Monday, June 21, 2010


We had a big big weekend. We celebrated James' big 2nd birthday on Saturday with quite a party. Tents, kiddie pool, slide (that quickly turned into a water slide), BBQ, guns, bows, cupcakes. What more could you ask for? You know it's a good party when 2 kids are naked within a few minutes.
He's been a little off food lately, we think because he is getting so much by tube, he's just truly not hungry. So he didn't display much interest in the cupcakes (here's hoping for next year!). But he did poke it. It's a start.
The best part about the party was that both my parents were here. I love seeing James with Nonna and Poppa. Up until pretty much now, he was so clingy to me, he wasn't as close with them as I would have wanted. But he's got the drill now and I love it!! (and so do they!).
Of course, Sunday was Father's Day, which I hadn't spent with my dad in too long to remember. Aside from a hay unloading debacle where Tom pretty much worked aaallll ddaaayyy, we met up in the evening for some excellent grass fed steaks on our wood fire grill. I think the boys were pretty happy.
I have to say, I lucked out in the dad department, and so lucked out in the husband/father to James department. Tom is so involved with all of James' therapy and is so helpful in what could be a very trying situation to a marraige and life in general. I'm so blessed to have such an amazing partner through all of this, and I couldn't do it without him!

Tuesday, June 15, 2010

Blackberry blogger

I haven't updated in a while, because, honestly, I got a Blackberry and I almost never get on the computer anymore. It makes me a better mom. I do everything from my phone and James never has to walk up to the computer and say, "hold me?" Poor kid.

But a lot has been going on. We decided to get rid of the overnight feed and just do big daytime boluses. Great in theory. In reality, for the past 10 days the kid has thrown up once to twice a day. Misery. I started walking around with a towel. Of course, we've been in constant contact with all his doctors, nurses, and nutritionist, so we're working on the problem. But seriously, that's a lot of puke. It's so sad to see, although after about 1 minute tops, James is running around like mad again. And it's frustrating because it is hard to make up those calories and fluids. We changed around his meds, but it didn't seem to be working. But suddenly, yesterday, no puke. And today, no puke. I'm still super gun shy. I still took a towel into the grocery store just in case. I still carry around an extra shirt for James AND for me. I still sort of always smell puked up Pediasure (that's probably more of a cleaning issue, but whatever). I sort of never want vanilla ice cream ever again. But I'm really hoping we've turned a corner here and things get a bit better and easier every day. Well, maybe not so much easier, but definitely cleaner...

Monday, June 7, 2010

summer fun

Cool surfer dude!

Love my kisses!

Here is the backpack. It holds
all his supplies and the tube comes
out a little hole in the side and attaches
to his tummy.

See! You can run and play
just as well (or better!) with
an extra belly button!!

Saturday, June 5, 2010

Backpack backpack

something something it's loaded up with things and nicknacks too. anything that you might need i've got inside for yoooouuuuu. backpack backpack.
How I don't actually know all the words, I have no idea, but if you're not humming this tune now, you are a lucky one. lol

However, I am a HUGE fan of backpacks. At least now I am. We started doing James' bolus feeds using gravity feeds, which means you attach a 60cc syringe to the end of the tube, pour food in, and raise or lower it depending on the speed you want to administer the formula. This is fine for an ounce or two, but once we started giving James bigger bolus sizes, we had to go really slow. So his feeds were taking about 30 min each. There are 6 of them per day, which means for 3 hours each day, I sat holding up the syringe trying to keep James entertained (he can recite the ABCs, sing several songs, count in spanish, french, and english (only up to 10 but still!), and knows about 50 different flashcards). But it was getting harder and harder to keep the rate steady and also to really do any foodplay. So we ordered up smaller feeding bags and a little backpack that holds the pump and the food. I'll post some pics later. First of all, it's adorable and he loves it. Second of all, it has changed my life! Sigh. I mean, I still clean tubing all day long...seriously, but I can set the rate, play with food (James continues to try little bits of everything--we work with lots of crumbs, yogurt (make daddy dance is still a huge hit), salsa, ketchup, etc), and do dishes while James is still playing. He was having extra vomiting with the overnight feeds, and I was wearing pretty thin on the whole 'set the alarm to turn the machine on and off' thing. But we got the go-ahead to start increasing his boluses and decreasing his overnights. Tonight he will be hooked up for one hour and hopefully tomorrow we don't need it anymore! Fingers crossed. His bolus rate is very slow right now. It takes almost an hour to finish a feed, but he loves the backpack and after a few days, we'll start to increase the rate and hopefully get to about 30 min eventually.
That's the update. His last weight was 22.6 pounds. He gained about half a pound in a week. Awesome. We hope to get him a little bigger so that when he goes for his week of therapy in July, we can decrease his boluses, get him a little hungry, and get him eating more volume by mouth. We also started with the OT at Kluge this week too. He will be working with James in between feeding appts and doing the things that make James feel the best and most organized in his sensory system. The goal right now is to get him eating. After that we can worry about some of the other possible sensory problems, like his vestibular system which seems a little out of whack.
Nonna comes out next week and the big bday party is the week after. We have so much to celebrate this year! We would never be this far or be able to go to the week of therapy if James hadn't ended up in the hospital and on that TPN. Amazing when we think back. We're so grateful to have such a sturdy boy!!