Thursday, July 21, 2011

In Honor of Sticky Bean

Wow, I can't believe it's been a week since I last posted. Where have my days gone?!?! Stephen has basically done a 180 degrees since last week. Last Thursday he had his 6 month checkup at the pediatricians office and while we were there, he had a major meltdown. Thankfully the pediatrician saw the whole thing, so my concerns were definitely validated. She didn't think his meltdown was caused by tooth pain, because it took him so long to calm down and his scream was just too crazy. So she conferenced with the rest of Stephen's docs and ran some tests and sent us on our way.

Strangely enough though, he turned the corner that night and has been so pleasant since last week. We had a fantastic weekend visiting friends on Friday and Saturday night and then had my sister and her family down from PA on Sunday for a BBQ. My nieces (5 1/2 and 2 1/2 years old) got to meet Stephen for the first time! They've been dying to see the baby and Stephen did so great letting my oldest niece hold him. Stephen's known as Baby Stephen in their house and I'm told now belongs to my oldest niece. Too cute!!













But......(you knew it was coming), Stephen still isn't sleeping. We started swaddling him again to see if that would help, and it did for a night or two, but now isn't working. And the thing that always got him to sleep in the past; the swing, isn't helping either. Since he's been napping wonderfully in his crib, I'm thinking that maybe it's the dialysis that's bothering him. Maybe he feels the fluid going in and out more so than he did before because so much fluid was being "lost" due to his hernias? Who knows. But the whole sleep thing is so frustrating because he's so great during the day. He's so interactive right now, starting to take some solid foods and liquids by mouth, and smiling at and mimicking people all the time. If he'd just sleep, I would say he's the perfect little baby! He's just so darn adorable right now!!

On a sad note though, since I blogged last, we (I say "we" as in the kidney support community) lost two kidney babies. One little guy who was 18 months old, passed away during surgery. The other little guy was only one day old. It's incredibly heart breaking and scary for us when this happens. I have been emailing with the Mom of the tiny little baby for months and she, like a few others, have been following Stephen's journey. I'm so shocked that her baby didn't make it. I know I shouldn't be, because I know the odds are stacked so heavily against our babies, but I really thought, without a doubt, her little guy was going to beat the odds. Especially since she had some, albeit very little, amniotic fluid left. Her tragedy truly makes me realize what a miracle Stephen really is and to not take any second for granted because I could have been in her shoes so many times. I know her little guy was placed on this Earth for reason, but that doesn't help ease the pain. God bless you Lauren, your husband, and little Sticky Bean. You fought so hard for him and did everything you could have done to give him the best chance possible. He was and is such a fighter and an inspiration to all the kidney kids! xoxoxoxox

3 comments:

  1. WOW Stephen looks like he is "the man" very "laid back" and loving every minute of the attention. A typical little guy!. Both Norah and Chloe look so beautiful and they make Stephen look sooo big! How truly wonderful to have such great family and cousins and Aunts and Uncles. Just love these photos!!!
    Grandma Tish

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  2. Charlene Cerasa FreedJuly 22, 2011 at 9:38 AM

    Love the photos. Stephen looks so cute and so content. Norah and Chloe are adorable. OK...Kevin looks good, too. I didn't want to leave him out. Glad they finally got to meet Stephen. I know Anne is hoping beyond hope that she has the same fortune this weekend.
    Hope the sleep issues resolve. I'm sure you are exhausted.
    Keeping you all and the other kidney kids in my prayers.
    Hugs to all!

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  3. Lindsey - thank you for your kind words about our Sweet Sticky Bean. Like you, I was confident we were going to bring him home with us (eventually). I know my two sweet angels are watching over all of the kidney kids on earth. Sticky heard me pray for Stephen daily, so I know he has a special place in his heart.

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