16 Months and Antibody Results

Owen is 16 months.

Owen is definetly showing signs that he wants to get up and MOVE. He has recently mastered the butt scoot back and forward, no longer is he stuck doing the butt spin. He's also been working really hard on strengthening his arm muscles so that he can push up on his tummy and pull himself up to a stand. Everyday he works so hard until he is clearly out of breath and a little bit blue. Before we know it, he'll be crawling and walking and I'll wonder what the heck do I do with all the tubes??
Owen's fine motor skills are amazing and he loves to color, play with playdoh, do puzzles, is mastering the shape sorters and this boy can slam out some killer tunes on the keyboard.

Since we Desert Dwellers don't see temps under 100 degrees here in the summer, we live a life of luxury in the pool. Owen has earned his fish gills already. He loves to dunk his head under, kick his little legs, swim all over (as far as the oxygen cord will reach) and take sips of the nasty pool water when nobody is watching. He kicks and grunts when it's time to get out. He will figure out soon enough that getting out of the pool, means jumping into the tubby, which is his second favorite thing to do. It's a tough life.

This picture is just a glimpse a the new "tantrum" that he deemed necessary when he isn't getting his way. He's pretty good at it and even produces real tears. As soon as you give him what he wants.... be it the paper you just removed from his mouth, or the pen he was sticking in the electrical socket, or the Lincoln Log he was sticking in my water bottle... he turns off the saddness and his pearly smile comes back. Maybe he'll be an actor? It doesn't require great heart function does it?

Speaking of heart function....

I got a call from Stanford today and they got the results of Owen's antibody tests back. They run the regular IgG test which shows that Owen is highly sensitized in both Class I and II. We already knew that and yes, he is 99% sensitized, that's crazy high. Stanford also runs a C1Q antibody test and that shows that he is 16% sensitized in class I and 66% in class II. Did I lose you?? Don't worry, I don't understand it either. They did mention that his C1Q antibody test is much lower than they anticipated based on the findings of the IgG antibody test, so that is good news. They are also pretty confident that they can lower the existing antibodies enough with IVIG alone. That would mean no more chemo and no CellCept. This would be an ideal situation, but I don't ever plan for ideal.

We agreed to hold off on IVIG treatments for now. We are still working on getting Owen's meds increased to his crazy high doses and see how he tolerates it. If it doesn't work or if his function decreases, we will then start the IVIG and get him listed for a heart shortly after. Until that happens.. NO IVIG! I couldn't be happier!

We have an appointment at Stanford in September to visit with Cardiology. Until then... no traveling, we'll see Dr. Stock every three weeks, and just increase meds. Can you see me smiling??

Guess who just pulled all the wipes out of the box and threw them on the floor? I bet you'll never guess.