Justin Update

Some things that are up with Justin:

• Here's a picture of Justin taped by his PT. Actually two pictures, she did front and back this time. It seemed to do what it is supposed to do, which is give his muscles more "input" to get them to work right. The tape stays on for up to 4 days, which works well since PT is Thursdays and OT is Monday, so he gets tape Thursday and we remove it Monday evening. It can go in the bathtub and swimming with no problem (but heat makes it stick more, so NO drying it with a hairdryer!) Justin doesn't seem bothered by it. We will remove this set tonight, and this is the first time we have done the stomach taping, which happens to cross his belly button, and he has quite the outie, so I wonder how that will be affected. More on that later...

He has the tape on under the washcloth. On his BACK, not his head!




• We are having HUGE food issues! Every day it is a fight to get something in his stomach. The only things he really eats consistently are his breakfast of cereal, fruit, and milk (we try to feed him one liquidy meal to make up for his drinking problem- yes, that's what we call it), yogurt, and applesauce. Not really enough to call it a balanced diet. Some days he won't take anything off a spoon, other days he won't pick up anything off his tray, other times he screams if we try to put anything in his mouth at all, and he wants to examine it from every angle to determine if it's worthy to be consumed. It was hard to give Randy instructions for feeding this weekend while I worked. So he mostly ate yogurt and applesauce. Very hard when a child is taking harsh medicines. I learned the hard way on Friday that I should take the "take with food" warnings serious on Justin's antibiotic. (The first round of meds from the urgent care clinic did not work so we had to go back to the dr. when we returned home.) And I also learned that if your child acts at all sick, do not feed him blackberries. Purple is not pretty color when it comes up... Friday I fed him broccoli and he decapitated every piece and loved it! Won't touch it now... Any ideas? I am getting desperate!

Examining the broccoli before consumption...

The remainder in his bib...Watermelon, broccoli, and water.

• Justin did great swimming in Phoenix. He rode with my mom on the pool noodles and jumped and really pushed with his legs. Really good exercise! His legs seem to be stronger than his arms, so I hope the taping helps improve that.

And I forgot to mention that Travis got a water gun in Phoenix. So much fun for him!

• I cannot say how how truly wonderful Travis is as Justin's big brother. He is always trying to teach him things, share his toys, sing songs, and generally involve him in everything. This morning he said Justin should sit right here as he patted the floor, so he could watch Travis and me play fishing. Justin and I fished for Travis and when we caught him, Justin would chew on his finger to decide if he tasted good enough to eat, or if we should throw him back and try again. Travis loved it! And Justin got to chew on something other than ME! This was Travis helping Justin ride his horse, and he was very gentle in bouncing the horse. It honestly brings me tears as I ponder their future as siblings when Randy and I are gone.