Thursday, June 28, 2007

Trip to the Office

By coincidence, today was our Summer Ice Cream Social day at work, so he got some ice cream and some candy. Since he's so thin, getting a sugar high is pretty easy to do, so he was wound up for the rest of the day.

I had forgotten to describe last weekend's trip to the comic book and science fiction convention. Lots of teens were in costume as anime characters (which is known as "cosplay"). Most of them were Narato related, which we're not really into. Some of the female costumes are way out, which isn't surprising because that's how women are drawn in japanese cartoons. Jake's not that interested in classic Marvel comic books (he likes the characters, but we don't collect them), which were the majority of the comics for sale. No Yu Gi Oh or Pokemon stuff to be found. There were some Super Mario stuffed toys that were cool (as seen in the picture), but not cool enough to buy. This was the only picture I remembered to take. For somebody who is a gadget hound, I'm very remiss in my picture taking duties.

He seems to be in pretty good shape. Potassium level is good, but phosphorus levels are a bit high. Tomorrow is a dialysis day. The Monday/Wednesday/Friday schedule continues no matter what, which means that July 4 is a dialysis day.

Wednesday, June 27, 2007

Mid Week update

The catheter is failing again, so he'll probably need to go into surgery next week to get it replaced. He's been a little under the weather this week. He may have a touch of the cold Jen just got over. However, he was well enough to go with his friends Remy and Zoe to Wannado City yesterday. It's almost like day camp without the bologna sandwiches.

The initial report from his second pediatric nephrologist opinion is consistant with the first opinion, so we're still on the transplant path unless something drastically changes. The kidenys are putting out urine, but aren't doing much filtering.

He's excited for the release of the Ratatouille movie on Friday, so that will be the big weekend activity.

He's going to spend the afternoon at Daddy's office tomorrow. That should be good for a few anecdotes. He doesn't have to rough it too much, because I have cable TV and videogames in my office.

Friday, June 22, 2007

Big weekend plans

Jake had a pretty good week. No major health developments. The blood pressure medicine is cut down a little, but nothing substantial. Mommy's got a bad cold.

The weekend should be fun. Tomorrow Jake and I are going to the Fort Lauderdale Comics and Anime convention. How cool is that! Go to for details. I plan on releasing my inner nerd, although my outer nerd is fairly transparent and the inner nerd is usually visible.

If I can fit it in, the state track bicycle points race (elite division) championship is Saturday night. I may go and be an early casualty. I normally race Masters (old guys), not Elite (young guys). We'll see if I can go -- Jake gets bored watching the racing, and Jen needs to stay home and rest.

Driving to a comics convention is the right time to blast my Rush cassettes. The other Jen (Remy's mom) took me to the Rush concert last week, and I forgot to mention it. Just prior to Jake getting sick, we saw Geddy Lee taking his dad to dinner at Katz' Deli in Aventura. A brush with greatness (and dill pickles).

Sunday, June 17, 2007

Happy Father's Day - June 17

Happy Father's Day. We had a fun day. Jake wanted to go to the Swap Shop again, and Mommy even came along. I had imposed a "no complaining on Fathers Day" rule, and Mommy complied. We bought some used toys and some video tapes. It was about 90 degrees, and it took a lot out of him. He's supposed to be on limited fluids (16 ounces a day) and its unclear whether the kidney and fluid issues implicate his sweat functions. I presume he can take more fluids if he's sweaty, but we'll clear this up with the pediatric nephrologist tomorrow.

We were going to go to the movies, but ended up watching TV and JOOST (which is TV through the internet). He's interested in The Fantastic Four and Transformers. The constant commercials for those movies are probably contributing factors. His favorite characters are Dr. Ben Grimm (The Thing) and Optimus Prime. In a very obscure coincidence, those two characters have something in common. They're both Jewish. Look it up.

Jake has a busy medical week, with three dialysis dates, a trip to the neurologist, and a second opinion examination at Jackson Memorial Hospital. He's been in pretty good shape, although he's been vomiting in the mornings (after he takes his blood pressure medicine but before he eats).

Saturday, June 16, 2007

Weekend ramblings

We went to a birthday party today at the laser tag/arcade facility in Hialeah. He had fun playing the redemption games (win tickets, get junky prizes, etc.). He couldn't do the laser tag because the vest apparatus was so heavy it was uncomfortable for him.

As an aside, many people feel that redemption games killed the traditional "arcade," but in the age of super home video game consoles it is also possible that redemption is the only thing that keeps arcades alive. Do you really need to go to an arcade to play the latest and greatest when its easier to play at home or online? When we go to those places, he may play one or two jetski racing games, but he really sticks with the redemption stuff. I guess having a home arcade makes him a little jaded.

Anyway, birthday parties are a little tough because he really shouldn't eat pizza, but we roll with the party, focus on the candy and adjust the eating for the rest of the day. One of my favorite websites,, had an entry today discussing people's favorite candies. See Jacob says these are his favorites:

Now and Later
Sour Skittles
Fruit Gushers
Fruit Roll ups
Sour Gummy Worms
Swedish Fish
Tootsie Pops
Extreme Sour warheads

For Dad, its:

Fruit Flavor Tootsie Rolls
Dark Chocolate Raisinettes
Mike and Ike
Smarties (the Nestle version of M&Ms)
stale gummy bears
Fruit Flavor Necco (mmmm, chalky)
Hershey Milk Chocolate

June 16 Update

Jen had her kidney donor compatibility tested, and it seems like she's a pretty good match. I think we're tired enough of the dialysis, pharmaceutical regimen and limited renal diet that she wants to accelerate the transplant process. However, our pediatric nephrologist returns from his two week vacation next week, and I presume he'll remind us to stay the course (i.e., a transplant next summer).

Jake is doing well. He doesn't want to go to the day camp at the local art museum, so there's no camp this summer. The art camp is only real camp option for him because it is day-to-day. Since he's in dialysis Monday, Wednesday and Friday, and isn't allowed to go swimming, there aren't a lot of camp options. I guess Tuesdays and Thursdays will be a series of play dates.

Wednesday, June 13, 2007

June 13, 2007 Update

His spirits have been very high. He's got lots of energy. Since he doesn't do much strenuous physical activity, he runs from place to place in the house, dances and shakes his booty to any music that's playing, and is generally full of pep. He's got even more energy on dialysis days like today, which presumably comes from the nap that he takes during that process.

The kidneys aren't doing much filtering. We tried lowering his potassium medicine (the yucky one), based on the belief that he was pooping more (which helps that process). Unfortunately, his potassium levels were very high on today's blood test. That medicine has to be continued until further notice. He and Mommy apparently made some kind of deal whereby he'll agree to take it as long as I'm not involved. Sounds like another surreptitious devaluation of the bribe dollar, but I won't ask too many questions.

Sunday, June 10, 2007

6/10 Update

Jake was in good shape this morning, so I took him to Florida's second favorite tourist attraction - the Swap Shop in Fort Lauderdale. I had tried to take him last week to look for fake Yu Gi Oh cards, but we went at 5:00 p.m. that time and everything was closed. On a Sunday morning, it's in full splendor. While walking around (with him on my shoulders the whole time) I explained to him that this is what people did to get rid of their stuff before they invented E-Bay. On of the vendors overheard me and said that he just likes to be outside. It was 88 degrees at 10:30 a.m., so we only stayed about an hour. We bought some kid videotapes (3 for 5 bucks, such a bahh-gan) and some Yu Gi Oh Hot Wheels cars. We capped it off with a Mister Misty at Dairy Queen.

He was generally good this weekend, although the blood pressure was high -- which led to extra medication, which led to tantrums, which led to high blood pressure . . .

Saturday, June 9, 2007

6/9 update - It wasn't my fault . . .

As soon as I rededicated myself to frequent updates, the rocket scientists at Comcast disconnected us for three days. The service people came out today, and told us that they had inadvertently disconnected our service (at the pole) instead of our neighbor's service. It is kind of hard to go without TV and internet for three days, especially with his excellency demanding his two daily shows.

He's been pretty good. He throws the mother of all tantrums when he has to take his potassium-reducing medicine (8 ccs of yucky stuff), but other than that he's in good spirits. The temper tantrums are soooo bad (I hate you, etc.) that it scars mommy and daddy for the whole day, but he shakes it off and forgets about it. It's the kind of advanced nasty tantrum you'd expect out of a twelve year old teenage runaway who wants to dye her hair blue against parental wishes. I guess he's just advanced for his age.

He came to work on Thursday afternoon with me, and was great. He was in really good spirits and it was great to walk him around and introduce him to the many people who send him wishes and presents. The fact that he got sugared up on the walk through also helped his energy level.

Kidneys are still "eh."

Wednesday, June 6, 2007

June 6 update

We have a foundation upon which we can base Jacob's daily regimen - the premiere of the new Pokemon Diamond & Pearl TV show this week. It comes on every weeknight at 7:30 on Cartoon Network. If he complains when he takes his medicine, we can threaten to withhold the show. If he doesn't eat his food, no show. This is all we have left. Let's face it, we've failed as parents. On the other hand, the show has a female lead, so we're really educating him and broadening his horizons on gender equality issues. Just kidding. We've failed.

I did have one good Pokemon related moment. On the premiere episode, the lead character (Dawn) had to travel to pick up her Pokemon, but kept getting lost. I told Jen and Jake - she should take Route 201. One minute later, they showed the correct road sign, with Route 201 on it. Jen looked at me astonished. I admitted that the Pokemon Diamond and Pearl videogame came out last month (Jake received it as a birthday present from the Ornsteins), and I still remember the maps. Nerds rule!

He has dialysis today. The blood pressure has been a little funky for the last two days, but he's been in very good spirits. No big plans for the rest of the week. We may bring him to watch the firm's softball game tonight, which is a fun family outing. We'll see how dialysis goes. The new catheter is working fine, although the change in the apparatus didn't reduce the skin pain he endures when they have to change the dressings.

Monday, June 4, 2007

June 4 Update - OK, I got a little behind

Jake is full of energy. He's feisty. Given what we've been through, you'd think we couldn't get enough of that. You'd be wrong.

Last night, he was disappointed because we "promised" that we'd watch "Night at the Museum". We had some things going on yesterday (the Lion King show, a trip to the Swap Show, a late dinner). All fun kid things, and each accompanied by a toy. One thing leads to another, and it's 9:00 p.m. with no movie. We tried to tell him that we'd have to defer the movie until tomorrow. At that point, he got mad. He followed Mommy around and said "you lied to me". He did that continuously for 30 minutes, varying his tone and diction every few minutes for emphasis.. "You lied to me. You lied to me. You lied to me ..." You get the idea.

The best conversation of the weekend:

"Mommy, remember you said my brain was injured in the hospital. Well, I still have the sore on the back of my head, and my brain hurts."
"Honey, that's not how it works. the brain stuff is different than the sore in the back of your head. That was a bed sore . . ."
"Mommy, doesn't anybody understand sarcasm around here."

Mental acuity is at 100%. Physical dexterity is close to 100%. Kidneys need work.