Pictures!

OK, so we owe a longer post than this one, but there are a whole slew of new photos of Ollie to keep you busy. Just click on his picture to the right to see them! Ollie even made it to the beach this week (he's really cute in trunks and sunglasses!)

In other news, we have started the medical trial for an experimental treatment (CARNIVAL I). We'll certainly have a more detailed post up soon regarding that. Ollie is on day 4 of the medications and seems to be tolerating them well.

Oh yes, we've been officially approved for CAP-C and even have his cards in hand! As you can imagine that has been a huge load off our minds. Bekka now has nurses coming in 3-4 days a week for a few hours which allows her to catch up on sleep and make all the necessary phone calls!

Little guy has also had a rough few days. We think he's had a head cold and it's made keeping him suctioned out very challenging. So far he's had a great Saturday for daddy while mommy is at work!

Ollie & Mackinley Meet

We had a "routine" visit at Duke today with Dr. Smith. He sees Oliver every month or so to monitor his progress. At this visit we also got to meet Joanne Mackey and Dr. Kishnani. They will be part of the team that will be running the clinical trial (CARNIVAL I) starting around June 23rd! We are excited and hopeful about this study. It's not a cure, but we hope it at least leads to some treatment options for kids with SMA.

After our appointment, we all went to visit Mackinley and his family. You can follow Mackinley's journey on his CaringBridge site. It was really cute to see Ollie and Mack lying beside each other. They really seemed to enjoy looking at one another. And little Mackinley had a LOT to say! We're not sure, but we think they may have been confirming their plans to take over the world. Or at least Duke Children's! Personally, I think they plan on doing it by flirting with all the ladies. =)

Neil and I had a nice visit with April, Kyli and Paige (who turns 6 years old on June 9th...she wants everyone to know). And we got to meet Brian as well. Please keep April, Brian, Mackinley and their family in your thoughts and prayers. Mackinley's g-tube surgery is scheduled for this Thursday, June 11th.