Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.



Friday, October 25, 2013

Perspective

I've done a pretty lousy job blogging about Down syndrome this month, mostly because I'm too busy playing with my baby who has Down syndrome!  Anyway, this topic came to mind this morning and I thought it deserved a few minutes.

Perspective changes a lot of things.  Sometimes it's comparing our own situation to someone else's, or comparing a time in our lives to a different time in our lives.  Sort of the "hindsight is 20/20" thing.  I'm thinking back to a time in my life, almost one year ago.

I'd had a routine blood test while I was pregnant.  I didn't even think about the test results and wasn't nervous about them at all.  I'd actually forgotten about it...until my doctor called.  Personally.

I've never, in any of my pregnancies, had my doctor call me personally about test results.  Usually the conversation goes like this:  "This is Tammy, from Dr. Versage's office, calling to let you know that your blood test is normal.  Have a nice day."

This voicemail was more like this:  "This is Dr. Versage and I have your test results.  Some things came up, will you please call me back as soon as you can so we can discuss them."





Of course I hit Google immediately, even as I dialed the doctor's office.  As I waited on hold, I found that my routine blood test covered Trisomy 13 and Trisomy 18, both of which are nearly always fatal.  



As the possibilities swirled through my mind, I was terrified that she would say my test results came back high for one of those trisomies.  I shook as I waited for her to come to the phone.

And then... "Your test results show a higher than usual level of hormones, indicating the possibility of Trisomy 21.  That's Down syndrome."


I didn't hear anything else after that point, as utter relief poured through me.  I didn't know much about Down syndrome, but I knew most babies didn't die from it.  I would still hold my baby in my arms. 

Perspective. 



.

Monday, October 14, 2013

A Miraculous Photo

When Cade was born, blood was taken from his umbilical cord.  A lab analyzed this blood and sorted his chromosomes.  Here is a photo that I consider miraculous:  Cade's chromosomes.

 


This photo is a karyotype, basically a mapping of the chromosomes.  This map tells us that all of Cade's chromosomes are normal, or typical, except for #21.  There are three copies of #21, resulting in "Trisomy 21", commonly known as Down syndrome. 

Here's what that chromosome looks like today:

6 months


Saturday, October 5, 2013

Our favorite toys, 4-8 months

Here are some of the toys that Cade likes best between 4 and 8 months.


Bright Starts Rattle and Shake Barbell Rattle - the thin bars between the rattles are perfect for gripping.  The whole rattle is lightweight enough that it's easy for him to shake.  This was recommended to us as a great choice and sure enough, they were right. 









Manhattan Toys Ziggles - Cade loves this toy because of the little rings.  They're just the right size for him to grab and then every movement he makes produces a jingle or rattle.  I often hang this one from his car seat because it's long enough for him to reach and there's enough going on to keep his interest for quite a while.




Fisher-Price Super Star Classic Stacker - With lights and a not-too-annoying song, this stacker has been a favorite in our house for the past few weeks.  I can balance the smaller two stars on top of the stacker and then Cade's touch will cause them to fall and start the music.  He loves it!  This is one that we use a lot while we do his sitting therapy. 







Manhattan Toy Winkel - after a zillion moms from my online birth club raved about this toy, I caved in and bought it.  Cade loves this thing like it's his very best friend.  The loops are small enough that they're easy to grasp and it's so lightweight that he has no trouble holding it.  The loops are also great for mouthing, so this has really helped him learn to bring his hands together at midline, then direct the toy into his mouth.  Our OT saw this the other day and she said it's one of her top recommendations for babies.  I can see why!


This list is a work in progress, so I'll be adding to it over the next few weeks.  For now I'll get this posted for part of the 31 for 21 series. 

Friday, October 4, 2013

What is therapy like?

In my "before Ds" life, I knew a few families who had some sort of therapy for their kids.  And I always wondered, how do you do therapy on a baby?  Especially occupational therapy...are they training for a job already?

For today's 21 for 31 post, I thought I'd show a glimpse of what therapy is like for Cade.

Cade has an occupational therapist who comes to our house twice a month.  Her name is Elaine and we really like her.  The first time she came, Cade was only 5 weeks old.  On that very first visit, she explained about the palate in the mouth, how it forms, and how its formation effects the rest of our lives.  The way you eat, the way you drink, how clearly you'll be able to talk, etc.  Cade's first set of therapy exercises were oral.  I massage the roof of his mouth in a certain way 3-4 times a day.  I rub his gums and teach his tongue how to curl for proper swallowing.  (This usually falls under speech therapy, but our OT also does ST work.)  Here's a fantastic video of a dad doing the same oral exercises with his daughter.

Around 9-10 weeks we started working with a peanut ball to strengthen his legs and core muscles.  By placing his arms in the proper position, it also helped teach him to raise his head and chest at tummy time and prepare him for crawling later on.


Then we moved on to other forms of exercise to help strengthen core muscles.  Cade has spent a LOT of time on his tummy. We found a few toys that really helped make this more fun.



Now that Cade has mastered tummy time, lifting his head, and propping himself up on his elbows, we focus more on the muscles needed for sitting.  That was one surprise for me: that each muscle group is conscientiously worked until the goal is achieved.  With our other babies, they didn't need our help learning to sit.  We propped them up a few times and then they did it on their own.  Cade would eventually learn on his own, too, but if we can give him a head start then he'll learn other things, like crawling and standing, more quickly.

 

 
My lovely dirty-mirror photos of Cade.  Taking the pics in the mirror is the only way I can take photos during our therapy!   Here he's working on sitting while playing with a new toy.  All of the lights and mirrors are part of the visual stimulation mentioned in the Caesar's Palace posts.


He's working on rolling right now, too.  Technically, he's rolled from both tummy to back and back to tummy, but he doesn't do it intentionally yet.  Almost there!  Light-up toys like the stacker and small toys that he can easily hold are his favorites right now. 

Thursday, October 3, 2013

31 for 21

October is Down Syndrome Awareness month and lots of bloggers team up each year to write a blog post every day for a whole month to raise awareness, banish myths, and show off adorable kids!

This year, it's my pleasure to participate.  My Cade has changed my life (as any child added to a family does) and I want everyone to know that he's pretty much amazing!

What's 31 for 21?  Down syndrome is what occurs when there are three copies (instead of two) of the 21st chromosome.  It is also called Trisomy 21.  October has 31 days.  So 31 blog posts to raise awareness for 21.


 
 Today is day 3 so I'm joining a tad late.  I won't bore you with catch-up posts, I think I'll just start fresh tomorrow.  Will I make the 31 (or 29) posts?  Hopefully, but maybe not.  If you actually read any of the posts, will you know more about Down syndrome and what it's like to raise a child with Down syndrome?  Absolutely. 

So please, read along.  We'll enjoy the journey together.