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

Tuesday, October 11, 2011


The biggest news lately in our house is that we've "officially" started Stephen's transplant process!! I say officially in quotations because we've haven't had any of the work-up related appointments or met with the transplant team yet, but I've made contact with them a few times and they've now officially gotten the letter from our nephrologists indicating that Stephen is close to being ready for transplant. This is such a HUGE step and an even bigger step because it's happening before he's even a year old!!! I'll never forget going to see the pediatrician for the second time after Stephen was discharged from the NICU and talking about his weight and length growth chart and what the requirements were for transplant. When I explained to her that he needed to be about 10 kilos and between 85 to 100 cm and that we were really hoping he'd get that big by the time he was 1.5 to 2 years old. She just looked at me and send, "Realistically, I don't think he'll get that big until closer to 3 years old." A little part of me was crushed when I heard that. I tried hard not to dwell on some imaginary date for Stephen's transplant, but it's been really hard not to. To us, transplant means a normal life. It means that we can have a normal life, with normal baby/toddler/kid things, no dialysis, we can take trips without having to spend time getting medical supplies organized, shipped, and packed, not having to schedule everything around dialysis, and biggest of all, Stephen will feel good which means he'll be able to eat, not throw up constantly, sleep, and whole long list of things. I worry sometimes that maybe I'm putting to many eggs in this transplant basket; that transplant is going to make some things easier, but it won't solve our problems. But I hope it will at least drastically changes things for Stephen and for us.

But back to what has actually happened! So....after getting the go ahead from nephrology, I made a few phone calls up to Children's Hospital of Philadelphia (CHOP) to try to get an appointment with the transplant team. Of course you get a receptionist/operator person and it's like where do you even begin to describe why you're calling. son has no kidneys and he needs a new one so I need an appointment?! Weird. So I left a few messages and waited anxiously for a few days to get a return call. Then on Friday, September 23rd, I got a phone call from Dr. Baluarte himself. Dr. Baluarte is medical director of the kidney transplant program. His first question is, "How do I help you?" Again, where do I even begin?!?!?! So I explained a little bit about Stephen and who his nephrologists are and he responds by saying, "I spoke with Dr. Weintraub a long time ago about a little baby with ARPKD that wasn't born yet. I imagine that was your son." YES!!! That was definitely Stephen! I go on to explain more about our situation and the fact that we know how amazing CHOP is and that we'd like Stephen to have his transplant there despite the distance and our concern about not being Stephen's blood type. He agrees with me that it might be a little early to start this process, but based on his size and weight and the fact that we don't match his blood type, it would be a good time to meet the team and start the process. OH MY GOD!!! Now I'm getting crazy excited!!! We talked a little more about coming up for a visit and the process and I tell him that we've been through this process with the fetal team before Stephen was born and we met Dr. Kaplan back in November. The next step would be for Dr. Weintraub to write a letter chock-full of all the medical terminology and everything that has happened to Stephen in the past 9 months, and then once he receives the letter, he'll have a case manager call me to set-up all the various appointments and our visit. The letter was sent to Dr. Baluarte on Friday, September 30th (I received a copy as well), and then I got the much anticipated call last Friday (October 7th) from the case manager.

Our visit to CHOP will consist of 5 appointments; 1) Dr. Baluarte, 2) the family meeting which explains the process and all the details, 3) transplant surgeons, 4) social work and psychology, and 5) GI consult since they are a little concerned about the liver issues and I told her about the issues we've been having with our GI doctors. Because we live far away from the hospital, they were going to condense it all into one visit like we did in November, but with a 9-month old in tow, I think two days will probably work out best for us. So we're hoping to have our visit by the second week of November. Wouldn't that be crazy if we end up at CHOP exactly one year to the day we were there last year?!??!??! But this time with our beautiful baby boy!!!!!!

So now I'm back to anxiously awaiting another phone call from CHOP...hoping it will be tomorrow!!

Friday, October 7, 2011

Park Adventure

This morning Stephen, my friend Heather, her little girl Sydney and I went to a really cool park in McLean to enjoy this beautiful weather. Stephen is a little young yet to fully enjoy the park, but he loves the swings!! I thought I would share some pictures and video of Stephen enjoying the park since I thought they were so cute!

YouTube Video

YouTube Video

Here are two really cute pics of Stephen and his girlfriend Sydney.

And the two cutie pies snoozing away in the car (full disclosure...this was actually the scene in the backseat when we got to the park!)