Today we went to our...umm..once it was weekly, then it was, monthly, then it was bi-monthly and then we had weekly again..and then tri-monthly...and so this was our tri-monthly follow up check up with our neuro paed...yes, there was a time, I saw our paed nearly every week and it was really painful for me cause his fits was getting no where...but alhamdulillah, after his last fits episode last year, everything was normal...amin....
Sooo, today we met Ridhwan's very dedicated neuro paed, and alhamdulillah this time my hubby could come along, there were many times our visit there was with me and my mom only...so it was really nice to have my hubby come along and hear what our neuro paed has to say about Ridhwan's progres...alhamdulillah, she was happy that Ridhwan can actually walk if he wants too...no botox please!! ...yes, botox everyone...my son was given the option to inject himself with some botox to help straighten his foot because he was tip-toeing or as our therapist calls it, ballerina gaits....i thinks that's how you spell that word....anyway, Ridhwan has always had what they call, sensory problem...sensory here deals with how ridhwan feels towards certain things...or in short...his touch sensors...its very sensitive! Due to that, he doesn't like to touch my hand that much or even allow himself to be touched at his hand...body somehow okay pulak..and he is very sensitive on his feets...and because of that, his brain, as what dr and therapist have been telling me, sends message to his brain the feeling of uneasiness when he feels things on his hand and his feet...so that comes the so called ballerina gait or in layman terms, tip toeing....I have actually seen a young boy tip toeing in his shoes in one mall, walking tip toeing on the escalator..i was amazed as I knew Ridhwan too doesn't want his feet fall flat on the floor and has the problem of allowing us to straighthen the foot at times...so seeing the boy being able to walk with tip toe really startled and amazed me...but I know, that is not an option for Ridhwan and he really needs to learn how to walk properly and by addressing that issue, we would be addressing his sensory issues...
So back to the word, botox....yup...botolineum something something right...most of us would know botox as injecting into ones face so one could look pretty and have nice ..umm..young face?? or whatsoever...but as ignorant as some may be..they are actually injecting some sort of poison into their own face just for the sake of beauty....sigh...BUT, for special needs children, botox may actually help to ease their life by enabling them to sit, stand or in the case of Ridhwan...walk! Yup, but because being muslims, it seems that Botox is a non-halal substance..yup people, next time you want to inject yourself, think twice as botox it seems has some haram ingredients in it...so our neuro paed gave us another options...called Dysport..you see, for a normal person like us, when botox is injected into the face, the muscle of our face tightens instead of sagging as it already is...however, for special needs people, it works the other way...instead of tightening the muscle, it relives the muscle, so we may massage or exercise or better known is therapy the muscle, such as calf muscle or ankle muscle to allow it to relax and like in Ridhwan's case, enables the leg to be straigthen and not be in a tip toe position when trying to stand or walk....so this was what our neuro paed wanted to do for Ridhwan....I know she means well, but after having inserting a PEG-tube in Ridhwan, I sort of, how to say it, serik..yes that's the word serik nak inject or insert any more foreign things into ridhwan so comel precious body...but of course, i can't be thinking about how I feel and need to think what's best for Ridhwan right....so intially I will smile whenever our neuro paed suggests it but never saying, 'yes dr! lets do it!'...and so I pushed myself to try and make that feet of Ridhwan to straighten as much as possible and just now, Ridhwan proved to the paed that he can walk when he wants too and he may not need botox at all...amin..amin...BUT, yes there's that but word again, she gives him until end of the year to actually really walk...aiyaaak!!! Truthfully my target was June...hehee..yup, that was my so-called target but as we know, kita merancang Allah yang maha tentukan kan....so far, well, he's learning to walk but to walk independently, it would be a real miracle to walk independently by June...however, I've seen miracles happen to Ridhwan kan....so mana tahu, wallahualam kan....thought, this time, I'm setting my target to be latest before Raya...why Raya? cause it would be a wonderful Raya gift for Ridhwan's grandparents in Ipoh to see their grandchild be able to walk...and also since I've written this in my blog, I have no choice to work hard to achieve this! Amin...amin...amin....tapi tu lah, we plan, Allah decides it kan.....so one target being implemented right now...
Target no. 2....his eye-sight....Ridhwan has what they call it a lazy eye...or as many would know in malay, juling or squint, umm okay, squint is not in malay, hehee...we have seen many opthalmologist and I must say, the fourth is the lucky one! Hahaha...ya rite...fourth....two out of the four eye doctors we saw was so discouraging that I felt like strangling them for being so discouraging and giving no hope at all towards ridhwan's condition and we as parents too....but this fourth one is the best...he knows his job and he knows how to deal with children and he knows what special needs children go through and how the brain works that deals with why certain things that the children undergoes happens and how it affects the eye sight too...and also, he was the one finally to teach me ho to use the eye patch...yup, Ridhwan is a pirate now! Captain jack sparrow!! hahhaa....no, my son is no jack sparrow and he will not be a pirate...maybe looks like one ya ;) hehee...so thanks to the eye patch thingy, Ridhwan's eye sight has seen some improvement and hopefully even better....amin....but, he needs glasses..oh well, nowdays, its not uncommon to see them with glasses right...though it is sad lah, for those normal children that is...but for Ridhwan, its something that could not be avoided....and so his power is somewhat okay, aroung 100 plus like that...but his astig of my....is veeeery high....hmmmm....so, the thing is now, Ridhwan has sensory issues, hates to be touch at the fingers and hand, won't put down his foot properly AND...hates having anything on his face such as wiping face with wet towel or putting on a cap on the head...soooo automatically, any foreign thing on face or head will be thrown away happily by Ridhwan :D ...which doesn't help of course lah kan...so now, I need to deal with this sensory problem, by giving him more and more 'facial' massage to him...yes, for girls who have tried facials before, its just like that you know! Hehehe...we of course would love facials right? but for my dear Ridhwan...its a big no! no! ...so now, with dealing with this facial sensory issue as fast as I can, i will be able to make Ridhwan wear his glasses as often as possible..and hopefully rectify his eye sight as best as we can..that too, targeted to overcome fully by the end of the year....hmmm.....
Next, target no. 3!! Mari belajar menulis! ....yes, our paed has once again, reminded me or ugut me, as i sometimes feel she's doing, which actually I am so very thankful to have her doing that to me....hehee...she has told me to make Ridhwan hold a pen or pencil and learn how to wrute as she expects him to go to a normal school when he comes to the age of going to a normal school...hmm...yes, sensory issues again.....and so, more hand games, or finger games or in shichida as they say, finger training....and means, more therapy, and more...and more....
With all this sensory issues, it makes me realise, how ungrateful I am and how we take for granted our sensors that was given to us by our creator and how shallow we are not realising that the brain is the most powerful organ in our body and one little damage to it can cause so much unstability in our so-called normal body of us...who'd knew that there are cases where children or even adults, who just couldn't feel the joy of touch we feel when we first touch our babies when they came out into our world or even hold our husbands hand right after akad nikah, you know that feeling of comfort and reassurance of a touch...yes....the sensors of touch...how we or mostly I never realise its powerful usage to just even do normal things, like holding a pen, wiping our sweat on our forehand or walking on a sandy beach ....so my friends, do appreciate that sensors call touch..touch your children a lot, touch your husband or wife...oops..hehee ...or just enjoy our sensors that god has given us cause there are so many out there whom has never felt them or lost them somehow....so may Alllah give me abundant of strength to remind myself this everyday, to enable me to fully work hard to make Ridhwan reach this 3 targets...Insya-Allah...also as my rehab doctor would always say...enjoy your child as much as you can despite many difficulties he and maybe we go through..cause at the end of the day...he is my darling little boy and I love him soo much and I only want whats best for him...wallahualam...
Sooo, today we met Ridhwan's very dedicated neuro paed, and alhamdulillah this time my hubby could come along, there were many times our visit there was with me and my mom only...so it was really nice to have my hubby come along and hear what our neuro paed has to say about Ridhwan's progres...alhamdulillah, she was happy that Ridhwan can actually walk if he wants too...no botox please!! ...yes, botox everyone...my son was given the option to inject himself with some botox to help straighten his foot because he was tip-toeing or as our therapist calls it, ballerina gaits....i thinks that's how you spell that word....anyway, Ridhwan has always had what they call, sensory problem...sensory here deals with how ridhwan feels towards certain things...or in short...his touch sensors...its very sensitive! Due to that, he doesn't like to touch my hand that much or even allow himself to be touched at his hand...body somehow okay pulak..and he is very sensitive on his feets...and because of that, his brain, as what dr and therapist have been telling me, sends message to his brain the feeling of uneasiness when he feels things on his hand and his feet...so that comes the so called ballerina gait or in layman terms, tip toeing....I have actually seen a young boy tip toeing in his shoes in one mall, walking tip toeing on the escalator..i was amazed as I knew Ridhwan too doesn't want his feet fall flat on the floor and has the problem of allowing us to straighthen the foot at times...so seeing the boy being able to walk with tip toe really startled and amazed me...but I know, that is not an option for Ridhwan and he really needs to learn how to walk properly and by addressing that issue, we would be addressing his sensory issues...
So back to the word, botox....yup...botolineum something something right...most of us would know botox as injecting into ones face so one could look pretty and have nice ..umm..young face?? or whatsoever...but as ignorant as some may be..they are actually injecting some sort of poison into their own face just for the sake of beauty....sigh...BUT, for special needs children, botox may actually help to ease their life by enabling them to sit, stand or in the case of Ridhwan...walk! Yup, but because being muslims, it seems that Botox is a non-halal substance..yup people, next time you want to inject yourself, think twice as botox it seems has some haram ingredients in it...so our neuro paed gave us another options...called Dysport..you see, for a normal person like us, when botox is injected into the face, the muscle of our face tightens instead of sagging as it already is...however, for special needs people, it works the other way...instead of tightening the muscle, it relives the muscle, so we may massage or exercise or better known is therapy the muscle, such as calf muscle or ankle muscle to allow it to relax and like in Ridhwan's case, enables the leg to be straigthen and not be in a tip toe position when trying to stand or walk....so this was what our neuro paed wanted to do for Ridhwan....I know she means well, but after having inserting a PEG-tube in Ridhwan, I sort of, how to say it, serik..yes that's the word serik nak inject or insert any more foreign things into ridhwan so comel precious body...but of course, i can't be thinking about how I feel and need to think what's best for Ridhwan right....so intially I will smile whenever our neuro paed suggests it but never saying, 'yes dr! lets do it!'...and so I pushed myself to try and make that feet of Ridhwan to straighten as much as possible and just now, Ridhwan proved to the paed that he can walk when he wants too and he may not need botox at all...amin..amin...BUT, yes there's that but word again, she gives him until end of the year to actually really walk...aiyaaak!!! Truthfully my target was June...hehee..yup, that was my so-called target but as we know, kita merancang Allah yang maha tentukan kan....so far, well, he's learning to walk but to walk independently, it would be a real miracle to walk independently by June...however, I've seen miracles happen to Ridhwan kan....so mana tahu, wallahualam kan....thought, this time, I'm setting my target to be latest before Raya...why Raya? cause it would be a wonderful Raya gift for Ridhwan's grandparents in Ipoh to see their grandchild be able to walk...and also since I've written this in my blog, I have no choice to work hard to achieve this! Amin...amin...amin....tapi tu lah, we plan, Allah decides it kan.....so one target being implemented right now...
Target no. 2....his eye-sight....Ridhwan has what they call it a lazy eye...or as many would know in malay, juling or squint, umm okay, squint is not in malay, hehee...we have seen many opthalmologist and I must say, the fourth is the lucky one! Hahaha...ya rite...fourth....two out of the four eye doctors we saw was so discouraging that I felt like strangling them for being so discouraging and giving no hope at all towards ridhwan's condition and we as parents too....but this fourth one is the best...he knows his job and he knows how to deal with children and he knows what special needs children go through and how the brain works that deals with why certain things that the children undergoes happens and how it affects the eye sight too...and also, he was the one finally to teach me ho to use the eye patch...yup, Ridhwan is a pirate now! Captain jack sparrow!! hahhaa....no, my son is no jack sparrow and he will not be a pirate...maybe looks like one ya ;) hehee...so thanks to the eye patch thingy, Ridhwan's eye sight has seen some improvement and hopefully even better....amin....but, he needs glasses..oh well, nowdays, its not uncommon to see them with glasses right...though it is sad lah, for those normal children that is...but for Ridhwan, its something that could not be avoided....and so his power is somewhat okay, aroung 100 plus like that...but his astig of my....is veeeery high....hmmmm....so, the thing is now, Ridhwan has sensory issues, hates to be touch at the fingers and hand, won't put down his foot properly AND...hates having anything on his face such as wiping face with wet towel or putting on a cap on the head...soooo automatically, any foreign thing on face or head will be thrown away happily by Ridhwan :D ...which doesn't help of course lah kan...so now, I need to deal with this sensory problem, by giving him more and more 'facial' massage to him...yes, for girls who have tried facials before, its just like that you know! Hehehe...we of course would love facials right? but for my dear Ridhwan...its a big no! no! ...so now, with dealing with this facial sensory issue as fast as I can, i will be able to make Ridhwan wear his glasses as often as possible..and hopefully rectify his eye sight as best as we can..that too, targeted to overcome fully by the end of the year....hmmm.....
Next, target no. 3!! Mari belajar menulis! ....yes, our paed has once again, reminded me or ugut me, as i sometimes feel she's doing, which actually I am so very thankful to have her doing that to me....hehee...she has told me to make Ridhwan hold a pen or pencil and learn how to wrute as she expects him to go to a normal school when he comes to the age of going to a normal school...hmm...yes, sensory issues again.....and so, more hand games, or finger games or in shichida as they say, finger training....and means, more therapy, and more...and more....
With all this sensory issues, it makes me realise, how ungrateful I am and how we take for granted our sensors that was given to us by our creator and how shallow we are not realising that the brain is the most powerful organ in our body and one little damage to it can cause so much unstability in our so-called normal body of us...who'd knew that there are cases where children or even adults, who just couldn't feel the joy of touch we feel when we first touch our babies when they came out into our world or even hold our husbands hand right after akad nikah, you know that feeling of comfort and reassurance of a touch...yes....the sensors of touch...how we or mostly I never realise its powerful usage to just even do normal things, like holding a pen, wiping our sweat on our forehand or walking on a sandy beach ....so my friends, do appreciate that sensors call touch..touch your children a lot, touch your husband or wife...oops..hehee ...or just enjoy our sensors that god has given us cause there are so many out there whom has never felt them or lost them somehow....so may Alllah give me abundant of strength to remind myself this everyday, to enable me to fully work hard to make Ridhwan reach this 3 targets...Insya-Allah...also as my rehab doctor would always say...enjoy your child as much as you can despite many difficulties he and maybe we go through..cause at the end of the day...he is my darling little boy and I love him soo much and I only want whats best for him...wallahualam...
0 comments:
Post a Comment