hot air balloon festival

Last weekend the boys & I went to the hot air balloon festival in Hudson




Daytime was fun, but after the sun went down is when it got breathtaking. Lars with his CVI is able to use his what little vision he has best when everything around the periphery is totally dark and whatever he's looking at is brightly lit, colorful, and preferably large.

Well...guess what that makes the "balloon glow" event? About as perfect as you can get. He was so excited, not only by what he could see, but also by the cool sound that the fire made when they pulled those chords. They would glow for just a few moments, and then would need to cool down again. The anticipation...never knowing when it was going to happen...Hanging out... Larsy bliss.

step-by-step feeding

What goes in is vanilla pediasure, which we get delivered by the case.


The bags are also delivered. We use one every 24 hours.



Pour the pediasure into the bag, do the special getting-the-air-out trick which includes priming the tubing (not pictured), & it looks like this,


hook it up to the electronic pump (rechargable battery), and set the pump for how many ml per hour it should drip (here 150),


and set it for how many ml total you'd like it to drip in before stopping (here 420).


Put it all together in the cute little backpack that's made to hold it all,



connect it with the tube that goes into Lars' belly,


hang the backpack & try to keep Lars from chewing on the tubing. Good to go.

tonight's sleep

OM........OM........OM........

Joa, who has been feeling more than slightly possessive of his few-n-far-between loaves of white bread recently (swear I found it in the cupboard like that), won the 'rock star' costume contest at sailing camp last week. How could he not? More Joa at boating camp pics here. He did sailing last week in the mornings & was completely enthralled.

career ambitions

"Joa the firefighter" (or as he used to say, "VoVo fighterfighter") has been a theme for a number of years. Here's Joa at 3:
And last week:
Joa & Monica were in Mike's truck. Mike's a real firefighter in Milford & Joa adores him.

bikes

Joa & Gannon learned to ride bikes this summer, thanks to Tamara. These shots of them are on the rail trail between our houses.

morning musings

When I was out with Joa when he was an infant and toddler, people used to stop me in park, on the street, in the isles of stores and rave about how beautiful he was. In exchange for his beauty and radiant smile, they would gift him with their admiration and reflect back to him a smile of appreciation. He has stored in his self somewhere hundreds of these experiences. Sometimes I see them emerge in spontaneous resplendent moments. Sometimes I see him warp them into an “ain’t I cute? now give me what I want!” look.

Lars is not a cheap date, not a kid one can flirt with, wink & smile at, then move away from with the feeling of some kind of brief relationship having been established. If people want to relate to Lars, they have to invest in him. They have to give him their time, take a risk, offer themselves in a more committed way. For a proper meeting he requires their voice, hands, attention, and their open heart & mind. That’s a lot to ask in New England. Quite intimate. Quite rare. If people extend themselves in this way, he will give them everything he has in return.

The other day we had to bring Lars with us to couple’s counseling. So it came time to introduce him to our counselor. When people are as perplexed, stilted, and clueless as she was in that moment, we generally guide them by suggesting that he needs to hear their voice, and it would help if they could offer their hands to him to feel, that he knows people by their hands. A lot of folks are palpably hesitant to do this. Too close, too intimate.

Although he can absolutely feel and take in their hesitancy and rejection, these are some of the moments when I feel grateful that he can’t also see and ingest the looks they reflect back to him. Yes, blindness is a lack of information. All kinds of information. In those moments I wish I saw a little less.

growing without eating

Happy to report that Lars this week weighed in at 37 pounds, and is 3 feet 5 inches tall/long. A milestone because he was 35 pounds before he got ill last December, and went down to 30 during his medical crisis. Finally regained that weight and added two.

The odd part is that for several months he's been on a 97% food strike. The guy who used to eat 8 oz. of yogurt, 1/2 cup of cheerios, 2 scrambled eggs with cheese, and drink 7 oz. of water daily before 9 a.m. has now been known to consume--over the course of an entire week--maybe 5 cheerios, 2 chips, 3 bites of hummus, and 1 sip of water. Every once in a while we have a breakthrough meal when he eats 30 pizza goldfish or takes 10 bites of applesauce, but they're rare & if he's not in a familiar chair in a familiar, quiet environment, forget it.

Doing well with the pediasure, water, meds, and venting via g-tube, though, and he seems to have passed the constantly gagging phase. Liquid food runs in through an electronic pump (I'll post a picture soon) that you can set for exact rate & dose. Lives in a little backpack that we carry when he's hooked up, or sits on the bed overnight. Of course there's a catch-22 with g-tube feeds & eating: the more he's tube fed, the less hungry he feels, the less he eats, the more he's tube fed... But we've tried not feeding from 5 a.m. until 2:00 p.m. to see if he'll eat & it didn't work.

I had an interesting conversation with Diedre, a speech path from Perkins lower school, who was the first person able to confirm to me that she has seen kids who were eaters totally lose interest in food when they went on high doses of neurontin. Since this is the drug that has controlled Lars' pain and saved all our lives, we'll take the trade-off for lack of interest in food. Maybe it will come back eventually. Current plan is to feed more on a schedule that resembles how people actually eat. He takes two reflux meds at four different times during the day to try to get the reflux & gagging under control.

On August 24th he'll have the procedure to change his PEG to a Mic-key. PEG stands for percutaneous (through the skin) endoscopic gastrotomy (stomach tube). This is what Lars has had since 2/21--a tube (maybe a foot long) sticking out of his belly. Now that the track is healed, it'll be changed for a low-profile Mic-key button, like this one on a grown man. And in case you're jealous, you can purchase your own on amazon.com. Installation not included.

The mic-key will require us to hook up a tube in order to feed, vent, or give meds, but then the tube will come off when he's not being fed, which will be great.

We've recently had some problems with granulation tissue, and he had to have a painful procedure of burning it off with silver nitrate this week. We're trying different things to avoid that. Hopefully the mic-key will help, as it won't move as much. Lars tends to play with his tube & laugh when we tell him "no."

Lars & Joa today are at MAPVI's 2nd Annual Fishing Derby and Summer Picnic (MAPVI=Massachusetts Association for Parents of the Visually Impaired) for kids with visual impairments & their siblings. I'm hoping Larsy catches us some dinner 'cause I'm hungry even if he isn't.

camping

Fantastically wonderful time.... loons, newly hatched baby loons, kayaking, lake, sitting, talking, laughing, campfires, napping, roasting marshmallows, reading, cabin, trees, bats, fishing, swimming, floating, sand, hills, food, beer, birds, showering, walking, skinny dipping at moon rise, hiking, being quiet, hearing quiet, hearing songbirds, hearing loons... Perfect.

Lars was a thoroughly, delightfully, charmingly happy boy all week. Mellow, giggly, smiley, related, connected, outdoors boy.

Joa's grandmothers (Gramma & Mormor) gave him a kayak for his birthday & he loves it. He attended a week of kayak & canoe camp earlier this summer & knows his way around the boat. Sized just right for him; he went out every day. Birthday isn't for another 2 weeks, but kayak came early so he could bring it. We had the great fortune to borrow Carylbeth's kayak, too, & it was heavily paddled by various adults.




Joa & I went night fishin' (on the beach with flashlights & nets) for crawdads/crayfish with some folks we met camping last year (this is our 6th consecutive year at this Vermont state park). Photo of the catch, just before release.
Sweet waning gibbous moon under which we skinny dipped in the lake. Mmm. Blessed be. I've been harassing poor Andey for 3 years now about Lars not having a homemade stocking like Joa does...so guess who was knitting on vacation?
Lars spent hours & hours--entire afternoons--floating & swimming in the lake. Didn't always like the feeling of the sand (wet or dry), but other times could handle it. Also enjoyed boating. Such a water boy. Griffin takes a dive. His diving skills improved exponentially from one hour to the next.

Both the boys had a fantastic time. Griffin, John & Lisa were there the whole time with us; Andey, Cary, John, Zane & Tucker were there for part of the week. One night all of us were there.

we're off like a herd of turtles

Off for a week of quasi-camping in Vermont.

So much to blog about already; no time now.

No internet or phone access for the week we're gone.

Will try to post next Sunday the 5th.

Have a great week, everyone.