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.


  1. Hi Stephen,
    Welcome to the world of snack foods!!! We are sure that this eating adventure is going to be fun for you and especially Mabel. You are looking extrememly handsome in that beautiful sweater--Red is certainly your "color". Glad to hear that all is going well and that you will soon be on that all important transplant list.
    Hugs and kisses...
    Aunt LuAnn and Uncle Dick

  2. I am so impressed that he can drink out of a cup!!!! That is a really advanced skill for a 1 year old. Awesome!

    As for foods, I have had good luck with peas and sweet potato. I steam both of them (love ziplock steam bags, btw) until done but not mushy. The peas get squished a little bit so it doesn't become so much of a choking issue. Cole loves them both. Easy finger foods. I've seen hints of rolling slippery foods in panko or cheerio crumbs so he can pick it up but the crumbs just wind up mushy too!

    So happy to hear he is onto solid foods. Congrats!

    Julie McClelland