Mattie is READING!

Every accomplishment, minor or major deserves fair recognition.  And just like any mom, or "stage mom", any accomplishment made by my child warrants an utmost amount of praise!  Yes, I do admit I am kind of a stage mother.  Every deed silly, wise, smart, even naughty is funny and good.  All moms feel that all their children are at one-point champions.

Allow me to once more to dwell and bask in pride at Mattie's latest milestone.  To be honest, this is the one that urged me to write again (I hate writing!) as I simply felt that Mattie deserves all the praise he can get as this milestone is simply JUST AMAZING!  I want to shout it out to the world and tell everyone of his awesome accomplishment!

Let the video below speak for itself.  It will take 15 minutes of your time but I hope that you'll indulge me in watching it.  

P.S.  Please excuse mommy and teacher's "prideful" remarks.

Yes, Mattie is READING (sight reading to be exact)!  Yes, he just turned THREE years old.  No, I did not make any clues, codes, or marks in the cards that would help him guess or match the pictures correctly.  He was simply just reading the words (although not verbally) and matching the right pictures with the right words.  He was having a hard time with the fine motor part of connecting the puzzle pieces together, but almost perfected the reading part of matching the pictures with the words (30 words in all).  Also note that he was able to sit down, focus, and finish his task for fifteen straight minutes. Isn't that A-M-A-Z-I-N-G?  Mattie has special needs.  He has Down's syndrome, and just for that, this accomplishment tops the charts! (Click here to learn more about Down's syndrome).

A good friend once reminded me of God's love and goodness when she saw how Mattie was thriving and how he was developing and catching up with all his milestones.  She said: "God is good, isn't He?  He is our "Great Enabler". He gave us the strength, the wisdom, and the grace we need to be the parents we've always wanted to be for our children."  I did not pay much attention to her words at that time since I was still in the process of recovering from the bitterness of having a disabled child.

Another year has passed and now I am indeed amazed by how much Mattie has developed.  Yes there were hard times, times when we had to juggle one therapy after another, times when we had to assess the right balance between enough stimulation and over stimulation, and times when we felt like giving up since achieving the next milestone was just taking SO LONG, and seemed so IMPOSSIBLE. But, truly God is my Enabler!  He did carry me, Chris and Mattie thru. He showed us the way in which we could help Mattie be the way he is now.  He led us, provided for us, and gave us wisdom in giving what Mattie needs in ALL ASPECTS. He led us to the right therapists, to the right doctors, he provided for us financially, and even allowed me to become a full time mom to attend to Mattie's needs.  We indeed have an awesome God!  In Philippians 4:13, Paul says: “ I can do all things thru Christ who gives me strength.”  Yes, I claim this now; “I can do all things thru Christ who gives me strength!”

Mattie still has Down syndrome.  His disability will forever be there, it is part of him.  It is not like a disease or a virus that he could be healed from.  He will always strive and work extra hard to reach the next milestone, and may always lag behind versus typically developing children.  In John 9:2-7 Jesus’ disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him”

God did not take Mattie’s disability away.  In fact, God blessed Mattie, and my family with this disability to see His faithfulness, His provision, and His supremacy.  Because of Mattie, we rely on God day-by-day, moment-to-moment, and are forced to keep and strengthen our faith in Him.  Because of Mattie’s disability, Chris and I have come to know God in a real and loving way.  God has never failed us ever since.  God is good all the time; all the time God is good.  Truly the works of God are displayed in Mattie’s disability. 

I remember the first few days I was allowed to take a shower after my delivery.  The memory is so vivid since as you know, in the Chinese culture, mothers who have just given birth cannot take a bath for a month for risks of getting body pains or head trauma.  (I took a bath after 2 weeks … in secret, so you should know that taking a bath was a real luxury!)  There was a quiet voice in my head singing “This little light of mine, I gonna let it shine”.  I know now why that song was playing in my head.  Mattie’s light will definitely shine for Jesus. 

To God be the glory.

Mattie's Mom

The Greatest in the Kingdom of Heaven

"See that you do not look down on one of of these little ones.  

For I tell you that their angels in heaven always see the face of my Father in heaven."  

Matthew 18:10

Love at First Sign

Let me share with you this video of Mattie showing off his latest milestone: Signing!  Yes, you read it correctly SIGNING – not singing, SIGNING – as in sign language.  Mattie is now 1 year and 9 months.  To date he can sign 30 words (and counting!).  He can show me the sign for the word he knows with very minimal coaching.  He gets mixed up with some signs sometimes, like signing boat instead of book, or signing pray when I say play.  He also does not get to perfect the sign for words that are harder to sign since he still lacks the precise hand movements and finger dexterity.  But all in all I think he’s doing a splendid job.  I’m just so proud of my boy!

It was one of Mattie’s ninangs (godmother) who shared with me this set of videos called Baby Signing Time.  The video teaches babies to use sign language through colorful pictures, imagery and music.  It was love at first sign for Mattie.  You could see his face light up with delight as I play the video.  He would dance to the music, imitate the signs, and shriek and smile to his favorite scenes.  He would even ask me to play the video several times a day (He would rub his hands together signaling that he wants to watch “Baby Signing Time”!).

Knowing that Mattie may be speech delayed (babies with down syndrome are most likely to be speech delayed due to their hypotonic mouth and tongue muscles), I decided to introduce Mattie to the world of signs so that we could start communicating early on – even before he learns how to talk!  Through signs I can actually confirm that Mattie knows and understands a lot of words – something I won’t be able to realize if he were not signing since he does not know how to talk yet.  Through signs he can actually specifically show me what he wants!  He signs, “eat” when he’s hungry or when he wants a snack, he signs “cracker” when he wants his favorite rice puffs, “shoes” when I put on his sandals, and “grandpa” when he sees his Lolo.  

A growing body of research suggests that signing with your baby actually provides a myriad of benefits including early language and vocabulary development, reduced frustration and tantrums, and better communications skills.  I think sign language is a very powerful communication tool.  It certainly showed me that I have one very smart and amazing son! Who knows what more words he knows?  Maybe he understands so many words already but cannot sign and verbalize them yet.  I will encourage sign language as our primary form of communication in the meantime that he’s not talking yet.  As he gets better in talking later on, then I will slowly take away the signs and just stick to talking!     

What do you think about signing? 

Mattie’s Mom

Mattie's Ball Pool

Mattie does his physical therapies at home.  One of the disadvantages of doing therapy at home is our  house may not be fully equipped with toys or facilities necessary to aid Mattie improve his motor skills as compared to the therapy centers.  As such, I constantly think of ways to use available toys, furniture and other things to create obstacles for Mattie to use - to help him discover more about his different body parts and how to move them.

I read this really great idea from a blog on parenting and down syndrome at http://billandria.blogspot.com.  The writer of the blog suggested a very cost effective way of making your own ball pool  by filling a small inflatable swimming pool with a bag of 100 plastic balls!  Good thing Mattie received a small inflatable pool as a Christmas present!  Thus, I just had to buy a pack of 100 plastic balls from Toy Kingdom and made our very own ball pool!

Ball pools are great in helping Mattie build up his gross motor skills.  His therapist was ecstatic upon seeing our very own homemade ball pool!  She says it will help Mattie with his balance, reflexes, and stability.  It will also help him improve his body transitions and coordination as he figures how to go in and out of the ball pool by himself without bumping his head or falling on the floor.

 

Ball pools also help in refining fine motor skills as Mattie grabs and throws the balls in and out of the pool.  It also promotes sensory awareness as Mattie feels the 100 plastic balls surround and touch his body.

Mattie loves his ball pool.  He dives in and out of it everyday and throws all the balls out with a naughty grin.  We don't mind picking the balls up as it scatters all around the room.  What's important for now is Mattie is having a swell time playing not realizing that he's already working out muscles!




Mattie's Mom

Crawling and Tunnels

Mattie has become one very independent crawler.  Once he mastered the art of crawling, he began to explore and go to different areas of the room, checking out toys and other interesting objects.  I remember our doctor explicitly reminding us that Mattie needs to learn and be an expert at crawling before he learns to stand and walk.  Crawling teaches Mattie to use his stomach muscles and bend his knees, and these movements will prepare him for the proper way of walking.

To challenge Mattie's crawling abilities, I try to think of ways to make him crawl on more difficult or tricky areas like under a table and over pillows - chasing after him often work too. ;p  

Last April, Mattie received this really big gift for his birthday.  He was not quite ready to play with the big toy yet and so we kept it first - for use when he's a bit older.  The box that came with the toy though we could already use! It had just the right size that could fit and hide one small toddler!  Daddy and I thought that it would be perfect for Mattie's very own tunnel. 

 

Crawling in and out of tunnels can make it more challenging and exciting for a baby who just learned how to crawl.  I think it amazes them that they could actually fit and go through the mysterious box.  Mattie did not want to explore it a first - he was a bit hesitant to go in the small and dark hole.  But after a few prodding from mom and dad, he went in an began crawling in and out of the tunnel!

   

Aside form enhancing Mattie's crawling abilities, concepts such as going "in" and going "out" are introduced too.  It also introduces spatial awareness as he realizes that he can actually fit in the hole.

I wonder what the box could be used as next?  Maybe when Mattie gets a bit older and starts to role play and imagine, we could use the box as an airplane, or a small tent, or a space shuttle perhaps?  Any ideas?


Mattie's Mom

I Love Crackers!

Mommy said I hate using my hands.  When Mom gives me something to hold with my fingers, I always just toss them away and make them scatter all over.  Who could blame me when my fingers are so limp and droopy.  I have a hard time using them because I cannot control them properly and they feel as if they're asleep all the time!

One day, Mom gave me crackers to eat.  Instead of feeding me directly through my mouth, she placed it in my hand and encouraged me to feed myself!  It was hard and it's still is.  I dropped the cracker so many times before I finally got to bite it! But even though it was hard, I did not seem to mind since I love eating crackers so much! 

Mom said feeding myself is one big step to independence.  Eating crackers also helps me strengthen my hand and finger muscles!  It also challenges my problem solving abilities as I figure out how to move my fingers and hold the cracker as it gets smaller and smaller every time I bite into it.  Plus, it helps me improve my oral motor skills as lick, bite, chew, crunch, and feel the different textures scattered inside and around my mouth.  

Anybody want to have a cracker? 

Yum Yum!

Mattie


Note:  Please make sure that your babies are developmentally ready to handle these types of solid food.  A lot of times children with down syndrome take a longer time in developing oral motor skills - they may have difficulty in chewing, swallowing and may have sensory issues due to low muscle tone.  Also make sure that crackers or food you give to your babies are soft and will break into very small pieces in order to avoid any danger of choking.

Playing with Tissue Paper!

Mattie at 15 months, hates using his fingers to hold, pick up, or grasp things - especially when these things are small (no matter how attractive they are).  He refuses to use his hands to feed himself, nor does he like to hold his toys and play with them for a long time.  He usually just brushes all of them away with a swaying motion or grasps them and throws them away making them all drop and scatter everywhere.  Our OT tells us not to be worried as Mattie may still be in a stage where he's fascinated with the objects dropping or falling.  Our OT calls this "object permanence" or "cause and effect" where he's learning to see what happens if he let's go of the object, or if the object will continue to be there when he lets it go.  At the same time, Mattie at this stage is still developing his grasp, especially  his pincer grasp or his ability to pick up small objects (objects like raisins or peas).  While regular kids master this skill at around 9-12 months, Mattie will master this skill a little bit later.  I guess this has a lot to do with his low muscle tone.  With low muscle tone, fine motor skills such as skills using his hands and fingers are affected.  The development of Mattie's hand and finger muscles are delayed and they need to be strengthened as well.

With an effort to help Mattie enhance his hand skills, I try to give him some activities to encourage him to use his hands and fingers.  One of the activities which I think was a huge success was playing with tissue paper and pulling them out of the box!

For some reason, Mattie has this fascination with tissue paper.  Maybe it was the tissue's texture or maybe it was the awe of pulling something out of the box! Picture yourself in your baby's eyes, won't you think that it's like magic that something can come out of a box every time to tried to pull?  And so the never ending game of pulling tissue papers out of the box!  For Mattie, it was just fun and playing but for me, it was Mattie exercising his hand skills!

 

Learning how to hold things will enable Mattie to play and discover more about his surroundings.   Being able to grasp things is also his first step on the road to feeding himself! And guess what, as an added bonus, coincidentally Mattie learned how to feed himself with a cracker after a week of this tissue pulling exercise!  (See my next post: I Love Crackers!)


Mattie's Mom

Working on Sitting

 

This picture was taken when Mattie was 11 months old.  At this time, Mattie just learned how to sit on the floor without support.  He has also developed enough muscle strength and coordination to move in and out of sitting (from lying and sitting by himself), and has learned to sit well and balance himself sitting on the floor without falling.  Our therapist wanted to further strengthen Mattie's sitting abilities by giving him more challenging sitting exercises.  One of the exercises she asked him to do was sitting on a bench, just like what you see in the picture above.

Patricia C. Winders - P.T., in her book: Gross Motor Skills in Children with Down Syndrome, calls this the 90/90 sitting.  90/90 sitting requires Mattie to have his hips and knees bent 90 degrees.  Here he will learn to sit with his trunk up straight, hold his legs together, balance with his legs together and take weight on his legs with his knees bent. His feet will be flat on the floor and he needs to learn to actively use his feet to help him maintain his balance when he leans forward.   This sitting position, with legs positioned closer together, encourages Mattie to learn balance sitting on a smaller base as compared to sitting on the floor with a wider base.

Sitting on a smaller base is more challenging and difficult.  In this position, Mattie needs to learn how to hold his trunk up straight, because if he leans forward, he would fall off the bench. Sitting on a wider base or on the floor makes balancing easier as he only needs to prop his hands on the floor to feel more secure. 90/90 sitting helps strengthen Mattie's back and tummy muscles as he learns to use them for balance, and encourages him to hold his trunk up straight rather than having his back rounded and slouching.  Don't you think he has a pretty good posture?  Notice how he keeps his back straight as he sits on the bench? =)

To make the exercises all the more challenging and interesting, our PT added in reaching and turning while sitting activities.  This she said will help Mattie develop body and arm stability and control in preparation for fine motor skills.  She challenged Mattie to reach in different directions for toys while he was sitting on the bench.  By doing this Mattie learns to control the movement of his body while accurately reaching out with his arms.  He also develops better stability, and body strength as he uses his tummy and back muscles for balance.

 

I think this is a very good exercise.  Any exercise that would help Mattie strengthen his muscles and develop his balancing skills is good enough for me.  We all know that due to our children's hypotonic muscles, they need all the helpful exercises they can get in order to get stronger and thus do more challenging activities later on!  He's working on sitting here, currently he's working on pulling to stand and standing with proper weight bearing and posture.  Soon he'll learn how to cruise, and walk and run and even ride a bicycle!  Won't that be exciting?

Note:  Please supervise your child at all times.  He may fall easily until he learns to lift his trunk and balance.  It might also be better to provide your child with a bench that has just the right height.  The correct bench height would allow your child to sit on the bench with his feet flat on the floor and his knees bent 90 degrees.  Having a bench that is too high will make him be on his toes which will make him insecure and unstable.  Having his feet flat on the floor can make him work on is balance using a stable position.

Hello Sunshine!

The smile that makes our day complete =)

Mattie Turns One!

  

Matthew (Mattie) is God's most precious gift to us.  God has blessed us with so much that he chose us to be stewards of His precious gift.  I thank God that he gave us our little Mattie, entrusting that we will be the best parents for him.  Our prayer is for God to give us the wisdom to help Mattie grow up to be the person He wants him to be, and that one day God will use him for His glory.

To My Little Mattie, daddy and mommy love you very much.  You are such a blessing to us.  You enrich our lives everyday and give us joy that goes deeper than mere happiness. Love you Mattie!

Developmental Assessment

Today we went to Mattie's developmental pediatrician to have his 1 year developmental assessment.  His assessment showed the following details:

A. History: 2 episodes of pneumonia
B. Physical Examination: chest gurgling, hypotonia
C. Profile: Based on Griffith's Mental Development Scales
     Loco-motor: 9 months
     Personal Social: 7 months
     Hearing and Speech: 7 months
     Eye-Hand Coordination: 7 months
     Performance: 7 months
     Practical Reasoning: NA
D. Clinical Observations/Concerns:
     - good social skills
     - babbles
     - reaches and rakes
     - sits without support
E. Assessment:
     - Down Syndrome
     - global developmental delay
F. Recommendations:
    - continue early intervention with PT and OT
    - include feeding skills in OT regimen
    - Follow up in 6 months

Visiting the developmental pediatrician leaves me depressed and stressed every time.  Ever since Mattie's chromosomal test confirmed that Mattie has down syndrome, I have accepted, albeit painfully, that he will be have global developmental delays.  Consultations with the developmental pediatrician just reinforces this issue and it's the big GLOBAL DEVELOPMENTAL DELAY that's staring at me in the face all over again.  I know visits to the dev't ped should be helpful.  The dev't ped should be able to see what Mattie would need to develop and improve on, or what therapies we should start on or focus on next.  However with Mattie being assessed based on regular kids' developmental scales, he will undoubtedly always fall short.  This saddens me a lot and leaves me further with a lot of questions.  Questions like:  Are we not doing enough therapy?  Are the PT and OT exercises not done religiously at home?  Is there something wrong with Mattie's physical and occupational therapists?  Should I even be aiming for reaching the regular developmental scales?   Maybe we should work harder, more exercises perhaps? 

Why can't consultations be focused on the milestones or skills Mattie has achieved and portions on things to improve on? Don't you think it's better to hear something like "Your son has improved a lot since the last time, he's able to sit on his own, able to crawl, and pull to stand!  With a little bit more practice and exercise he can strengthen his muscles more and enhance his posture. Soon he can stand on his own and start walking!" Or maybe something like: " We're seeing delays here and there but that's expected, but I'm seeing lots of potential here and there so that's what we need to work on!" I just think that it would be better to focus on the positives than to compare ourselves with scales where we'll always fall behind.  But then again maybe I'm just a mom wallowing in bitterness.

What are your visits to the dev't ped like?  Please shed some light.

Mattie's Mom

A Bit of Learning and A Lot of Hugs!

Please bear with me and watch this video.  It's quite a long watch (3mins and 27 secs) but please please do take a look and tell me what you notice.

  

It is just the stage mom in me or is it Mattie beginning to sight read?  Did you notice that he begins to smile every time we get to the word HUG?  Is he beginning to recognize the word and so anticipate what comes next?  Whatever it is, I just love it when My Little Mattie smiles.  I think this is one more milestone worth celebrating!

As I do some research on several books and the internet, I happen to read a lot of good reviews about this reading program called Love and Learning.  It's a reading program specifically designed for children with special needs.  After careful consideration, my husband and I decided to try the first kit of this learning program and see if it works.  The first kit introduces letters and the sounds they make, and the associated word for each of the letters.  The kit is recommended for infants and toddlers to stimulate and improve vocalization and sight reading skills.  The program consists of a set of books, one book contains each letter of the alphabet printed on one separate page, the other books with the associated words and pictures for each of the letters.  The books are also supplemented by an audio CD and DVD that plays the sounds and videos of the letters and words in the books.

I know Mattie may be a bit too young for this learning material (after all he just turned 1!).  But I essentially wanted to start him on this program to 1. instill a love for reading (in addition to this, I also read to him a couple of other books during bedtime), 2.  introduce him to different sounds to encourage him to communicate and babble 3.  prepare him for sight reading and to familiarize him with letters and words (Children with down syndrome are found out to be very visual learners.  A lot of times they learn to read words before they can even say them!) and 4.  just to hang out, cuddle and have fun while we're learning.

I bet Mattie probably thinks that I'm just jabbering away and just making silly noises every time we do reading exercises.  I wonder if he is beginning to realize that these letters have meaning, or that words are actually made up of letters put together?  I wonder when the magical moment would arrive - the moment when he would start recognizing the words and begin reading them himself!  For now, the fact that Mattie sits with me all through out the session is rewarding enough.  While we wait for the magical moment, we will just have to consume ourselves with a lot of cuddling, a lot of loving, and a lot of HUGS.

Hugs to all,

Mattie's Mom

A Water Basin, Dad and Mom's Crumpled Pictures, and a Diaper Changing Mat

The Ultimate Motivators!

What is so special about a water basin, dad and mom's crumpled pictures and a diaper-changing mat? These are Mattie's ultimate motivators in learning how to crawl! It took us a few months to arrive at this new milestone. It took a lot of prompting and endless cheering from Mom, Dad, and Yaya (babysitter), strengthening exercises, and experiments on a number of toys that would work as bait, before Mattie finally got motivated to move and begin crawling!

In Patricia C. Winders' book: Gross Motor Skills in Children with Down Syndrome, she notes that the most difficult part in learning how to crawl is moving forward the first 1-2 feet. First and foremost, our kids need to strengthen their arms so they can pull their full body weight forward across the floor. Second, they need to figure out a way on how to coordinate their arms, legs, and trunk, and move them so they can finally nudge forward. We need to provide them with the ultimate toy or motivators in order to get them stimulated and begin crawling. The motivators are needed so that they work on moving forward to the toy no matter what they have to do with their bodies!  

We tried a lot of toys to motivate Mattie to crawl. I think I took out and tried all the toys we had kept in his toy chest to try to coax him into moving. I even bought this toy ball with a "self roll" function that lights up and sings various tunes, hoping that he'll go after and crawl to it. Little did I know that the simplest things like a water basin, a diaper changing mat and our crumpled pictures would do the trick (Note to self: Do not be teased by very convincing marketing ploys into buying unnecessary toys). But then again, maybe Mattie was just not ready to crawl that time when I was making him chase after the ball, or maybe there was something just a little bit more interesting with the water basin, the changing mat, and our pictures that motivated him into moving. I would like to think that it’s the latter.  

So what was so irresistible with the 3 magical things that made Mattie finally move?
1) The Water Basin: We filled the basin with water each time we lured Mattie into crawling after it. Mattie loves the sensation of water splashing against his hands. I think the thought of getting his hands cold and wet was enough for him to crawl after this bait.
2) Mom and Dad’s pictures: Everyday, I would show these pictures to Mattie to teach him the concepts of mom and dad. I would tell him: “This is mommy, and this is daddy” and would sometimes ask him to point to me which is mommy or daddy (And guess what by chance 70 percent of the time, he actually gets the answer right!) I guess it’s the familiarity with the pictures that made it irresistible for him.
3) Diaper Changing Mat: Those of us who grew up in the Philippines during the 80’s would be familiar with this kind of changing mat. This mat is colored blue on one side and pink on the other side, has a rubbery material, and has like a bubble wrap texture. Mattie has a thing for textures. Maybe the rubbery and bubble wrap material provided him with a feeling he couldn’t resist!

These were the things that made Mattie crawl his first 1-2 feet. Once he got the hang of moving, anything even a small cotton ball could lure him into crawling!

Here’s a video of Mattie crawling:

What are your ultimate motivators? Happy crawling!


Mattie’s Mom

Note: In the book: Gross Motor Skills in Children with Down Syndrome, crawling and creeping are defined differently as to those we currently use. To make my entry simpler, I’ve just used the term crawling to refer to both.  

Definitions:
Crawling: refers to your child moving forward with his belly on the floor, pulling with his arms and pushing with his legs.
Creeping: refers to your child moving forward on hands and knees, stomach up, in quadruped.

Medical Issues

Mattie the day out of the ICU

Mattie just turned 11 months.  In these 11 months, he has gone through countless consultations with different doctors - each with their own fields of specializations (10 doctors to be exact).  A week after Mattie was born, our pediatrician recommended we see the following doctors: a pediatric cardiologist for his heart, a pediatric endocrinologist for his thyroid, a developmental pediatrician for his over all developmental profile, a pediatric ophthalmologist for his eyes and a geneticist for chromosomal analysis and family counseling.  Thank God Mattie passed his new born hearing test otherwise, we would've consulted a pediatric EENT as well.  When Mattie turned 9 months, he was infected by severe pneumonia and bronchial asthma and was admitted to the ICU.  Here we had to get the help of a pediatrician for infectious disease, an intensivist, and of course our general pediatrician. On his 10th month, he suffered again from a relapse of pneumonia and asthma.  Although his pneumonia was completely treated, his asthma attacks did not seem to subside.  Our pedia suspected that his asthma could be caused by reflux and so suggested we see a pediatric gastroentorologist for clearance as well.  My son has seen more doctors in his 11 months of existence than I have in my 34 years.

In my first entry, I mentioned that Down Syndrome is a genetic condition that resulted from having the presence of one extra chromosome in some or all of the body’s millions of cells.  It is because of this extra 21st chromosome that every system in the body gets possibly "screwed up".  Below are among the many medical issues a child with down syndrome may encounter.  It is therefore important that we - parents be aware of the possible medical issues that may arise so that problems can be detected and dealt with quickly and appropriately. 

1.  Congenital Heart Defects - around 50%-60% of babies born with down syndrome have heart problems.  Common defects are found in the walls between either of the upper chambers (Atrial Septal Defect/ASD) or lower chambers (Ventricular Septal Defect/VSD) of the heart.  Sometimes defects will involve the entire wall between the sides of the heart (Antrioventricular Canal/AV Canal).  Some defects are minor and may close on their own after some time but some defects may require major surgery.  Defects are normally detected via 2D Echo.

Mattie had his first 2D Echo when he was 2 months old, and another follow up 2D Echo when he was 6 months old.  Fortunately, he is part of the other 50% that does not have a heart condition.  Although the cardiologist found 2 ASDs and a Fistula in the walls of the chambers of his heart, the holes were small enough that they were likely to close on their own. PRAISE GOD!

2D Echo Interpretation

2.  Thyroid problems - there is great likelihood that a baby with down syndrome will have thyroid dysfunction.  They can either have increased hormone levels (hyperthyroidism) or decreased hormone levels (hypothyroidism).  It is important that the thyroid dysfunction be recognized and treated immediately. If not treated,  the baby's intellectual development get even more compromised.  Thyroid tests need to be done every year.

Mattie's FT3, FT4, and TSH results on his new born screening test, and follow up tests on his 6th month were all within normal ranges!!!

3.  Eye Problems - eye problems are also very common with children with down syndrome. Most of them have cataracts which may require surgery, some are crossed eyed, they're either near sighted or far sighted, are susceptible to blocked tear ducts, and may have rapid eye movements.

I brought Mattie to the ophthalmologist when he was 2 months old and a follow up when he was 8 months old.  He was found to have a mild peripheral cataract in the right eye.  The cataract was found in the extreme periphery that vision is not affected (YEY!!!).  The doctor also noted that Mattie has very good eye contact (another YEY!!!).  He might have to wear glasses though when he reaches a year old.   

Findings from Eye Exam

4.  Hearing - many children with down syndrome have mild to moderate hearing impairments, have frequent ear infections, and fluid accumulations due to the structure of their ears.  Hearing impairments have to be detected at the onset thru hearing assessments so proper treatment and early intervention could be done.  If hearing is impaired, language development is severely affected.  It is also important that the ears get checked regularly for possible infections.

Good thing Mattie passed the hearing test which was part of the new born screening exam.  This was at least something that we did not need to worry about among the initial rounds of tests and doctor's examinations done during his first month. 

5.  Respiratory Infections - children with down syndrome are prone to upper respiratory infections mostly due to the anatomy of their upper airway which include the ears, sinuses, nose, mouth, and throat.  Most kids have a flat nose that make nasal and sinus passages smaller thus contribute to more frequent colds and sinus infections.  Some kids have weaker immune systems which therefore make their bodies more susceptible to bacteria and increased upper respiratory infections. 

Mattie has had two episodes of pneumonia.  His first pneumonia was complicated further by bronchial asthma. He was admitted to the ICU as he had very severe pneumonia and was on the verge of upper respiratory failure.   All the resident doctors and nurses were on alert as Mattie could be intubated and be put on a ventilator at any time.  After a lot of prayers from family and friends, most especially from our pediatrician (who even organized a prayer brigade for Mattie's healing), Mattie responded to the medicines and his pneumonia and asthma were controlled.  We stayed in the ICU for 4 days and stayed in the hospital for 6 more days for a full recovery. 

After a month, Mattie again was infected by pneumonia.  Although his pneumonia was completely treated from a round of very strong antibiotics, he cannot seem to snap out of his asthma.  Our pedia is now looking into aspiration as the possible culprit for his pneumonia.

6.  Gastrointestinal Problems - babies with down syndrome may have birth defects that involve the GI Tract (mouth, esophagus, stomach, and intestines).  Due to this, some may have trouble with spitting up, vomiting, poor feeding and constipation. 

A common problem may also be reflux or GER (Gastro Esophageal Reflux), where that contents from the stomach move back up to the esophagus.  Due to the decreased muscle tone found in babies with DS, stomach contents move back up the esophagus, causing indigestion, colic, and vomiting.  In some cases, reflux may result in milk or stomach contents trickling into the airway thereby irritating the lungs and cause aspiration pneumonia.  Aspiration pneumonia is an infection of the lungs due to the germs from breast milk or formula. 

We are looking into the possibility that Mattie may have a problem with reflux due to his two episodes of pneumonia and never ending attacks of asthma.  He may have to undergo an endoscopy procedure to check if he is really suffering from GER. Currently Mattie is under medication to control reflux, hoping that the medicine can help him until such time that he outgrows the condition.  We will also be scheduling a swallowing assessment in order to see if Mattie can swallow fluids or food efficiently.  Reflux may also be reduced by proper positioning while feeding (keeping baby's head above stomach during and after feeding), and thickening of formula or breast milk by adding cereal. 

7.  Developmental Delays - children with down syndrome experience global developmental delays.  All areas of development are hampered due to the extra chromosome.  These areas include cognitive skills, communication skills, gross and fine motor skills, social and emotional skills, and self help skills.  It is also important to note that not all children with down syndrome are the same.  They have differences in attitude, character, and personality and their range of developmental disabilities (due to a lot of factors such as physical, medical and genetic issues) differ as well.  It is therefore important to also consult a developmental pediatrician who is knowledgeable in the overall development of our kids.  Other doctors have specializations toward the diagnosis and treatment of specific diseases while the development pediatrician is more concerned with helping parents assess the child's developmental progress.  They will be the ones who can guide us to the correct early intervention programs applicable to the abilities or readiness of our children.

We've consulted with a developmental pediatrician when Mattie was less than 2 months old.  The doctor noted that at 2 months, Mattie was cooing and was getting startled to sounds, has his head to the side (rather than mid line) had a good suck, had fair palmar/plantar grasp, had fair rooting reflex, and hypotonia.  She recommended that we go for early intervention services to have proper feeding and handling skills / positioning techniques, and this early to start with gross motor exercises. We will be visiting the dev't ped again when Mattie turns one.

8.  Genetic Counseling - I think the geneticist's role is really for the parents more than the child.  The geneticist will be able to provide counseling for the couple with regard to the chances of having another baby with down syndrome.  She can also find out exactly what type of Down Syndrome the baby has(Trisomy 21, Mosaicism, and Translocation) from looking at the baby's karyotype and provide the appropriate advise needed. 

Mattie's Karyotype

Mattie has Trisomy 21.  According to the geneticist, this type of down syndrome is completely accidental. Neither my husband nor I have caused this to my child.  Nothing I did or did not do before or during my pregnancy caused Mattie to have down syndrome.  Scientists have investigated the possible causes of DS for decades and so far has not determined its exact cause.  The only possible cause that could increase the likelihood of having a baby with DS is the mother's maternal age.  Chance increases as women age, and the risk gets even higher for mothers above 35 years old.  However it is important to note that a lot of babies with DS are also born to mothers under 35 years of age.  Once you have a child with DS, the risk of having another child with DS is 1 in 100.  This risk further increases after the age of 40.

All these doctors visits and consultations can be exhausting and exasperating for a first time parent.  Our first few weeks and months with Mattie were packed doctors check ups, blood tests, 2D Echos, and X rays.  There were even times when we go to the doctor two or three times a week for check up.  In addition to this, not only do we have to worry about his health, we also have to worry about scheduling physical, occupational and later on speech therapies for his overall development. 

I wonder what Mattie feels of all these?  If I'm exasperated, what more him who is the one that is constantly being poked by different doctors, and being inserted by countless needles for various blood tests? He has definitely gone through a lot.  I realize now how strong a fighter my son really is in his first few months.  I see how children with special needs fight for their lives, and that they should not be looked down upon but instead be given with the highest regard because of what they have been through.  I realize how I have been taking for granted the blessings of having a healthy baby, the gift of a body free of complications and disease, and senses that could hear, feel, taste and see. 

At the end of the day, I thank God for giving me Mattie.  He gave me a baby that could erase and wash away all these medical issues and pain with a single smile.  I thank GOD that he leads me to the right doctors and therapists that could help my son be the best he could be and  I thank God that there is available support for parents like me and that I am not alone in this journey.


Mattie's Mom

I love it when...

when daddy holds me in his arms

when daddy cuddles me when I cry

when daddy makes me laugh

when daddy takes me out to the bookstore even if I can't read yet ;p

when daddy tries to make me sleep but falls asleep before I do =)

when daddy showers me with kisses!

when daddy tickles me!

when daddy takes me out to see lights

when daddy and I hang around

I thank God you're my DAD!