Pix From Hawaii (Oct)

I know, I'm behind on posting pix. Sorry. But to ally anyone's anxiety about the last post referring to inpatient infusions: no worries, this is just a precautionary measure in case Bo experiences an allergic reaction to the infusion. As with all medications for children, the toxicities and dosing are usually done off-label. The liability and study design to include children on a label are just to high and complex for any pharmaceutical company to openly pursue out-right. So, what usually happens is the pediatricians and pediatric specialists just have to guess and hope it works. I know. Scary. But what can you do? Anyway, by the time a product is on the market in the US, those safety issues are usually very well documented. And then, after it's been used in the pediatric population for a long time and there's a lot of data from its use on the market, a company will THEN apply to include children on the label. More to the point, Bo's infusions are so low risk that we usually just check into the floor, get him hooked up and go straight to the playroom, returning only to watch some Thomas Train DVDs that Child Life has brought by. They only do vitals before we hook him up and right before we leave. But it's a good precaution in case something does happen. And, hopefully, after the 6th one they will let us do these from home.

Merry Christmas!!

Eating is still sporadic, but sometimes, Bo is quite enthusiastic!

The Hugeness!

Sing Along

Gearing Up

How is it that I'm gearing up as the year is winding down. All the anticipation of the holidays has me paralyzed this year. While I appreciate the mellowness of Hannukah: candles, potato pancakes, one simple prayer; trying to explain to a 2 year old that the every-night-a-present thing is over is a bit trickier task. Thankfully we are deflecting that with the promise of Christmas. Which probably means nothing to a person who has no sense of time (see bedtime rituals, and pushover parents; jk). I have to admit that I'm a little afraid of what 2010 will bring. When Bo was born, we were told that he would not be here by now. And I just could not bring myself to plan past 2009 in any concrete way (outside of my obsessive financial planning- which also hit an existential crisis: how many dependents go into our assumptions? what about a college fund? we started one, but it was half-hearted and a little thin to start). Our whole over-doing it with toys and books had a certain urgency, with the dark underlying thoughts of impending silence. Where my girlfriends were buying clothes a year in advance at clearance sales, I did not have the heart to shop for things that might go unused. Now we are paying for our prudence, wading ruefully through trains and puzzles clogging the living room, finding all his pants have become high-waters, reassessing the thinly funded pre-school saving. Now we are scheduling pre-school tours (my god, they are expensive!) and re-prioritizing home rehab/maintenance projects. I am dreading the trip to Ann Arbor; they just royally mess with the kid's sleep habits. But excited for Bo to spend the day with his GungGung and PoPo. I am being scolded for not dressing the boy in clothes that fit, but find delight in the good fortune of everyday parenting that I was warned would not be ours to have.

As usual, our Xmas cards will be late. I'll just have to post and send e-cards this year. Or something. I admit, if it weren't for our desire to show Umich how well Bo was doing, the last 2 years' cards may never have been sent at all. The same feeling is probably driving the production of this year's, too.

These pix are from our visit with the F-squared family in Hawaii. They are so awesome. We are so glad we got to spend as much time with them as we did!

Bringing out My Best Me

Hawaii is sunny and warm. The days are full of crisp contrast between objects and blue sky. This surreal sense of optimism-made-flesh seemed to have a somnomulent effect on me. It was just a dreamstate. A week-long dream. The hospital on the otherhand is a manmade environment of highflow HEPA air, drying and cold. Staff working on 12-hour shifts and artificial lights. I am at a heightened level of awareness. Those monthly infusions remind me of the dread at being admitted urgently or emergently for unidentified distress. I am grumpy, but alert. Thankfully for all of us the 2-hour infusion never went past the 5 hour mark. I was not happy, but happy enough to be going home the same day.

Say Cheese!

I like watching this one, especially as I brace myself for what Dr. Doom predicted as "it" getting worse before getting better. "It" being Bo's level of discomfort. And the solace comes from the thought that he's gotten rid of all his kidney stones and is on the medication to prevent new ones from forming.

Sunday Morning (10/25) AM, before the wedding

The good news is that huge stone that had been banging around his kidney is no longer there. In fact, there was no evidence of stones at all in the ultrasound he had yesterday (was that really just yesterday?!). The bad news is that we think he is in the process of passing it, which explains the sudden increase in reflux that kept us all up the last few nights. But thankfully, that is tapering and we are all catching up on sleep. And more importantly, the dude is feeling much better.

As usual, Dr. Doom was as doomful as he could manage. He didn't even mention the fact that no stones were visualized, just that he thinks it is plugging a duct in that kidney. Way to downplay any good news. Good work. But he was totally amenable to contacting the guy in Detroit for us (who might have suggestions regarding monitoring Bo's bone density and maybe, please, maybe, some solutions?). In fact, this was the least tearful or anxiety inducing visit we've ever had with this group. Bo was downright cheerful. And with as much doom as he could muster, he had to concede that "Bo is not a sick kid." Say it with me: Miracle! This was the first visit he didn't insist that transplant was our eventual fate. He didn't mention it at all.

But we had called in a panic about all the throwing up at 5pm Tuesday night, and got an ultrasound appointment for 9:45am the next day AND a clinic appointment with Dr. Doom at 10:30am. Doomful, yes. But also reassuringly dedicated. I send him Koo's info that afternoon and he drafted and sent his query on our behalf as of today. Compassion, dedication and love. Seriously, if this guy moves, we will have to follow.

Santa, Candles and Rodney Reindeer

There is a carousel in the mall, but the minimum age is 4yrs. We're not so much the consumers, but we're already grasping at straws for what to do in the evenings to get out of the house, now that it is getting dark so early, and now that Bo is napping like a toddler (one monster nap that consumes the bulk of the afternoon). Fortunately, we have Rodney the Reindeer (a book given to Bo by one of our fave family members, thank you!). I hope he helps take the sting out of being "too little, right now." This book has also made the prosepect of Santa and reindeer especially appealing this year. Hopefully, Bo's sleep schedule cooperates and we can get to the Xmas tree farm that has both this weekend (wooHoo!).

Cruising

Trains Trains Trains

Working on the Mac

Thanksgiving

Watching Thomas DVD's after work.

Studying Thomas

People take their reading very seriously.

The 2nd of 2 Casts

The second of 2 casts was blue. It was removed less than 24 hours before our trip to Hawaii. Here at DeVos Children's Hospital, he is getting a pamidronate infusion, watching Thomas the Tank Engine DVDs (thank you Child Life!) and mugging for the camera in his Pensacola Beach Tee (thank you, Grandpa Bruce!)

IEPs and 504s (IHP, too?)

So the bad news is that Bo's teachers will no longer be coming to the house and he will no longer be eligible for tutoring. The good news is because at our annual IEP assessment, it was determined that he had met and exceeded all his goals and he is now academically at or above the skills expected for his age. WooHOO! However, because of the gross motor set-backs resulting from his broken leg, he still has some catching up to do in that area, and he will continue to get PT services for that area of development. On a PT note, he continues to make strides in feeding clinic, showing greater tolerance for tooth brushing, and we are setting the goal of complete tooth brushing in 3 months.

We were able to get his H1N1 from the pedi, too. Hooray! Bo was not too happy about that, but quickly came around when I found the reward sticker stash. He's starting to express new ideas, not just what he literally sees, and not just parroting back what he hears. It's pretty hilarious. We are so blessed.