Wednesday, December 28, 2011

2011 Christmas Card

You know you're past the "newlywed phase" when you ask for and receive practical gifts for Christmas/birthdays/celebrations.  This year it was a new wireless scanner/copier/fax/printer and a docking station/alarm clock for my iPad and iPhone (I'm way too connected to the Internet world, I know).  So now that I have a working scanner, I'll be able to share things more easily with all of you! The first of those things I'd love to share is our Christmas card.  If I had the means to do so, I would send each and every one of you a card since I consider everyone who reads my blog a friend.  But until cards and postage are free, or I win the lottery (!), that won't be happening.  So the next best thing is to share it virtually!!

The text on the back of the card says,

"2011 has been a monumental year in the Schwartz household!  The beginning of the year brought the birth of our first child, Stephen Charles.  He is a true miracle and has taught us that the most important things in life are family, friends, health, and love.  He is a special gift and continues to amaze us each and every day and we are so blessed to be his parents. We want to thank you from the bottom of our hearts for all the thoughts, prayers, and well wishes we've received over the past year and to all the doctors and nurses who have so lovingly cared for Stephen.  We want to wish you and your family a very Merry Christmas and a happy and healthy 2012!"

The photos were taken by Rashmi Pappu, photographer extraordinaire.

Sunday, December 25, 2011

Merry Christmas

We had such a wonderful Christmas today! Stephen had a blast ripping apart the wrapping paper and bows and I think he understood that he got some new toys today. And best of all, he slept in! We had to wake him up around 9:15 this morning. Although, we were up with him last night for a few hours, so it wasn't like he slept the whole way through the night (but these seems par for the course with the medications he's on). Santa was very good to us this year, and it was everything we hoped it would be. It was certainly 180 degrees different than last Christmas!

It was really hard to choose, because we took so many pictures, but here are a few picture from Christmas Eve and today. We hope you all had a wonderful Christmas with family and/or friends or just spent the day in comfy clothes watching movies (as we did all afternoon and evening).

Thursday, December 22, 2011


Once I get my feet under me again (there's always so much to do when we get home from the hospital), I'll write more. But Stephen is currently rolled up in a little ball, in the upper corner of his crib, snoozing like a baby! All the prayers were answered. Stephen will be home for Christmas!!!!

Wednesday, December 21, 2011


Thankfully, Stephen's respiratory condition is getting better, so we are really thinking that we'll be home for Christmas; but, things in the hospital are just as stressful, if not more, than they have ever been. And it comes down to a lot of factors all happening at the same time. The albuterol and steroids are still wreaking havoc on Stephen's temperament and demeanor, especially at night. We've decided to take turns staying at the hospital because there's no sleeping at night and what's the use in having two super cranky parent's when you can have just one? Also, the respiratory panel still hasn't come back from the lab, so Stephen's still on isolation. That means everyone that comes in and out has to put on a gown, gloves, and a mask. And I'm not allowed to go anywhere on the floor; including the pantry to get water or coffee. I have to ask a nurse to get it and that's not their job, nor their concern. Yesterday, Santa Claus came around again to see the kids, but because of the isolation, he wasn't allowed to come in Stephen's room :(

And today I spent forever trying to figure out why Medicare is denying all of Stephen's prescription medications and how I can drop his Part D Medicare since it seems completely useless. But no one has any answers; not Medicare, not Medicaid, not the County and certainly not anyone here at the hospital or the social workers. It's such a nightmare! The answer I keep getting from people is that they've never heard of someone getting both Medicaid and Medicare or that he has a very complicated case and I'll have to talk to someone else. Why can't someone just do their job and find the answer? All I need to know is that I'm making the best/right decisions for my child's healthcare.

Ugh. Can you tell I'm a cranky person that just wants to go home!? At least they keep weaning Stephen off of the high-flow canula and breathing treatments and unless there's some major set-back, we should be home soon because I can't get out of here fast enough.

Monday, December 19, 2011

Thank you

I am moved to tears by the outpouring of support for Stephen, Bill, and I. I can't thank you enough for all the prayers, thoughts, positive energy, and virtual hugs we've received over the past 48 hours. Even though most days we feel so alone in this journey, your messages are a reminder that there a lot of people out there that truly care about us.

Stephen is getting better; little by little. He (and we) had another sleepless night, which only multiples the stress level (this has been a BIG lesson in patience!), but this morning they backed off on his albuterol from 10 mg to 7.5 mg. Which is definitely a step in the right direction. It helps to know that the attending doctors (the doctors that oversee the residents) from the PICU come and check up on him every shift, which is very reassuring. They're super smart and knowledgeable!!! And his lungs sound better with minimal to no wheezing, another plus. But there's definitely still evidence of atelectasis (collapse of part of the lung) in portions of his lungs. We're still holding out hope that Stephen will be discharged by Friday, but know that Santa will find us no matter where we are!

Sunday, December 18, 2011

It's been an incredibly challenging 24 hours for all three of us. For Stephen, his challenges have been more monumental than ours; in that he had to work incredibly hard last night just to be able to breathe. For us, it was challenging to watch him struggle and get sicker and sicker with each minute that ticked by. It was a very scary night for us.

As I mentioned before, this all started out as a little cough on Wednesday while we were still in the hospital. Thursday, it got a little worse, and he seemed as if he wasn't feeling very good. Again on Friday, he was worse, so I took him to the pediatrician. The doctor said it was a viral sinus infection and that there wasn't anything they could give him. Saturday he continued to get sicker and was so inconsolable and his breathing seemed to be getting faster and more shallow, so we decided to take him to the ER (it started off as a drive, hoping that it would put him to sleep). By the time we got here, he was clearly in distress; both respiratory-wise and just all together.

His RSV swab came back negative, but the chest X-ray clearly showed that a portion (the middle lobe) of his right lung had collapsed leading the doctors to believe he has pneumonia. Both his heart and respiratory rates were elevated and his oxygenation was in the low 90s so they started some nebulizer treatments. Almost instantly you could see an improvement in his temperament, but you could still see in his chest and abdomen that he was struggling. Apparently, the treatments give the feeling of an "oxygen high." He received two treatments before we finally got up to his room.

Once we got to his room though, things just kept getting worse. He screamed for about two hours while our patience wore paper thin, until he finally got another breathing treatment. The treatments were supposed to work for two hours, but after only about 20 minutes, Stephen was screaming again. The respiratory therapist gave him one more before deciding to up his dosage of medication and do a series of three treatments back-to-back. But it quickly became clear that that wasn't working either. Stephen's temperature got up to 102.4 and then some panic set-in. Well, the panic set-in on our part, and the doctors and nurses just started scrambling figuring out what to do next.

My huge concern was that with a pulse hovering around 220 and respiratory rate (breaths per minute) in the 60s, he was going to either go into some sort of arrest or need to be intubated (breathing tube) like what happened back in January in the NICU when he got pulmonary hypertension. What they ended up doing was giving him the maximum amount of albuterol allowable (the breathing treatment drug) in a continuous manner. And he's been on that ever since.

Eventually his temperature came down from the cold wash clothes we kept on his forehead and legs, but no one ended up getting any sleep. The albuterol unfortunately gives Stephen some tremors in his legs and actually raises his heart rate (sort of like caffeine), so he hasn't really slept at all. He did fall asleep tonight around 9:30pm, but between his cough and the nurses taking vital signs every hour, he isn't really able to get any solid sleep. Which of course means we don't get any real sleep. But what's another night of bad sleep!? Oh and since it takes 72 hours for the results of his labs to come back, we're also on isolation. So I can't even go to the damn pantry to get a glass of water!

But thankfully Stephen hasn't gotten any worse since last night. He's holding steady right now on the same treatments, which is ok for the time being. As long as we never have another night like last night, I'll be thankfully. There's nothing scarier that watching your child struggle to breath!!

Saturday, December 17, 2011


We're currently in the ER. Stephen's cough is now a partially collapsed lung. Doctors still don't know what has caused this but there are a couple of possibilities which include RSV or bacterial pneumonia. In any case, it's not good. He's being admitted back to the IMC until they can get this sorted out. To say we're stressed and frustrated is the understatement of the year.

Friday, December 16, 2011


Well, that cough I mentioned yesterday hasn't gone away.  It's actually gotten worse and Stephen now has his first "normal" kid illness.  According to his pediatrician, she thinks he's got some type of viral sinus infection that is causing the cough and the throwing up.  And I can't forget to mention; the bloody nose.  I freaked out yesterday afternoon when he woke up from his nap, threw up, and the sneezed out blood.  I had no idea that babies could get bloody noses; but apparently it happens when their nasal passages get dry.  I thought for sure it was going to lead us right back to the ER!  But the doctor says it should be about 10-14 days until this is all cleared up.

I just feel so sorry for him because he's coughing all the time, causing his stomach muscles to contract, which I know must hurt.  And there's nothing I can do for him except let him sleep as much as he wants.  Poor kiddo!  Hopefully he'll be feeling back to normal by the time Santa Claus comes!!

Thursday, December 15, 2011


It's 2:45 PM EST and we got home about 20 minutes ago. Stephen's taking a nap in his own bed, I'm unpacking everything (you accumulate so much stuff in the dang hospital) and Bill headed back to work. We would have been home well over an hour ago, but when the nurse de-accessed his Mediport, she stuck herself with the needle. So it was a huge long process of them trying to figure out what to do and then drawing more blood from Stephen.

The only problem is, my little guy picked up a nasty cough while in the hospital and I fear it's not going to go away without putting up a fight :(

Wednesday, December 14, 2011

I'm having trouble posting on the blog today as the Internet at the hospital is running really really slow, but I really wanted to post an update on what's happening with Stephen. I think the last time I posted, we were sitting in the recovery area (PACU) with Stephen. He has some trouble when he started waking up out of the anesthesia and was in some pain, but they have been doing
a good job at managing his pain on the floor. Yesterday was a good day; he napped a lot, but was able to sit up and start playing with some of his toys and some of the ones the hospital (Child Life Services) gave him to borrow during his stay. And he's been sleeping pretty well too. Bill and I have both stayed with him every night since we're in the Intermediate Care Unit (IMC) and not in the intensive care unit which has been nice. It's cramped and the sleeping arrangements are crappy, but we like to be here first thing in the morning when the docs and everyone come around. And they started letting him eat again yesterday.

Today though, he seems to be a bit off. I can tell he isn't feeling as good as yesterday. He's very lethargic and just uninterested in what's going on. So I'm trying to just get him to sleep and hopefully that will help. We did start dialysis today and everything seems to be going great, so his nephrologist is hoping to get us home tomorrow. He'll still be on very low volumes, over a long period of time (12-18 hours), so it won't be an easy transition to home, but it's better to be home than be in the germy hospital.

And on another really happy note, Stephen met Santa Claus for the first time this morning! It's a little bittersweet as his Momma because I never wanted and/or expected that his first time seeing Santa Claus would be in a hospital bed and you never expect that your own child will be on the receiving end of Christmas toy donations (I seriously can't stop the tears from welling up in my eyes thinking about it). But it was still really special!! And thankfully Bill hadn't left for work yet, so he was here too. The Fairfax County Police and Sheriff's Department hosted this special event for all the children at the hospital today. Santa Claus, Mrs. Claus, Rudolph, and a few elves came around with toys (hand-picked for each child's age) and took pictures and video of Santa handing out toys. Stephen wasn't scared of Santa at all, which was so awesome, but he did get a little freaked out by the bright camera lights. So...thank you so much to all the police men and women who worked to make this day so special for all these kids (and parent's too) and to all of those who donated toys!!! Stephen absolutely LOVES his new dinosaur toy and books!

Here's a family pic with Santa and one of Stephen playing with his new toy a bit before heading back off to Dream Land.

Monday, December 12, 2011


Stephen's out of surgery and in recovery as we speak. He just opened his eyes for the first time and is trying to wake up a little bit. As soon as he's alert and able to take a few sips of water, they'll move us back up to his room.

- Posted using BlogPress from my iPhone

Sunday, December 11, 2011

Surgery Tomorrow

We'll be checking into the  hospital this afternoon for Stephen's surgery tomorrow morning.  He's scheduled first thing tomorrow morning for 8 AM surgery with Dr. Kim; the same surgeon who's performed all of Stephen's surgeries.  He'll be replacing his dialysis catheter with a newer, bigger one and hopefully fixing the hernia that has come back.  I don't know if the hernia is the same one he had before, but it's pretty much in the same spot; right across his nephrectomy incision/scar in the middle of his belly.  We haven't talked or met with Dr. Kim yet so I don't know what the plan is, but we're confident that Dr. Kim will do whatever is best for Stephen. 

When I called the hospital this morning they still didn't have a bed for Stephen, but I'm guessing we'll need to have him there sometime in the late afternoon.  The only bad part is they'll have to make room for him either in the PICU or IMC.  They don't allow him to go to the regular pediatric floor because of the dialysis, which is a huge pain in the butt.  And the intake process takes who knows what the rest of the day will bring.  I just hope they make room for him in the IMC so we can stay the night with him.  It'll be a sleepless night regardless of where I am, but I'd much rather be next to him than have him be by himself!

I have absolutely no idea how long this surgery will last, but I'll update the blog once we get back to see him in recovery.

Wednesday, December 7, 2011

Beautiful Photos

I wanted to share a slideslow of photographs that we recently took on a Saturday morning in Old Town, Alexandria.  I have admired Rashmi Pappu's photographs for over a year, but we never had any intention of actually having any professional photos done; before or after Stephen was born.  But as you know, once things took a dramatic turn, I figured it was really important for us to photograph our journey so we could really remember things as time went on.  Well, back in early February, right after my birthday, I saw that Rashmi was hosting a contest on Facebook for a family to win a photo session with her.  We had just taken a family photo in the NICU on my birthday, so I submitted the photo and hoped for the best.  Well, once our friends and family and all the nurses and staff in the NICU heard about it, they rallied together and voted for us and our family, along with another mother fighting cancer and children, won photo sessions with Rashmi.  Click here to see the contest entry.

I waited so long to do the photos because I wanted Stephen to not only be healthy, but also able to sit up by himself so we could get some great photos of our little man.  It was a really chilly morning, but we had a blast and Rashmi definitely didn't disappoint!  The photos of Stephen are so beautiful and funny and perfectly capture his personality.  And I think we've definitely got a winner in the bunch for our Christmas card (or New Year's since I still haven't ordered them).

Sit back, turn up the volume, and enjoy!


p.s. You have to watch the slideshow on a computer; not a tablet, iPad, or phone.

Friday, December 2, 2011


Thankfully we had a much better ending to the week than we did at the beginning! Stephen's feeling 1,000% times better today that he did last week and earlier this week and his cultures and labs are the same. The cultures haven't grown anything and his cell counts are near perfect so all the dialysis and antibiotics he's been getting have done the trick. We still have to replace the catheter, but at least he'll be going into this surgery with absolutely no bugs in his belly. We haven't gotten a definitive date for the surgery, but it's likely to happen on Monday, December 12th. We could possibly do it on Friday, December 9th, but we'd be an add-on for the day and his surgery could get bumped which would mean we'd probably be stuck in the hospital over the weekend. Yuck! So we're hoping for Monday. Now we just need to keep our fingers crossed that his patched-up catheter holds until then! There's no reason why it shouldn't, but we don't seem to have very good luck lately.

In other non-medical related things...I started decorating the house for Christmas which is always fun. We don't ever seem to get around to it until the week before Christmas (we have to drag everything out of our storage unit), but now with Stephen, I'm dying to get the tree up! I cannot wait until next year when knows more of what's going on! And in other news, we have a big birthday to celebrate this weekend! Someone...starts with a B, ends with illy...has a birthday on Sunday. Nothing big planned, but Stephen and I have a little something up our sleeves :)

And just to start the weekend off right, here's a little video I took this evening. Stephen's really into turning the pages of books right now and he loves this little book with lights and sounds. Plus, it's just his size. And I've been working on trying to get him to wave hi and bye. You'll see he's gotten pretty good at imitating too.

I hope everyone has a lovely weekend!!

Tuesday, November 29, 2011

And again

The past two days have been two of the most stressful days in recent months.  Everything seemed to be going great after we got home from the hospital last Friday, but everything went down the crapper Sunday night.  Sometime around midnight or 1 AM, Bill went in to pick up Stephen from his crib and rock him a bit and soon after I got a panicked, "Lindsey come quick!"  Bill and Stephen were both soaking wet because his catheter had literally fallen apart.  In the middle of a dwell, his catheter came apart at the seams.  There's is a connection between the catheter tubing that comes out of his belly and the connector piece and some how that connection came apart so all of the fluid that was dwelling in his belly had come out and he was now open to the air and germs.  I tried as best I could to patch it up and we called the doctor to find out if we should take him to the ER.  Because he was already on antibiotics from the peritonitis, she didn't have us bring him in, but we stopped dialysis and I was told to bring him to see the dialysis nurse in the morning to get it repaired.

Monday morning his dialysis nurse repaired the catheter and gave me the news that I'd need to get Stephen home and hook him up for dialysis for the remainder of the day and night; 18 hours.  That meant that Stephen was "chained" to his bed and surrounding area for the next 18 hours.  Not an easy feat for a 10 month old.  Lucky he wasn't feeling good again yesterday and took a really long nap and Bill's Mom came over to help me occupy him for the rest of the time. 

But then lightening struck twice today.  This morning I checked in with nephrology and was told that Stephen would need to be on 24 hours of dialysis today to try to get rid of the extra germs he got from the catheter breaking. But when I connected him again this morning at 10AM, his catheter line was full of bubbles and air; signaling to me that something wasn't right.  I searched and searching and finally find it....a small hole in catheter.  AGAIN!!  That's what caused his peritonitis back in April!  But because we repaired his catheter once before, repairing it again would really shorten it and I was sure they were going to admit him to the hospital to replace it.

Luckily his dialysis nurse was able to repair it today with an extension, but it's only a short-term fix.  The catheter needs to be replaced and that means another surgery for my little man.  We're hoping that they'll be able to fit him into Dr. Kim's (Stephen's surgeon) schedule next week, but the big caveat is that he can't have any kind of infection.  And it might take a week or so until we can get all of the infection cleared out of Stephen's belly.  So in the meantime, we're back home, Stephen's on dialysis and playing on the floor next to his crib, while I finally grab a few minutes of "peace" in his rocking chair (if that's even possible). 

But I made it crystal clear to his doctors today that this surgery better be done in time for his to be home for Christmas because there is not a chance in hell that I'm going to let him be in that hospital for another holiday, and especially not Christmas!!

We got back to see the nephrologists tomorrow, so hopefully they'll have conferenced with the surgeon and come up with a solid game plan. 

Saturday, November 26, 2011


So I have to apologize for surprising everyone with the news we were back in the hospital and then not updating at all with what was going on. Wednesday was an insanely long day and Bill and I never got to sleep Tuesday night and didn't get to catch any zzz's until Wednesday night when we got home from the hospital. Then Thursday was another long day (and an emotional roller coaster for me with Stephen in the hospital on Thanksgiving day) and by Friday morning, we were getting the news that we could go home. So it was a whirlwind of a few days.

Basically, Stephen had/has peritonitis and because he made sure to tell us, we were able to catch it quick enough that it didn't get too bad. It was bad enough obviously to cause a hospitalization in the PICU, but not as bad as it was back in April. We're still treating him with three types of antibiotics in his dialysis fluid at home, but he's 100% better. Although unlike the last time, he was in A LOT of pain this time around. They had to gave him both Tylenol and a narcotic pain killer to make him comfortable and so that he could sleep. But by the time we reached his room Friday morning, he was back to his normal self and feeling well enough that we could take some laps around the PICU in a cool car.

Here are some pics of the big guy when he was feeling pretty good. And each day he seems to be feeling better and his dialysis output gets clearer, meaning the infection is getting wiped out. And hopefully tomorrow we'll get confirmation as to what type of bug Stephen got.


We came home yesterday afternoon and are settling back into our normal routine. I feel like we totally skipped Thanksgiving even though we had turkey, so I'll have to get a Thanksgiving post and some pictures up later today. But we're so thankful that this hospital stay was reasonably short.

- Posted using BlogPress from my iPhone

Wednesday, November 23, 2011

Not Again

It's 4:15 am on Wednesday morning and Stephen was just admitted to the pediatric intensive care unit (PICU). He's got a really nasty case of peritonitis. No idea how he got it but he spent almost 6 hours crying tonight so we knew something wasn't right. We brought him in around 2:30 am and we're now just waiting to be moved upstairs from the emergency room. Looks like we'll be spending another holiday inside the confines of Fairfax hospital. How depressing.

Friday, November 18, 2011

Transplant Meeting

I'm not really sure how to exactly sum up the past 30 hours except that they've been really long and exhausting and confusing at times I guess. I definitely don't feel super excited and super hopeful leaving CHOP as we did last year when we left, but I'm also not feeling totally letdown or dejected. I guess we had hoped to leave having an overwhelming feeling of excitement for the transplant and a sense of timing. I mean we are excited for the prospect of the transplant, but we have absolutely no idea when it'll happen. We thought for sure it would happen next year, but I guess we have to be sensible and realize that maybe it won't be next year.

Basically there are two big factors affecting the timing of Stephen's transplant right now; his size and finding a donor. According to the surgeon, Stephen's just not big enough yet. He's now up to 70.5 cm, which is awesome for a baby like him, but its just not long enough. They could probably get an adult kidney in (an adult kidney is the size of a fist), but they would have a lot of difficulty getting him closed back up. And we'd like for the kidney to fit as best as it can so it doesn't bulge out too much. But getting him to grow long isn't easy and there isn't any way of putting a time frame to that sort of thing.

The second issue is finding a kidney. We have always been under the impression that we could do a kidney swap. Where Bill or I would give a family one of our kidneys and they would give us one. But it turns out that the surgeons aren't really keen on that idea because the swap would be with another hospital, not CHOP, and they don't really like the logistics of that. So they've asked us to find him a living donor. If we aren't able to find a living donor, we'll have to use a deceased donor. Which would be ok, but not ideal. Deceased donor kidneys don't last as long and can also create some logistical issues for us since we live fairly far away from CHOP. So a living donor is the best. But how do you ever go about asking someone to put their life on hold and give our son one of their organs!?!? It just seems unimaginable to us. We could never ever forgive ourselves if something happened to that person or their other kidney! So I'm not really sure what we're going to do.

Either way, we're starting to work on getting Stephen listed on the United Network for Organ Sharing (UNOS) list; aka "the list." He'll go on the list on inactive status (status 7) until we've decided that we're not able to find a donor. Once he goes active, it's usually a couple of months for a suitable organ to become available since children get first priority on the list. But hopefully it won't come to that.

We also learned that there are still some questions that need to be answered about Stephen's liver function. We met with a GI doctor and her boss, the medical director, also came to talk with us. It looks like Stephen's liver function is still ok despite all the scar tissue, but they want us to come back for a special MRI that specifically looks at his liver and the bile ducts so they can get a better picture of what's going on. Thankfully she didn't see any need for a biopsy, so that's good news. What was also pretty cool to learn, is that she sees all if the kids with ARPKD and CHF (both diseases go hand and hand...ARPKD is the kidneys and CHF is the liver) and CHOP has a specific clinic once every three months for all the ARPKD kids. So we're hoping to go back and participate in the clinic next year. And possibly get Stephen into the intensive feeding clinic so we can stop speculating as to why he's not eating and start getting some definitive answers.

I could write so much more about our trip, the transplant process, and our stay at the Gift of Life House, but I think I'll save some of it for later. And I know I'll talk about it some more later, but in the off chance someone might be interested in learning more about being a living donor for Stephen, you can contact the renal transplant coordinator directly. I can answer some questions, but Joanne Palmer at CHOP is the best person to talk with and she's super nice. Her direct number is 215-590-6778 and her email address is

Thanks everyone for your well wishes on our trip!

Wednesday, November 16, 2011

Checked In

We made it to Philadelphia this afternoon and are checked in and finally settling into the Gift of Life House. Stephen's "supposed" to be sleeping, but he must be excited about tomorrow too because he hasn't napped in two days and is now playing in the pack-n-play instead of sleeping. It should be an interesting night since he's never slept in one before. We thought we were actually going to have a big problem because I didn't realize how low to the ground he would sleep in a pack-n-play and the dialysis machine wouldn't work with him on the ground and the tubing running up over the sides. But thankfully I found a way to run the tubing through the bottom of it so it seems to be working fine. But the people here who run the Gift of Life House were so nice that they were actually going to go out and buy something for Stephen to sleep in if the pack-n-play didn't work!

The Gift of Life House is such a beautiful place and everything in it has been provided with donations. It has a gorgeous huge kitchen with a giant pantry and big refrigerators and freezers full of food and goodies that we have access to 24/7 and there seems to always be pastries and cookies and coffee available. Honestly, I would kill to have even a part of that kitchen! There are laundry facilities, a work out room, a meditation room, a play room, and even a small hair salon where volunteers come twice a month to give house guests free hair cuts. And like I said, everything is donated....even down to the no surcharge ATM (although no free cash...haha)! And each night a different restaurant or organization comes and either cooks or brings dinner for the house guests. Of course since it is communal living and not a hotel there are some house rules, but we're more than happy to follow any and all rules. And it seems like we might be one of only a few (3 or 4) families staying here. Who knows, we might just end up staying here long-term during Stephen's transplant while he's in the hospital.

Now I just need the little guy to fall asleep since we have a LONG day of appointments tomorrow!! Hopefully the next time I write I'll have some great news to share from Stephen's transplant team!!

Friday, November 11, 2011

Happy Veterans Day

First and most important we want to say a big thank you to all the veterans out there and those that are currently serving our country and keeping us all safe!! We greatly appreciate the sacrifices you and your family have made!

Because today was a holiday, Bill had the day off! I can't remember the last time he had a day off during the week, so we decided to take Stephen downtown to see the monuments and get some pictures. Unfortunately, because of the holiday, it was really busy and we couldn't find a parking spot anywhere close to the Mall...shocker! So we decided to head to the zoo instead! The National Zoo is free, which makes it a great place to take the little ones. Despite the chilly temps, we were able to see a bunch of animals and had a great time walking around (I think the chilly temps kept the crowds away). We saw the giant pandas, red pandas, lots of birds, cheetahs, zebras, gazelles, and elephants.

Here are some pics from our zoo adventure:

Monday, October 31, 2011

Happy Halloween

Happy 1st Halloween to my little goblin! We celebrated Halloween last Friday in York with Stephen's cousins Norah and Chloe, and then again this Friday at a neighborhood soiree. In true Stephen fashion, the little guy dressed up as Superman which I think is perfectly fitting!

I'm thinking next year maybe we'll all go as kidneys!

Wednesday, October 26, 2011

Big Deal!

Last week Stephen and I had a mini-vacation in York at my parent's (Mimi and Poppy) house for 4 nights while Bill was down in Memphis on a work/play trip. It was really nice to spend some extended time in York with the whole family and to have some extra sets of hands to help! Plus, it's always super fun to see Stephen and his two cousins together!!

While we were there, I got the call from CHOP we've been waiting for! We'll be going up to Philadelphia on November 17th and 18th for our appointments with the transplant team and the gastroenterologist. Over the past few days I've been in touch with the social workers and it looks like we'll be staying the Gift of Life Family House which is a brand new beautiful facility that houses patients and their families while in Philadelphia for transplant-related appointments at all of the city hospitals. The House is a program by the Gift of Life Donor Program. You can read more about the program at

In other big news, Stephen is now sitting up by himself! He says upright for extended periods of time now without falling over and is able to correct himself when he starts to wobble. It's a big milestone for him considering all of the abdominal surgery he's had. Here's a picture I snapped today sitting up on the floor playing with one of his new favorite toys. You can also tell that someone is working on a tooth!!

My Dad and I also took Stephen to the park while at home and I think I was able to snap some the cutest pictures of Stephen yet! I probably say that every time, but these ones are really really cute!!!

Tuesday, October 18, 2011

One Year Ago

One year ago today we received the devastating news about Stephen's kidneys. I started writing a post yesterday about October 19, 2010, detailing all of the events of that day; how we received the news, how we felt, and what we said and did, and what we did next. But as I was writing out all of the details, I got a bit overwhelmed with all sorts of emotions. So I deleted the whole thing. I relive the feelings and memories of that day and the days after almost everyday still and in some ways I need to move on and start focusing on what the future holds for Stephen, Bill, and I and stop dwelling on the past and the what ifs and what we missed. Bill's done a much better job at it than I have and I'm sure for me it will just come with more time; I hope.

So today instead of dwelling on what happened last year, I just want to thank God and who ever else answered our prayers for giving us the strength, hope, and perseverance to keep going when it seemed impossible to keep going and ultimately for answering everyone's prayers and granting us our miracle. He really is the most important and best thing I've ever done and every day I'm amazed at just how much I love him.

And in some small way, I wish our original doctors would remember what happened too and feel bad about doubting Stephen's, Bill's and my strength! Ha!

Sunday, October 16, 2011

Not much to update right now except that we should know by Wednesday at the latest when we'll be going to CHOP. I spoke with them on Friday again and I should hear from the social worker on Monday or Tuesday. Very exciting!!!

Since I don't have a whole lot of news to share, I'll just share some photos :)

These were taken at music class on Friday. It was box day, so all the lids were supposed to bring a box they could play in and use a drum. I almost wasn't going to bring one since Stephen is so young, but I'm so glad I did! He sat in it perfectly and loved banging on it! And it made a pretty cute photo op! I know it doesn't look it (because he always looks so worried/serious) but he really did have a fun time!!

He loves that music class!! I think it's a combination of the music, the clapping, and watching all of the other crazy kids run around!!

And here's a cute video I snapped of Stephen laughing at Mabel. They just love each other!! Last night we were at Nana and Granddad's for a block party in their neighborhood and Stephen had a ball watching all of the crazy dogs run around and wrestle each other. I can't wait until he's able to chase after them!!!

YouTube Video