On the seventh day, God rested.

On the 702nd day, Clare rested.

Let me set the scene for you:

First of all, I carried a purse today instead of a diaper bag (which eventually got so full I had to turn it in for an overnight bag).

Met Annie at the Poplar Springs Spa in Casanova. Everybody in VA should go. It's lovely. I had a fantastic massage (seriously, I don't even normally like spa type massages that don't make me hurt like Angie {The Right Touch} or Dagmar in Dallas. They just frustrate me. But this girl was awesome---relaxing but also worked out some kinks.) Annie had her facial and then we switched people. I got my eyelashes tinted which I L.O.V.E.! And let me just say this. I have been a big fan of facials ever since I started going to Robyn Straza in Dallas. She is amazing. Seriously. But the last time I had a facial from her was right before my wedding. I looked pretty good back then. But lately I look in the mirror and feel the need to put makeup on just to look at myself. Bad sign. My skin just looked way too pale (not in a cool Twilight way) and tired and dull. I have to say, it looks way better now.
Then we had lunch and ordered way more than any other spa person. They asked later if we needed anything boxed up. Um...nope. Next came a coconut body scrub and a pedicure with super cute pink polish. I feel girly, which is refreshing. In between each session, Annie and I met up in the spa lounge to debrief. And at the end of our day, we ordered a glass of champagne and sat by the pool. Our package was called the Beauty Bliss package...it so was.

I came home to James naked in a water trough on our front lawn yelling, "MOMMMYYYYY!!!"

Our new game.

This past Wednesday we had our first therapy appt at KCRC down at UVA. OMG. Okay, just kidding....so many letters.

But really, it was great. James and I spent half the day there consisting of 2 half hour appts with Polly, the inpatient speech therapist. In between appts we played outside in the playground and stared at the fishtank. Cooooool, to quote James. The first appt was mostly James and Polly getting to know eachother a little. But the second appt was very exciting. James ate ice cream, bananas, and popsicle from a spoon. I was ecstatic! What is so interesting now is that James is at an age that you can bargain with him or persuade him to do something.

This is what led to our new game: Make Daddy Dance! Hilarious. Basically if James takes a bite of food, Daddy will dance around like a crazy person, and may or may not snap a towel. James ate 2.5 ounces of yogurt just to Make Daddy Dance. A close second is Make Mommy Dance (but seriously not as good) and third is Throw It! Oh yes, if he takes a bite, he gets to throw something. Really, I'm fine with it. But I feel really bad for his first grade cafeteria lady...

Anybody ever have this experience?

So James is asleep (yay) and I finally have a few minutes where I do whatever I want before I pass out from exhaustion. So I'm returning long ignored emails. I hear clattering on the back deck (2 stories up) and look out the window to our 3 lambs peeking in at me. My 90 pound wolfy dog, Charlotte, jumps up to attack and chases them around the house and off the deck. Tom pokes his head in and informs me that da bing is mad because she hasn't finished her dinner and the sheep are on the deck.

Really, no one has had this happen to them before...?

Just so Ms Jenny knows I can talk:

Hard to imagine that just a few months ago we were worried about James' speech. He would speak without moving his mouth and pretty much only used vowels. Throughout, well, everything, we've been really impressed with how he has met every developmental marker (aside from actually eating food). Considering his level of nutrition, it is impressive. But we've wondered for a while what he would be like if he actually ate enough food and got enough nourishment. Kinda scary to think how much energy he would have....anyway, here's a little video just to put everyone at ease!
(by the way, I just want to point out how difficult it is to get any kid to do anything on command, on video---be impressed.)

a good checkup

On Monday we went for our first post hospital checkup. Allow me to digress for a moment---many people can identify with this problem, though mostly when it comes to the dentist. I myself have been to the doctor way too many times, and for the majority of James' life, we've gone to the pediatrician every other week to ever week. Now, that's not really fun and it's time consuming, etc, etc. But the reason people start having a fear or aversion to a doctor is when things go badly. "Badly" can mean different things to different people. Some people hate shots and having their blood drawn; I couldn't care less. But also just when you get bad or frustrating news over and over and over and over...and over, you just don't want to hear it anymore. My endocrinologist has been seeing me since I was 17. Trust me, I wasn't a good patient. I am now though, but when I was pregnant, he ended up putting my on blood presssure medicine because I would be so nervous when I went to see him every week, even though everything was going pretty well. I'm pretty sure I'll never get over it. It's sort of the same for James' visits. Luckily they don't take my blood pressure, but I just dread going. Most of the time I know what they're going to say. We have a baby scale at home and I feed him. I feel like I should just call in and let them know what his current weight is and avoid the drive and the wait and the torture.

So Monday was very refreshing. Really, not much has changed, but that's a good thing. We've put some boluses together so he is eating a little more at one time with a little more time in between feeds. Otherwise, we're not changing anything and will start at KCRC next week. It was fun to see doctors be so happy in James' presence. Dr. Borowitz even got a hug from James. Following our appt we snuck up to our old home and visited James' 'harem'. It was pretty cute when he ran down the hall (and tried to walk me to the play room) and we saw a whole bunch of his nurses in the hall. He was swarmed and loved every minute of it.

We got home to the following video:

And here James is just showing off:

"the easy life"

Oh yeah. I was kidding.

pics and the easy life

Several people have asked me if life is easier after putting the tube in. In short, no. But okay, here's the long answer. The answer is no because any comparison we have to 'life' is life before James got his most recent illness. When we originally decided to put the gtube in, we had a pretty good schedule, James ate pretty good bottles, and we knew what to expect in a day. So the tube was planned as part of therapy, and to be used to supplement his oral feedings. That all flew out the window when James stopped eating bottles. Now, it's not the end of the world that he did stop bottles. He is eating real food better than ever, but just not to any sustainable degree. So we're still moving in the right direction, we're just taking a different path. And that takes some getting used to, especially me. Emotionally it's been very hard. (Even though, rationally, I know it's all going well---we're all aware that sometimes I'm not rational.) Tom said it right when he said it's sort of like having an infant again, which is extra hard because I feel like, feeding-wise, we've had an infant for a loooooong time. But we are currently tube feeding every 2 hours, 7 times per day, with an overnight feed of 5 hours. This means I have to set an alarm for 5 hours after I turn on the pump to turn it off, flush his tube, etc. That's not such a big deal if he, or I, slept steadily the rest of the night. But we don't. I am barely sleeping right now. But I do know that soon we will add more to the bolus feeds at each time and put more time in between them, so it's not forever. Plus, the feeds are going very well; there's been no puking in a good while! Sooo....basically, things are good, but just definitely not easier just yet. We go for a checkup next week and I'm very much looking forward to what is next. I think James is ready for more. And in two weeks we start therapy at KCRC, which is even more exciting because OT will meet with us in between his 2 feeding therapies on Wednesdays. It's going to be amazing and I actually think James will have lots of fun.
I have also, amazingly, actually booked my Mother's Day spa day for Memorial Day. I mean all day. My friend, Annie, and I are getting completely pampered with facials, massages, pedicures, body scrubs, lunch, swimming, etc, for an entire day. Without sounding too self absorbed (shut up Cook), we so deserve it.

The following are a bunch of pics from the hospital and homecoming. They all downloaded funky and I just don't feel like fixing it, so here you go:

James with awesome preschool teacher, nurses, nutritionist, PCAs, and all friends! (and his front facing car seat ride home!)

James with his school friend, Paris.

as you've seen in previous pics, James charmed all nurses to let him on their computers. It was pretty hilarious!

more ice cream.

where we lived.

totally inappropriate behavior.