Monday, October 11, 2010
Delivered yet? Nope...heheee
Posted by Mamapinkie at 11:07 AM 0 comments
Tuesday, September 07, 2010
So many things to share but so little time..
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!!
Posted by Mamapinkie at 10:41 PM 0 comments
Wednesday, August 18, 2010
Overdue updates...update #1
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!
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...
Posted by Mamapinkie at 11:09 AM 1 comments
Tuesday, August 10, 2010
Updates..updates...
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...
Posted by Mamapinkie at 11:12 AM 0 comments
Friday, May 07, 2010
Progress...and WQ Park??
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...
Posted by Mamapinkie at 3:38 PM 3 comments
Happy Birthday and a time off for this mama...
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!!!!
Posted by Mamapinkie at 2:51 PM 0 comments
Thursday, April 15, 2010
Guilt trip...
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..."
Posted by Mamapinkie at 10:52 PM 2 comments
Tuesday, April 13, 2010
The lazy bug is here....why?...
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! ;)
Posted by Mamapinkie at 5:30 PM 3 comments
Thursday, March 18, 2010
Emotional downhill....
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...
Posted by Mamapinkie at 2:28 PM 3 comments
Wednesday, February 03, 2010
Of seizures...MIC-KEY tube...tactile, proprioception and vestibular...montessori (PART 2)
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
Posted by Mamapinkie at 5:23 PM 1 comments
Tuesday, January 26, 2010
Of seizures...MIC-KEY tube...tactile, proprioception and vestibular...montessori (PART 1)
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....
Posted by Mamapinkie at 5:18 PM 2 comments
Sunday, January 03, 2010
Welcome Hijrah 1431 and the year 2010!!
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!!!
Posted by Mamapinkie at 10:40 PM 2 comments