Baby Iyad's developmental milestones...

alhamdulillah, it has been a while since i last wrote about baby iyad's developmental milestones...we are very much excited and looking forward to every single new things that he is capable of doing... he cheers up our gloomy days with his cheeky attitudes and funny acts... he is such a determine boy, even though he doesn't like to be pushed when he's not ready, he actually tries very hard to attain a particular skill until he is able to surprise us with his achievement in his developmental milestones..

at slightly over 1 year old, baby iyad surprised us with a moving forward commando crawl...it was not only one or two steps, but he was trying very hard to get on hold to his toys when we purposely put it far in front of him...

now he's quite good at it, alternating it with rolling over and moving forward.... but wait..! there's another surprise....!

at about 14 months, he impressed us with his skill to sit on his own... baby iyad has slightly shorter arms, which is a known feature of children with Down Syndrome...that can make sitting up on their own quite difficult for them because they can't push themselves to sit as easy as their peers who have a proportionate arm span...

so what he did was, he started by crawling backward and rest his bottom on the floor and pushed himself hard to sit up straight!...that was simply amazing...! at times he failed and he fell forward or sideways, but after he successfully sit up straight he would make a satisfaction scream that he's able to that on his own..! i have yet to video this skill...

alhamdulillah, even though he's slightly delayed in his development, we know that he is working hard to do it...we are very proud of his every single achievements... at 14 months, he adores food very much and is still on fully breastfeeding.. alhamdulilillah, i am still given the chance to feed him with my own milk even though the supply is not as great, but it is sufficient for his intake and requirement...

keep it up my dear baby iyad!! you are such an inspiration in our life and we love you dearly with all our heart...

Iyad's '3D2N 5-star hotel stay' at UKMSC (part 2)

we entered the OT room (OT 15), and i put baby iyad on the table..the anaesthetist gassed him down and he was deeply asleep...at that time, we left baby iyad's life to the Almighty Allah, we continued praying that everything will be fine and baby iyad would return to us safe and sound..

the first thing the anaesthetists worked on baby iyad after he was gassed down, was to get an IV line and draw some blood for his thyroid function test...Dr E found a good vein that was able to give some blood into the bottle, but it got bumped so IV line could not be secured...multiple attempts of IV line searches were done while baby iyad was only gassed in the induction phase, not yet put on proper secured airway..

at one time they decided not to find the IV line as it was so difficult, and they proceeded to put baby iyad on laryngeal mask airway (LMA) but baby iyad became tachycardic as his large tongue flopped backwards, and they reinserted the LMA but still his breathing was not good, so they needed to fine an IV access so that they can proceed to intubate him for the airway...finally, i think after about 45 min, an IV access was successfully placed at his left foot...

then the procedures began, starting with checking for his eye fundus, measuring for his cup-disc ratio and eye pressure and checking at the patency of the nasolacrimal duct...up to then, everything was good.. next the refraction test by the optometrist... alhamdulillah, it was ok and appropriate for his age...

the anaesthesia was reversed and baby iyad was wheeled out of the operation theatre to the recovery area...he was breathing on his own, sleeping serenely... i stimulated him and cuddled him so that he would wake up and he opened his eyes and searching for mama's milk...obviously he was hungry for being fasted since 5am in the morning up to then it was 12 noon...i offered him my breast and he tolerating it very well and did not vomit...

we were transferred back to the ward and baby iyad continued asking for more milk and intermittently fell asleep again...

by evening, he was quite active and was able to tolerate his cereal and we offed the IV drip as he was taking his milk and food well...we did not get discharged that day as the ophthalmologist had cases to attend to in the OT and would only review baby iyad the next morning...

so we spent another night in our 5-star hotel and were only discharged at around noon the next day...

although as medical professionals, we've seen many children been through many surgical procedures, and it was only a normal examination for baby iyad, we reserved our fear at the back of our mind... anaesthesia and the whole procedures are not without complications, so the best we could do at that time was pray to the Almighty Allah to look after our precious baby iyad and to return him back to us after it was done...alhamdulillah, everything went well and baby iyad is now actively up and about trying out new things every single day....

Iyad's '3D2N 5-star hotel stay' at UKMSC (part 1)

as planned, baby iyad had to undergo examination under anaesthesia (EUA) to have his eyes properly checked...his eyes pressure was found to be elevated under normal eye examination which could be due to persistent crying, struggling and screaming during the procedure...as increased eye pressure could be one of the signs of glaucoma, which can be found in children with DS, it is important to have baby iyad's eyes checked properly and if it is truly elevated, treatment could be instituted to prevent complications..

we checked-in to the ward and was reviewed by the Ophthalmology MO who is our friend, Dr H...he gave it a try to prick baby iyad's vein to get some blood for routine investigations...as we know, it's going to be challenging for all of us; for the Dr, the assisting nurse and us the parents..and poor baby iyad, he was screaming and struggling during the procedure in which we had to abandon after a few unsuccessful attempts...after a few minutes cuddling in wrap, he finally fell asleep...

the anaesthetist, Dr N came next to review while baby iyad was still asleep...we were instructed to stop breastfeeding 4 hours before the procedure for the anaesthesia and no more food after midnight... hmmm, that could be a challenge for us as baby iyad need to stop breastfeeding at around 5 am, where he usually would wake up and would want to be breastfed at that time...hopefully, Allah will make it easier for us... 

so that night, baby iyad had a good night sleep on the adult hospital bed with mama, while papa slept on the sofa bed... he seemed to enjoy his stay in the ward....

at 5 am, baby iyad had his last breastfeeding session with me before being put on fasting mode for the procedure...it was quite challenging to make him stop nibbling and breastfeeding so dear hubby had to carry him, cuddled him to comfort and brought him around the 7th floor so that he would forget his hungriness... 

at around 8.30 am, we were called to the operation theatre (OT), baby iyad was dressed in the oversized OT gown and cap...he looked so cute in it...especially when the oversized cap kept falling down covering his eyes...

i carried him down to the OT in the ring sling and upon arrival to the OT, dear hubby changed into his OT attire while i carried baby iyad at the entrance...once hubby was ready inside to receive baby iyad, i then changed into my OT attire and rejoiced with them at the receiving bay... while cuddling and carrying iyad, he finally dozed off...

happy 1st birthday our little miracle

it has been a year... one year ago, on the same date, we were expecting the arrival of our 3rd bundle of joy...carrying him for the past 9 months was a bliss, it was a miracle...the normal pregnancy symptoms and such, not much different from my previous 2.. everything was uneventful, up until 34 weeks when the ultrasound showed the femur and humerus did not grow as the rest of the parameters...but that did not ring a bell as it could be due to normal variant...

so the labour progressed so fast with some hype drama (here's the labor story http://myfeotus2.blogspot.com/2012/08/38-weeks-5-days-labor-day.html)  and we were blessed with our little miracle, ahmad iyad ghazi on 29th august 2012, when the fajr azan was heard... 

the rest was a history...i wouldn't want to re-write or re-read my previous entries on the blog from the moment of suspicion to the moment of truth...every time i read the story, i could not stop myself from shedding a few tears...it's very difficult for me to tell you what or how i felt...did it hurt me? yes and no, but alhamdulillah, i'm accepting it now and embracing the truth with my open heart... baby iyad is a gift that Allah has rewarded us and it has been a wonderful year for all of us..

baby iyad has grown from a tiny squish to a chubby toddler....although developmentally he was slightly delayed as compared to his peers, that does not mean he is different from them who attained their developmental milestones accordingly as mentioned in most baby books...baby iyad is fun to be with, cute, adorable and will definitely melt everyone's heart with his charming smile...

it's amazing to learn every single bit about his development and his achievement...no question about our love towards him as compared to our normally developed children..we love them all equally... and his siblings love him so much and they are baby iyad's great defenders and guardians...

so today, there's nothing can describe our feeling, how all of us survived the year with his presence...while we are supposed to teach and guide him to be independent and attain his maximum potential, baby iyad himself is a great teacher who teaches us to acquire the skills that we never had before...we learn from each other, and that made us perfect puzzle pieces that matched each other and it completed a beautiful picture...everything happened to our family was a blessing, alhamdulillah...

at 1 year old, baby iyad is able to sit unsupported, babbling (and trying to talk to us), pivoting 360 degrees and rolling over, enjoying food of different tastes and textures and he is still fully breastfeeding...

happy birthday baby iyad...thank you for an amazing journey full of obstacles, but we made it together...

O Allah, keep us strong, keep us together no matter what comes...protect our children from any harms... and guide us to your path of Jannah...

Selamat Hari Raya Aidilfitri

i hope it's not too late to wish Selamat Hari Raya Aidilfitri, Maaf Zahir Batin to all our readers...i'm sure all of you had a wonderful festive season with lots of delicacies to enjoy..so did we..

this is baby iyad's first hari raya...last year, he was still comfortably sit in my tummy, when he decided to say hello about 2 weeks after raya...

we were very excited to get baby iyad's first baju melayu...he had 2 pairs, one was beige and another one was purple, to match with our color theme this year...

overall, we had a very enjoyable and joyful raya celebration..baby iyad behaved well during his trip balik kampung...he was seated in his car seat at the passenger seat at the back with me and kakak...

he was a bit cranky when he was tired and sleepy but babywearing saved our day..he slept comfortably in the wrap on my chest...

alhamdulillah, kakak jihan managed to fast fully this ramadhan, while imtiaz still have not learned the meaning of it..insya allah his time will come and i'm sure he will follow jihan's footstep soon..

and the kids got excited to get their duit raya...they were looking forward to receive it and had fun eating all the delicacies...

it's also time for giving and sharing especially with the unfortunate ones... hopefully, a small good deed will take us to jannah, ameen...

baby iyad on hearing aid trial

this was long overdue, terribly sorry for my busy schedule...

baby iyad had his 4th BESR to determine his hearing level....this time it was done when he was asleep (after a dose of chloral hydrate) in the wrap, not lying down on the couch as usual...the result showed that both ears responded to the sound up to 55db (previously it was 30, 70), it could be due to his current URTI at that time that affected the test..

the audiologist suggested that baby iyad to be put on hearing aid trial so that he would be stimulated well and hopefully it would help him in term of his speech development...so, we had his ear mould done which he was already awake at that time, luckily he cooperated well.. and we were to come back in the next 2 weeks to fit the ear moulds to the hearing aid..

so, we came back as scheduled and had the ear moulds fitted to his ears... it was then connected to the hearing aid device and set to 45db...baby iyad was quite stunned when he heard his own voice which was quite accentuated and amplified by the hearing aid...although all these while he could respond to sound and noise, with the hearing aid, he could hear better...

now, we tried to put him with the device as long and frequent as possible except during his sleep... he kind of adapting well to it but sometimes he would pull it off his ear and started nibbling it...

since it is conductive hearing loss, hopefully, his hearing would get better when he grows bigger, with the ear canals become larger so more sound would be able to penetrate into it...

a discriminating statement on people with Down Syndrome- we demand an apology petition

hello to our readers, i know you demand a pretty exciting updates on baby iyad, and yes, mama is too busy to write but we promise to keep our blog updated...

what we want to highlight today is, we need your support to sign a petition for a talented composer, Azmeer, who in a live TV show (TV3), made a discriminating statement that touched and hurt the people with Down Syndrome...in that show, Azmeer made a comment on one of the contestant's performance as "like a bunch of Down Syndrome idiots" or "budak-budak Tapaw (the contestant) ni bodoh-bodoh Down Syndrome"..

i did not watch the show at that particular time, if not i would be very furious and frustrated that such a talented composer with normal intelligence (but obviously with low awareness, heartless and insenstitive) had the gut to say such things! just imagine, how many hearts had been hurt by his statement..please note that these children with Down Syndrome have intelligent parents and siblings..they are doctors, engineers, accountants, clerks, teachers, homemakers, farmers, cleaners, cooks, to name some..they are smart and intelligent people in their fields..and they become more intelligent and smarter than you are as they brought up a very special child with extra chromosome that you and i do not have...so do not hurt their feelings...

this petition was started by a sweet mother who has a child with Down Syndrome, with a hope that the particular person and the TV station will apologize to the public, especially to the Down Syndrome community, hence to create awareness that disabled people are not at all difference from all of us, who claimed to be normal..

please follow the link below to sign the petition...we really appreciate your support...thank you..

http://www.ipetitions.com/petition/azmeer-and-tv3-please-apologize-to-the-down/

"i am a mother of a child with a down syndrome and i'm a smart doctor with brain and my baby iyad is a smart, intelligent baby with down syndrome. who are you to say people with down syndrome stupid?? you are making a stupid statement as you did not know that people with down syndrome is smarter, intelligent and brainier than you as they never hurt other people's feelings - Dr Ezura Madiana Md Monoto and baby Ahmad Iyad Ghazi bin Asrul"

baby iyad with his normally developed siblings..they are my angels..

baby iyad was down with mild acute gastroenteritis (AGE)

at almost 9 month old, it was the first time my baby iyad had AGE...he was not that sick though but had bouts of vomiting with loose stool...he had meals of sweet potatoes with chicken the day before, that might be the cause of it..probably the sweet potatoes were already spoilt..poor baby..he had sweet potatoes before and did not have any problems with it..

it started with vomiting episodes soon after breastfeeding...it was projectile and copious in amount..he also had stomach upset and was frequently crying during his sleep at night...we applied some ointment and that settled him a bit...the following day, he started to have loose stool...yes, baby iyad had well-formed stool which was sometimes hard stool after he was started on solid food..so when he had vomiting and loose stool, there's something wrong here...he also had a low grade fever too..

so we decided that he should stop eating his food and only be fed with breast milk...so we rested his bowel from processing complex food..he got better the next day, when i decided to try feeding him on his food...that was the day when we were supposed to send atok, wan and makngah to the airport as they were leaving for umrah... initially baby iyad was well, he managed to finish his food...and  i breastfed him after bath..then he started vomiting out his food and milk and had loose stool...oh dear..it's still not resolving..so, we were unable to send the troop to the airport...

he looked quite flat and was not active as usual...and i continued breastfeeding him on demand so that he would be well hydrated and that could excuse him form hospital admission..alhamdulillah, he recuperated quite fast and i was able to feed him with fruit puree the following day and no more vomiting and loose stool since then... then i cooked him pasta with salmon, carrot and spinach and he was enjoying tit so much...

now, at the recent 9 month check up for his pneumococcal vaccination, baby iyad weighed 6.5kg.. alhamdulillah..he might be small for his age but on the Down Syndrome weight chart he's growing well...

when he was not well..we missed his smiley face...

our 9th anniversary

we celebrated our 9th anniversary early this month...alhamdulillah, thank you Allah for this wonderful marriage and blessed us with our adorable juniors...

the day before our anniversary, dear hubby and i spent a day out together, had a hefty breakfast and watched Iron Man 3 in a gold class cinema...the last time we had our movie date was a year ago...it was fun just the two of us and we were seated in a very comfortable recliner seat, side by side and was served by the movie hostess... the movie was awesome, the best of the three...

on our anniversary day, the whole troop went out early, had breakfast at the teh tarik place in the curve  and i got a homemade clay bangle from the kids...jihan made it herself from flour and baked them in the oven with the help of wan...oh, it brought tears to my eyes...

after breakfast we went into ikea for inspiration and had ice cream and the famous ikea currypuffs treat before moving on to the next agenda....

so next, we went bowling...yes all of us! we managed to get a lane with rails so that jihan would be able to hit the pins without missing it *wink* ..and the rest of us got the privileges too... imtiaz also had the chance to bowl together with papa as papa wore him in his soft-structured carrier at the back...well, i did not wear iyad though as it might tip off my balance so iyad was held by our maid and i managed to breastfeed him in between until he dozed off...

we had great, hefty lunch after that- seafood and others at bubba gump...it was a wonderful day and the kids we were exhausted by the end of the day...

we pray that Allah will keep us together for many years to come, insya allah till jannah with stronger bond and good iman, health and wealth...

minor surgery postponed

my adorable sons imitaz and iyad were supposed to undergo their ritual circumcision yesterday under general anaesthesia in PPUKM, but it was postponed as the operation theatre was still closed for elective cases as they were undergoing maintenance...

so the next available date to our convenience and also the surgeon's tentatively will be in july..hopefully all will go smoothly and be done as planned...

baby iyad was also supposed to do an examination under anaesthesia (EUA) for his eyes, to look at his eyeball's pressure and refraction...that will be postponed as well as the ophthalmologist wanted it to be done in the same setting...

more information on ritual circumcision in islam here

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7 month old baby iyad

sorry for the long hiatus..iyad's mama was extremely busy to complete her thesis and write ups for her final masters exam..please pray for her success in her viva in mid may, hopefully she will make through it so that she can concentrate more on iyad's therapy and progress once she finishes her study...

so, baby iyad had been extremely busy too...busy enjoying his food, exploring new taste and textures... he loves it when people taking his photos with iphone, readily offers his charming smile when he sees the iphone...he gets very excited when we hold our ipads and iphones and computers, he would try his best to reach for it...he loves playing and jumping around in his jumperoo...

alhamdulillah, baby iyad is still on fully breastfeeding...since he started on complementary food, he has difficulty passing out motion...well, he passed motion everyday and sometimes 2-3 times per day, but his stool was hard...sometimes, he had to push hard and cried when passing out his motion...we gave him at least a full serving of fruit like banana or papaya for his lunch or dinner and other times would be his vegetables puree...he doesn't really like to drink water..just a few sips and that's it...so far it is still manageable and hopefully it won't worsen...in the meanwhile, we are trying out best to increase the fibre intake and also the water intake during mealtimes...

March 21st was World Down Syndrome Day..it fell on thursday, on baby iyad's therapy day...so there was no class on that day as they went celebrating it at Kidzania...baby iyad did not join the celebration this year as he was still small to participate in the fun, furthermore mama had a course that she had to attend...

so, baby iyad did not go to school for 3 sessions as the following weeks was school holidays...but he still get stimulated at home...we are trying to teach him how to sit unsupported and get himself balanced while sitting up...

jihan and imtiaz are being very helpful looking after baby iyad sometimes...although most of the times they chose to do their own stuffs...

videos on baby iyad's 1st gastronomic experience

a new benchmark of life..baby iyad starts eating

happy 6 month birthday, baby iyad! alhamdulillah, we had a wonderful journey for the past 6 months and baby iyad has been growing up healthily..his developmental milestones had been excellent for his age and he entertained us with his ability and capability (and his adorable, cheeky smile) day by day... i wish to capture every single moment of his life in my mind and i don't want to miss a single achievement that he made...

alhamdulillah, for the past 6 months, he had been growing well only on mama's precious milk... there were times my milk production was low due to many factors, but i would shed blood, sweat and tears to make sure he had enough milk supply when i'm at work and via direct feeding when i'm at home..

now that he is 6 month old, it's time for him to graduate to another milestone..we are starting him on food..we tried baby-led weaning on him, he grabbed the carrot stick and tried to put it into his mouth, sucked it and had a big bite and threw it out of his mouth...he made some funny gestures and expressions and we were so excited about his new milestone...after a while, i pureed some of the carrot and feed him via spoon and he was so eager waiting for the next spoon and the next and the next...

we tried giving him cauliflower, spinach, potato and banana as well and he loves them very much..he still continue feeding on breast milk in between his meals and at night...

we brought him for his 6 month check up and vaccination.. he weighed at 5.6kg and length at 63cm...

baby iyad was also making good progress at school...although he would still cry and scream towards the end of the session, he was very excited to play and did the exercises with all his heart and we are very proud of his achievement...

baby iyad 3rd hearing test

another early morning for baby iyad, luckily he's an early riser...so he woke up early for his ENT appointment with Prof A...this time round it was just mama and baby iyad as papa had class in KCKL..we waited at the clinic feeling sleepy and bored...baby iyad had a good nap before he started wiggling in the wrap and suddenly made a loud explosion just before his turn to see the doctor..we changed quickly just in time before we were called...

Prof A arranged for another BSER before deciding to put baby iyad on hearing aid, based on his previous BSER which showed profound hearing lost on his left ear and moderate hearing lost on his right ear...

baby iyad was put to sleep with syrup chloral hydrate and dozed off soon after...he was put on the probes on his head and ears and the test commenced...the audiologist informed me that his left ear showed some improvement the hearing as now his brain responded to 70db noise from 90db previously..his right ear also improved from 40db to 30db...but the test on the right ear did not complete as baby iyad was already awake, probably very much disturbed by the noise as he has better hearing now...i realized that too as he showed very positive response to noise before this...

alhamdulillah, we were very happy with baby iyad's positive improvement...as for now, we agreed upon repeating this test in another 2 month, hopefully to see more improvement, before deciding on the hearing aid...

thank you for your prayer and support, they are very much appreciated and may Allah bless all of you with good life now and in the hereafter...

Down Syndrome Blogs- we are listed!

thank you to Rick, Noah's dad for listing our blog on noahsdad.com as one of the Down syndrome blogs..this is totally awesome..! we are looking forward to share our journey in Malaysia with the rest of the world...

you can browse through all other amazing stories of wonderful families of children with Down syndrome here

baby iyad is 5 month old

alhamdulillah, baby iyad turned 5 month old recently..how time flies...baby iyad had been in a very good health so far...developmentally, he was catching up fast to be at par with typically developed babies at his age...now he can turn from supine to prone a few times, and can also change his direction and position while turning...he loves grabbing stuffs within his reach and very much love to talk and and giggle and wiggle with people around him...he is such an adorable baby in our eyes...

he weighed 5.4kg, and got his 3rd DPT-Hib-IPV vaccine...and on the same day, he got his OKU card the card for special needs children..yeay! with that card, he's entitled to some discount on public transport tickets and many more privilleges...not to forget a 50% discount on tutti fruitti frozen yogurt!

baby iyad is still exclusively breastfed and during the day he drinks 3-4 bottles of 4+oz of expressed breast milk...he is able to sit in the bumbo seat with his head strongly held up..he had started sitting on the seat since he was about 3 month old when he attended his class in kiwanis...

mama had been very busy these few weeks catching up the deadlines for the final exam..so baby iyad was left with papa during the weekends, and they had wonderful babywearing moment together...baby iyad behaved very well, and did not complain much..when mama came home, he couldn't let mama go and we had our intimate moment together, breastfeeding and babywearing...

my name is I.Y.A.D

my dear hubby is into photography so much..this is one of his wonderful piece of work that i adore so much..and iyad had so many things to tell you about his name and very much excited indeed...