New Bike!

It's not an actual two-wheeler, it's called a Strider or balance bike. It doesn't have training wheels, but it doesn't have pedals either. It's a teeny-tiny bike that Pope uses his feet to propel forward. As he gets the hang of it and learns to balance, he can lift his feet and coast a bit. It's something fun, but is also a great therapy tool as Pope needs to work on building more core muscle strength to combat his hypotonia. It's going to take some practice, but he'll get the hang of it! :)

All I want for Christmas...

We had a great time playing around at Sam Ash today while Mike looked for a new synthesizer... Pope found an electronic piano and he fell in love... the cost: $3500! Good luck, Pope!

A new way of looking at things

With all of the amazing progress that Pope has made in the last 9 months, it's easy to forget that Pope is, and always will be, a blind child. It's been easy to put his blindness on the back burner. For starters, Pope couldn't see anything at all when we brought him home in March. But thanks to the very skilled hands of Dr. Alex Levin at Wills Eye Hospital, Pope's vision was restored in one eye this past June. The important thing to remember is that his new vision isn't 20/20, it's more like 20/400 with his glasses. Without them, his vision is nothing more than light, color and motion. He can't see any details. Recently, Pope's TVI gave me the opportunity to try on goggles that simulated the way Pope sees the world. The right goggle was completely blacked out, since Pope does not have a right eye, the left goggle simulated 20/400 vision, probably what Pope might see on a good day, with his very thick glasses. The photos below demonstrate a scene with 20/20 vision and the same scene with 20/400 vision.

As you can imagine, the simulation experience was very eye opening (no pun intended!) It really helped me better understand why Pope does some of the things he does, like bringing objects and books very close to his eye.

Pope has learned the classroom and the house so well, that it's easy to forget that he really, really needs a cane when he's in an unfamiliar place. There have been many times, over the past several months, that Pope has fallen or run into something. Pope also has no depth perception and he can see nothing to the right of him, so we must constantly be looking out for that too.


It's been easy to overlook Pope's blindness because we've put so much into his other developmental delays. His speech is so far behind. He's social skills are way behind as well. But as he begins to talk and become more social, we need to face the fact that his vision will not change. It will never get any better than it is today. And Pope will have to learn to cope... we all will.

Speech!

I didn't want to leave the house this morning. I didn't want to leave Pope. From the moment he woke up, he was so ENGAGED! He said "Good morning" and "Hi Ernie" (to his Ernie doll, of course). As I got him dressed I said "We love Ernie..." and he repeated it. As he was going down the stairs his carried Ernie and said "Ernie at my school" (he has a small Ernie doll at school that the teacher uses for positive reinforcement), then he stopped at the Christmas tree and said "lights". I coaxed him away from the tree for breakfast in the kitchen. He looked at the table already prepared with scrambled eggs and said "Yeah! Eat!... Yah, eggs!" When Mike came in I said "Hi Daddy." and Pope repeated it. I hated leaving for work this morning. I really wanted to see and hear what else Pope had to say!

World's cutest...

The Pope is such a cute kid... and the Princess is the best big sister ever! Am I biased? You bet!

Merry Christmas! And a Holiday photo!

During a year that's been fraught with twists and turns... I am happy to report my pleasure with this year's Christmas photo... I only hope such luck in the future...