Day +266 Clinic Recap

Our visit to clinic seemed to flow so smoothly! We were in a room beside the most adorable little boy who is just a few months older than Peter. We met this little guy "H" when just as Olivia was discharged from 5200 (I can't believe it's been over 6 months since she was discharged). It was so magical to see the look on "H" and Peter's faces as they looked at eachother through the sliding glass door. Both Peter and "H" don't get to see many other kids so it was really neat to see how into eachother they were, they gave eachother high 5's through the glass.

Olivia's labs looked fantastic! Really they couldn't look better, her body seems to be working more efficiently lately. It feels like all of a sudden things are coming together, she's not needing as many vitamin and mineral supplements, she's getting more nutrients out of her food. Medically she's doing really well we got comments all day long about how well she's doing and how good she's looking. We're so blessed! As a parent it doesn't always seem like much of this process makes much sense. Some kids do well, some don't. Olivia's unbilical cord stem cells came from a good match but not a perfect one. There were several other kids who had better matches but they have had to face more complications. There doesn't seem to be any correlation. There's so little control we have over any of this. I been in a really reflective mood lately, thinking about all that has happened over the last 9 months. I can't believe it's been 9 months. This is the first time since Olivia was born in that I feel like time has slowed down. Nine months is a long time and when I think of everything we've been through I still feel it. Every single doctor appointment, every lab draw, every scan, every developmental test. But then I look at Peter and I see a little boy not a baby, where did the time go? Speaking of the 9 months it's almost time for Olivia's 9 month post-transplant studies. I'm told these are not very invasive, just a lot of labwork, an echocardiogram, lung function tests, and an EEG. These will hopefully be completed in 2 weeks at our clinic visit. At the 9 month mark they will also test Olivia's immune function again. Now that some of her steroids have been weaned we're hoping that she shows some improved immune function. The doctor did give us the okay to go into some public places with the following guidelines.....outside is always better than inside, go during off peak times, wipe down what we can with lysol, keep a mask handy so that other people will stay away because people fear the mask. They gave us these instructions several weeks ago but we haven't had anywhere to go that I really thought was worth it so we're still pretty carefull. They did give us the OK to stop by Costco on the way home, I spent way too much money on paper products--diapers, wipes, pull ups, paper towels, toilet paper. The glamerous life of a mom, I wish I could go in and spend the money on wine and beer and fruit and cheese and flowers.

That's it for now but I promise to post more pictures soon! I've figured out how to get them off my cell phone so pictures to come.....

Oh and I almost forgot....the best news from clinic is that we can stop Olivia's blood pressue med! My almost 4 year old won't need any more blood pressue medicine!