Friday, September 21, 2007

September 21 Report - Pre Yom Kippur

Jake had a pretty good week. Mommy had to go out of town on Wednesday afternoon, so we had some quality Daddy-Son bonding time. We did some homework, rode our bikes, and played a lot of an improvised game involving Legos. He's also into the Super Mario Brothers Super Show, a DVD set of mixed live action and cartoon shows from the late 1980's. I'd never seen it before. "Captain" Lou Albano (the wrestling manager) played Mario, which is kind of cool. When we go to the playground, he likes to pretend we're playing a real-life Super Mario Brothers level. Our next purchase is the "Legend of Zelda" DVD box, which contains another cartoon series from the 1980's that was heavily cross-marketed on the Super Mario show.

No big changes on the health front. We're waiting for final insurance approval to begin Human Growth Hormone treatment, because he's stopped growing since beginning dialysis. The doc says that you can "catch up" missed growth as long as HGH is provided before transplant.

No big post-yom kippur plans.

Saturday, September 15, 2007

September 15 Update - More of the same, but . . .

More of the same is generally a good thing. This was our most recent message from school:

Dear Mom and Dad,

The bad news is that Ivy League colleges are expensive, so start saving! The good news is that Jacob will no doubt be applying to some of them in a few years! He scored another 100%, this time on our Chapter One Math test. I am so proud of him, to say the least, and I see his academic progress as exponential! I thought you might enjoy knowing this before the weekend!!Love to all the Silvermans..... Have a great weekend!

Jake had a CAT scan of the kidneys on Friday. This was his first scan that used contrast (which is more radioactive) to show blood flow, so we can't really compare it with the prior non-contrast scans. There's a section of healthy kidney tissue which receives blood flow, but there are large parts of the kidneys which don't appear to receive blood flow. There are risks and side effects associated with the contrast CAT scan, and we don't expect to do another one for a while. If there is improvement, it will be revealed when they do chemical tests of his urine (which is collected over a 24 hour period). That was the test which reflected 7% kidney function as of last month. They will do that test every 90 days or so.

Friday, September 14, 2007

September 14 - Happy New Year

Happy Rosh Hashanah! Jake went to childrens' services at the shul, and later in the day we went to the Rabbi's house for an awesome dinner. Unfortunately, Jake didn't accept my advice to take a nap some time during the day, and conked out at around 10:30, costing me a second helping of stuffed cabbage.

He's still enjoying school. He felt fairly well this week. He's got the same school year runny nose and sniffles as the other kids, but that doesn't seem to impose additional kidney-based fears.

We're sitting at Friday dialysis, trying to obtain some star coins on Super Mario Brothers on the Nintendo DS. We're going to work on his "home-fun" reading assignments, too.

Friday, September 7, 2007

September 7 - A report from school

We received this email today from his teacher:

Sent: Friday, September 07, 2007 9:45 AM
Subject: Perfecto!!!!!!!!

Dear Mom and Dad,
Jacob got one of the few PERFECT spelling papers on our test this morning. I am so proud of how well he is doing! I would never know that he missed part of school last year! He is not average; He is above-average at least, but I suspect that he will be at the top of the class by the end of the year. I am not saying this lightly!! He is so smart and "with-it"!! Have a great weekend!!xoxo

We're ecstatic. I though the only words he knew were "start", "save", "load game", "new game", "attack", "defense", and "game over".

P.S. - He recently decided that I'm "jumbo." I told him he'll be jumbo when he grows up.

Monday, September 3, 2007

September 3 - Status Report

We're at Monday morning dialysis (no Labor Day here). He's doing great. In his words, "I don't just like school, I love it." He's right in the middle of the class for reading and near the top for math. He has no interest in organized sports, but he and I go bike riding (he's a two wheelin' guy) a few times a week. In other words, he's about right where he was (or was going to be) both in school and athletically.

His primary hobby right now is New Super Mario Brothers for Nintendo DS. I'm his hero because I can finish the few levels that he has problems with (although there are other levels that he can finish but I can't).

I am reminded of how much he's improved. When we left the hospital, he couldn't walk, and was wearing his "hospital pants". Now he's an emergent reader, a Nintendo wiz, and a bike rider.

No big changes in kidney function. They will do another kidney function test mid-October, and we'll find out how he's doing. Meanwhile, his blood chemistry levels are stable, his appetite is good, and blood pressure is in check. The transplant paperwork process is ongoing, but we don't expect to go through with it until late summer 2008.