Friday, May 3, 2013


I have been learning so much about Blake lately.  And I love it!

The poor doctor's/therapists that are at all of our appointments probably get tired of my questions.  But one thing I've learned is to question everything. Unfortunately, as I'm getting further into this life of mothering two children with special needs, I have learned to question and fight for everything.  So as a result its my default mode now...

First, we decided to get Blake some SMO's to help his hip mobility, help him put his body weight in the balls of his feet, and not his heels, and to provide an arch support for his flat feet.  We tried hip-huggers (neon purple spandex tights that have the legs sewn together) at night and have been doing lots of crawling exercises to help stimulate hip mobility and stability.  Which have helped to some extent...but we felt the ankle braces would be the boost he needed to help his walking.  So when I can keep him out of mud puddles before we have to go anywhere, he wears them.  They add 30 minutes to our prep time before leaving now and I have to use a shoe spoon to maneuver his shoes over his heels--but he is running with bent-legs now...(he doesn't do the stiff-legged toothpick trot across the grass anymore--even though that was more entertaining to watch) He runs like a big kid! And is keeping up with Autum better...much to her disgust! 

We then went to an Ear, Nose, and Specialist to have Blake's ears checked.  He has repeatedly failed his hearing test at school. And his orphanage medical papers described significant hearing loss in his left ear.  So we wanted to make sure there wasn't anything else going on.  We found out he has fluid behind his ears, which is highly common in kiddos with DS.  Small ear canals.  So, we were talked into having his adenoids taken out right away to avoid this situation.  But after some thinking and fear on my part, I called it off.  We are headed to the Down Syndrome Clinic at Children's Mercy Hospital in Kansas City in a few weeks, so I decided to hold-off any surgeries, etc. until then.  We'll get the official decision from the experts. I want to make sure he doesn't need his tonsils out or any other procedures done first, and we'll just do them all while he's under anesthesia.  Which is risky business for kids like Blake. 

Anyway, hoping my mommy gut is right there.

Then, we went to have his eye's checked.  I had some concerns with his depth perception.  And with the use of his right eye and right side of his body.  He seems to trip more to the right side.  Or run into objects in his right depth of vision.  He also runs/walks/plays with his right arm hugged into his body and uses his left arm for movement and balancing.  So in his doctor appointment, when we covered his right eye he was able to track everything, point to objects, and had no frustrations.  As soon as we covered his left eye, he went berserk trying to uncover his eye with my hand.  He refused to point at the objects, began to cry, and tried to turn around so I would hold him close as in fear. This happened over two doctor's appointments.  After I learned this at our first appointment, I began to observe more closely how he 'saw' the world.  When he plays with puzzles, he turns his head to the right so he can use his left eye to see and assist his right eye to work.  I also have realized he doesn't use his vision for fine motor skills.  He uses his mouth and his hands to feel his way.  Again, with puzzles, he doesn't always look at the puzzle to fit the pieces together...he puts the piece in a hole and tries to jam it in with his hand..while looking elsewhere.  Same with using his pincer grip...he doesn't look to what he is doing or grabbing for...he just shoves it around with his hands or mouth until he gets it in his palm.  So we have some work to do with helping him use his eyes...and get his brain to recognize his right eye.

So today we decided to get the kiddo some glasses.  They will be  prescription and we will slowly work to shade in the left side with clear fingernail polish to force him to use his right eye.

I swear he looks like Huey, Dewey, and Louie know...Donald Duck's grandsons...haha! Can't wait to get a picture of him wearing them.  Or at least hope he keeps them on.

But again, I'm learning so much with this little man.  And enjoying every minute of it!  I can't wait to see what we learn next.
So that's a 60-second wrap-up...keep you posted with pics later.
Autum seems to think Leah stinks during their cheerleading stunt practice!

Autum is just a little too fluffy for Leah's throwing/stunt strengths!

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