Letter To Our Birthday Boy

Dearest Rayhan, 

Do you know what day is today? Today is YOUR BIRTHDAY! 

"Happy 1 year old old Birthday darling! "

And do you know what we should do today?

We should thank Allah more today.. 

Why?

Because Allah gives both of us chance to kiss , to hug each other more, to stroke your soft hair, to touch mummy's face,  to play with your brother, to laugh with daddy, to bath with mummy, to cry searching for mummy, to sleep with u , to hold you closed to my heart and hear your breath..and ..to continue breastfeed you more and more.. 

Alhamdulillah. 

Dearest Rayhan,

Our 1 year journey is so wonderful that I don't know how to put into words.. 

This early morning I was browsing through all your pictures and I cried  How time really fly! You have bring such joy to us. Thank you Rayhan.. thank you ... 

Birthday : 18th May 2013/ 11.32 am/ 2.6kgThe journey of breastfeeding you is so unforgettable.You've always tried your very best to latch on my breast and suck but you chocked. It's okay, at least you tried and never give up without knowing yourself being a Down Syndrome with a Cleft Palate. YOU DID IT!

We can never forget your very first smile..
I screamed with joy and tears
 and quickly telephoned daddy to tell him this great news!
YES, YOU DID IT!

You have went trough many occupational therapies
to make you stronger to roll over for first time.
And YOU DID IT !

People hardly understand why mommy always cry
whenever you STRUGGLED  to keep your head high and strong!
YOU DID IT!

You sit and fall backward many times just to get it right..
and YOU DID IT!

Nothing can bring us more joy than waiting for you to start your first crawl.
After 9 months..YOU finally DID IT!

Our 10 months of waiting has ended.. Thank God, you finally get your Cleft repaired!
You didn't even cry after 2 hours operation!
Rayhan, you are such a strong boy!
YOU DID IT!

Your first enjoyable meal without chocking.
Such a wonderful moment!
Yes, YOU DID IT! 

Standing is not easy..
but you've LEARNT and WORKED HARD to stand even just a second!
and YES, you've break the record yesterday for standing more than 5 minutes!
YOU DID IT !

. 

My dear Rayhan, 

I pray hard that Allah gives us health and long life so we can continue enjoy this marvelous moment together. 

I pray hard that you will forever stay strong and never ever let anybody look down on you. Never ever let anyone sympathize you.

You've got to aim high, stay firm and believe in GOD. 

Do you know Dr. Karen Gaffney who is a long-distance swimmer, advocate, receives doctorate of human letters.  She is also having Down Syndrome.. just like you.  

You Can Do It!  Yes, YOU CAN!!

Dearest Rayhan,

Promise me.. 

Promise me.. 

Promise me..

Don't ever give up.. never ever give up hope. 

Rayhan,

My wish has granted for breastfeeding you for a year but now I wish to breastfeed you FOREVER..

Again you have make us so proud of you. Having you is like heaven.. 

Thank you Allah.. for this wonderful 1 year journey and we pray many more years to come. 

Rayhan,

Indeed you're so PERFECT! 

WE LOVE YOU DEEPLY. 

HAPPY BIRTHDAY DARLING ! 

A Letter To Our Down Syndrome & Cleft Palate Son

I

Dearest Rayhan,

Another 5 days to end year 2012. I'm looking at you sleeping beside me telling myself how time really does fly! Although you are only 7 months old and I already having such a great time with you. Your brother, Rayyan are so super adore you now. He hardly sleeps without touching your cute little face. We hope both of you will get along and stay closed to each other through thick and thin. 

Now you are 7 months old but you still not able to take any solid food yet. It's OK darling. Time will come. Mummy will breastfeed you and keep you full all the time. It's OK that you still can't reach out toys or crawl like any other normal baby at this age. Time will come my dear.. just a little hard work.

I  shed tears in joy every time I watching you putting extra hard work just to reach out your hands.. I shed tears with smile when I see you struggling hard to move your arms and legs to the front just to get a single move. I shed tears in joy seeing you laying on the rubber ball and sitting on the bamboo chair for just 30 minits of Therapy with patience. Thank you dear Rayhan.. You are already making us SUPER PROUD of you now! 

Nevertheless, this year you did achieved success. You managed to drink 5oz just in 15minute compared to 2oz in 1 hour when you were born. You successfully roll over when you are only 4 months old and you also can sit with support at 6months old. Such a huge accomplishment! Alhamdulillah! Praises to All-Mighty!

Every day at 5am, I was awake by you with a big smile and putting you back on the crib after feeding and you will fall a sleep on your own without any fuss. You are such a good child! It’s seriously amazing for having you with us this year and hopefully many years to come. 

As you've grown older, your smile and laughter has lighten up our hearts. We just can't get enough of your smile! They way you look at me with your lovely almond eyes, cute reddish long protruding tongue! So cute! Subhanallah.. It feel like having a chocolate melting in your mouth.. so sweet, soft and calm and peaceful.. (so much of imagination huh?!) We LOVE watching every minute of you. 

My dear Rayhan, I still remember how scared we were when we found out you were born with Down Syndrome and Cleft Palate. We fear that you may have serious illness and will not be like any other normal babies. Alhamdulillah, none of those fears came true. Now we know that you are just like a other cute and angelic normal child. Even better with Extra Cells! 

Rayhan, sometimes or maybe most of the time I will be thinking if I have given you enough love as much as you've given us? We are working hard to get the best toy, best therapy and better home for you. Every single cents we earn is just for you and your brother. We hope you have a wonderful and beautiful moment with us too. 

Rayhan, watching you remind us the great Creation of God. You are such an beautiful, uniqe and so full of joy that make everyone besides you smile. We love you dearly baby.

You make us so Super Proud of you. And thank you for coming to our life. May we have a wonderful moment every second. May everyday be better than yesterday. No words can describe our love to you. Just wanna let you know that "You are so PERFECT!" 

WE LOVE YOU VERY MUCH! 

**Pleas help us to click LIKE & SHARE to other parents that Down Syndrome is OK and it is NOT an Illness. 

**Please help us click LIKE & SHARE to other parents-to-be that Do Not Abort Down Syndrome Baby.. They are 'ticket' to heaven for us.. 

Thank You. 

You may like to read on my first blog on ~(click here) : My Journey of Breastfeedin My Down Syndrome and Cleft Palate Baby 

My Journey of Breastfeeding Down Syndrome and Cleft Palate Baby ~ Rayhan's 6 month Birthday

Praises to All-Mighty! Today was an awesome day because today is baby Rayhan's six month birthday! Happy Birthday dear Rayhan! 

Time really does fly. I hardly believe it’s already been six months since Allah blessed us with this cute little Down Syndrome and cleft palate boy.  I would definitely say that i'm enjoying breastfeeding Rayhan exclusively for the past six months! Alhamdulillah! 

There is nothing my husband and I could say other than being thankful to Allah s.w.t for taking care of our little Rayhan. We are looking forward for his six month child exam and hopefully we get to to do CBC test (complete blood count) again to confirm if there is anything we should fear of such as Leukemia! (FYI – Children born with Down Syndrome are at a higher risk of developing leukemia than “typical” children; therefore they must have a CBC test on a regular basis the first few years of their life.)

Rayhan still has to go for numbers of tests and appointments such as  vision and hearing tests and many occupational therapist every month. Sound a lot of hard work for this little guy! 

Other than that, he is putting on weight well too, Alhamdulillah (ever since i've been taking Energizing Soy Protein which is such a big help in making my breast milk less diluted). Remembering back the day where he struggled to gain weight really make me shed tears. Now he is a healthy six month old boy at 6.1kg! I think Rayhan is doing incredible in his head control, another thankful to Allah! We are still looking forward to bring him to any private sector for his early intervention. 

Finally we ended the day with a huge milestone – Rayhan being able to eat his first solid meal!  I was eager to make his first solid ~ Kurma + Badam + Kismis. However due unavoidable circumstances, Rayhan ended up eating cereal mixed with my breastmilk for his first solid food! And it wasn't easy as i thought as Rayhan kept pushing out his cereal with his protruding tongue (one of Down Syndrome's characteristic). He didn't finish his bowl because he started crying and grabbed the spoon. I think he was impatient with my slow motion and extra careful feeding! Well, guess we have to try again today. Anyway, we are so thankful for today and everyday!

Thank You For Your Prayers!

Every since giving birth to Rayhan, my family and friends have been praying hard for his  health. My husband and I are both overwhelmed with the support and response we have had through our facebook and blog. We also hope that with this blog about our little awesome Rayhan can tell the world that having a child with Down Syndrome is OK! Trust me.. Now, i'm so happy and thankful for given a chance to taken care an angel child like Rayhan. 

One of the reasons i started writing this blog was to encourage new parents  an inside look at family raising a child with Down Syndrome and Cleft Palate. It is not a smooth journey but have faith in God. If you know Rayhan, you will definitely fall in love with his EXTRA CELLS! :)

Thank you for being a part of our journey, please feel free to tell me about your awesome journey raising your baby in the comments below. 

Please click LIKE and be member of our site if you think Rayhan is an Awesome boy! Thank you. 

Superboy! 

4 CREATIVE WAYS TO STIMULATE YOUR BABY'S BRAIN DEVELOPMENT

Happy Deepavali to all my Indian friends and Happy Holiday to all! I love Public Holiday and Weekend! (who doesn't?) because we get to play more with our sons! 

Our second son, Rayhan was born with Down Syndrome and Cleft Palate ( u may wanna read my first article ~ My Journey of  Breastfeeding Down Syndrome and Cleft Palate Baby). The biggest characteristic of DS baby is hypotnia.  You have to feel hypotonia; it is hard to diagnosis from pictures.  For example, when I hold Rayhan, it feels like he is going to slip through my arms. Rayhan will feel  floppy or limp. Hypotonia affects every muscle from face to ankles. Thus, in order to make his muscles stronger, Rayhan will always be on tummy time! Tummy time help Rayhan build head control and be the first building block for his development.

The bright side of hypotonia is Rayhan is so nice to cuddled and feel like he is melting into my arms!! :)  Normal babies and baby like Rayhan need lots of play to stimulate their brain development. Here are 4 creative ways to stimulate your baby :

Rayhan loves to play Peekaboo!

Talk, Talk, Talk

Face-to-face interaction with your child helps promote brain connections required for language skills. Talk, sing or coo to your child every opportunity you get. Explain what you are doing or ask her questions. Read picture books often to your child and point out different things you see. Talking to your child regularly also helps teach her the social skill of how to take turns in conversations. 

Bright Visual Cues

"Wait till i grab that stuff up there!"

At 2 months, babies like bright, shiny and colorful things. At this age, children really enjoy looking at images and objects with sharp color contrast. Try hanging bright objects around your baby's surroundings. Make a homemade colorful mobile out of bright yellow, red, blue and green objects and hang it above your child's crib. Make sure that it is out of reach.

Baby's Reflection

Around this age, babies love to look at themselves in a mirror. Place a mirror approximately 8 inches in front of your baby's face. Even though she does not realize she is looking at her reflection, she will be amazed at what she sees, since to her, everything she does, will get an immediate response from the person looking back. Looking in the mirror helps your child learn how to focus and figure out what her face can do.

Tummy Time

By 2 months, your baby is able to hold her head up. Place her on her stomach for a few minutes several times a day. According to BabyCenter, providing daily tummy time to your child from early on helps her learn how to roll over, sit up and eventually crawl. Failing to provide tummy time can cause delays in your child's motor skills development. Here is a video Rayhan enjoying his Mickey Mouse Club! Just look at his head control and strong muscular arms! :)

That's all for today dear. Enjoy your holidays ya Mami! Lots and lots of hugs and kissess from Rayhan to u! We would like to hear how you guys play with your baby, so drop us some comments ya! 

** If you think Rayhan is an AWESOME boy , please click LIKE ,SHARE  & BECOME MEMBER of this site  ! tq  

My Journey of Breastfeeding Down Syndrome and Cleft Palate Baby

Breastfeeding is POSSIBLE for baby with Down Syndrome and Cleft Palate 

Having pregnant with my second child was the most happiest moment of my life. I love being pregnant and hope to get pregnant again. Praises to All-Mighty, giving birth to Rayhan was fast and easy. Rayhan was born on 18th May 2012, 11.32 am at 2.6kg. It was the most defining moment of my life but this is just the beginning of my story. The pediatrician told us a shocking news that our son is having Down Syndrome. I didn't cry until the moment i held him close on my chest. I cried and cried even more when the pediatrician diagnosed Rayhan with cleft palate and other complications. My heart sank! What have i done to make him be like this? What have i done?? I didn't want to believe and hoping for miracle..i was in a black hole.. I didn't want my son to be like this.. But later after a hard loud cried, i hold him again and hear him telling me " LOVE ME, LOVE ME PLEASE, I KNOW I'M NOT WHAT YOU EXPECTED BUT PLEASE LOVE ME!...and from that on wards i know i need help from many doctors, specialist and support groups but what i need most is to follow my MOTHERLY INSTINCT and love my son unconditionally.

As a mother, I wanted so much to breastfeed my son but I was refrained from my doctor to do so because direct latching could cause my son to get chock due to his cleft palate. Again, I was heart broken! I cried and cried the whole night. I refused to give up and listen to my motherly instinct instead. I  kept myself awake every one hour to pump out my "Golden Colostrum Breast milk" . And there it was just a few drop of my "Gold" with the intention to feed my beloved child. And i keep on pumping and pumping until i was able to yield 5 oz per session!

We never thought that we are going bring home a Down Syndrome and Cleft Palate baby. 

At day 4, Rayhan was admitted to the Hospital Sungai Petani, Kedah for jaundice. His weight dropped to 2.4kg and it didn't increased until a month later. I was exhausted! It wasn't easy to feed Rayhan using cup and 'special bottle' design for cleft babies. Rayhan drank 2oz in 1 hour!! It goes on until 2 months old. Rayhan has difficulties in sucking milk and sometimes milk came out from his nostril. I cried and cried when ever i see him having such a hard time.  "Rayhan, how I wish I could take over your pain"! 

As time goes by, Rayhan has recovered from Jaundice and his white blood cells has increased (he was suspected having Trombosytopenia), 2 holes in his heart has eventually closed by itself and finally his undescended testis has drop down to the 'right location'! Alhamdulillah, All-Praises to Allah.

Today , Rayhan is 5 months old at 6.1kg. He drinks 5oz (just in 15minutes!) of Mummy's breast milk every 3 hour daily and sleeps trough the night. He goes for his Occupational Therapy once every month (which is insufficient for him) therefore we have stimulate him more by interaction play and tummy time. Alhamdulillah, he is able to role over at age of 4months old. "Awesome job dear Rayhan!"

Alhamdulillah, now my milk supply is enough for both Rayhan and Rayyan. I will keep on pumping to feed both them until reaches they reach 2 1/2 years old.  InsyaAllah. 

We are so proud of him and will never ever change his 'Extra Cells' for anything else! His extra cells keep Us ALIVE!  

Dearest baby RAYHAN, u r beautiful! Daddy, mummy n big brother Rayyan love u dearly. MY SONS, U COMPLETE ME! !

Muhammad Rayhan Rafiqin -5month old & Muhammad Rayyan Rafiqin 20 months old 

** If you think Rayhan is an AWESOME boy , please click LIKE ,SHARE  & BECOME MEMBER of this site  ! tq  

**** En. Ahmad Redzuan bin Abu Hasan, Thank You for being such a wonderful and supportive husband. This journey will not be smooth as it is without you by my side! Thank You dearest hubby for being an 'AWESOME Husband and Daddy!'

*** thank you to sis Farah Shaklee for introducing Shaklee to me (credit my 10oz milk to u!) and thank you to sis Nurul Aida Ismail (CLAPAM) for supporting me in breastfeeding cleft palate baby . Special gratitude to all my beloved family , in-laws, teachers and Facebook friends for making prayers for Rayhan. Love U All!