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Posted by jeremy, at 2008-10-27 22:42:33

Mr. Math
It looks like all of the glucometer checks have had a definite effect -- Thorwald's math skills are a wee bit advanced. He's pretty reliably doing single-digit multiplication now, so we've started him at Kumon schools, where he's working at adding, tracing, drawing lines and bigger addition and subtraction problems than I'd previously challenged him with.
We looked into Kumon and Mathnasium both, but Kumon came away the hands-down winner in my book. Both were run by extremely nice women with advanced educational degrees. The local Kumon school is run by a woman who received her doctorate in Theoretical Physics from the University of Tokyo. She speaks four or five languages. Mathnasium is down in Bloomington, and the proprietor has a master's degree in electrical engineering from, I believe, Mankato state.
Having talked to both proprietors and looked at some of the materials, I came away thinking Kumon was the more solid choice. I like the amount of practice they do, and I like that they have timed tests -- Thor does best when given a limited amount of time to complete a task.
His reading skills are coming together rapidly, as well. He's already picking out a lot of the "sight words" which they will require him to know at the end of the school year. He loves his half-day kindergarten class, and runs happily to the bus every day. School is a lot of fun for him, and I really have to give his teacher credit. Good teachers are hard to come by, but he has ended up with a great one.

Monday, 14 January 2008, 1656

Thor is on Youtube!
Check it out at http://www.youtube.com/watch?v=I-xWPEzNl_o

We're still crunching on fundraising -- Angela's made her goal, Thorwald has made his goal, Jeremy is still working hard on his. Jeremy's direct donate page is right here

Saturday, 12 Januray 2008, 1607

Recent Photo and we're STILL FUNDRAISING!
Thorwald and Gunnar, this fall
I'm pulling out the stops on the fundraising this year. We're aiming for a team take of well over $3000. Angela's raised $1125 (her goal was $1000), and I've raised $725 (my goal is $1500). This can be done. We CAN cure diabetes in the near future! We need YOUR help!

Jeremy's direct donate page is right here

Thorwald's direct donate page is http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=86964060

Angela's direct donate page is at this link

Tuesday, 8 January 2008, 2255

2008 JDRF walk for the cure!

We've emailed, we've cajoled, we've campaigned for the JDRF. Now, we post our fundraising letter online, here. Read on, and find out what life is like with a 4-year old diabetic :)

Wednesday, 19 December 2007, 1022

Happy Festivus!
Thorwald's fifth Christmas approaches, and the house is naturally chaotic. Thorwald has grown and grown this year. We're happily using the realtime monitor, and I'd say it's somewhere between Beta and production for reliability. I have high hopes for it in the future. Thorwald loves preschool, and the kids in his class are wonderful -- not a single one has said anything mean to him about his moles, or his nevus. One would think his nevus would be hidden under his clothes, but then one is reminded that he's 4. He jumps up and down and all around like a rabbit on amphetamines most of the time.
The latest schtick is not wanting to stay in bed. He goes to bed compliantly enough, but then there's 60-90 minutes of getting up and coming out with reasons ranging from "I can't sleep" to "can you check my glucose yet?" When he IS staying in his room, he is either doing headstands on his bed, or climbing into his little brother's crib to 'sleep'. Horsing around abounds, but they play together so well that it's hard to stay cross.
Thor is well over three feet tall now, and he hit forty-three pounds at his last diabetes checkup. That means he's out of his old car seat and into a booster seat, which he loves. His verbal skills are insanely advanced, and he's mastered several PC games (Blue's Clues, Reader Rabbit, et al). He plays a PC game, while his brother is transfixed by the images on the screen.
His diabetes is quite well controlled now, but it's a constant battle. His numbers swing wildly -- several hundred points in the space of an hour, and we're facing a change in insulin because our insurance company has changed their policies. They no longer cover the insulin that Thorwald uses -- instead they cover the competing fast-acting insuling, which has (as I understand it) a longer action time in the body. Ah, beloved change: constantly with us.

Wednesday, 5 Sept 2007, 2228

Healthy, Happy, driving us nuts
Thorwald has grown and grown, and matured beyond belief. I was right when I said earlier that we wouldn't do expansions anymore. We've done some rounds of laser-lightening, and the effects have been positive, but not as dramatic as I'd like. It works, but it takes several treatments.
Thorwald's diabetes is well under control. We're using Medtronic's Continuous Glucose Monitoring system, and it works pretty well. Insurance is covering it, and it's a heck of a system. It needs more development, and it's not a closed-loop system yet -- it tells us what his interstitial (not his blood) glucose is, and we need to calibrate it to his blood glucose three times a day. Furthermore, it's not accurate enough to do corrections without a finger poke. But it does alarm when he's climbing or falling too rapidly, and it gives us constant readings -- so we can see when he's climbing after a meal, or when he hits a low overnight, but snaps out of it himself.
He starts preschool next week. I think he'll do okay. I'm really not looking forward to how kids can treat someone who is different, and he still has a lot of moles. Everyone asks if he's got chicken pox, and I've stopped soothing their feelings. Now I just say "Nope. Those are what you call moles." Most people are stopped dead by this. I don't think they mean any harm, but neither do I. Ironically, Thor has been vaccinated against Chicken Pox -- he'll never have it.

Wednesday, 17 May 2006, 1109

Home and happy
Thor got home yesterday about 11 AM, and is in good spirits. He still doesn't want any painkillers, and managed to play at Dakota park for a little while yesterday. He still has a drain in, and yesterday's total output was just over 50ml. We're hoping it tapers off soon, so he won't need the drain anymore. He's being very conscientious (sp?) about the drain--being very careful about it, making sure it doesn't get caught on anything or get tangled or twisted.

Monday, 15 May 2006, 2149

Done.
Thor went into surgery today at noon, and was out shortly after 1330 hours. Dr. Wood made good progress, better than he had hoped. While he had thought that he might be able to excise the pouch of redundant skin on thorwald's right upper hip (really, just to the right of the small of his back), that was not an option. Instead, however, he managed to excavate beneath that skin, and found that it was a mass of fatty tissue and a neurofibroma. Because of the nature of this tissue, he felt it was necessary for Thor to have a drain installed. The neurofibroma has been sent to the lab, but it was Dr. Wood's opinion that it would be found to be entirely benign.
Because of the drain, Thor is spending the night (along with Angela) in the hospital. Thor is in high spirits, and though we've had a hard time keeping his blood sugars up today (funny how that happens when you have to deprive a diabetic of all food and beverage), he's recovering quickly. We had to use glucagon for the first time today, and thankfully it was not in response to a seizure. Thor hit 41 mg/dl in the pre-op waiting room, so we gave him 5 units of glucagon. Ten minutes later, he was up to 58. Ten minutes after that, he was at 107 or so (I forget the exact number). Then we got cocky and plugged his insulin pump back in. Sure enough, thirty minutes later, he was at 58 again. So we disconnected his pump and gave him five more units of glucagon. We checked after ten minutes, and he was down to 53. So, it was another five units of glucagon for little thor. Needless to say, he was a bit put out by all the shots, but he recovered quickly. Thor's surgery, you see, had originally been scheduled for 1045 hours, but...well, things weren't running on schedule.
This evening, Thor had an extended supper, lasting something like 90 minutes as he putzed through his meal. Then, he hit 56 again--detectable by his getting markedly lethargic. I had to chase the nurse out of the room in order to cram some chocolate pudding and candy corn (unlike Lewis Black, Thor adores the stuff) into him. His numbers were normal when I left them for the evening.
This marks the end of our expansions. Dr. Wood has indicated that while Thor will not feel tightness or restriction of motion as a result of the expansions, he would likely experience such things if we continued. The skin was, in the doctor's words, 'tight'. So we'll leave it where it stands, and settle for more laser lightening.
Dr. Wood also aggressively lasered various moles around Thor's body with the GentleLase Laser, and it was evident how much progress he had made. By evening, several of the smaller moles were ready to flake off. We'll likely have some more lightening done over the next years.
And in the "all anesthiesiologists wish they were pediatric endocrinologists" department, we got to have a little chat with the infamous Dr. Newman again. Dr. Newman was polite, friendly, and incredibly nice. He took our word for it that we were managing Thorwald's diabetes sufficiently, and was....well, really really nice to us. It made the visit quite a bit more pleasant than it has been at a few select times in the past.
And if you doubted that Thor really _is_ as tough as one of Heinlein's Mobile Infantry, chew on this: He's refusing all painkillers, because he doesn't like the way they make him groggy. The kid's got a drain in, an IV in one arm, and a several-inch incision (in addition to having had some fairly large areas of skin removed), and he won't even take children's tylenol. When asked if he's in pain, he always says "no, you're just cross!" He's far more put out by the fact that he can't run and play than he is by the fact that he had surgery. His other big complaint is that it's too hard to build with LEGO bricks when his left hand is hooked into the saline drip.
All signs point to Thor & Angela coming home tomorrow.

Tuesday, 9 May 2006, 2017

Surgery Looms
We're coming up on Thor's final surgery, on May 15th. This is a mixed blessing, at best. You see, the progress with the expanders dropped off almost immediately after I made the last entry. They became far more resistant, and Dr. Wood believes we will only be stretching the scar with another set of expanders. Our only option from this point is for split-thickness skin grafts. These would be so painful that Thor would have to stay at HCMC in the burn ward, because that's the only place in the metro area where the nurses have experience with such large doses of morphine for such a little patient.
Angela and I talked it over, and we asked Thor what he wanted. He doesn't want skin grafts. He likes his furry little legs, and he's asked to get a tattoo on his right hand, so it matches his left hand (which has a largish mole in the center. He's also stated that he wants gold earrings like me. I told him he has to wait a few years for the tattoo and earrings, but I can't very well refuse him the earrings entirely. It'd be a tad bit hypocritical, methinks.
On the parental front, we can't see the advantages of skin grafts. The resultant scar tissue still wouldn't be able to sweat, and would probably be more fragile than the skin on the nevus. Throw in the pain, and the fact that Thor doesn't really have a nice big swatch of perfectly clean skin from which a graft can be harvested, and you can see our reservations. Furthermore, there isn't a lot of evidence to suggest that surgically removing the nevus lowers the chance of skin cancer. Everyone _thinks_ it will, but a century and a half ago it was accepted practice to use leeches for bloodletting, as well.
On other fronts, Thor's blood glucose averages have been rocking again. His 14-day average is 201, and his 30-day is 199. He's happily building with his LEGOs most every day, and very much enjoying Gunnar's company. Thor will have an entire summer without expanders or surgeries looming over him. He can swim at Margaret's pool, and play in the backyard, and generally be a kid. We're all looking forward to this summer. Personally, I don't think I've ever looked forward to something so much.

Tuesday, 11 April 2006, 1013

Many updates
Thor is well on his way with the expanders. We'll go in tomorrow for yet another. Currently, the expander is about C-cup sized (they typically use breast reconstruction tissue expanders, so we often joke that Thor has one breast in back for dancing), but it'll get bigger yet. Dr. Wood is so pleased with the results that we are not yet scheduling surgery. We'll just keep expanding as long as we can.
Dr. Volgouropolis, the pediatric Endocrinologist, saw us last Thursday, and all was well. We're working on getting Thorwald to remain calm in the doctor's office, because he's...well, he's learned that he can get away with tantrums there and we can't have that. Thorwald did very well with Dr. V, and we found out that Thor's HbA1c is at 7.5, which is a little higher than I'd like, but quite good for a diabetic sub-3 year old.
Thor found the LEGO shop-at-home catalog on Monday, and started making his requests for his birthday. On a lark, I put them (along with his requested Take-Along Thomas toys) on an Amazon.com wishlist called Gifts for Thorwald. Yes, it's under my name, but rest assured, he did actually request everything on there. I prioritized the gifts, too. No need to get anything, mind you. =)
All in all, everything is well :)

Friday, 3 March 2006, 1837

Today's Expansion
20cc and 25cc put in this morning. Dr. Wood said that things are going well, and that everything looks good. There's a little bit more resistance than a person would like to see, but that's probably just because a line internal to the expander is twisted. Thor took the expansion quite well, with only some crying. That, mind you, ended as soon as he got another sticker ;)

Thursday, 2 March 2006, 2030

The latest tissue expansion is going well
Thorwald is four weeks into expansions, and handling it well. Dr. Wood has managed to fit about 120cc of saline into one of the expanders, and 80cc into the other. The smaller is giving some resistance, and we're having mild issues with the ports migrating across his back. Basically, the expanders shouldn't be moving, but in Thor, they most certainly are. It hasn't interfered so far, and we're keeping our fingers crossed that things will stay AOK

Monday, 16 January 2006, 2252

Tougher than the Mobile Infantry, I swear
(If you don't get the MI reference, go read Heinlein's book Starship Troopers. Don't see the movie) Thorwald is a serious tough guy. He made it through surgery, with nearly a tear beforehand. Dr. Wood lasered the moles on his face aggressively, as well.
We also took a more aggressive approach with insulin dosage, and Thor's numbers were good all day, save for a reading of 45 and 55 at the beginning of surgery.
Thor recovered quickly, and was down in the playroom within a few hours of coming out of surgery. His back is sore, but he refuses to take anything more than Tylenol 3 w/codeine, lest he have to be put on a monitor. He is very, very clear on the fact that he does NOT want a monitor. His pain threshhold is amazing.
He happily watched Thomas The Tank Engine videos in the hospital room, ate a massive amount of supper, and then snarfed down another 4 cups of chocolate pudding throughout the day.
The incision is about 8 cm long, and Dr. Wood managed to get two expanders in. The ports are still very visible through the skin. The incision was made in the nevus itself.
Thor is MRSA-negative now, but he's still getting a full course of powerful antibiotics, just in case any MRSA is still resident inside his body. The last time we had problems, it was Dr. Wood's learned opinion that MRSA had hung out inside a pocket of scar tissue. When that pocket was ruptured, the MRSA colonized. That is the reason we took such a long break from surgery--to give Thor's body time to consume all the scar tissue, and let us start from Tabula Rasa.

Sunday, 15 January 2006, 1417

Upcoming Surgery

Tomorrow, we go into Gillette for Thor's next tissue expander insertion. They will also be using the Alexandrite laser to lighten many of his smaller moles. 1030 hours is his scheduled time, and of course Dr. Wood will be doing the work again.

Sunday, 15 January 2006, 1341

JDRF walk coming up

Next Saturday is the Walk For The Cure at the Mall of America. Angela has organized a very small team, on a last-minute basis. I could try to shill for donations, but Angela wrote a better letter than I ever will:

Dear friends and family,

The local chapter of the Juvenile Diabetes Research Foundation is hosting its annual Walk to Cure Diabetes at the Mall of America on Saturday, January 21. Last year we didn't participate as we only learned about it a few days before the event. My only excuse for the late notice this year is that I just recently learned that some of you are interested in walking with us, so I thought I'd send a note out to everyone who might be interested in helping out in one way or another. My goal for next year is to start planning well in advance and have a real team organized to be there for Thorwald.

Here are the ways you can help this year:

  1. Help us come up with a good name for Thorwald's team! Examples of existing team names are "Kayla's Cure" and "Taylor's Troops." You get the picture. Something catchy but succinct.
  2. Send me a check made out to JDRF. Any amount would be much appreciated and put to good use!
  3. Come out and walk with us! Walkers are encouraged to collect pledges of their own, but the JDRF also welcomes anyone who just wants to show up and walk for moral support. Let me know if you're interested and I can give you more information. I also have extra collection envelopes for anyone who might want one.

Most of you have witnessed firsthand the daily process of living with juvenile diabetes. The efforts of the JDRF have greatly improved the day-to-day manageability of this disease, but a cure is still the ultimate goal. Insulin pumps, glucagon and rapid-reporting glucometers have all granted our Thor the ability to live an almost completely normal life. Our most fervent hope, however, is that he can be completely cured and freed of ever having to wonder about his blood sugar levels or the long-term effects of diabetes. Money given to the JDRF directly funds such endeavors.

So many new technologies and new areas of research have recently opened that we honestly believe a complete cure will be here within Thor's lifetime. Our hope is that such cures will be available within the decade. If your situation is such that you cannot walk, and you cannot donate, then you can help by simply asking political candidates this: "How much money do you intend to allocate for diabetes research?"

Thank you all for your continued love and support!

Angela, Jeremy, Thorwald and Gunnar

You can also paypal us, using my email address.

If you don't have money, and you don't have time, then just do this: The next time some idiot politician starts blabbing about "Defense of Marriage" or "Homosexual Agenda", ask them what they're doing to stop REAL problems, like heart disease, cancer and diabetes. Maybe we should take some of that money they're using trying to legislate behavior, and use it to fund research which can prevent hundreds of thousands of deaths per year.

Sunday, 15 Jan 2006, 1211

Diabetes update

Thor had his diabetes appointment a week ago, and his A1c was up to 8.7. Needless to say, we're being quite a bit more aggressive about correcting highs again, and swapping out his infusion set every 2 days, instead of every 2-3.