Please.

This is what BB needs (and I like for design) but since we live in the USA, we can't have it. How come the most well-designed and appealing item is only available in Europe? Come on Otto Bock, share some good design with BB.

Clink, clink, clink goes the ice in Kevin's glass.

We've built a little zone of ease with friends and family where we can do things with BB and the wheels pretty seamlessly. Makes the times outside the zone sometimes excruciating (and whiskey worthy if you are Kevin).

Today Kevin drove BB to his friend's house for a birthday party. Carried BB into the motorhome they were driving to the big city as part of the party. Then put the wheels in the van and drove to the science museum for the party. Waited for the kids. Helped BB in. And then shadowed BB because in a new setting like this no one knows to be careful and that it is helpful to move chairs and things out of the way, etc. Then wheeled BB to the motorhome over railroad tracks and under a wire fence (yes, wire fence), etc. Carried BB up.

And then walked with the empty wheelchair and 20 balloons back to the van for the drive back.

(That is quite a visual. The birthday boy's mom didn't want the kids scrambling for the balloons in the motorhome).

This is certainly better than the parties in the middle of fields with little boys running wild with imaginary weapons and BB saying "wait for me, wait for me." Suck. And super suck.

But still makes me wonder if it is worth the trouble. I guess it is since BB seems to have no clue what a pain in the ass it is and how sad too, to be honest and seems to have a pretty good time. Whew, building/maintaining his social capital is a serious job with about one billion barriers.

While Kevin had his fun, I had a mom say to me during the Brownie finale that her daughter doesn't even describe BB first as "in a wheelchair" but rather as one of the wise men from the Christmas play. Imagine that.

2 for 1.

Hey BB, I know what would be really fun. How about when we do your next orthopedic surgery, let's also do some GI scoping? Make good use of the general anesthesia time.

When we left his appointment today his GI doctor apologized that she couldn't do more for him. I said that he is doing great as is and that we appreciate very much her help sorting out his stomach pain, etc. As far as the scope, we both know that it's gonna come back weird. Would love to be wrong here and have it come back absolutely normal. Here's hoping.

I certainly don't expect her to "cure" him. I hope she isn't just sad for him because his bones are what they are and he uses a wheelchair. Spend enough time with BB, most of the time, and you will know he only wants your sadness or pity if it comes packaged in a big greasy bag of Cheetos -- otherwise he has no time for those things.

What do I want to be when I grow up?

As part of the Partners in Policymaking class that I've been a part of for the past 5 months, I have to do a project, change some policy, etc. I can't decide what I really want to do.

[ ] mentoring/reading program in the local schools
[ ] local accessibility issues, transportation, etc.
[ ] disability vote alliance
[ ] school issues, state level (diploma options, etc.)
[ ] nonprofit projects (3 that interest me)
[ ] improve the pain management care situation, local+

I know I can't do it all. But what do I really care about the very most, so much so that I will spend a good portion of time for free to make something work better? I can't decide where my potential expertise and passion are hiding out.

Update.

We met with the "waiver" doctor today. Answered about 1 million questions on what BB can and cannot do from self-care to social, etc. He was super bored since it took over an hour -- but they have to see him with their own eyes, again.

I'd imagine he will score pretty low for priority in getting any services since gross motor is really his only big limit. Really just trying to add him to the "list" in case someday he gets really bad off and would need lots of help or in case something ever happens to me or Kevin.

I have to say that the doctor did seem pretty impressed with how many days of school he has missed. Hopefully it won't be quite so many next year now that I've adopted a more "project normal" life for him with less physical therapy days, etc. Tricky balance on the clustering medical over the summer and holidays versus school days . . . for Christmas this year, how about a dilaudid pain pump?

Blah.

BB is growing. Which is mostly good but honestly freaks me out because too much could mean bad stuff like growth hormone excess and precocious puberty and too little growth could mean Cushing's. So anyway what it means for BB today is that he will likely need surgery sort of soon because one of the screws is getting close to a spot it should not and needs to be adjusted.

Should the rods be switched out now? Is the thyroid gonna cooperate? How come it feels like we've been doing this for 5, 10, one million years and really it has only been about 18 months? Taking the good, we've had over a year on these rods with no Shepard's crook happening and some pretty good times so will keep on keeping on.

Was glad to learn that using pamidronate for pain probably cancels out the bad from using the prevacid (because there is the chance that the pamidronate could improve his bone somehow . . ., maybe, medical journals are mixed on this . . .).

And BB may be featured on TV for the hospital's fund raiser.

Happy Mother's Day 2008

Pencil In.

Pencil Kevin in as "mental problems" is what he says when he sees that 2 of his immediate family members are listed in the church bulletin as recovering from surgery/other prayer list. BB is a permanent bulletin listee for "bone disease" and me for the gallbladder. Can't hurt, I suppose. I'll pencil Kevin in as "recovering smartass".

To do, to do.

Staples out and smooth sailing for the belly minus gallbladder.

IEP meeting is done with mostly everything sounding good to me. No commitment on whether one of the super empathetic good friend kids will follow BB to First Grade. Not a squeak on who he might have next year as a teacher. Will be working on automatic doors for all of the schools in the district, to happen at some point. On the back of BB (and me) this district will never be the same, for good.

We see BB's orthopedist next week for a checkup. And waiver support/services doctor for program evaluation, would love some help, someday. And gastroenterologist too. I had sort of planned to get more proactive for gastro but now think that since BB's stomach is behaving itself, maybe not. I'm going with the "slow medicine" method for now (see NYT here). And then eye exam after that. And a regular checkup with chicken pox booster. Whew.

Not So Pleasant.

I'm only feeling safe eating things like plain potatoes and raisin bran with soy milk and plain noodles. Don't want to tempt my gallbladder ghost.

In other news just read a case report on boy with MAS who died at 19 due to cyst related to temporal bone and blood clot. I don't like how everyone pretends that MAS rarely takes life. Since I'm pretty sure no one is tracking anything -- I'd wager that some (too many) of the few with MAS have experienced a morbidity hit. MAS is brutal for young babies. Will we ever know? I certainly do not welcome any fake peace of mind but bet that if I were to ask about life-taking complications that I would win zero friendship awards. Is anyone studying the possible cardiac complications? How about gastro? Looking for anything other than scary pamidronate for pain management? Help please.

Way.

The BB is 6 years old. I can't believe it.

Update :: Gallbladder Day 4

Better. Still feel like someone punched my belly up but better. Staples out next Tuesday. Moving on, I hope.

Ouch and Ouch.

My right shoulder was killing me yesterday but is better. My guts are still sore and stapled like chicken, yuck.

I must have been still hopped up on anesthesia when we left the hospital Monday afternoon and they said things like: "You are the best gallbladder recovery we've ever seen."

Not looking so good now. Not feeling so great. Much better tomorrow?

BMW

Pain last night. Bad and hours.

Pull into BB's school and he announces that his "eardrum" hurts. Okay, school nurse looks at it and says it looks red, and he has a slight fever. No school.

BB and I try local ER for ultrasound for me but no luck (tech was out - the rural ER is always dicey for services). Left message for internist. Drive in with BB for ultrasound at radiology place (rescheduled myself from Monday to today, sweet person who answered the phone could perhaps hear the pain in my voice). Ultrasound is long and gets quiet. Know this is bad - wonder about what horrible things could be hiding in there like cancer or something. Wait. Doctor walks out and says I look fabulous for how terrible my gallbladder looks - it's hot (bad hot), inflamed and stone-ie - wonders how I'm not doubled-over on the floor.

BB was a sweet trooper sharing his courage with me. Passed him off to Kevin for an ear check-up at the pediatrician while I peek-in on internist and learn that I have a 3 o'clock with surgeon. BB does have an ear infection. Grandma drives in to retrieve the BB while Kevin and I wait and wait for surgeon.

And the gallbladder will be removed on Monday! Unless I rip it out first. Ouch and double-ouch. The pain is like a band wrapped around my ribs and back squeezing my guts out plus full-on radiating killer back pain. Ouch, ouch, ouch and I am so hungry.

Seer Much?

"Governor J. will be a guest on The Tonight Show with Jay Leno on Monday, April 28th. The Governor will discuss the many reforms underway in the state and highlight the fact the Louisiana is open for business and working to become the best place in the world to raise a family, get a high-paying job, and pursue a great career."

I think it's gonna happen -- the VP thing.

Would he work the proposed DHH disability services budget cut first . . . neglect home/community based supports while ranking 4th in the nation for institutions . . . maybe we should close the institutions and fund home/community supports in a thoughtful-eyes-wide-open-hold-folks-accountable way.