Transplant

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. Uh....my 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!!

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!

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!)

Fun Weekend

Stephen had a big weekend this past weekend full of fun things! It started off on Friday with a pajama day which both Stephen and I loved! Well, probably more me than Stephen :) I can't remember the last time we were actually home all morning to sit at the table, enjoy breakfast and a cup of coffee (for me!), and then just take it easy. I felt a twinge of guilt but quickly got over it!

Saturday was Granddad Steve's 70th birthday so Stephen spent some quality time with Granddad and then we all went out for a special birthday dinner. Despite staying up way past his bedtime, Stephen did an awesome job of occupying himself in his stroller. It's tough right now because he's in such a transition stage between his infant seat and sitting up in a high chair. He's not quite sitting up fully on his own, so those restaurant high chairs don't really work, so he's either in his stroller or on someone's lap. It also makes grocery shopping and Target virtually impossible right now. Big ugh. But he's getting really close to being strong enough to sit completely on his own.

Then on Sunday, we took Stephen to the circus! We got three free tickets from our nephrologist's office (someone donated tickets to the kids), so we figured why not?! It was more of a small performing arts group rather than a circus (no lions or tigers or elephants) but it was fun to take him nonetheless. And thankfully the tickets were free because he only lasted about 30 minutes once the circus started. Oh well!

Here are some pictures from Steve's birthday and one from the circus. Hope you all a good weekend too!

Forgot

In last night's post I talked all about Stephen's and my favorite things right now, but totally forgot to mention Mabel's favorite thing! How silly of me to forget! :). Here's a hint...it's round, woven, and holds all of Stephen's stinky things.






It's Stephen's laundry basket! Her favorite place to be is curled up in that basket. Doesn't matter if it's full of dirty clothes, clean ones, or totally empty, she'll curl right up in it and take a nap.

All About Stephen

I feel kind of guilty lately because 1) I haven't been posting much, and 2) I don't think I've been sharing much of what's going on with Stephen. I feel like not much has been going on in the past couple of weeks because they've flown by and we've been so busy, but I think the reality is, a lot has probably happened. Stephen's seen nephrology (of course) and had labs, we spent a day in the hospital for an albumin infusion (a slow IV drip of medication), had a cardiology appointment with an EKG and ECHO, and both speech and physical therapy. And we "joined the real baby/kid world" and had our first music class last Friday! A BIG step for me (I was very nervous about all the germy kiddos). I won't bore you with all of the details so the bottom line after all of those appointments is that.....drum roll please.....Stephen is kickin' ass!!!!!!!!!!!! He's growing, not just out but up; his dialysis numbers are fantastic; his blood pressure is right where it should be; he's rolling over (huge milestone!!); drinking out of a water bottle, cup, and straw (a little); and sleeping!! I don't want to say too much because I don't want to jinx it, but he's actually "healthy" right now! We're even talking seriously about transplant right now. Which I can't even begin to describe how amazing that feels so I'm just going to leave it at that for the time being.

One of the many reasons why I'm still writing the blog is so that Stephen can read this later when he wants to truely understand everything that's happened to him, but I wish I would have better documented some of his milestones. So since we seem to have hit some pretty big ones in the past week or two and he's doing new things and discovering new things every day, I wanted to share some of his favorite things right now.

1. Jumperoo! You've all seen the video; this kid will jump for hours if I let him!

2. Monkey blanket - it's from Angel Dear and so incredibly soft. Stephen falls sleep with him between his arm as he's laying on his side (it's so damn cute!) and then as the night goes on, monkey ends up across his face. The first time he did this, it scared the crap out of us that he was suffocating, but he loves it when the blanket is over his face. Here's a great picture of Stephen with his blankie






3. Fishy aquarium - it's one of those mobiles that you attach to
the side of the crib. The last time we were in the PICU, Stephen had one of these and would fall asleep to it every night. So of course we had to get one for home too! He now falls asleep to the water sound every night. Sometimes I think he wakes up just as it shuts off and I have to go in and play it again. We seriously should have stock in Energizer or Duracell!

4. Any toys with lights and music but especially his Fisher Price bongos and rolling ball. Plus they've been so great at helping him to reach up and out when he's on his tummy and to start to learn how to crawl.

5. And I think he's really diggin' his new car seat (the Britax Boulevard 70) and jungle animal mirror for the car. It's got a little monkey, alligator and lion that hang down at the top of the mirror and I can sometimes hear him talking away to them. It's so cute!!

6. Oh and he's definitely found his voice!! He loves chatting, screaming, and screeching and especially loves the "n" sound. Tonight I could have sworn that I heard him use the "m" sound too. We've been working really really hard on saying mama!!!!

There's so many more little things he loves like his pacifies, his blueberry teethter and rattle, but I could probably go on and on. And my favorite thing right now is shopping for him! Gone are the days when I leave him in snap-front onesies to make it easier to access his g-tube and such. He's a big boy, so he should be wearing big boy clothes! So I've been on the hunt for shirts, pants, sweaters and jacket. It's not easy finding cute little boy clothes that fit him, but I really enjoy the challenge! He's such a joy and I love spending every minute with him. And just to show off a little more, here's a video I took last week of the first time Stephen rolled completely over all by himself. Now he's just a rolling machine!

Cookies for PKD

I've got something really exciting to share and it can benefit both you and Stephen!!!  (if you're on Facebook, you've already seen this on my wall)  It's cookies to benefit the PKD Foundation!!  And not just any cookies, but amazingly delicous, have-to-have cookies...Christie Cookies!!!

Each month Christie Cookies chooses a children's charity and makes a special tin of cookies with the charity's logo on the front and 20% of the price of the tin is donated to the charity.  Each tin of 18 cookies is $29.99, so for each tin sold, $5.99 will be donated to the PKD Foundation.  Obviously, the PKD Foundation is not a widely-known charity, but Billy's Aunt Mary Ellen, who works for Christie Cookies, got them to choose the PKD Foundation in honor of Stephen!  We're so honored that they chose something so near and dear to our hearts!!! So....we need to buy, buy, buy cookies!!  The more tins they sell, the more money they'll donate, and if they sell enough tins in September, we'll have a good chance of Christie Cookies choosing the PKD Foundation again next year.

And trust me when I say that theses cookies are amazing!!  We actually gave the cookies as favors at our wedding and they make awesome housewarming, Christmas, and thank you gifts.  Click on the picture below to read more about Christie Cookie's Charity of the Month, the PKD Foundation, and to purchase a tin:

Thanks in advance to everyone who supports the PKD Foundation through Christie Cookies!!!!

We are Penn State bound sans Superman (and Mabel). Aside from one night in May, it's our first weekend away from Stephen and Nana and Grandpa Schwartz's first weekend babysitting. We did a lot of training and Tish passed the test, so all is good!! We are SO looking forward to hanging out and pretending we're 21 year old college students again (well sort of) and hopefully watching the Nittany Lions take down the Crimson Tide!

In honor of our little man and little lady back in VA:





Mommy and Daddy will see you on Sunday!! xoxo



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