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!!!