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!!

Monday, October 15, 2012

New Digs

Lots of things happening in our house this week...none of which have to do with doctor appointments or kidney-related things.  Unless of course we get the call from CHOP, than all other things shall cease!  But in any case, we've decided to take the leap and move out to the suburbs!  It's been a really tough decision, as you know, but we decided to be realistic and smart about things and will be renting a home out in South Riding, Virginia until Stephen gets his transplant and we get our feet under ourselves again.  If we didn't live in such a high-cost area of the country, it wouldn't have been such a hard decision, but because house prices are so astronomical here, we couldn't justify purchasing a home when Stephen's transplant expenses are going to be so costly and also so unknown.  We could potentially have to relocate to Philadelphia for weeks, if not months, depending on how his (and maybe my) surgery go and adding financial stress on top of the kind of stress that having a sick child brings, is just not something we want to have to deal with.

But we desperately needed more space and some breathing room and found a perfect little home that will meet all our needs.  Even down to the desire to be able to walk places like the grocery store, a coffee shop, and parks like we do right now.  And even more ironic is the fact that the people who own the home have a little boy that also has special needs.  And the best part....Bill's office is only a few miles from our new home versus the 26 mile/50 minute commute he has now.  It just ended up being the perfect situation for us right now and I'm so excited to start a new chapter in our lives!!!

So, I've been spending the past week and half packing up the past 7 years of our lives from our condo.  Living in less than 1,100 square feet has come with some challenges, and I some how managed to squeeze stuff into every nook and cranny of this place!  So there's been A LOT of packing to do.  But we've taken a few trips out to the new house and gotten a lot of boxes and various things out there.  Including some new, big boy toys for Stephen!!  We now will have the space to set-up a whole playroom for him, and I'm so excited to be able to get him all the toys he needs to keep progressing in his gross motor, speech, and feeding skills.

But we of course are really going miss being so close to DC (we're only 2-3 miles from the city right now) and other cool places.  Last night we took advantage of our close proximity and the beautiful weather and took Stephen downtown to see some of the monuments on the National Mall.  His favorite part about it...watching the airplanes fly over head on their decent into Washington Reagan.  Stephen's really big into airplanes right now and I'm happy that we'll be moving from one airport to another.  Our new house will be very close to Dulles airport.  Every time he sees or hears an airplane, he points up to the sky and says, "plane!"  It's so cute!!

Friday, October 5, 2012

New Video

Practicing for Daddy's big game on Saturday against the Georgia Bulldogs.  Go Gamecocks!!

And go PSU!  Beat Northwestern!! :)

Wednesday, October 3, 2012

Happy Hump Day

We didn't make it to CHOP today because Bill has the flu, so I thought I would post some pictures instead. I feel bad for him because I've never seen him so sick and even though he's been in bed all day, it's nice knowing he's right in the next room :)

Hope these cute pictures brighten up your day!

Tuesday, October 2, 2012

Back in Business

I got news at the end of last week (while Stephen and I spent a few days in York), that Stephen's second culture for c-diff came back negative!  That means, as of last Friday, September 28th, we were able to start accepting kidneys again!  Holla!!!  So now I'm back to jumping up every time my cell phone rings.

I'm still not 100% convinced Stephen ever had c-diff because he never really exhibited any of the symptoms, but now I just have to keep hoping and praying that the next culture remains negative.  They have to have two negative cultures to start accepting kidneys, but the real test will be to see what happens once he's off the antibiotics for a week.  He's still taking antibiotics to make sure they good and kill any bugs remaining in his tummy.

And we go to CHOP tomorrow (Wednesday) for the combined kidney/liver clinic so if somethings changed between last week and this week, at least we'll know.

Also, I wanted to share a guest blog post I wrote for the Dialysis Patient Citizens; a non-profit organization that advocates for dialysis patients and educates the public on dialysis and other kidney-related issues.  I am a Patient Ambassador, on behalf of Stephen, and they've asked me to guest blog on The Patients Voice once a month about what it's like to be a parent of a child on dialysis.  Yesterday was my first post, so it was an introductory post about Stephen, but each month I'll talk about a different topic such as learning peritoneal dialysis and how we cope with having a child a child on PD.  I'm pretty excited about it and hope that there's someone out there that finds it helpful and/or informative.

Below is a copy of the post, but you can also check it out here:

Stephen’s Journey – October

By Lindsey S. Guest Blogger

Hi there – my name is Lindsey Schwartz and I’d like to share with you my family’s unique perspective on dialysis and kidney disease. Each month I will share another piece of our journey so please look for my articles under the Guest Blogger category. It’s a journey I never imagined we’d find ourselves on, but so proud that we’ve made it this far. My perspective on dialysis is not through my own or my husband’s battle, but through my 21-month old son’s battle with end stage renal disease and peritoneal dialysis. My hope is that by sharing Stephen’s story with the world, we can help other’s understand the wide-reaching affects that kidney disease has on the world, and what dialysis looks like to a family with a young child on peritoneal dialysis.

Our journey began in October 2010, when I was 27 weeks pregnant with Stephen. During a routine ultrasound at my obstetrician’s office, it was discovered that I had no amniotic fluid because Stephen’s kidneys has stopped functioning. After further ultrasounds and testing, Stephen was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD); a very rare and most of the time, deadly form of PKD (this diagnosis would later be confirmed through genetic testing). We were given the very devastating news that because Stephen would be without amniotic fluid for close to half of my pregnancy, he would not survive. Amniotic fluid is vital for lung and organ development and without it; Stephen would not be able to breathe once born. 

We saw specialist after specialist throughout the Northeastern U.S. and were given the same grim prognosis everywhere we went. But, we had received some hopeful news from the nephrologists that kept us fighting for our little boy. As long as Stephen had enough lung function to get him past the few days after birth, the surgeons would remove both of his kidneys; place a peritoneal dialysis catheter in his little belly, and a feeding tube in his stomach. And then we would begin the very long and very bumpy journey of getting Stephen healthy and big enough for a kidney transplant.

To most people, I’m sure this would sound devastating; having your newborn baby’s kidneys taken out and doing dialysis. And then having to do dialysis every single night of his life for 12 hours! But for my husband and I, this was the best news we could have heard: that there was a solution to this horrible problem. So we began hoping and praying for a miracle that our little boy would be able to breathe and be strong enough to endure the surgery. It was a very long two and half months until Stephen was born, but on January 4, 2011, we received our precious miracle. And then six days later, Stephen had a double nephrectomy to remove the large and cystic kidneys to make room for his lungs to grow. One day later, he started peritoneal dialysis and so our journey with dialysis began.

Our lives, just like the lives of any newborn baby’s parent’s, have changed forever with the birth of our son. But our perspective on life is different than most. My hope is that over the coming months, I can share with you how we’ve weathered the ups and downs of dialysis; learning peritoneal dialysis, the infections, the late night-ER visits and calls to 911, the eating challenges, the insurance woes, and ultimately our road to Stephen’s transplant. Through Stephen’s story, we hope to help others who find themselves challenged by the thought of beginning dialysis or who just might need a little pick-me-up! And ultimately spread the word of the importance of organ donation.

If you’d like to read more about ARPKD, peritoneal dialysis, or just check-in to see how Stephen is today, please check out our blog at: