Tonsils Begone

The sleep study Wade had done in April indicated that he has moderate obstructive sleep apnea.  The recommendation was to remove his tonsils which have always been borderline large, especially in comparison to his small airways.  

So Tuesday was "Good-bye Tonsils Day".

Waiting for the cotton candy sleepy medicine.

Before tonsillectomy---happy!

After tonsillectomy--not happy!

At home--before Cousin Kari came to visit.

At home--after Cousin Kari!  Much better!

Playing doctor with the new medical kit from therapist friends.

Yes, he has a heart!

Tonsils versus no tonsils

Hurting again!  

Yogurt pops from a kind auntie help to make life bearable

. . . even when you fall asleep before you get started.

Dynamic!

I am enjoying all the wonderful words I am hearing from Wade the last while which he puts together in ways that just tickle my funny bone.

Our music therapist has started using the Music for Little Mozarts piano course with Wade.  It incorporates the adventures of Beethoven Bear and Mozart Mouse along with music concepts and Wade is LOVING it.  He learned the dynamic signs forte (loud) and piano (soft).  

One evening I was talking to Chris in the living room while Wade got ready for bed.  In the background I heard Wade saying something very loudly, but I ignored him for a bit while I finished talking with Chris.  When I finally went to see what Wade wanted, he said reproachfully, "Mom!  I was forte, LOUD!"

(Yes, yes, I KNOW, dear!!!!)

In our other summer adventures in learning, we finally got our Numicon Math Kit 1.  Down Syndrome Education International recommends using this math with our children.  Numicon was not originally developed as a special ed curriculum, but I've been in contact with a special ed teacher and researcher from Virginia who has had amazing results using this math with her students.  She is currently doing some research projects that will evaluate the effectiveness of Numicon in comparison to other math programs for students with disabilities and math difficulties.  Wade and I are eager to get started learning more about using it!

The summer writing practice continues.  

And so do the oral motor exercises.

Even for Murphy.

The Graduate

Wade graduated from his Bible Play School Pre-K class last week.

Next in line!

Posing with teachers.

  Celebrating with his best friend Bryan.

Performing at the program.  Wade is the letter S in J-E-S-U-S.

Back home.  Big brother swiped the outfit.

Phantom of the opera...or something.

Summer schedule coming up!  Stay tuned.

Adam Wouldn't Approve

...And then there are days

when you just don't care what everyone else thinks

and you name your dinosaur "Frog".

Bionic Boy

Dinosaur eggs...

and a Purple Dinosaur Bridge...

and the Sleeping Green Monster...

What could be next?

Um....this is starting to look ominous.

Oh, no!  They turned him into a robot!

And then they said, "Good night!  Sweet dreams!"

The American Academy of Pediatrics now recommends that all children with Down syndrome have a sleep study done by the time they are 4 years old.  So Wade had his done Friday night.  How you can have that many wires coming from your head, face, legs, chest, and big toe and still have anything that resembles a night of sleep is a wonder to me!

But he did!  

Daddy stayed all night with him and said he was sleeping within 10 minutes of crawling into bed.  

Now we are waiting on the results.  Apparently, a rather high percentage of children with Down syndrome have problems with sleep apnea.  We have questions about the quality of Wade's sleep at times.  He goes to sleep quickly but then sometimes tends to wander out of bed and fall asleep again instantly in odd places.  Why does he get out of bed when he's obviously still very tired?  We don't know.

A Perfect World

I dislike intensely the politics of most groups, secular and religious alike, when it comes to issues like abortion.  Behind the name calling and finger pointing of both sides, somehow in the heat of the argument, we seem to quickly degenerate into the land of the inhumane.  And no one benefits from that.

So, most of the time, I would rather allow this blog to be simply the story of what one family is learning, existing for those who will find it when they need it the most.

But....

....there are times when I feel the urgency of a message that must be heard because it is not only the message of an extra chromosome, but is also the heartfelt cry of us all.

Please don't destroy me because I am not like you.

This week Kurt Kondrich has written a thoughtful article entitled "Eugenics as a Human Right?"  As you read it, can you help but ask yourself, "When will they come for me?"

In the meantime, while you're thinking, take a detour over here "In Honor of Carissa" and just for a moment allow yourself to imagine: What if everyone thought like Carissa?  Would the world be more, or less, perfect?

Picture This

I'm hiding, I'm hiding, and no one knows where...

'cause all they can see are my hands and my hair!

What do I do with this extra button?  It's been like this all day!

Flying....

....high.

Here comes the pitch...

...off with his head!

Let me try that trick!

The hat says it all.

For some reason, the lid won't go shut on this box.

"You have to learn to think outside the  box," everyone says. 

 But there's something to be said for thinking inside the box too.

Miss Muffet is no longer here...

...but the Four Guys still are!

We'll never outgrow Dr. Seuss...

....or sweet nothings!

See you....

...later!

If You Could Go Back

After we had spoken to a group of medical students, one of them asked, "If you could go back to before Wade was born, what would you tell yourself?"

Here are the answers--from us and from families everywhere, who know now what we didn't know then.

Play Date

Oh, look!  A pretty girl! 

Let's play!

I like her!

I think she likes me too!

Yep, pretty sure!

Oh, wait!  There's another girl!

And she's got a phone!

I'd better make sure she has my number...

...so she can text me.

I went home and tried to text her back....

...but somehow, it didn't work.

Guess I'll delete.