Wednesday, October 31, 2012

Happy Halloween

Happy Halloween to all the ghouls and goblins out there!! Out little monster will be dressing up tonight as a lion in order to scare all of our new neighbors with his vicious growl! I'll make sure to be a good Mom and take lots of pictures, so I can share them with you. I haven't been such a good blogger lately keeping everyone updated on Stephen's progress and so much has happened in the past two weeks!!

Namely the biggest...we moved out to the suburbs! It's been fantastic! Having tons of space, a garage, a fenced back yard, and an entire room dedicated as Stephen's playroom has literally changed my life! We're still getting settled, but so far, so good. I've even found a nearby CVS, with a drive thru pharmacy no less, that can make Stephen's compound prescriptions, so we're all set!

And what's so crazy about this move has been the changes in Stephen. He spent two nights with Bill's parent's while we moved, and the second he got into our new house he started walking. It was amazing! He just needed the extra space to get the confidence to start walking and now he's off and running. Literally!! Of course that means he's getting into trouble so the "toddler proofing"commenced. It's amazing how fast the little guy can be and how quickly he can get from Point A to Point B when I'm not watching. He will spend hours just walking in a big circle around the first floor of the house. It's so fantastic! I only wish his therapist could see him walk. She worked with Stephen from the month he came home from the NICU until the week we moved out of Arlington County and really cared so much about him and his progress. For months Stephen cried through his sessions and didn't really even want to be touched. We've waited so long to see him walk and now to do so feels like a little miracle.

And we were so lucky and caught a huge break this week and survived Hurricane Sandy unscathed. I began preparing last Friday morning after hearing about the storm and set off that morning with Stephen to find a generator. After losing power in July during the derecho storm and not knowing how Stephen was going to get dialysis, we figured we better be safe and get one. Except, by Friday morning, Lowe's, Home Depot, and Costco, along with most of the local rental company's were totally sold out. You couldn't find a generator from Fredericksburg, VA all the way up to State College, PA! We did find two later that day, but we had a hard time spending almost $2k on a generator without really knowing if it was the right one for the job. So instead, we stocked up on ice, water, lanterns and batteries and prepared to be without power for a night until we could safely get out of town to find power. But the suburbs prevailed and never lost a second of power through the entire storm. And now I can do some research into portable generators and find the right one for our needs at the right price!

The only bad news that has happened is that Stephen's cdiff is back. He had two negative cultures, but both cultures were taken while he was still on his antibiotic. So they were kind of like false positives. Once he was off the antibiotic for about a week, I knew it wasn't gone. And sure enough, he had a positive culture. So we've now just finished another round of antibiotics and are starting a second today. I'm a bit discouraged because we're still on the same antibiotic as before, so I feel like we're not going to kick this thing again. The only change they've made is to up his probiotic. He's now on both the adult versions of culturelle and florastor. The infectious disease doctor who is consulting on his case just came back from a conference that focused on cdiff. Cdiff right now is a real public health issue and is spreading all over the country and the different strains are becoming resistant to antibiotics. Not good news for us. But we're doing what the doctors tell us to do and hoping we can catch a break from this soon so we can get back to this kidney transplant business.

So without further's Stephen up on his feet! Every video I've taken has him crashing right into me. He's attracted to the camera like a moth to a flame. But don't toddlers were hurt in the making of any of these videos. He did suffer a little injury while we were waiting out Hurricane Sandy but that's because socks and tiled floors don't match. But he took it in stride and kept on chuggin'!

We hope all our East Coast friends and warm, dry and safe!!


  1. Such a joy to see how adorable and happy he is! Love Love Love!!! Can't wait to come see your new place! XOXOX

  2. He is a regular little road-runner meep, meep!!!
    Love Grandma

  3. Hi Linds,
    So glad to see your post. We've been checking daily but figured you folks were busy with the move. 'So happy to see Superman is now walking. I am sure he will really thrive in his new digs. Mabel looks happy too!! Good to hear that the storm was kind to you. Lehighton also faired pretty well but the Lehigh Valley did not. Can't wait for the pics of "the Monster". I'll be checking in tomorrow...
    Love and Hugs,
    Aunt LuAnn

  4. Hello, I have been following your blog and have been praying for Stephen. I have read that fecal transplant treatment has been successful in fighting off Cdiff. Have you looked into this? Not a very "polite" topic, but new and with good results. Please know that others are following and care about your son and family very much. Many prayers and love. ~ Toni