Friday, February 27, 2009

The kindness of strangers and a job

So, we have Needlenoggin's old power chair and shower chair up for sale. The idea is that with the money we'd be able to fix up the donated wheelchair (it just needs a few after-market parts to make it paraplegic-friendly). However, so far we've gone nowhere fast on selling them (by the way, if you need a power chair or shower chair, leave me a message here at Round Peg's Wheelchair Emporium, and I'll make you a great deal). Craigslist is notoriously unreliable, so it is a long process.

However, we got two wonderful emails this weeks, from total strangers who have been reading our craigslist ads.

The first was a woman in San Jose who told us she'd love to give us her daughter's hand-me-downs for Rorysaurus (clothes are always appreciated...she grows so fast), and she is helping us with Home on the Range (our food service place) by sending money for a meal or two. I was so touched I cried.

Then yesterday I got an email from a lawyer in SF who'd broken her ankle. SHe'd been browsing wheelchairs online and found our ad. She said that she'd been the recipient of so much goodwill after her accident, she wanted to pay it forward, and sent us the money to pay for Needlenoggin's chair repairs. Random and out of the blue.

Thank you. Thank you, thank you, thank you.

Oh, and then, in the elevator, I found an ad up for a caregiver for a lady in a wheelchair. She just needs help with her morning routine and getting into her chair, and she's in the same apartment building as we are, so if she's willing to hire me, I can work for an hour and a half while Little Monkey naps at home with Needlenoggin. I hate to add more to our schedule (and more responsibilities), but we're BROKE, so you do what you have to, right?

Friday, February 20, 2009


I wanted to say thank you to those who donated the Wheelchair to Needlenoggin. I'd had to buy one on Ebay, and it wasn't really working out for him, so the joy we all experienced when he got into a comfortable wheelchair that he could maneuver around the house for the first time was wonderful. We've got a little bit of wheel-work to do on it, but he's mobile! Thank you.

Here are pictures of the chair I got as well as the one so kindly donated. We couldn't be more grateful:

Needlenoggin, Rorysaurus, and St. PJ the Firefighter (with Rorysaurus's fire-guys valentine):

Here he is about to take Dingo out:

Thank you so much to everyone who helped to get him new wheels. You guys are wonderful!

My love-hate relationship with California

I hate the way the state of California handles its money. Really I do. They're broke, and because of that a lot of people are suffering. We did get paperwork filled out for Needlenoggin's California disability checks, only to find out that MediCal has only approved him for 8 physical therapy visits. EIGHT. Oh, and instead of 8 hour-long visits, he gets 45 minutes because they've cut the hours for his PT.

Now, it was going to be hard to get anything useful out of this Physical Therapy place anyway, because they have an exercise bike he can't use, 2 treadmills, a harness that can't lift him upright and some yoga balls. However, I'd hoped that with him going every week or two, he's get confident in his abilities, whatever they are, and learn some new stretches and strengthening exercises. However, instead of that once a week or once every two weeks (what we'd been assured would be his schedule, at a minimum, they're allowing him 45 minutes every 7 weeks. In a building older than my grandparents with an elevator that makes me anxious, nevermind how it makes Needlenoggin feel.


And then, every once and a while, we hit the jackpot. While waiting (and waiting, and waiting) for a psychiatric referral for anti-anxiety drugs, we found Alameda County's Emergency clinic for psychiatric meds. Sausal Creek is a miracle (well, at least the doctor we've seen twice is. The waiting time is terrible and at least one of the nurses has some severe power-issues, but still). The man met Needlenoggin, talked with him and changed his anti-depressant, and when we came back to have the Rx refilled (they can only write 2 week scripts), noticed a marked difference in Needlenoggin. Let me make clear that the doctor we saw is FANTASTIC, cares about his patients (Needlenoggin doesn't get much of that, generally) and has a wonderful demeanor. Thank you!

We have noticed it too, especially as he's come off the Paxil he was on (MediCal likes Paxil since it is cheap and available as a generic). It was better, but there were still major sleep and panic issues, so we kept searching around for another doctor, a different treatment or a better medication.

We finally found a doctor who was willing to look over all of Needlenoggin's records, medications, their interactions, and prescribe him something to help with the pain and the anxiety. All of the treatment options he offered were sort of experimental, but that's partly because Needlenoggin has burned through the majority of the conventional nerve pain meds. We were wary, but at this point he'd be willing to try accu-puncture or chanting if it would help dull the pain and let him get to sleep before 4 am. And you know what? The doc up here at the Heathcare Options clinic was compassionate, kind and understanding. We've been on both the new medications this week, and let me tell you something:

Right now, I live with my little brother, who happens to be sitting down a little more frequently than he did before the accident. It isn't perfect, because living with him never was, and he's still in pain and still a little emotionally unstable...but he has hope that things will get better, and he's willing to work on recovering despite the idiotic way the system is set up. he even took the bus to go pick up Rorysaurus from school, across our town and into another city 5 miles away, all by himself. I've never been happier for him, and I know that he's enjoying getting to bed at midnight and being able to function by ten in the morning.

Here's Needlenoggin and Rorysaurus on Valentine's Day (she's got her Totoro from us and her Batman Valentine from him)