Below is Mike’s most recent Facebook update:
Hello Friends and Family…
I just wanted to give a quick update on Marcus…
Marcus has been doing well…Really well!!!
He ‘started’ crawling on Monday, meaning that he was able to move himself about 3 or 4 feet to go after one of his favorite toys. He’s not in the ‘All Fours’ position. He’s more in the soldier belly crawl position. The reason is that his arms are not quite strong enough to hold himself up and he hasn’t really developed enough strength and balance in a kneeling position. But we’re working on that right now. So his arms are just by his side as he primarily pushes with his legs. But it’s just so crazy when we first saw him do this, purposefully, to go after something he likes and sees. We just need to build a little bench press so he can start benching…=)
Today our physical therapist had Marcus lean on our ottaman to stand. Marcus put his hands on his knees to balance himself and then eventually was standing, leaning on the ottoman, for about 10 minutes. We caught the last few seconds of that one on video…
This morning he actually ‘signed’ “PLEASE” to Sue with purpose and with much vigor. He just wants his food. He’s been feeding himself more but if you’re around he’ll get lazy and expect you to feed him.
All of these developments are very commonplace for a normal child, but for us it’s like the craziest and most exciting thing. It helps us to open our eyes and to remember that all that we have, from the smallest thing to the biggest thing, is all God’s grace. We’re definitely learning to slow down and enjoy every little moment we have with Marcus. Man, we’re just so blessed to have Marcus and we love him to death!!!
On aside note I ran across this example of what a person with Retinitis Pigmentosa may be seeing. So this could be our little Champs perspective. Again, this is just an example. Could be better, could be worse…
From what I’ve read and heard from our therapists children with this disease usually learn to work through their lack of vision to get by on a day to day basis. Marcus definitely seems to be working his visual situation well. He knows what he wants to look at and let us know when we’re in the way (while watching his favorite TV show ‘Peep and the Big Wide World’). He knows when mommy or daddy or the sweaty Audrey enters the room. It’s humbling to think, “YES, my son sees my face and wants to come to me.” Even for this small thing, we’re so thankful knowing that there are children with this disease who have been born completely blind have never seen their parents.
So if you run across Marcus and he looks at you and then turns away, there may be another issue…=)
Yes, we are so excited for all these latest achievements! Tonight at dinner, he signed “Please” the most he ever has…with both hands and a huge grin too! One time, I prompted him by asking, “What do you say?” and then he did it. Is that high level communication or what? We knew for a while that he could do it, he’s just the most stubborn little rascal we know and now he’s finally doing it when WE want him to, not just when HE wants to.
There are so many ways God has blessed us ever since Marcus’ latest diagnosis. We will eventually share with you more of the details and how in the world He has given us more joy than ever. But we’ll leave that for another time. Instead, I wanted to update you with some recent pictures.
First of all, THANK YOU for all of you who prayed for Marcus on the morning of his ERG. It was a long drive up in the rain to Hollywood and many more hours of waiting after that. But Marcus did GREAT as you can see from the pictures. Our little eater who normally gets fussy if he doesn’t get breakfast in time didn’t fuss or whine one bit even though his first meal that day was 20 hours after his last one the night before. Only by God’s grace and through your prayers.
Audrey was super cooperative too, and didn’t complain at all. But she got really sad when they started putting the drops in Marcus’ eyes because he was protesting so much. She’s protective of her little man. She also gets into fights with the nurses at his pediatrician’s office because she doesn’t want them to give him his shots.
Mike took her ice skating recently and it was pretty hilarious. Mike eventually took off his sweatshirt because he was sweating up a storm. It was no easy thing carrying Audrey around and around on the ice! She didn’t last the whole session (which cost an arm and a leg), but it made for good memories!
I leave you with a videoclip that makes me happy. I LOVE it when the kids laugh together.