ICU

Oh how things change in a couple of hours. We're currently sitting in the hospital outside of the pediatric ICU. Stephen was admitted last night around 10pm for a suspected infection; somewhere in his body.

I knew he wasn't feeling well yesterday when all he wanted to do was lay on the floor or be held. Then he took a long nap and when I got him up, he just laid on the carpet. By the time Bill got home from work, he was pretty warm and wouldn't you know, he had a 103.6 fever and was looking really pale. So we took him to the ER and they started their battery of tests.

The first round of tests showed that there appears to be some kind of infection and he is very anemic. The infection doesn't seem to be in his dialysis fluid, but we won't know for sure for another 24-48 hours. And because Stephen is now aware of what's going on, it's very hard to figure out what hurts because any time the doctors try to feel his belly he freaks out.

Over night they have him Tylenol to break the fever, IV fluids and a blood transfusion. There was no sleeping because they poked and prodded him every hour, but they gave him some more tylenol this morning and he's sleeping now.

So now we're just in a holding pattern waiting to see what the cultures grow if anything. Best case scenario is that this is just a viral thing and they'll get him all tweaked up and we'll be home by the end of the weekend. Worst case; this is a blood infection or something that would cause them to have to pull Stephen's catheter. But I don't think it's the latter.

And of course in true Stephen fashion, Bill and I were planning to spend the weekend in NYC to celebrate his birthday with a show and dinner with friends. A much needed mini-vacation. But I guess Stephen just didn't want us to go without him, so we're all snuggled together in his ICU room instead. Maybe next year we'll finally make it.

Family Photos

As promised, I've got lots of awesome pictures to share!!  A few weeks ago, the wonderfully talented and generous Stephanie Ascari came to the house to take some photos of Stephen and the three of us.  I told her over the phone that I wasn't sure if we'd be able to get any good photos of Stephen since the last time I tried to have someone take his picture, he was very unhappy with me. But in true Stephen fashion, he proved me utterly wrong and hammed it up for Stephanie.  As you can see, these pictures were post-first haircut :)

You can check out Stephanie's work on her website at: http://stephanieascariphotography.com  

Or on her Facebook page at: http://www.facebook.com/pages/Stephanie-Ascari-Photography/153371198047307?fref=ts

My Apologies

So sorry for the lack of posts this past week or two; we've been without internet since Friday and I just got up and running again.  It's the worst possible week to lose the internet since I do 90% of my Christmas shopping online, but I guess maybe it's been good for the wallet :)

Lots of awesome pictures coming soon.....

First Haircut

We took Stephen on Sunday morning to get his first real haircut!  His hair and the curls on the sides were really cute, but it was getting pretty unruly and since he's almost two, we figured it was about time.  Bill had found a barber a few weekends ago in our neighborhood and had seen a lot of kids getting their hair cut that day, so we figured we'd give it a shot!

I wasn't sure how it would go and at first it was pretty dicey (Stephen wouldn't let the poor guy near him), but thankfully another Dad in the barber shop suggested I give Stephen a video or something to watch to distract him and that worked pretty well.  He loves anything on my iPhone, so that worked pretty well while the guy was cutting his hair.  But anytime he tried to get the trimmers near Stephen's head, he freaked out.  But I think the results are pretty good.  It's really short and I definitely miss those curls, but I do know it will grow fast and next time I might have him leave it a little longer on top.  But there's no mistaking that this baby boy is now looking more and more like a little boy!!

Old McDonald Had A...

Last Sunday we took Stephen to a nearby park that is a working farm (thanks Grandma and Grandad Schwartz for finding it) to see the animals and had some great photo ops!  Some of Stephen's favorite words and sounds are animals sounds and he didn't disappoint!  You can hear Stephen in the video "talking" with the rooster and the rooster talking right back all the while the cows in the pen next door wanted to get in on the conversation.  It was hilarious!!!  And it was actually a pretty cool looking rooster!






And here are some pictures of Stephen checking out the sheep; another one of his favorite animal sounds.  Lucky for us, this farm is only about 10 minutes from our house, so I'm sure we'll be frequent visitors to the Frying Pan Farm Park!

Halloween Pics

As promised, here are our Halloween pictures! Hopefully you can tell from the pictures that we had such a blast taking Stephen trick-or-treating for the first time. I actually think Bill and I might have had more fun than Stephen; well,especially when we tried to "force" Stephen to wear the lion mane. He was not a fan. But he definitely understood what we were doing and had fun playing with his candy. And he even ate some of a lollipop which was so cool (considering he doesn't eat a thing)! And we got a chance to meet all of our new neighbors. All-in-all it was a successful Halloween!


Sorry if the pictures post out of order.

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 ado...here'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 fret...no 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!!