early intervention program for children with Down Syndrome

it has been a while...we've been busy and that limits my time to blog...i promise i will update you on iyad's development..

but before that, let me share with you an article in  our local newspaper, The News Straits Times, where i was interviewed on the early intervention program for children with Down Syndrome...

http://www.nst.com.my/channels/learning-curve/special-education-early-intervention-is-crucial-1.514606

we were in the Give Back with Baskin Robbins Campaign

We were proud to be selected as one of the families to be featured in the "Give Back with Baskin Robbins Campaign" in October-November 2013.. the aim of this campaign is to help in collecting fund for Kiwanis Down Syndrome Foundation PJ...

The campaign was one of the CSR by Baskin Robbins Malaysia and it is hoped that through this campaign we are able to create the awareness and educate the public on Down Syndrome and how our special needs children should be given an equal chance in life...

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...