The Evil Train Table

Love/hate relationship with the Train Table at B&N. So many trains, and so many products...

2nd haircut following the 3 hot days we had all summer

I follow the kids on the right so closely, I can see them in my sleep. Maybe it is obsessive. I should ask my counselor what she thinks. Except I don't think my behavior would change regardless of her feedback. But each of their triumphs give me a little more hope and each of their setbacks reminds me what is at stake.

Our friends from Wisconsin are finally home.

And it makes me want to go and prune the hell out of my fb page, and all the insidious "before" it represents. But. I can't bring myself to do it. Because the before and the after are still the same me. So I work on reconciliation.

Father Ken's homily somehow made that word both much bigger and much more accessible than my jumbled thoughts here. But I left mass convinced that it was something worth trying. Something I may not succeed at, but something worth doing.

Wolverine!

All done.

2 Birthday Parties for 2 year old Bo

These are pix from Bo's 2 birthday parties on and the weekend after his birthday (June 3).

Oley Minutes, Part 1 (no sterile dressings in EU?!)

I ran into these Dutch researcher who basically reduced line infections to near zero with Taurilidine locks. Their paper was presented at Oley, received the research award. This looks like a good option for those of us either: 1) not a fan of ethanol and its corrosive effects on lines, 2) not a fan of heparin and its freaky possible contaminants, or 3) still experiencing too many line infections with whatever protocol to be happy.

But more interesting to me was the conversation I had with them regarding AV fistulas and dressings. Apparently, none of their 100+ TPN-dependent patients (The Dutch population is in total ~16MM) use dressings at all. They claim that they have a much lower rate of tunnel infections because of this. Yes, the line is just hanging out there in the breeze, or shower, or pool, or whatever (!). I know, right?

And not to sound like I'm maligning the UK, but I've been in contact with a family from there who was trained to clean the site with normal saline and then stick a tegaderm on top. The child is 8 months old and has had 5 site infections. Sounds like the worst of both worlds to me. Yikes.

And as for AV fistula, they say that it's up to the patient to decide if they want a port, a broviac or an AV fistula, but that the fistulas have a lower rate of line infection, and that when the needle is removed for the day, it's just, well the arm that is there. But that the decision really depends on the patient's dexterity with the other hand and so forth.

Quiet = Good

I'm still digesting and savoring the sweet Oley week we had. I'll post my minutes here in a formal blog in the next week or so. Let me just say, that I had a weirdly resonant moment when someone asked me if I learned alot, and what. I flashed back to a job interview for a project manager position and one of the team members asked me what the most important time in a meeting was. Even though I had never been a PM, I instinctively said the gathering and commencement moments before and after the formal meeting, "That's where you hear the most important information, see the most important interactions (verbally and in body language), and sense the life of the project." Still true.

Spending time with the Cyrs, the Brogans, the Nobles and all the amazing long-timers both young and old was uplifting. I nearly cried into the lap of a younger hipster with a G-tube. He was so self-sufficient, so matter of fact, so aloof, yet so compassionate. Someone I hope Bo will be able to look up to for a long time.

Rennie and Jennie kept Bo amused so I could attack multiple sessions each day. And even though it poured rain every day but the last, with threats of hurricanes, and even though we ate way more hotel food than I had hoped, we all had an amazing time. Bo was already aware that the other attendees had lines of their own. He pointed to his line and showed it off to a 15 year old, who in turn, showed Bo his line. So he had no interest in the daycare (too young for it to be amusing for long)? He had fun chasing Rennie and Jennie. He slept through the night each night, took nice naps daily and only cried for a few minutes for each airplane's descent. Good Boy!

Summer ramp up has kept us busy. 4th weekend with my parents, this weekend is my niece's 3rd birthday and family from Detroit and NY are visiting here, Bo's godmother and her husband will breeze by the following week (which will be a grueling combination of kowtowing and chauffering our Japanese agent and customers), and the following week is a Childs'pace workshop in Chicago. Whew! It'll practically be August by then. Where did the summer go?!

Oley, Here We Come!

We're headed to the Oley conference which is in St Pete's, FL this year. And depending on how Bo travels, we plan to be in A2 for the 4th weekend. It's going to be extremely hot, and Bo gets overheated very easily, so I'm a bit nervous. But we buzzed his hair off (these show of his now defunct Bruce Lee mullet), and it seems to help. The heatwave here has lightened up a bit and instead of unbearable, it's just a little hot at midday.

Medically, Bo remains stable (knock wood). His GI was very pleased and said he's just on maintenance right now. The nephrologist said as much in March. Bo will see both again in October. His feeding therapist is making very nice progress with his toothbrushing goals, and we look forward to more Feldenkrais lessons in July at a Childs'pace workshop (if not sooner with his teacher). His gross motor skills are still lagging, but everything else seems good!

On the home front, the garage is now standing tall- we will re-roof it next year. The window replacement project was itself replaced with a window trim/sill rehab project (much more affordable, thank goodness, and justified with an energy audit). And we've added an insulation project to the tree trimming project for this fall. Yikes. But considering we did nothing to the house these last 2 years while we were so focused on Bo's health, I guess it's time to pay the piper (the home maintenance piper). Sigh.

We celebrated Father's Day Eve at the 4 diamond restaurant in town (yum!) and drove to A2 on the fly to spend time with both our fathers. Can't wait to see Jose's brother and his partner in Florida! And finally meet all our cyberfriends in person!!