Party Tonight with Friends with Cancer

Well, Mom started cooking last night and still cooking now. We are inviting two couples and a friend for dinner tonight. Each member of those two couples and that friend all have cancer, two of them with breast cancer. One has lung cancer. They are all our long time friends. We really don’t know how to better handle ourselves but will try our best. Hope they will enjoy it.

Hello? Secret Pal? Are you there?

Hi Secret Pal,
Sorry the blog has been such a bummer, the exchange caught our family at a bad time. But I’m still knitting! Really, I am.. Here’s a post all about knitting…

I’m almost done with the scarf that I’m knitting.

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So I’m moving onto a new project!

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Isn’t this a beautiful thing? It’s my first hank of yarn. I hesitated before attempting to unwind it into a ball, and for good reason…

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What a mess.

Therapy Appointment today

We went to the therapy place today. It was much better this time than last time, even though Edda did sleep through about 20 minutes of it. Ok, here is our assignment:

  • Get a mirror, put shaving cream on the mirror and encourage her to play with that.
  • Make faces with her in the mirror.
  • Get beans, dried pasta, sand and have her play with that. Hide things in the beans and have her find them.
  • Get some soft balls, put them in a bin, take them out of a bin.
  • For communication, make a picture book of things that she needs, food items, toys she likes. Before you get the item, open the book and point to the picture.
  • To stimulate her nerves, “brush” her arms, hands, legs, feet and back with a soft brush every 2 hours.
  • Also after the brushing, do joint stimulation.

We also got some sign language videos. We’ll see how it goes.

Well….

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After a few grumpy blog entries, I wanted this to be a happy, happy one. Mainly to let my parents know that we are still generally happy most of the time. See? In the picture? We’re all happy.

Good news from the medical front, genetic tests were all OK, no apparent DNA screw-up. We have a tentative diagnosis of hypotonia cerebral palsy which basically translates into low-muscle-tone mentally-retarded kid. So, not much information than that, basically, they can’t name it something, so this is what they are calling it.

Vince liked school today, they celebrated Chinese New Year and since it was so stressful for us this weekend, I didn’t have a chance to buy him a super cool Chinese outfit, so he went to school in his uniform and everyone else was all spiffed up. But since they gave out goody bags, Vince basically had milk and candy for lunch. Boy was he on a sugar high today.

We are still planning on coming back in late March, I think we are going to go to the Children’s Hospital in NYC affilitated with Columbia University as Bob and Katherine have an apartment in the city and also it will be the most viable one to go to frequently if necessary from where Jeremy would presumably work in NY.

Good night!

24 Hours of Politik

Ahhhhhh!!

So a bunch of us are doing this 24 Hours of Adrenaline. We mostly work at the shop, so everyone getting the day off on a Saturday to do the race is a reasonable issue. So apparently a deal has been brokered… We’ll get the day off, if we wear our shop’s cycling jersey. But there are a couple issues.

1) who’s paying for the jerseys?
2) who’s paying for the entry fees?
3) the jerseys are butt fugly ugly.

it seems like we’ll be paying for the entry fees, which is a bit unusual for being “sponsored”. I hope to get the jerseys for free, but the owner might make us by them, which I would find to be unreasonable.

of course, one of our guys is making a big hoo ha, out of having to wear the jerseys and pay for the entry fees. so everyone’s got an agenda. ugh.

-don

Not crying at parties.

Well today we were invited to another Chinese New Year party – this time for a noontime steamboat lunch. This was given by the couple who came over in November with their 2 children about Vince and Edda’s age when it became obviously apparent to me that Edda was falling fast off of the normal development curve. Edda and I bailed on the party, Edda because she didn’t sleep very well last night and me because I thought I had done enough crying at parties recently. Jeremy and Vince went, Jeremy wasn’t much up for it because he spent most of the night up last night with Edda, but I felt bad that we’ve been cancelling things at the last minute with these people and I knew Vince would have a fabulous time.

Well Vince did have a fabulous time, but Jeremy ended up pretty emotional when he got home. There were 2 kids younger than Edda at the party and the contrast between her abilities and theirs was striking and Jeremy spend a lot of the afternoon and early evening in tears and sad. It’s nice that we usually aren’t too sad at the same time but it takes a lot of energy both to be sad and to help the other person not be too sad.

Well, perhaps we’ll find a therapist soon for both me and Jeremy, either seperately or together. I love therapy. And we’ll take Donald’s suggestion of a support group seriously too, although I don’t know if they have such things here though.