December 25 (Picture from Halloween)

I fixed the #%#$^&! digital camera. This is from Halloween.

December 23 update

We're doing dialysis today (Sunday). We normally do Monday/Wednesday/Friday, but for the next two weeks we're doing Wednesday/Friday/Sunday. This gives the dialysis staff Christmas Eve and New Year's Eve off. Everybody came in very early, so there's still some weekend left when we finish.

Yesterday, we participated in a ceremony at our synagogue to give him (i.e., add) a new Hebrew name - Chaim ("life"). He's now Yaakov Chaim Avraham Silverman. This is apparently an orthodox/Lubavitcher tradition, but we went with the flow. He didn't even participate in the process. Dad was part of the minion, the prayer was recited at the Torah, and presto. The scary part was Dad having to recite the Hebrew prayers that are looong forgotten. Reading Hebrew with my 41 year old eyes is out of the question, so it's a memory thing. Jake was out playing with the other kids while all this was taking place, and Mommy was behind the lace curtain (the sexes are separated at the shul during services, much to her displeasure). It was nice, because the synagogue building had a serious fire last week and services were held in somebody's house. The house had a big front yard, it was a beautiful day (70 and sunny), and Jake had a fabulous time playing with the other children. I had suggested adding Shaquille as his new name, but nobody seconded the motion.

He had a flu/cold for a few weeks, but he's mostly recovered. He still has that little kid chest cough that comes from not knowing how to blow his nose or cough up, but there's no more fever. Kidney function is unchanged. The docs seem to feel that the lack of improvement in creatinine levels means that transplant is the proper course. That would still hold to a schedule where we "go on the list" in March or so.

We're staying home for the holidays. After the new year, Jake and Mommy will go to Jacksonville for a few days (with one day of dialysis in Jacksonville).

November 21 Update

It's been a long while since the last update. I can explain a few weeks of the delay, but the last 15 days were was laziness. The explainable part was that his blood chemistry results started improving - so much so that there was talk of taking him off dialysis if his 24 hour kidney function test results hit 20%.

In order to do the 24 hour test, you have to collect urine in a jug (which is kept on ice in a cooler) for a 24 hour period. Since we can't hang around school with a jug and a cooler, the test is normally done on a weekend. Each weekend following the last update, there was some collection mishap which required that we start the process over again the next week. One weekend he forgot about the collection process and went to the bathroom without the jug. One weekend he had a jug-less playdate. One weekend the cap fell off the jug and it spilled out in the driveway on the way to dialysis. We ended up completing the test three weeks ago, and his kidney function numbers came out at 10%. That's an increase from the 7% we saw in August/September, but it's short the 20% we'd need to cease dialysis. He's scheduled for another 24 hour test in late December.

The evening human growth hormone injections are going a little better. We give it to him an hour after he falls asleep. Mommy gives the shot and Daddy holds him down as necessary. He cries when he gets the shot, but generally goes back to sleep fairly quickly.

He still likes school. We're going to start some reading tutoring after the holidays, but he's very advanced in math. At home we've been reading the Star Wars books at night, and playing the new Lego Stars Wars Complete Saga for Wii.

Mommy has been very busy helping her brother close out her grandmother's probate estate and helping Daddy with some other projects. Daddy's been working and bike riding (triathlon season is over). Mommy's family is in for the Thanksgiving holiday, so Jake has time to play with his cousins.

October 8 Update

The little pischer discovered that if he "doesn't feel good", he doesn't have to go to school. His Grandma came to town for a visit last week, so he decided he didn't feel good. He stayed home from school that day and got to play with Grandma. In the next few days, he got a little cold, which he's attempted to milk so he can stay home from school. Now he's just fakin' it every morning. I'm starting to threaten him that he's going to have to repeat first grade if he misses more school. Since he does have occassional bouts of nausea as a result of his condition, it's hard to tell when he's crying wolf.

As soon as we complete parent training (which is a story by itself), he starts daily Human Growth Hormone injections at home. I'm sure it will be an ordeal at first, but hopefully he'll get used to it. He's now used to his yucky Sunday Kaexolate dose and his bandage changes at dialysis, so it will be a matter of time.

October 1 Report

Jake's still doing well in school. He's very good in math, and is progressing well in reading. The only part of the homework where he gives us grief is that he doesn't have the patience to color the pictures after he's filled in the answers to the narrative questions. We cut him some slack on that (for now).

It's been over a month since he vomited ("Does your tummy hurt? Mommy, you know I don't throw up anymore"). The new bandage-changing procedure is working well, and he says he doesn't mind going to dialysis. One of the other kids in the unit (with a different form of HUS) had her kidneys resume functioning, and he was stoic but disappointed ("I hoped that hers and mine would come back at the same time").

We received a second opinion pathology report from Columbia University Hospital, and they are very pessimistic. They don't think that his kidneys are coming back. We'll have another 24 hour urine analysis next weekend, and we'll see what that brings.

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.

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.

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.

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.

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.

OK, so it's been a while . . .

Sorry for the long layoff. The ghostwriter's union was on strike . . .

He's excited for the first day of first grade tomorrow. He'll go to school full time, but leave at around 1:00p.m. on Monday, Wednesday and Friday so he can go to dialysis. He can do some schoolwork at the hospital, although it's more likely he'll play Nintendo DS and watch TV.

He's doing OK. He's off the Depakote (seizure medicine), which has helped his tummy. As a result, he's vomiting much less.

He's generally in good spirits, but he can get a little cranky at times. Some of that is due to the fact that he gets worn out a little faster than normal, and some of it is due to the fact that we have get him used to hearing "no" on occasion. We presume that they won't be able to indulge him at school like we were during the summer, so it will be a bit of a culture shock for him. He likes the teacher and knows most of the kids in his class, so we're hopeful. As a general matter, he's pretty good in familiar settings (play dates, etc.), but has more trouble with groups of unfamiliar people (birthday parties, etc.).

He recently had a kidney function test (which samples 24 hours worth of urine collection). His kidneys are currently working at 7% of normal capacity. We don't know whether that's improving (this was the first full test since he left the hospital), but if he can get to 15% he can live without dialysis or a transplant. I wouldn't say that the medical staff is optimistic about a recovery, but it's enough of a possibility that they've slowed down the preparations for a transplant. Right now the transplant schedule is deferred until at least next summer.

I'm out of town all week for a trial (my karma-impaired opposition wouldn't agree to a continuance). Jen's holding down the fort alone, so I'm sure she'd appreciate some help - at least until Wednesday, when my Mom comes to town.

Since we're pretty busy on medical issues, all out-of-town athletic travel(duathlons, triathlons, etc.) for the fall has been cancelled. If anyody wants my spot for IronMan Florida, let me know.

7/21 - Birthday Preparations and such

Tomorrow (Sunday) is Jake's birthday party. The party is at 11:00 at Gym Kidz in North Miami Beach (www.gymkidzmiami.com)
It's just off West Dixie Highway and 155th. If you are coming from I-95, take the 163rd street exit and go east to West Dixie Highway (just after the Honda dealership). Go south (i.e., turn right) on West Dixie to 155th or so and turn east (left). The facility is inside a warehouse complex. There are usually balloons outside, but I presume there will also be a bunch of parent-mobiles outside the entrance. Just look for the SUV convention.

Jake's doing OK. He continues to have unpredictable bouts of nausea each day, but once those pass he's fine. His cousins are in town for the week so there's been lots to do. They all went to Wanadoo City, which was OK. It would have been more fun, but we'd forgotten that girls and boys like to do different activities there, and they could never agree on a joint activity.

7/11 - Dangerous chemicals

Monday was our 12th wedding anniversary. I got Jen a massage and a "champagne and roses manicure and pedicure" at the Biltmore Spa. To make it really special, I scheduled the treatments for dialysis time (1:30 to 6:00) this afternoon, and I'm covering the hospital duty. So far, so good. With the wireless internet, I can respond to work emails and bid on Ebay Yu Gi Oh cards at the same time. Hopefully, I can keep those tasks separate. I'd hate to accidentally declare a mystic Yu Gi Oh attack on a client.

He's in pretty good shape. They are experimenting with different bandage dressings to try to alleviate the skin pain. He's got a copper deficiency, so he needs to drink hot cocoa. On the other hand, the mini marshmallows have no therapudic effect.

7/9 Update - Let's (Birthday) Party!!

We're planning his make-up birthday party for Sunday, July 22, 2007 at 11:00 a.m. at Gym Kidz in North Miami Beach. It's a reverse-invitation process. If you're within the sound of my voice (figuratively speaking), and you'd like to go, let us know at larrysilv@gmail.com so we can get a headcount. We had considered replicating my 40th birthday party (bounce house, cookout, etc.) However, the last few days of oppressive heat and humidity and intermittent rain have caused us to pick an indoor party.

Jake's doing OK. He feels crummy a few times a day, but I can usually distract him by changing the subject to something that excites him. Either that or he vomits. Dialysis is now 2:00p.m. M/W/F, so that lets Jake and Mommy sleep later. They don't get home from dialysis until 7:00 or later, so that makes family dinner later. That means he goes to sleep much later, and the cycle continues. If I get home early, I can knock of some Tour de France footage off the Tivo before it piles up. (My fearless prediction for the Tour is Alexandre Vinokourov, the pride of Kazakhstan)

Happy Fourth of July

We're hanging out in the coolest place in Hollywood - the pediatric ambulatory wing at Joe DiMaggio Children's Hospital. The usual dialysis kids are all here. You would think that you could skip a day now and then (kind of like going two days without dialysis on the weekends) but that apparently screws up the biological schedule. I'm skeptical that the body adjusts to a seven day schedule (i.e., the body gets used to weekends), but the docs have more experience than me.

In order to switch from morning 8:00a.m. sessions to 2:00pm sessions, they make you go through an 11:00a.m. session on one of the intervening days so that the body gets used to the time change. Today is our 11:00a.m. day, and then he'll be doing 2:00pm M/W/F for the foreseeable future.

He's been a little off lately, with bouts of nausea and fleeting bouts of grumpiness. The grumpiness is somewhat attributable to spoiledness (it occurs for frequently when we say no to a request), but there's enough chemical stuff going on in his little body that he may not be able to avoid it. He roll with it, and he quickly forgets that he was mad and forgets 9or pretends to forget) whatever he said.

Daddy did the Independence Day Duathlon, and did a personal best. I finally broke 1 hour (59.01) for the 2 mile run, 10 mile bike and 2 mile run. If the 14 people who finished ahead of me in my age group all test positive for drugs, I qualify for the World Championships.

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.

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.

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 www.Floridasupercon.com 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).

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).

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, www.fark.com, had an entry today discussing people's favorite candies. See http://forums.fark.com/cgi/fark/comments.pl?IDLink=2871924. Jacob says these are his favorites:

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

For Dad, its:

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