Wednesday, May 23, 2012

Keywords: Ultrasound baby with Down Syndrome

I write and post pictures / videos to this blog for friends and family who want to catch a glimpse of some of our activities and accomplishments.  I'm hardly a high profile blogger.  But, an added benefit of this blog is that I get to show the world that our life, which happens to include a child with Down syndrome, is full and happy.  It's kind of fun every once in a while to look at the "stats" on my blog page. One of the "stats" show the referring websites and google / yahoo searches that lead to your page.  I'm always amazed that the top searches that refer to my page are from the picture of Mason's ultrasound when he was 12 weeks old in Our Down Syndrome Story.   I imagine someone just finding out that their baby might have Down syndrome.  And I remember how I felt when that was me.  Scared ... searching for answers.  Googling everything I could think of, hoping it would lead me to the conclusion that NO, my baby does not have that extra chromosome.  Ultimately, we know how my story turned out.  We got a beautiful baby boy with a little something extra.  I hope when the googler sees my blog,  they think, just for a second  that  their worst fear isn't really that scary.   That if their child does have Down syndrome, their life will still be full of love, holidays, activities, laughs, vacations, sibling games and rivalries, and accomplishments.   So, here it is again... our little boy at 12 weeks gestation:


And here he is now ... almost 4 years old.  Full of life. So happy.  And healthy.   We can't imagine our life without this little guy.


I also wanted to take the opportunity to revisit some of the feelings and fears we had when we got our prenatal diagnosis and my current thoughts on them. 

1.  How much money and time would we spend in hospitals?  Mason was discharged from the hospital 2 days after he was born.  The same timeframe as our first "typical" son.  He was perfectly healthy.  Heart, lungs, intestines .... nothing special or different there.  After that, it was mostly preventative appointments, including the ENT and geneticist.  Whenever Mason got a cold, it would go into his sinuses and lungs.  For the first three years, that was the bulk of our medical "issues."  Then we found out at age 3 that Mason had developed Celiac disease.  Once we implemented a strict gluten free diet, it is completely under control.  And Mason adjusted like a champ.  Has never asked for his beloved Goldfish again.  A couple of months before Mason's 4th birthday, we found out that Mason has been aspirating liquids his whole life and we never knew it. For three months, we thickened his drinks while undergoing therapy to strengthen his larynx.  It cured him and now Mason is back to consuming all regular thin liquids!  We have PT/OT (alternating) once a week and that about rounds out our doctor and therapy appointments.  Between insurance and Medicaid, most of it is covered and we do not pay much out of pocket. 

2. Will he talk and be able to communicate with us?  Will he be able to attend daycare / school?  YES!  Mason has always been pretty verbal, speaking his first word ("ball") before he was one.  We did teach him some sign language to bridge the gap when his language lagged behind. Now,  at almost four, Mason speaks in 4-5 word sentences and his language is blossoming and growing every day.   Mason has attended daycare and preschool with typical peers since he was 4 months old.  He also attends the county's special education preschool and we feel that it is a good mix for him.  Everyone has always been embracing and supportive of having him in their school.  

3.  What will our other children think?  Will we have enough time for everyone? This was one of our biggest worries.  And now it is the least of my worries.  In fact it just seems silly.  Owen loves his brother and is beyond supportive of him.  Owen understand that Mason learns at a different pace from most kids his age and encourages him each day.  They are best friends and mortal enemies ... just like all brothers!  Mason loves to make our newest little girl laugh.  Of course they do have some typical sibling sharing issues, which makes me smile more than anything!

We've learned a lot over the past 4+ years.  About Down syndrome.  About patience. About being a family.  But, mostly, our life has been pretty typical.  Because children with Down syndrome really are more alike than they are *different*.