Monday, May 31, 2010

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 so was.

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

Friday, May 28, 2010

Our new game.

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

Monday, May 24, 2010

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.)

Tuesday, May 18, 2010

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:

Sunday, May 16, 2010

"the easy life"

Oh yeah. I was kidding.

Saturday, May 15, 2010

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.

Tuesday, May 11, 2010

Cutest video!

This was James truly eating a cookie for the first time in the hospital. Little charmer.

Friday, May 7, 2010

Home Sweet Home

Corny, but so true. We got a surprise discharge on Wednesday and have been running ever since. We were totally unprepared. Tom had the wrong truck down at UVA so he could pick up some lumber. So he had to drive an hour and a half home and then drive back, but you know hospitals. It took us nearly 8 hours to actually be discharged. Which meant we got home, had to do a bolus feed, Tom had to go pick up a prescription, I had to set up the pump and IV pole, get all meds organized and get the boy to bed. Stresses me out and will continue to stress me out til I'm used to it. See, if I had a good sleeper, I wouldn't worry so much, but there is a tube attached to a hole in my son's tummy and he tosses, turns, cries, and occasionally runs out of bed at night. Not to mention eventually ending up in my bed.

Here's how the first night's experiment went:

Hooked him up close to 8, sat on his mattress while he went to sleep. Alarm went off at 1am to turn off pump, woke up James, scared him, and he puked. Cleaned him up, went back to bed, alarm went off at 2am to turn pump back on. James fussy for next 3 hrs til alarm went off at 5am to turn pump off again. Never really went back to bed.

Next night:

Same start to the night, woke at 1am to turn pump off, no puking. Alarm went off at 2am, pump back on. Barely back to sleep at 3 am when James starts throwing up. Clean him up, turn pump off, alarm goes off an hour later to turn pump back on. Another hour after that, alarm goes off to turn pump off again.

So let's just say this wasn't working. New plan: increase bolus amounts and frequency and do drip feed from 8pm to 1am and be done. This is working much better. Has only had one vomit, and that was due to waking up in the middle of the night barely able to breathe because of a cold/allergies and his still irritated windpipe and vocal chords from the breathing tube. This was pretty scary at home and we had a nice chat with the pediatrician on call at 1am. He got better with some steam breathing and we went to the dr on saturday morning. There he was put on some steroids to help his throat. Helped soooo much and we're very glad we did it.

At this point though, I was feeling the need to lower my expectations for Mother's Day. Turns out I didn't need to. I had such a great day and got completely spoiled and somehow I'm a little hungover this morning. We had some wonderful friends over all afternoon and evening, and we ate, drank, and had a very fun Easter egg hunt. I'll post some pics later. In the meantime, I'll be planning my spa day my husband gave me, our trailride we're going to go on to see the mountain laurel, and our 3 day vacation in FL we will take once James is ready to have a few days with Nonna. It's okay, you can be jealous.

Tom brought cheese, pate, apples, and champagne after he fell asleep and we picnicked (I know, could be worse, right?)

Had to give him his paci once

Tuesday, May 4, 2010

Date Night

Many many...many moons ago I was at my college orientation. I thought it was unbelievably dumb because I was about 4 years older than anyone there and couldn't care less about the college experience (I was already worn out by my equestrian experiences). But I saw a girl walking around on crutches who needed some help. I'd watched several people walk through doors and not hold them for her (come on people) and then watched her attempt to get a plate of food from a buffet line (ok, that was funny). Of course she wasn't asking for help and so, of course recognizing this tendency I have myself (many of you remember me breaking both my arms, yes at the same time, and continuing to live by myself, drive to tx, lunge my horses--only thing I couldn't do was operate a can opener for Charlotte's food), I went to help. We hit it off immediately and then I met her dad who is one of the funniest people I've ever met. Kaylee and I stayed friends all through college and got married exactly one month apart. It's always been fate. At her wedding I met her best friend, Tara, from high school and we became facebook friends.

Tara is a nuclear medicine tech at UVA (yeah, so smart), and despite having only met me once before, there has only been a rare day that she hasn't come up to visit and check on us. Of course she is a hot blonde chick, so James is in love. I would never have thought about having a fun night out when my son is in the hospital...seems wrong. But after a while, you have to try for a normalish life. So last night Tara came up after a long day at work and watched James while Tom and I had an absolute blast at Zinc, walking distance from the hospital. Great food, great wine, fun kitchen store next door where I got James an apron so we could make cookies together. We actually had a wonderful time together and certainly didn't have to worry about James at all. A full nursing staff sure does take the pressure off.

Our home date keeps getting pushed back. J is still vomiting every morning early so we are changing his feeding regiment up again. We will shorten the overnight feed and add some daytime boluses. He seems to now be handling these better. Still really hoping to make it home before mother's day though. Fingers crossed!

On an unrelated/sort of related note, the following site is for the telethon airing in June where they took a little video of us. Could be scary of me mostly, but there you go if you want to keep posted!
UVA Children's Hospital Telethon

Saturday, May 1, 2010

Just realized something!

I haven't really posted on here how well James is doing in his oral therapy. Just a few weeks ago, James put lots of things in his mouth, but always spit it out, or swallowed accidentally or just sometimes. His least favorite texture (thank you sensory disorder) is mushy, sticky, wet things. You know, like yogurt, baby food, cooked veggies....anything you've chewed up and are about to swallow. Tricky. Also, because he never chewed toys or fingers...ever, he has never really learned to chew and, consequently, to swallow. Pretty hard to teach. But since we've been here and gotten him really good nutrition and I've really had nothing to do but work with him, he is actually swallowing most of what he puts in his mouth. He ate almost a whole cereal bar, swallows chocolate, eats a few bites of a cookie, licks ice cream, and yesterday he ate 10 (TEN!) bites of Koala Crisp (thank you Rachael!). For those of you who don't know about Koala Crisp, it's in the organic section and it's sort of like Rice Krispies, except waaaaay better. Anyway, he's never eaten cereal in his life, never touched it to his mouth, never even touched it with his fingers. Huge! And very exciting. We will be starting outpatient therapy once a week at KCRC and will come for a solid week or two in July!

I need a spa day.

Not so much for the relaxation (although that would be welcome), but for aesthetics. Let's just say I've looked better in my life. At least I certainly hope so. I must have, right? I mean, someone married me, so that's a good sign. The hard part about that someone is that he gets scruffy and rumpled and looks hot while I just look, well, scruffy and rumpled. And I'm not sure it's okay for a girl to look that way.

Hospital life is hard on you in so many ways. You never really sleep, the air is so dry I can't even describe it, and it can be really depressing. And it's not even depressing just cause you're stuck in an ugly room all the time, but in a pediatric unit, you're surrounded by some very sick kids. During James' nap yesterday I sobbed for half an hour because I was listening to a little boy crying next door. He had no right hand or right foot, and his left leg was in a cast. He wanted his mommy to hold him (I'm not really sure why she wouldn't, but I'll give her the benefit of the doubt) or he wanted to walk. It was heart wrenching and I was already feeling a bit emotional. Thankfully an old friend who is a nursing student stopped by for lunch and distracted me.

Most of the kids who were here when we got here are gone. That alone is a part depressing, because we are still here, and part happy because they are going home. It's still bittersweet though, because across the hall from us is the Bone Marrow Unit. So most of our neighbors have leukemia. I saw little Sarah when we first came in. She had long brown hair and was ridiculously cute. She went home today, which brought me to tears again (hey, I cry at So You Think You Can Dance and Plastic Makes it Possible commercials-this is no surprise). Her hair is mostly gone and mostly white. Her parents are some of the nicest people I have ever met. I know that even with all they go through, with their 5 kids at home and one on the way, they prayed and will continue to pray for James every day. Of course, the reason this is so bittersweet is that she will have to return for treatment, like so many of the kids we've seen and played with.

An amazing thing about UVA Children's Hosptial is that they have school here. There are 3 teachers available every day that hold different levels of school for patients and also siblings of patients. James goes to preschool most mornings for about an hour. We have a ton of fun with Ms. Chelsea blowing bubbles and singing songs. When kids are too sick to leave their rooms, the teachers go to each kid's room and play with them and try to engage them. When we first got here and James was in such a sorry state, Chelsea would ride by the room on a ridiculously small car and could even crack a smile out of my boy. I'll never forget that. This is only one of 4 hospitals in Virginia that has a program like this, and one of 16 in the country. We are so lucky to be here.

I feel like we've made so many friends here, especially with all of the incredible, unbelieveable nurses here. James is, of course, pretty famous. Mostly for his hair, but also just his crazy self. He has started running up to each nurse, smiles and says "up", and then climbs in their laps and proceeds to pelt away at their keyboard. Not one nurse has ever put him down to get their work done. They always pull up Nick Jr or a word document and let him take over. I'm working on getting pictures of him with each of his victims. :)

But I'm still ready to head home. Last night was James' first night to not vomit on the overnight feed. So we will increase him slowly and start daytime bolus feeds and hopefully get home next week. He is started on arithromycin (butchering spelling--I'll fix later) which is an antibiotic that's side effect is increasing gastric emptying. He won't have to be on it forever, but it seems to be working and we are very grateful. I'm not sure when, precisely, we will be home, but I'm banking on before Mother's Day and let me just say this: I have high expectations.