Tuesday, January 17, 2012

Once again, I have been very bad at sharing what's happening with our little Superman.  Sorry!  It's been over a week since I posted.  I'm not really sure where the time has gone and what we've been up to but basically I think we've just been catching up on doctor's appointments, doing labs, speech and physical therapy and getting back into the swing of things after all of the excitement of the Holidays and Stephen's birthday.  Since his birthday we've seen the pulminologist, the GI doctor about Stephen's g-tube and his liver, the pediatrician, the dialysis nurse, done lab work, nephrology, and had physical therapy.  I originally thought this would be a pretty slow week for Stephen and I, but things turned around this morning when we added physical therapy, dialysis clinic, and a Synagis shot to the "to do" list for tomorrow alone.  Synagis is an injection that helps prevent the respiratory virus RSV that is prevalent among babies and kids with complex medical issues.  The only problem is, it's extremely expensive and insurance companies fight tooth and nail to prevent you from getting it.  We were able to get Stephen his first injection last month before his surgery, but our insurance changed on January 1, complicating matters.  You'd think since he's already caught a respiratory illness this season and a hospital stay is WAY MORE expensive than the shot, the insurance companies and Medicare would pay for it no problem; but, that wasn't the case.  So now he's more than 10 days behind schedule for his next injection.  But I'm hoping it will arrive today and he'll get it tomorrow.  Something is better than nothing I guess.
But on a positive note....his labs came back today better than they have since his last hospitalization which means we're back on track with his dialysis and medications and we were finally able to complete his tissue typing lab work for transplantation!! We've been on hold for the past two months from getting him listed because he has been so anemic and they needed a lot of blood for the tissue typing.  But we were able to complete it yesterday, mailed it to CHOP, and I hope that by the end of the month Stephen will officially be on the kidney transplant list!  He'll be inactive on the list, but at least he'll be accruing time and it's a sign that we're moving forward!
In other big news......Stephen is now eating solid foods!!! Some time between Christmas and New Year's he decided that he was ready to eat.  I had been working with him about once a day on trying different foods and tastes, but really hadn't gotten anywhere.  The one day I put a bunch of rice puffs down on his tray, walked away to do something, turned around and saw him shoving some in his mouth.  It was literally like a switch went on and he decided he wanted to eat.  Since then he's been eating rice puffs like a champ (we've plowed through three containers since then) and will take a few bites of baby food here and there.  We've learned that he likes salty foods the best (probably because he has a natural sodium deficiency) and things with a crunch.  Once things get soggy, he loses interest.  He also loves one of my ultimate favorite snack foods....white cheddar rice puffs like the one's made by the Pirate's Booty people (http://piratebrands.com/products/smartpuffs/wisconsincheddar)  So we sit together at night and snack.  I love it!!!  I'm even going to attempt to start making some of my own baby food for him.  That way I can salt it a little more or add combinations of flavors that he might like better than store-bought baby food.  We'll see how this new endeavour goes!!  The little guy still doesn't have any teeth, so we're a little restricted on what he can have.
I snapped a few pictures the first time Stephen delved into his rice puffs that I thought I'd share and then one of him munching on a Mum-Mum (another type of rice cracker) and pretending to enjoy a beverage.  He does drink a little water here and there, but only out of a cup or a water bottle.  No sippy cups or bottles.  It's hilarious to watch!! Oh and the person that benefits the most from Stephen's new found love of eating....Mabel.  She cirlces underneath Stephen's high chair and around him when he's playing on the floor like a little shark.

Monday, January 9, 2012

Stephen's Safari Adventure

This past Saturday we held a little birthday party to celebrate Stephen's first year of life with family, friends, and some of Stephen's nurses and doctors. Bill and I had decided long ago that if Stephen made it to his first birthday, we'd have a big party to celebrate....and celebrate we did! And since some of Stephen's all-time favorite things have been jungle themed, aka his first pacifiers, Manny the Monkey, Jeffrey the Giraffe, and Eli the Elephant; we went with a safari theme. It was so fun to plan and "hunt for" jungle animals, and I think it turned out perfect for our "little monkey!" I know Stephen won't remember it all, but I hope that when he looks back at the pictures, he'll be able to feel the love! And I know it was kind of crazy to have such a party for a one year old, but I just couldn't help myself :)

The captions are for you, Aunt LuAnn!! :)

Getting dressed up for the party. Stephen went as the bush pilot.

Hangin' with GrandDad. Seriously, do I really have to wear this thing!?

Year in review....subject: Stephen Schwartz

Oh no...what's happening!? Are they going to put something on my head again!?

Oh yes! Yes we are!!


Gimme, gimme, gimme! Stop taking photos and let me at it!

Oh boy, everyone's looking at me. What am I supposed to do now? I'm a rookie at this gig.

Hmmmmm....what is this stuff?

That was pretty good...but I think I've had better. Just kidding! That cupcake was the BOMB!

Oh Mom.

Hi Dad. Show is over. I'm exhausted after all that. Best part; watching Mom trying to blow out my candle. You'd think with all of that hot air, she'd blow it out no problem. Not so much. Hehehe.

Thanks for sharing my secret with everyone. I did eventually get it out :)

Happy First Birthday to my little Safari Man!! I love you!!!

Wednesday, January 4, 2012

I'm 1!

Thanks everyone for the birthday wishes!!

Happy Birthday!

Can you believe it....this exact time last year we were doing this:

And this:

But it wasn't all smiles all the time. I was also feeling like this:

That was about the time my epidural started to wear off and I got some more happy drugs!

But pretty soon, the doctors decided it was time and out came Stephen Charles into the big world!! Stephen was born at 6:58 pm, weighing in at 8 pounds, 6 ounces and 19.5 inches long. And most importantly, he was able to use his little lungs.

What a year it's been!?!?

More pictures of the birthday boy to come later!!

Tuesday, January 3, 2012

Dear 2012

In my effort to post last night without getting too heavy and deep, I skipped right over writing a “goodbye 2011, hello 2012” post.  But the more I thought about it, the more I think I need to get my thoughts on the past year and hopes for the next year on paper.  Last year’s post was short and sweet, but straight to the point.  You can read it here:  January 2011.

Based on my own words, I guess I am forever indebited to you 2011!!!  And thank god because who knows where I’d be and what I’d be doing.  I can speculate about what would have happened to me and my relationship with Bill, and I don’t think it would have been very pretty.

So what exactly are my thoughts about what happened in the past year?! A HUGE mixture of varying emotions.  It was a stressful, emotional, hard, exciting, scary, lonely, joyous year.  I’ve become closer to my immediate and extended family in the past year and I think they’ve become closer to me.  I’ve learned more about being a nurse, a doctor, and about the human body than I thought I would ever know.  I’ve learned more about health insurance, Medicaid and Medicare than I ever wanted or should know and how the entire system as a whole is a complete failure for those who actually need it.  And that as much as I appreciate your sympathy, lady in the call center for United Healthcare, your sympathy won’t pay the bills for a nurse for my son or for his Synagis injections!

There’s no doubt about this next one; I’ve aged probably 10 years in this past year.

But I’ve also learned so much about the good and the generosity in people, and how much the care of a complete stranger means in time of need.  And also how to be a better person for someone else who is need.  Although I am resigned to be a better friend in 2012.  I am terrible at calling people!!

I’ve learned that I can handle things I never would have imagined that I could and I’ve gotten over my fear of conflict and challenging people when I feel that they’re not appropriately addressing our concerns.

And most importantly of all, I’ve learned to love a little boy more than I could have ever imagined.  I’ve always loved him, even before he was born, but I find that I love him more and more each and every day and I’m so incredibly proud to be his Momma. 

So 2011…you did really good, even spectacular at times, and other times, you were a complete asshole.  We could have done without all of the hospital admissions and the scares, and the stress.  Calling 911 was definitely an all-time low.  But ultimately you pulled through when it really mattered.

And for you 2012…I expect you to be even better!  And by that I mean keep our lives normal, give us a little bit of peace of mind and maybe even a break (or even an vacation) here and there.  But if you really want to blow 2011 out of the water, you’ll send Stephen a new kidney this year!! That’s my hope for 2012!

Monday, January 2, 2012

Happy New Year!!!

Once again, I must apologize for not writing in such a long time.  I can't believe it's almost been a week?!?! I wish I had a good excuse; but, I don't...not really.  I've just been kinda lazy.  So here's what we've been up to since last week:

  • Not sleeping
  • Having one or two health scares with Stephen (not cool)
  • Getting ready for Stephen's 1st birthday (YEAH!!!)
  • Spending time with my extended family (nieces, sister, brother-in-law, parents)
  • I was out of town for a night
  • Celebrating New Year's Eve
  • and watching lots of movies
I say not sleeping because ever since we came home from the hospital this last time, Stephen has been waking up multiple times throughout the night.  And not just waking up and crying, but screaming.  Like he's being poked with hot pokers.  The only thing that calms him down is holding him, but the second you lay him down, he starts screaming again.  The doctors think it's some sort of night terrors and/or memories of being in the hospital and being messed with.  What's funny is the only two nights he's slept through the night, have been the two nights my parent's have been here!  I think Stephen's just showing off!! :) But it's left us with really long nights of getting up with Stephen and finally having to let him cry it out.  It hasn't been easy!

The health scares have been the non-stop screaming at night and his new catheter site leaking.  Christmas night, I went in to his room to try to calm him down in the middle of the night and noticed that the area below his catheter was wet. Not good.  Thankfully the nephrologist met us in the office the next day with the dialysis nurse and checked it out.  Apparently, the site hasn't completely healed yet.  So they backed off on his dialysis a bit and I've been changing his dressing more often at an attempt to keep his skin and the area dry.

I don't think I need to say anything about #3!  Can you believe his birthday is on Wednesday?!?!?!  I've been thinking so much about last year lately, and I'm sure I'll have more to say about it later.

Unfortunately, I wasn't out of town for anything particularly fun.  I didn't mention this on Christmas because I didn't want anyone to feel badly or sad, but my last living grandparent, my Grandma Noll, passed away on Christmas morning.  She had been sick for quite some time, so it wasn't unexpected, but still sad none-the-less.  She never met Stephen and I don't think she could ever comprehend that I had a little boy, but I'd like to think that when I told her I was pregnant in Spring of 2010, she understood for at least a little bit of time.  What I am happy for is that she's now in a much much better place, she can be reunited with my Pappy, and is now another guardian angel for Stephen. 

Bill and I were lucky that my parent's were able to come down to VA for New Year's Eve and babysit Stephen so that we could go out for a night.  Friends of our has a wine tasting party, and it was fun to get out for a night and celebrate New Year's with a bunch of other people.  The last time we celebrated with more than just each other was the very first New Year's we spent together in 2004/05!

Aside from that, we haven't been up to too much.  We've watched a lot of movies, a lot of football, ate a TON, and slept in.  I can't say that I've really made any resolutions for 2012.  My only hope for the New Year is to keep Stephen healthy, out of the hospital, and that he continues to grow longer and stronger so that he can receive a new kidney.  And on a personal note, to work more on my relationship with Bill and to be a more patient wife.  My hope for us (just Bill and I) is that we'll get a chance this next year to spend some more time quality time together without feeling the weight of the world on our shoulders.  Okay, so I guess I do have some resolutions for 2012!! :)

I hope everyone had a wonderful and safe New Years and happy 2012!!!!!