIP will prepare him to go to school one fine day...be able to be independent, walk soon, be able to write soon and be a good student...to all the therapists and teachers in WQ Park, thank you for accepting Ridhwan in your class especially to Dr Sofiah and Dr Taayah, without them, I don't know what I'd do or where to bring Ridhwan to learn more and become better...and thank you for being patient to teach him all that you can though I know at the end of the day, I too myself must play a very important role to enhance and enforce what he has learned in school so he will be the best he can be...Insya-Allah...

The entrance to Dr. Sofiah's clinic/room...now it doesn't look like this...they made it into play and break time area with tables and chairs to have their break cum makan time!!

Another view of the 'old' play area

Updates..updates...

Assalamualaikum and Hi everyone...yes, I haven't been updating my blog in aaaages....the lazy bug has really hit me these days...i do look and read other blogs but to write in my blog is really hard...hahahaa...soooo lazy...maybe cause I'm nearing 8 months already and ever since 3rd trimester came, the lazy feeling and exhaustion feeling is really sinking in...so happen today I didn't send Ridhwan to his school and stayed home to clean baby cum guest room...well decided to blog a bit....cause god knows when I'll blog again after this...hahaha...lazy..lazy...

Anyway, from my last posting..Alhamdulillah we are sending Ridhwan to the EIP in WQ Park already. Nearly 3 months now. Alhamdulillah too he is progressing, especially socially. Its good to see him mixing around with children his age. He is still not exactly communicating with them much but at least he is at ease with having children his age around him which he was definitely not last time. The screaming and crying from them too is nothing to him anymore, unlike last time, the crying of another child will cause him to cry along...ayoooo....Besides that, he loves the hydrotherapy that they have every week, though haven't done it for some time ever since he came out from the hospital...oh yes, that's another update....Oh Ridhwan also had his 1st birthday bash with children his age at WQ Park in June! Yes, my darling is now 5 years alhamdulillah. Thank you Allah for giving me and hubby 5 wonderful years with Ridhwan..despite many ups and downs and many visits and stays in the hospital but all the time spend with him has been a real blessing and a joy to me and hubby...Thank you Allah! Anyway, basically I have 3 updates to post soon, Ridhwan's school, Ridhwan's party in school and Ridhwan being warded in SDMCSJ again for seizures...which sad to say not really getting better...ya Allah, give me strength and health in taking care of my child who has epilepsy and for myself with my darling baby in tummy...amin...

Here are some pics to summarise the events...

Ridhwan's 1st day in EIP at WQ Park, Aini speech therapy and Aziah OT is helping him to stand and walk. Go Ridhwan Go!!



Ridhwan's 5th birthday cake! He loves Elmo :D

Birthday boy clapping away waiting for the teachers to set up the room for his cake cutting ceremony..he was actually clapping in delight in this picture! Heehee...

Progress...and WQ Park??

Les poissons! Les Poissons! Don't ask me what this means but Ridhwan is always so thrilled whenever I play this song for him! :D This song was initially heard at Ridhwan's class in T-Mix. I quickly enjoyed the song and was moving to the beat...hehee...its a catchy children song in french. Eventhough I have no idea what it means, only that Poisson I think is a fish, I think...but Ridhwan loves it! And to see him laughing and smilling every time he hears that songs, really lights up my heart...also, it means that the songs that was played during his class last time leaves an impact in his brain and is actually remembered..and the nice fact is that, he can even sing the song with the correct melody and all with whatever lyrics that he remembers only lah, but hey, that's good enough for me as it is! In actual fact, he loves music, really loves music! He sometimes would even hum classical music that we played in the car whenever we go out, and sometimes he'd say 'eh silap!' cause he hummed the wrong tune! Hahahaa! And for that, I am so thankful to Allah, that his hearing is good, alhamdulillah...When he was younger, I remembered our paed was somewhat worried about his hearing that we did a hearing test but alhamdulillah he did okay in it, he passed it I think...well he should have I would think, as he can even hear when his father just comes from work when we are already upstairs...so his hearing alhamdulillah is good...alhamdulillah..

For that too, I guess that's why he learns faster with hearing, imitating and listening to sounds, words and all. His eye-sight is still a biiig question mark as he just hates to wear his glasses! Once on his eye, he'd throw it away like lightning! And to make him wear it again, ya Allah, Allah aje lah tahu betapa payahnya...but this little wrestling of making him wear the glasses is mostly due to his biggest problem that is sensory problem ..sigh...it is this sensory issue that is making him not wanting to wear a hat, his glasses, hold a pencil better and putting down his left foot so he may walk on his own eventually...Insya-Allah amin....but otherwise, I am still proud of this little boy and his progress despite not being able to walk yet...soon ya Ridhwan before adik comes out maybe? :D Amin...amin..Insya-Allah...may Allah perkenankan doa mama nie yea....

Music wise Ridhwan really can remember songs but as usual, whenever we 'test' him by asking him to sing the full song, he'd clam up..hmm..he just hates being tested, and for that, I too have a hard time wondering if he does know all the songs lyrics by hard or does he only know half of it...time will tell I hope, maybe one day he'd sing the whole Anuar Zain's song 'I'm the lucky one' all by himself ke kan...hahaa...ya, that is one of his favourite song! ;) Memilih gak cik abang nie....However, despite being musically inclined, this mother's heart is very much sejuk when he can actually sing dzikir, such as Sollatullah Salamullah...he loves to sing it, well not the whole dzikir of it but the main ones, which i also can only remember..hehee...and sometimes when I recite Asmaul Husna he does know the next name of Allah...and that really makes my heart smile and thankful to Allah that despite having physical disability, he remembers Allah and recites Allah's name and dzikir even when I don't prompt him...Alhamdulillah...

Though our paed always reminded us that despite he memorizes well that is not enough as he needs to be better in his comprehension, to express himself better in sentences and words which is very true..he has yet to make veeery long sentences as most normal children do...but I believe he will insya-Allah..and my last few months of worrying about Ridhwan's school has finally been sorted and Insya-Allah...last few weeks we have been making visits to a placed call WQ Park..initially we thought it was a new place that only has a hydrotherapy pool at its place, little did we know its a fully equipped rehab centre that caters not only for children but for adults too! And to make it even nicer, that place had a rehab dr and a paed too! Which then made me and hubby smiled and nearly laughed to ourselves as it is Ridhwan's own rehab doctor and neuro paed that have set up the place!! To think that our paed told us to go there and didn't mention that little fact that she is a consultant there...sabor je lah...but I understand why she did that cause she wouldn't want to mention it at the hospital as it would be conflict in work interest lah pulak..and also she said she wanted us to check the place out not because she is there but to see the place as it is and decide on our own...well, from our first impression, we were quite impressed with the layout of the building where they had different rooms for different discipline of therapies and it was really well designed and has an inviting look to it....

Anyway, my main reason of checking out the place was of course for the hydrotherapy thing as for years I have yet to find one where there is a dedicated physiotherapist that will be in the pool with Ridhwan and doing the exercises and not on my own as I have heard from some others who uses hydrotherapy pools elsewhere..so that is a plus point for me! Then, there was the EIP, yes an EIP that is being monitored and evaluated by a rehab doctor and a paed to suit your childs need, meaning doing speech therapy, occupational therapy and physiotherapy all in one place and including that, Ridhwan gets to attend a class and socialize! Now, that for me sounds really good!! And on top of that, I already knew the speech therapist and occupational therapist!! Well, which mother won't be delighted to be given those options to her isn't it ;) Also, the fact that Ridhwan was going to be left on his own without me, that makes me feel better, knowing I knew the people and Ridhwan is already used to them before...cause you see, all this 4 years of his life, from Shichida to Twiddlewink to T-mix and to all his therapies at the hospital, I have been by his side., never being alone..ada ke...cause even with me he does co-operate so yup, never left his side in all his classes and therapies..well, its time to let go...sob...sob...not entirely..but slowly....hmmm....so, as it is, he does need some socializing as he has stopped all those weekend classes already, and I want him to learn to be independent at the same time and being able to do all the main therapy that needs at only one place...well, this place sounds like the best so far....so far lah kan, Insya-Allah...

Anyway, only next week Ridhwan will start his so-called 'class' or Early Intervention Program (EIP) but so far I am satisfied with the fact that it will suit Ridhwan's current progress and will acommodate Ridhwan's progress in the future..and being backed up by our rehab doctor and neuro paed makes it even better lah kan! ;) For a long time I have been searching for a good EIP centre that has all the main therapies Ridhwan needs and a school for him to go to at the same time, and Insya-Allah I hope I have found one..as it is he is already going to be 5 next month, this is something that I really need to worry about as it has been on mind so much especially since I was pregnant and knowing my limitations of places to go with my condition did make me a but upset last time, also next year dah 6 years old!! Then its schooling age...hmmm....so, good luck to my son, you can do it sayang! Mama hopes you enjoy the classes and activities there! And may they take good care of you there ya! This is what happens when a mother who has been taking care of her son all by herself feels at times like this...hard to let go...sob..sob..but I have to, and I know he'll be fine..amin...Insya-Allah...

Hmm...okay ke tempat nie mama? ..

At the front of WQ Park...can you see ridhwan in his stroller in this picture? hehee...he is next to the cafe....yes, I checked that out too! ;) hahahaa

The main entrance of WQ Park..it has a ramp for wheelchair! Bagus..bagus...

Happy Birthday and a time off for this mama...

The cake cutting ceremony...

At last a time off for me..me! me! me! Heehee...ever since I got pregnant I haven't really had the chance for a me time...not that I couldn't, well 1st three months was more of vomitting and nausea time isn't it, so now at 4 months, with feeling better with energy getting back to near normal, I can at least say, yes I can go out and have some time off with my girls. And so I did!

For someone who is not working, most people think that you'd have more time for yourself right...riiiight..what rubbish that is...oops, sorry for the language...but truthfully, you hardly have time for yourself cause most of the time is for you child...taking care of him, feeding and what not...though I must say since pregnant, I am sort of getting some 'time off' as I can't carry Ridhwan anymore and I don't give him baths anymore, the father does it! yahoo!! Hehee...but truthfully, I soooo misss doing that, carrying him into the bath tub, getting myself wet more than him as he kick the water in the tub, then carrying him and putting on his clothes, his bedak-bedak as Ridhwan calls it and many other things too...but in a way, I definitely can't do all the carrying anymore, so I guess its a 'time off' for me..at least for the next 5 months that is...But most of all, I miss hugging him tightly and just turning around and around until my back can't bear his weight anymore and both of us getting dizzy at the same time...hahaaa...but its okay, all in a good cause isn't it ;)

So, after non-socializing for nearly 4 months with other people except my family and umm..therapists...hehee...ya, SDMC is the only place where I go socializing these days...hahaaa...sigh...sounds pathetic lah pulak yea...hmm..oh well, at least I don't just stay at home right...well, on 25th April, got to meet me favourtie gals for Loges birthday or more of belated. Happy Birthday Loges dear! Had a nice lunch with the gals and later watched a movie, sad one too ...sob..sob...all done in Liz's place. Thanks dear for allowing us to keep crashing into your apartment ya! ;) Next time my place lah pulak, ya? ya? heehee....It was a nice time for me as I get to sort of 'off' my mother and wife mode for a few hours and behave like school girls again...yup, when you've known people since school you can't help behaving like a school girl again even after meeting again and again after all those years...which to me is a real treat for me as, its not every month I get that treat of leaving the house for a few hours and sort of stop worrying about Ridhwan, which I have no compain actually but you know, when you are a housewife, it does feel nice once in a while to just socialize with other people who are not really in the same boat with you and hear their side of their story and life...

Anyway, it was a good weekend for me, a nice time off even for a few hours only...to the gals, I always look forward seeing each and everyone of you every time we meet up, love you gals to bits! And thanks so much for always being there for me, especially at hard times like recently ya, love yaaaa!! Friends forever!!!!

Part of the cake gone..and more will be gone!! Yummy delicious ice-cream cake!!

Some of the food we ate...

Guilt trip...

Hubby dearest is still away on work trip....bored of watching TV right now....Ridhwan is sound asleep as usual...so bored...so decided to blog then..heheee...hmmm, funny ya, bored only want to blog....anyway, since I'm feeling much better than 3 months ago..enegry wise back to nearly normal...sleepiness, only when too tired...nausea, comes and go....well..looking forward for the next few months, Insya-Allah...

As the heading says...guilt trip...oh i was heading towards the worse emotional breakdown I have ever had in my life...u see, I never really planned to have another one that soon..well I did tell myself that Ridhwan is going to be 5 this year, and I think that gap is quite big enough already between him and if there was going to be another sibling...but looking at his walking progress, I was worried...worried if I wouldn't be able to take him to therapy and all...I'll be concentrating more on the baby...well, those few days of these guilt trip then suddenly made me think....hmm, its near that time of the month...and yet, these emotional outbreaks is waaay different from normal....and then I thought, could I be pregnant??! Yup, instinct was right...I checked and I was!! I couldn't believe my eyes when I saw the results but then I was crying in tears of happiness thinking Allah is giving me another chance to be a mother again, and to me that is such a wonderful rezeki which secretly in my heart I wanted and alhamdulillah, the plan that I pictured in my mind only and even never expressed it to hubby is becoming a reality..Insya-Allah....

Well, so much for tears of happiness...then the tears of guilt came!! Woohoo!! The last 3 months was hard for me...not only because it was pregnancy 101 again....nearly 5 years is a long gap you know...you have forgotten about the hormonal changes in your body and your emotions! You forgot about the vomitting and nausea...you forgot also you can suddenly put your head on the dinner table and end up snoring away..while having dinner!! hahaha...yes. that happened to me!...then you forgot about the 'i can't smell that..it makes me want to....uweeeeek!!'...the running to the bathroom episodes...yup, the so-called 1st trimester ya ;) hahaha..

But what really got to me was the fact my energy was at it lowest...and the one thing that broke my heart so much was the fact that I couldn't carry Ridhwan anymore :( huwaaa.. that made me cry a lot...you see, despite having a maid, my mom's maid actually..yaya, still staying with parents :P ...the maid hardly touch Ridhwan..never actually! Everything to do with Ridhwan from bathing him, feeding him, playing with him, reading to him, therapy him...well almost everything was done by me...and since he has yet to put his left feet down and enable him to walk normaly...well, the walking is pretty much done by me with carrying him here and there....and to make matters worse...he sensed it...sob...sob...he suddenly realises his mother won't carry him when he cries in his cot..doesn't give him bath anymore cause was too weak and always wanting to throw up...doesn't bring him to the study room to play cum therapy him like usual...doesn't carry him and dance with him when we hear to our favourite songs....don't sing to him and have a conversation with him as much as before....gosh, just writting this makes me want to cry...sob...sob...I guess, taking care of him all these years by myself most of the time, really hit me how much I am so close to him and when he sense I don't do that anymore to him, he gets upset....cried a lot...head banging a lot...sigh...and to add upon it...with my hormones, I was crying away too most of the time...sigh....

Not only was that guilt trip heading towards depression of not being able to take care of your son as usual...then the guilt trip headed towards feeling guilty of not giving him his usual therapy as usual...no strength to stretch his legs as usual...no energy to show his flashcards....don't even feel like going to SDMC to bring him to therapy!! Oh yes...the last 3 months was really hard for me...that darn guilt trip...

However, alhamdulillah I am much much better now....hormones really can mess up your mind sometimes ya ;) heheee....but thinking back, I should have foreseen this actually, knowing that 1st trimester is never easy on any woman, be it a mother with a normal child and even with a special child like me..as hubby said to me, don't be so hard on myself...the months will pass by and I'll be 'normal' again..but then again, I guess it was my expectations that drove me to near depression last few months...wanting to therapy him and make him walk fast...worrying about which school to bring him and suddenly realising, yes i can drive him to a school but I can't carry him anymore!! ..Well, I should have expected these but somehow those hormones clouded my brain and crying and feeling sorry for oneself and Ridhwan was the main agenda last 3 months..oh the things we woman go through ya ;)

Well, Inysa-Allah and alhamdulillah I am not feeling guilty anymore, thank god for that...I tell myself, no ones prefect and yes, every mother want to give their best to their children and especially to a special need child...but Allah works in many way, there is a big hikmah somewhere I'm sure why after nearly 5 years only Allah gave me a rezeki again, and coincidently when I needed to do a surgery which is on hold now...that for me is a real big hikmah in itself...and also, maybe it is time to give Ridhwan a friend and to add my family :D and I have accepted that its not going to be an easy task juggling baby and my dear special son...but as I told myself once long ago when Ridhwan was in ICU..La Takhzan, La Takhaf, Innallah Ma'ana....Don't be sad, don't worry, Allah is with us...and girl, imprint this in that mind of yours!!! cause it is true isn't it...whatever happens it is in the will of Allah and we can and must pray so what the future holds for us, we will face it with redha, persevarance and as strong as we can...Insya-Allah...yup, I think I'm back...not going to be same though, as in physically...hehee...but no matter what, I shall give what I can to Ridhwan with whatever energy and strength I have...and may Allah always be with me and Ridhwan....and also to dear baby in tummy....wallahualam...

Oh, a dear friend, who I miss so much, sms this to me recently...and I'd like to share this with all the Supermoms with special children out there who is reading this entry...it made me cry a tear....but it made me smile too..

"...lagi salute ibu-ibu yang ada anak special sebab Allah sendiri yang mengiktiraf kehebatan ibu-ibu ini sebab kalau tak ibunya istimewa, taklah Allah beri anak-anak ini kepada mereka kan..."

The lazy bug is here....why?...

Hmm..I have been soooooo lazy to update these days..and I mean soooo lazy..all I've been doing is read other friends blog and that's it....to comment pun malassss...hehee...well....maybe its the hormone...or is it...hmm...dunno lah....all I know past 3 months have been difficult for me...oh yes...it was...with my high fever at one time and being nearly warded....oh my....the emotional downhill that was dragging me into the world of depression.....hmm....but Alhamdulillah, I think I am more of myself now..I think...hahaa...

Anyway, the reason being of me being extra emotional at times like this is....yes everyone...Ridhwan is gonna have a little adik soon! Alhamdulillah...after nearly 5 years, I am going to be a mother again...Insya-Allah...this was really not planned but for me this is the best rezeki Allah can ever give me....alhamdulillah..alhamdulillah....so that explains why my entry before this was about emotional downhill as that was what I was feeling last 3 months....mostly because maybe I wasn't prepared to deal with how am I going to give therapy to Ridhwan and even drive him to therapy..okay, maybe driving was not much an issue but the fact that my gynae had warned me that I couldn't carry him anymore...that broke my heart in two...but that is a fact isn't it..how can a pregnant lady be carrying a 20 kg boy around anymore...oh yes, he is already 20kg!!! ...so last 3months...probably being the first trimester for me...was quite the hardest for me....emotionally..physically..mentally...eveything lah...but Alhamdulillah..I am better now...and strength is slowly back..Insya-Allah I'll start giving his daily dose of therapy like before or as much as I can...I do have to face the fact that I am not as strong as before...but I try my best kan...amin..Insya-Allah...

So, no more lazing around mama Ridhwan..pick yourself up again girl!! Try to do as much as I can within these few months before i become more sarat...insya-Allah...and do pray for a safe and comfortable pregnancy for me ya everyone, amin, Insya-Allah....

Will update more soon! ;)

Emotional downhill....

Past few weeks have been very emotional...the once calm and most of the time compose me is now gone god knows where and doesn't seem to want to come back...sigh....partly, I know why I can't control these emotions because it is when I am in that condition...and for that, external factors which is directly and indirectly affecting my emotions is not helping me at all right now...its is just making these unstable emotions bursting out like lavas coming out from a volcano erupting with smokes and all.....sigh...

All I can do now is pray..and pray..and pray to Allah to please give me strength at times like this...please let me have some composure to deal with whatever I am dealing right now and in the future later cause truthfully...I really am feeling weak and helpless right now....I hate being like this!!! ....and darn it I am so craving for fettucinni carbornara right now!!! Hahahaa...okay, that's it this weekend I'm going to find one and eat it to my heart desires!! Muahahhahahaaaa......sigh...ya Allah, berilah kesabaran dan ketabahan yang tinggi kepadaku untuk mengharungi segalanya.....amin...

Of seizures...MIC-KEY tube...tactile, proprioception and vestibular...montessori (PART 2)

Okay...okay..so am veeery slow in updating my blog...hehee..sori about that...but these days, its hard for me to commit to my blog...oops, sori blog...anyway, as promised I will be updating about Ridhwan's MIC-KEY tube...and others....

Now, what is this MIC-KEY thingy is...well its just like the BARD PEG button Ridhwan had all this while except its a bit thicker and looks a bit scarry for me to change it...that I will tell later...but the surgeon mentions that its better as it can be changed frequently meaning hygiene wise would be better for the user...but money wise also a lot lah ;) ...hmmm..but for Ridhwan, I'd pay anything right!

A MIC-KEY* Low Profile feeding tube (MIC-KEY*) has been inserted into your stomach through the abdominal wall. There is an inflatable balloon at one end and an external base at the other. This tube allows the intake of food and water that your body requires. Your specialist has measured you to ensure that you have the right size MIC-KEY* feeding tube.

So, basically this is how the button looks like in Ridhwan's stomach. If u notice that sphere like plastic is actually called a balloon where the mother or preferably the surgeon right now may syringe out the water in it and take out the tube to put in a new one...now this part is the one that has been bothering my mind so much but since no need to change yet not too worried but eventually, I might have to do THAT all by myself...sigh....anyway, will take a picture of the MIC-KEY tube deflated ya. But all in all, I think taking care of this button or the feeding tubes is somewhat easier than the BARD button, so okaylah ya! Now all I need to do is teach Ridhwan to eat better and especially drink better too, so one day begone the tube or any tube for that matter in his stomach...amin...amin...

Okay, next to update is tactile, proprioception and vestibular...yup, recently or end of january we finally met our rehab doctor again after...ummm...4 months avoiding to see her..hehee...anyway, it was a nice visit to see her as usual, Dr. Tunku Taayah the rehab dr has always been one of my favourite doctors as she gave me hope...yes she did...when all other doctors gave me such negative hope about Ridhwan's progress, she was the one who smiled and told me..."I know what I say seems overwhelming for you..but do enjoy your child kay, no matter what happens, he is a lovely boy and enjoy him and love him with all that you have..." ...yup, she gave me hope that day when she said that when he was...umm..a few months old I think..as Ridhwan was initially introduced to Early Intervention Program in SJMC...you see at that time, the other doctors were..umm...concerned? concerned in a way telling you aaalllll the worse case scenario that Ridhwan may go through which did de-motivate me in one way or the other...just imagine your child was just 3 months old and they say his brain wasn't growing..then they say god knows if he will even sit and what not...if i had my way that time, I'd give a big whallop to all those awful doctors i met!! but, alhamdulillah Allah gave me patience and preseverance I couldn't care less with what those doctors predicted and gave my all to Ridhwan..eh Mariah Carey's song title!! Heehee...sidetracking....well, Dr.Taayah as happy as she always is with Ridhwan she did mention 3 areas that I have to put extra..extra...extra...aaaaand extra effort on Ridhwan...firstly is tactile...or touch..why can't this doctors use layman language aje kan, it means the same thing anyway, just use words we non-medical people understand lah kan, taak ni nak jugak guna ayat canggih, nasib baik rajin baca...hahahhaa...well, tactile here is needed a lot to Ridhwan's hands and feet as it is Ridhwan has yet to master the grasping of a pencil which funnily is, not that he is not able to hold his blocks...but repetition..yes the magic word, he needs or I need to repeatedly show him how to hold a pencil and how to use it...so eventually he can write!! amin...insya-Allah...so tactile exercise consists of tepung with water(OT Aziah taught me this), next tepung kanji with water, then finger playing with play doh, finger playing with finger painting with non-toxic paints, playing with grains and what not...and these needs to be done a lot..a lot...a lot...hmmm...

Next on the list, proprioception....as much as Ridhwan has already learn how to cruise and stand and the way to use the legs to step or walk...he has yet to learn to do it in a 'normal way' as his leg joints have yet to register itself on how to walk properly and of course there is the issue of gait in his left foot...I mean, ballerina gait or senang tip toe lah...interesting is kan, it seems many children these days, and I mean normal children seems to be walking tip-toeing...scarry kan, well I mean they can place their foot down nicely and yet when they walk they tend to tip-toe..hmm...brain issues? well Ridhwan only has left foot to worry about but still it affects his balance because of that...sooo...lots of massages for the left foot to ensure no tightness will occur..never! never! and for that lots of joints massages too...work baby work! heheee

And lastly, vestibular on my mind...vestibular I say? Vestibular = balancing...see, apa susah sangat cakap balance aje kan...hehee..never mind lah, that is what they learned in medicine studies anyway, so might as well use it when they are working now right ;) ...as it is Ridhwan's left foot is not placing very well, so he needs to learn balance to ensure that he can walk better when eventually his left foot can be placed well...so balance exercises here we go! Bought a balancing board recently and hoping it will help him with his balance and also, we thought we might was as well start again some techniques of glen doman that we learned last time for his balancing, such as pitching and what not..gosh I can't remember the names...

Well, three main issues to overcome...as a mother, this sometimes overwhelms me...one would thought after all these years, its easier to absorb or deal with...but surprisingly it gets harder for me..maybe as I see he is already reaching 5 years old and I really need to be concern with his development even more...but all I can say and do is try my best...give him the best and most of all...pray for the best...amin..Insya-Allah...

So do pray for me everyone that I will be sane most of the time...hahahaa....and most of all have the preservarance to give the best to Ridhwan and be patient in all our endavour...Insya-Allah...amin...

Jiey, about montessori next post yea, sorry lambat sangat yea dear..want to take the pictures for you the items I bought ;) but this is the website anyway...

http://www.bambini-montessori.com

Of seizures...MIC-KEY tube...tactile, proprioception and vestibular...montessori (PART 1)

Hmm...so much for blogging again..the oh so lazy bug is so getting to me these days..somehow I'd rather read other peoples blog instead of writting in mine...sigh...the lazy bug is definitely here...anyway, after thinking that a dear mother has requested I gave her the website to buy some montessori products..which I should have given her loooong time ago...sorry yea Jiey, baru teringat :P I decide, I think I'll blog about it then...buuut, before I get to montessori, there are few updates about Ridhwan I'd like to share with you..oh and maybe my own update...umm...maybe not...oh well, we'll see..heheee

Okay, first thing first...seizures...yes, Ridhwan has been having seizures on and off again...sigh...partly due to this also, I think I've been a bit down...lazy to write and in a no mood to tell anyone how I feel or how upset I was...yes, was....not that I'm on top of the world now...but its slowly sinking into my brain...again...that his seizures will come and go...this time his seizures has gone back to myclonic....sigh...the one that was so hard to go away has returned!! You see, there are many types of seizures...yes, one would think when one says that person has a seizure it would be the one where you see the person falls down on the floor and starts trembling badly and bubbles comes out of the mouth right? Well, no, there seems to be many more and actually the one I just described is called generalized seizure and happens to be one of the safest seizure to happen to a person, so they say..what?? safe? my foot lah safe...oops, sori for the languange....hehee...safe in terms eventually the seizure will go away when the person gets older and doesn't really affect the brain as bad as some others do....hmmm..anyway, last year we had done 2 EEG and the neuro paed saw that the seizures are still there..and still a lot...however, the myclonic is here again and he's gettin it nearly every week :( ...sooo, its back to the drawing board for the neuro paed, lets play, which meds work together!! Okay, sorry being a bit sarcastic there I think, but a mother can 't help feeling helpless whenever she thinks that the seizures are coming again and the one dreaded one pulak tu...oh ya, what is myclonic seizures?

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.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

• Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
• Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
• Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

Ridhwan usually gets this when he wakes up...soo, whenever we are all sleeping soundly and suddenly I hear a sob from him, yes, Ridhwan's mama is a a very light sleeper, easily awakes from any sounds...and that scares me too sometimes...hahaha..anyway, when you hear him sob, wake up! Ridhwan is having one..and he cries...yes he cries...and that everyone is where I get very weak and feeling helpless as I know he is having a seizure and he is very upset about it...And not only that, there is this thing called Aura which our neuro paed mention that people with epilepsy gets before a seizure attack...and Ridhwan's aura....well...not something I am dealing well with lately...he bangs his head...yes, he usually bangs his head with his hands or fist and if that doesn't make him feel better....he sometimes...he bangs his head to the cot...huwaaaa!! ...though, I do stop him from doing that ost of the time, but truthfully onc can't help feeling helpless in that situation...memang sabar itu satu separuh dari iman when this happens...wallahualam...So, all in all, it has been an emotional roller coaster for me these few months but we have once gotten through this, and we shall Ridhwan! We shall fine one day the right dosage and combination again as we have found when you were two, that I know I am not giving up on and I know very well our neuro paed to is determine to find..Insya-Allah..amin...

Okay, NEEEXT! Heehee...can't help forgetting my maths teacher in Form 2, who would scream loudly the word 'next' for the next student to answer from the maths textbook on the blackboard...god, she was one scarry teacher!!...hehee...good old days...anyway...as I was a bit unwell last few months, I have been putting off a very important appoinment with Ridhwan's surgeon...also maybe of fear of going to the OT(Operating theatre) again..well not me, but Ridhwan actually..well, been there again, done that again and so Ridhwan has a new gastrostomy tube called MIC-KEY! Nooo, it does not look like mickey mouse and has no relation whatsoever with Mickey mouse :P but that's what it is called...what it means, can't remember..but one thing for sure it is soooo different from the BARD PEG tube Ridhan was usuing for nearly 3 years already...the procedure to change from BARD to MIC-KEY alhamdulillah was a fast one, around 40-45 minutes but all the time I was in the waiting room waiting for Ridhwan to go into the OT nearly cause me some sort of panic attack...don't ask my why I am behaving like that these days, I seem to have those feeling these days...wake up Reenaz!! ...where was I? Ah yes, so after waiting in the waiting room, okay it wasn't a room, more of like an area as there were many beds in there for other patients as that is the so-called Day Care Surgery of SDMC(formerly known as SJMC). So, waited for an hour and then it was time. Nooow, this time it was sort of cool, why cool? No, the procedure wasn't cool but the fact the anaesthatist...umm, is that how you spell that word, well, this doctor told me to ensure the child doesn't panic and feels too upset, she is asking me the mother, to dress in some OT gown or something and come into the OT to help the doctor and nurse when they make Ridhwan use the gas to konk him up and also insert the granula/IV line later....really? me get to go and see the OT???!! Cool!! yes, that was the only cool part about it lah kan...so, alhamdulillah Ridhwan didn't really resist while they made him wear the gas..but then there I stood looking at Ridhwan sleeping soundly and didn't budge at all to go out of the OT...yes, I was secretly hoping they'd forget about me and start changing his tube while I'm there! Ya right! Dream on lah ya! Haahaaa..so then the anaesthatist saw me standing like a pole there and said, "Mama nak kiss Ridhwan sebelum pergi ke.." ..oooh my mouth wanted so much to just reply, "Kiss aje? Stay and watch leh?" ..Haaahaaahaaa....and so with a heavy heart, I kissed Ridhwan's forehead and left...praying along the way out of the OT....but alhamdulillah everything went fine and now he has a new clean tube to feed him his milk...

Okay, this post is getting a bit long...will write more about this MIC-KEY in another entry...which really made my heart fell to the ground ..why? Later ya ;)

Entry part 2 will follow soon..how soon...entah...hahahaa..Insya-Allah soon..time to give Ridhwan his milk anyway....

Welcome Hijrah 1431 and the year 2010!!

Welcome to the new year everybody!! I can't believe it, its like a blink of an eye and a year has just past by before my eyes...wow! Makes me wonder if I've covered and completed all my resolutions last year..resolutions? what resolutions? hahaha....

Anyway, I pray that this year Insya-Allah will be a good year for me and especially for Ridhwan. Ridhwan this year, Insya-Allah will be 5 years old! And that makes only 2 more years before school starts and that is so freaking me out!! It really clicked me about this fact when I saw in the news about the children in Standard 1 starting their school life tomorrrow around the country..and that made me really think...darn it, have I done enough for Ridhwan to be able to go to school??? Hmm..ponder ....ponder...

Well...before I ponder more about that, I've been very quiet in the blogging world as I myself have not been too well ever since after Aidilfitri. Don't worry I'm okay now, sort of. Though the few episodes where I am not too well recently made me really think and scared me as I could not help thinking if I was not around, who will take care of my little boy? ....and that...made me cry a river one fine day....it still lingers in my mind to this day this question...as a matter of fact I've even read it in a blog once this question posed to the blogger herself about her being a mother to a special needs child and if anything were to happen to her, what would be the future of her child....and this question came into my mind even more when I was not too well a few months ago...so, this comes to my first resolution then, to ensure that I will be there for Ridhwan as long as I can until he grows up to be a man that he can be proud of, yes, he has to be proud of himself first with all the achievements he will achieve for then all of us will be proud of him too! Insya-Allah....and so, for that to happen, I need to make sure I take care of my own health so Ridhwan will have a wonderful life and future one day...amin..amin...Insya-Allah..

Last few months have not been too easy for me with that health issue thingy that I started giving up blogging and have become a silent reader to other blogs for quite some time...but then, I realise, its not going to help by keeping quiet and I find, sharing my thoughts and hope here with friends and moreover other special needs parents give me strength and hope in ways I can't imagine actually...so here I am, back again blogging away hopefully...I gues s hearing some alarming news and knowing that I was not too well recently really took a blow on me felt that I didn't want to blog anymore..but then, that made me think, how weak I was to let that affect me when I have gone through even worse times with Ridhwan when he was just a newborn, when he had a PEG-tube in his stomach, my so called juggling masters and taking care of him and not forgetting one of the worse seizures attack for Ridhwan right after raya in 2008...sooo, wake up girl! stop feeling sorry for yourself and look in front of you! There's a cute 4 year old staring at you in the face eager to get as much knowledge as he can and eager to learn new things, physically and mentally! With that in mind and thought, I hope I will go through this new year, with a stronger determination and perseverance and most of all patience to give what's best for Ridhwan insya-Allah...

I guess when i think back, throughout these last few years, I have to admit, I never had anyone to really share my concerns and hopes for Ridhwan but just to doctors and therapists, most of all Sarjit...hehee...yes, this wonderful woman called Sarjit is someone I totally admire and have come to love for her love, affection and most of all passion to treat special needs children without any complain....anyway, now, when I see some mothers out there with special needs children like me gathering and sharing with one another, I really admire and thought, heck I should join them too! Probably I've been so use to being by myself, it never really came to my mind that I do need to have a support group too which I never really had for the last 3 years of Ridhwan's life...its good actually to have a support group such as this as who else would understand and be there for you if not for these great mothers out there with wonderful special needs children who are working hard to give what's best for their child....which made me quite upset too yesterday as I missed out on a great gathering by these wonderful parents of special needs children and on top of that, they even placed a pic of Ridhwan on the cake they had yesterday!! Huwaaaa!!! Terkilannya!!!...oh well, as they say, dah takda rezeki, ada lah hikmahnya kot...which ada actually..some pain came back..which I'd probably tell in another entry...or maybe not..I'll think about this later...hehee..the suspens ya ;) ....

This is a picture of the beautiful cake with beautiful children..including mine...hehee...which really made me upset yesterday that I couldn't attend the gathering but family was something I had to think first here..and there was some health issue that came back which made me not feasible to travel much too yesterday..but I was still terkilan that I couldn't go and meet these wonderul parents...hmmm...


Picture taken from yongnoina.blogspot.com ..hope u don't mind yea dear...

My prayers are for all these wonderful children and especially the parents to be always strong and give the best they can give despite sometimes being depressed or unsure or anxious or giving up which are feelings I have always had that comes and go once in a while that drives me mad!! Yes, after all, we are all human isn't it....but these feelings are good sometimes as it makes us realise that we need to wake up and stand tall again after all those emotions is thrown away and make our child our priority with the addition of our doa to the almighty..and not forgetting, therapy, therapy and therapy...no such word as lazy and giving up in our vocab ya...trust me, I go through these much too often these days...sigh....but, as I mentioned earlier, we are all only human and we try lah Insya-Allah to give our best to our child ya ;) This is actually a pep talk for my ownself too..hahahaa...hmmm...

So, my hope this year then is to be a good mother who never gives up to give her best to Ridhwan with the help of the doctors, therapists, family and friends Insya-Allah...and also to be healthier too as a a good example to my child as children does take after their parents don't then...hmmm....and also to be a good daughter....a good wife to my wonderful husband...and most of all, be a good muslimah ;) Insya-Allah...as they say, one can plan so much yet the Almighty decides what's best for you...which many times I have discovered directly or indirectly to be very true...wallahualam....as to my darling son Ridhwan, Mama is sorry if there were times I seem lost and unsure of myself the past few months, but that doesn't mean I've given up or have stopped worrying about you, it has actually made me think more about you and me...and for that, lets start this new year together as best as can be and may Allah always bless you my dear son and be with us always in all our future great endeavours..Insya-Allah.....welcome new year!!!

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....