Off Insulin

We took Isaac off of insulin last night to see how his pancreas would do (so his last dose of Lantus was yesterday morning). I checked his glucose throughout the night and he had terrific numbers so this morning we again skipped his regular shot. So far his beta cells have kept up, and he is doing very well!

Transient Neonatal Diabetes Mellitus. He is growing out of it!!!

A Promising Trend

Isaac requires less and less insulin. His glucose readings continue to look great (mostly between 100-150 lately).

We've decreased Isaac's Lantus to 1/4 unit at night and 1/2 unit during the day, and haven't had to use Humulin R in almost 2 weeks!

=)

Four Years

It's been four years to the day since Jonathan wrote the first SavagePeanut post. He started it to capture some of the day to day with a very busy (almost) two year old. We have a record of early Peanut verbiage, many of the perplexing (to his parents at least) things he did, our great and not-so-great parenting moments, Melissa's babyhood, and now Isaac's.

During this time we've discovered the inherent and striking differences between little boys and girls. (Don't try to tell me it's all nurture!) We've picked up new hobbies, and resumed old ones. Our family has experienced our first loss of a loved one, and our hearts have welcomed two more little people into our home. We are now the "proud" owners of a minivan. The beloved black corvette is in the past (ran great, but the cost to make it pass emissions was exorbitant). Much to Matthew and Melissa's delight, an uncle and two aunts have joined the family, and three soon to be four cousins! Jonathan has discovered that while he likes teaching (motivated students at least), at heart he is a programmer. Recently, flying with two kids became easy- just in time for our third. In the last year (last month especially) we have really been grateful for health insurance- many firsts for our family there. Our "Little Peanut" is now a big kindergartener. "Miss Meliss" is a very capable three year old with a LOT to say. Mellow, sweet Isaac is home and in my arms as I type.


I wonder what the next four years will hold?

The odds

At this point I'm talking to four companies in the SF bay area, and one in pennsylvania. And I might see if Rackspace is still interested, in San Antonio.

So, if we do move (still an if -- Mozilla, the leading contender at this point, would let me work remotely if I wanted to), the odds are sort of stacked in one direction.

The tyranny of the timepiece

Getting Matthew out the door in time to get to school by 8:30 is sometimes a challenge.  Rachel doesn't want him riding the bus because of the Bad Influence on our street, so I drive him.  It's not really on my way to work but it is on the way to the bakery that makes decent croissants!

I haven't had to Be Somewhere On Time every morning since I graduated from college almost 9 years ago.  (The life of a programmer is many things, but regimented is not one of them.  Not anywhere I'd care to work, at least.)  It's kind of stressful.  I miss taking my time and leaving when I'm ready.  I'm not sure why, but I can feel the adrenaline in my system driving him in.  Maybe because punctuality is just the first taste of the conformity our factory-style educational system enforces.

Probably most of society just accepts their clock-ruled schedules as the Way Things Are (with maybe a dash of un-sympathy for nonconformists like me) but going back to it after a long break makes me wonder a little how this came to be Normal.  Starting each morning with a jolt of commute-fueled adrenaline isn't exactly healthy.

Call Me Vain But...

When I hear, "Wow, you look good...for just having had a baby!" I think hmm, it would be even nicer to hear, "Wow, you look good!"

Period. No qualifier.

Sigh. Someday my clothes will fit again.

Normal for Isaac?

The past few days Isaac has wanted to eat almost every two hours. With my other two babies I shrugged it off as a normal growth spurt that seems to occur around 6 weeks. The frequent nursing eased off after about a week. In the case of this guy I'm not so sure... His glucose levels have dipped below 100 mg/dL about once a day the past several days. They are above 70 mg/dL (with one falling at 64- that made me nervous) so as long as he eats immediately there isn't the fear of hypoglycemia. After eating even with low numbers his blood glucose jumps well into the 100s. We haven't had to use glucagon yet, and I'm hoping we never do. That would be pretty scary. He is making some insulin so it is a little hard to gauge exactly how much he needs. Plus, I have no idea how much he eats at a time...

I can tell a difference in his cry when his glucose levels are low though. It is more high pitched and frantic. So is he getting a bit more insulin than he needs and is eating frequently to compensate? Or is he just going through a growth spurt? Tomorrow we will decrease his morning Lantus by a quarter unit and see how the day goes.

Here's hoping things settle down soon. It's a lot of extra heel pricks for him, less sleep for us, and I have to pump periodically because he's stimulated way too much milk again.

Addicted to blogs

It started out innocently enough....

A family member living far away started a blog, so naturally I read it from time to time. Then I found myself reading blogs of friends and other family members and commenting every once in a while. Now (when I find the time ha ha) I read blogs by various doctors, waiters, moms, nurses, expats in Morocco, Thailand, the Philippines (I blame those on Jonathan's wanderlust), gardeners, midwives, and lately diabetic's blogs.

I settle in to nurse Isaac and am transported away to exotic locales and interesting lives. Some experiences are similar to my own, others very, very different. It is like reading small pieces of autobiographies. I read about adjusting to new cultures and languages, babies born, nuttiness on the psychiatric floor, going to school, prize tomatoes (and how to grow them!), living full lives with diabetes, gracious people, rude people, raising children (plenty of nuttiness there too), unique patients (altered to satisfy HIPPA no doubt), and naturally I keep up with friends and family as well. (Course for all I know some of them may be written by 14 year old teenagers with vivid imaginations, but I kind of doubt it...) I finally organized them in google's rss reader rather than checking individual blogs every few days. Jonathan is amused it took me so long to do so. "Welcome to 2004, dear."

So when the children are all sleeping, or at least Isaac is sleeping/nursing and Matthew and Melissa are playing nicely together...I enjoy a few minutes to read and daydream.

A Great Day!

Melissa

Melissa is in Ms. Jan's preschool. Originally I planned on joining a neighborhood preschool co-op like I did with Matthew three years ago. We each took turns teaching the six 3 year olds. Matthew and I really had a great time together and he made some close friends. I was looking forward to doing the same with Melissa. Unfortunately that plan went out the window after Isaac was born. So I signed her up with Ms. Jan's preschool (since I had promised preschool, and she was holding me to it). Matthew went there last year and absolutely adores Ms. Jan. She is a grandmother who has taught preschool for years, has plenty of patience, and simply loves kids. She is also conveniently located just a couple of houses down the street from us. This is Melissa's second week, and she is thrilled to go. When I picked her up at noon, Ms. Jan remarked on how well she was doing and what a good listener she was!

Matthew

After preschool, Melissa and I waited on the corner for the kindergarten bus to arrive. Matthew bounded off of the bus and beaming ear to ear. "Mom! Guess what? I lost my tooth at school!" He proudly showed off the gap in his mouth. "And I get to take Diamonds home with me tonight!" Diamonds is the class stuffed bear. Each kid gets a turn taking the bear home and writing about their adventures with Diamonds. Diamonds was sporting an authentic Spiderman costume, complete with mask. Matthew just happened to be wearing his Spiderman tee shirt today as well. Too cool. He pranced and skipped all the way home. "Hey Mom, I was the first one to lose a tooth in my class!" He also took home the tooth book and journal. Looks like the tooth fairy will visit again tonight.

And Great News About Isaac

I heard from Dr. Z regarding the genetic testing today. Isaac has a small portion of chromosome 6 duplicated, which very strongly indicates the transient form of neonatal diabetes. It is likely that it will disappear within the first year. I am cautiously very happy by the news. Of course, even after remission, it is possible to have hyperglycemic episodes throughout childhood, and it may return as a mild form of type II in adolescence or early adulthood. I did find some great information from a geneticist. Random factoid: the mean birth weight for term babies with TNDM is 1930 grams, or just over 4 pounds. Taking that into account, Isaac was BIG at birth.

Updated: Actually he does not have a duplication- he has a whole 'nother (perfectly normal) chromosome from Dad and none from Mom. Uniparental disomy of chromosome 6 (UPD6) Everything else is correct.

The wave of the future

Every once in a while you see a news article with someone who should know better moaning about how his employer googled him and found pictures of him partying or doing something dumb and so he didn't get the job.  Sometimes these articles conclude that someone ought to Do Something to prevent employers from doing that.

That's stupid.  You do your homework on companies to see if you want to work for them; it's only fair to expect that they might want to return the favor.

But this can be a Good Thing, too.  In my technical interview today, the interviewer told me, "I'm supposed to ask you some Python questions, but I read your blog [he meant the professional one, of course], and we don't need to waste our time with those.  Let me tell you about the positions that might be a good fit for you here, instead."

(This brings up one reason you don't want to settle for a boring, unchallenging job: what would there be to blog about?)

See, A Grin!

Couldn't quite catch his widest smile. At five weeks you only get a few seconds worth of baby grin at a time. In other news, he's up to 10 pounds now.

Is that a recipe or a novel?

I just finished reading Julia Child's memoir My Life in France, which on the whole was less interesting than I'd hoped.  It's more of "how I spent twenty years writing a two-volume cooking book" than "life in France in the 50s."  Maybe I shouldn't have been surprised, but the title and dust jacket mislead me and I had no prior knowledge of Julia Child other than the name seeming vaguely familiar.  

(Actually, I have read one other book about Julia Child, if only tangentially.  Julie and Julia is about someone roughly my age setting out to cook through the entire first volume of Child's book in one year, which sounds like a great premise, but the book sucked.  I won't go into more detail; there are plenty of two- and one- star reviews on Amazon.  Which I should have paid more attention to.)

One thing that did pique my curiosity was Child's description of spending a couple years, off and on, figuring out how to make baguettes in a home oven.  I was curious, so I googled it, and sure enough, someone has transcribed the recipe for the internet.  In the book, this was seventeen pages.  That is one intimidating recipe.

Here is more, with commentary and pictures.

You know, I can take or leave baguettes, but French croissants?  That might be worth the effort.  (Grocery store croissants are invariably nasty, and the nearest specialty baker is (a) a 20+ minute round trip a way and (b) sometimes out of croissants already anyway when I get there.  Grr.)  Then again apparently croissants are harder than they look.  "Instant stuff in a can?"  Idiot.

Now I'm hungry.

Chubby cheeks

It was brought to my attention that we haven't posted any recent pictures of Isaac. We've been a little lax in even taking pictures. He looks very different from even 2 weeks ago.

Matthew and Melissa have been so good with their baby brother. They try to entertain him. Matthew tells jokes to Isaac, and faux boxes him when Isaac waves his fists (Isaac always wins). Melissa brings him her toys and makes up stories involving ponies. They've been very gentle towards him. I'm sure when Isaac is a little older he'll appreciate his siblings' antics.

Arts and Crafts

Matthew loves to make things. Grandma showed him how to sew and he made a pillow for his bear.

As promised the necklaces Matthew made:
Matthew is getting pretty handy!

Poke, Poke, Part II

When some people learn about Isaac's diabetes, they say some silly things. "Do you have to poke him? I could never do that. Doesn't that just break your heart? Poor baby."

I usually politely change the subject, but c'mon folks! Not. Helpful. People. Really. NOT helpful!

Does it break my heart? No. 'Course I don't enjoy poking Isaac (and for that matter neither does Isaac) but I have to frame it differently. Jonathan and I are keeping our baby ALIVE, HEALTHY, and OUT of the HOSPITAL.

Even while in the ER the word diabetes came up. During the lumbar puncture I cowardly stayed in the hall while Jonathan offered what comfort he could to Isaac. I could hear Isaac crying, and I fell apart. A nurse saw me and gave me a kleenex and some water. I told him about the possibility of diabetes, and how frightened I was of that. Having some family members with the disease, I knew just enough to be alarmed. How do you manage glucose in a newborn?!

Needless to say it was a rough night, especially for Isaac.

We're a little past the initial shock now. We know what we are dealing with (except for the exact genetic cause...), have a plan, and quite frankly are too busy to indulge in why us, or feel too bad about the whole situation. It is what it is....and it is manageable. It's also quite interesting to read about. Just in the last six years research and papers on neonatal diabetes have accelerated. From the looks of things, there will be considerably more information within the coming years. More on that in a future post.

So checking glucoses and injecting insulin is now just what we do in the Ellis household. There will be more to learn when he starts solids and when he gets big enough to tear around the house. For now, if only we could get past the sleep deprivation!! Eh, but that is a common complaint with any newborn in the house.

How Jonathan sees the world

Speaking of driving, I was explaining to Rachel the other day how I read exit signs:

"1 mile means 45 seconds to pass slow drivers.  1/2 mile means 20 seconds."

Wisdom

A couple days ago I was driving down 123rd with Melissa.  She was chattering away as usual about nothing in particular.  Then she started telling me about traffic lights:

"Red means stop!"

"Dreen means doh!"

"Yellow means doh!"

I started to correct her, but I realized she was right.

He smiled!

When I picked up Isaac this morning he looked up at me and gave me a gummy grin. To the nay sayers, this was NOT gas. He looked like a happy baby; happy to be held.

9 lbs 2 oz

and still growing! Up 4 pounds (from his lowest weight) in 3 1/2 weeks. Not bad, not bad at all.

Fruits of My Labor

We had a pretty good yield from my small garden this year. I've picked the last of the corn, the zucchini is slowing down, but the tomatoes, peppers, green and purple beans, and cucumbers are still going strong. We're trying to eat the carrots faster than the %$*! gophers. I go to war with them every year....and lose. The beans pictured are called royal burgundy, or according to Matthew "magic beans," because they change to green when blanched. I tried out a Brandywine tomato plant along with my usual mix of romas, beefsteak, early girls, and cherry tomatoes. They are massive pink tomatoes! The one below is not the largest I've had, and it weighs in at a hefty 1# 5 oz. It has a sweet flavor and is quite meaty. Very tasty too!


I've finally gotten around to uploading pictures of Isaac just before we left the hospital. This is right after all the monitors came off. I planned on taking more pictures...but we were just so anxious to get out of there!


In addition to the diabetes instruction, we had to take parenting classes before discharge. Standard NICU policy. The infant CPR was actually useful. Courtesy of the hospital, we have a video to review, and doll to practice on. The don't shake or beat your baby video was just...yikes! For the rest, the nurse gave us the readers digest version, since hopefully we know a few things by now.

Then there was the paperwork. Sign here, here, and here. Lots and lots of paperwork for the nurse to fill out. Wait for the pharmacy to finish filling the prescription and finally, hours later, we were out of there.

As anxious as we were to leave, it was kind of frightening to be responsible for taking care of him. I'd only given him one insulin injection in the hospital (earlier that day), and yet we were now in charge of managing his glucose levels around the clock and injecting him several times a day as needed. Granted, we did have contact with the endocrinologist, but still! A week out now, and I'm just beginning to feel a little more confident...

Legacy

Today I ate lunch with Gary and Jeff.  I worked with Gary and Jeff at DTI; I got them both hired at F50, but Jeff went back to DTI.  (Long story.)

Jeff starts talking about how he's been knee-deep in database code lately.  "Your code is better than most, Jonathan.  At least you left comments showing you actually thought things through."

Gary laughs.  "That's not the only thing he left!  I remember there being an almost one-to-one correspondance between 'damn' and 'jbe.'"

Gary didn't explain what prompted him to study this phenomenon.

TV ignoramus needs your help

Rachel told me that we need to find a new TV show to watch.  She had no suggestions herself, but she rejected all my suggestions as too guy-oriented.  We like

• Mysteries (Nero Wolfe, Columbo, Monk)
• Comedy (Cosby Show, Jeeves and Wooster, The Muppet Show, The Tick)
• Samurai 7 (the anime, not Seven Samurai the movie) (yes, Rachel liked this one too, but I don't think I can put "Action" or "Anime" as a category with one data point)
• Samurai Jack (hmm, another action psuedo-anime: maybe Rachel just has a thing for guys with big swords)

Help?

Difficulty: must be available on DVD or hulu.com.

Public school ho!

As planned, I called the Montessori school to get a backup plan in place before visiting the public school.  Yes, Montessori had openings in both "Elementary 1" (roughly 1st-3rd grade) and "Early Childhood" (kindergarten and preschool) and they'd be happy to let him try Elementary 1 if we'd like.  And no, they didn't give homework, at all.

If Elementary 1 had a half day option we would have gone with that, but it didn't, so the public kindergarten was our first choice.  I headed over with Matthew's immunization record.  The administrator said they had no school policy about homework, so it was up to the individual teachers.  However, she was adamant that they could only put him in one of the five kindergarten classes, the one with the least students.  Two of the others were close enough numerically that I didn't see what the big deal was, but I decided to talk to the one teacher first, a Mrs. Barton.

Mrs. Barton explained that her policy was to give parents a set of monthly goals for skills for their child to learn, and that she did not assign homework as such unless a student needed more practice to achieve those goals.  Sold!  Guess we lucked out this time.

Rachel won't even have to do any driving -- I will drop him off in the morning, and he can ride the bus home in the afternoon since the budding juvenile delinquent on our street is in first grade, so will be on a later bus.

Matthew's invisible book

[As dictated by Matthew lying on the couch, holding his invisible book in front of him.  He doesn't know I'm writing down what he narrates.]

One time, there was a transformer that turned invisible and the bad guy was like, "Huh?  Where did the good guy go?  Maybe he went to his spaceship."  "Let's go!"  And all of them went to go there and he made hundreds of arms with his magic and then (transforming noise) and he poured water on all their jetpacks and then they landed in fire and got all burned up except for one.

One had a fly power, and he flied to a spot where there wasn't fire.  And the other bad guys couldn't fly so they burned up.

Then the guy that could fly put out the fire and fixed all his bad guy teammates.  He was the captain, the leader.

The leader's jetpack got emptied out and he had wings, so he could still fly.  Then he flew to get to the spaceship, and the invisible robot, the good guy, had lasers.  He took out his lasers and lasered off his wings.  Someone built another fire and the bad guys got burned up again, and the leader too, because the good guy lasered off his wings.  Both of them.

(There's one thousand pages in this book.  That's a lot, huh?  We got to number 20.  Maybe tomorrow we can read some more together.)

That was fast

Tuesday night Matthew had homework that was the same as the first three nights.  His handwriting is terrible, so I had him do that section, but I drew a line through the rest of it and left a note to the effect that I was satisfied that Matthew understood how to do those with my phone number.

The next day the headmaster of his school called.  I wasn't surprised she called, but I was surprised at how inflexible she was.  She was categorically insistent that every student must do every line of homework, "to demonstrate proficiency."  "Isn't that what testing is for?" I asked.  "Yes, but every student must do homework.  It teaches them responsibility to put it in the bin every day."  "No problem; he'll do that, he just doesn't need to do the parts where he's already demonstrated proficiency repeatedly."  "It will get more challenging quickly."  "Okay; when it is, I won't have to draw lines through it."  

Looking back on the conversation, I think there were two things that freaked her out.  One was my laughter when she threatened me with lowering his grades on homework assignments.  "Sure, no problem.  Low kindergarten grades are like water off a duck's back."  Not caring about grades?  What kind of psycho is this that I'm dealing with?  

(And you know, it's not just kindergarten that I don't care about grades in, although I didn't go into that with her.  Why does society care about grades?  In high school, it's so you can get into a good college; in college, it's so you can get a good job.  There's some truth to the first assertion, but unless you go to an Ivy League school nobody cares where you went to college a year later.  Similarly, once you're in the workforce nobody cares about your college GPA.  Unless it's a 4.0, in which case, it can be a line on your resume, but even then it's not a big deal and after your first job your experience will matter much, much more.  I've seen this from both sides of the hiring process.)

The other factor, I think, was one of the times that she insisted that homework prepared students to be productive in society.  I pointed out that in Real Life, productivity doesn't consist of filling out the same arbitrary predigested problems divorced from all normal incentives that 30 other people are filling out, and there was a pause.  I think that was the point she realized that I was an Apostate and there was no hope for my soul.  The only thing to do with apostates, of course, is to burn them -- Sharia seems to be more flexible; as long as they kill you, Allah is happy -- or at least, expell their kids.  So she decided to expell Matthew entirely rather than just dock his grades.  "I just don't think this is a good fit."  She's right about that, but I would have been happy to continue just drawing lines through the busywork, so it galls me to have him expelled because of some bureaucrat's petty power-tripping.  And, of course, the timing is inconvenient.

Rachel doesn't say so explicitly, but she wishes I would just not make waves and make Matthew do the busywork for a couple months.  I almost wish I could, but this is important to me -- I've read the research, and the evidence is clearly in favor of no homework in elementary school; having him do each type of problem at least once and only striking them out when they were clearly busywork was as much of a compromise as I could make.  Rachel has a visceral reaction of I DON'T HAVE TIME TO HOME SCHOOL RIGHT NOW, I CAN'T DEAL WITH THAT, which is understandable, but we are far from out of other options.  And my Ellis stubborness has the bit in its mouth; as I pointed out to Rachel, she knew I was stubborn when she married me.

So, Matthew will get to try public school soon, probably next week.  I want to talk to the public kindergarten teachers, on the theory that (a) with six (?) classes, the odds are good that at least one of them will be sympathetic, and (b) I tried the "don't talk to the teacher ahead of time" policy already, and that didn't turn out very well.  But Rachel is afraid I will just do more damage.  We will see.  Maybe if I call the Montessori school in Riverton and make sure they have an opening as a fallback she will worry less.  They are a lot closer to my views on this; the drawback is that they only offer a full-day schedule for Matthew's age.

Sailing Between Scylla and Charybdis

Isaac's glucoses have been on the high side the last 24 hours. He's just had his first dose of regular insulin (versus the long acting Lantus) since he's been home. It's specially diluted for him from the pharmacy.

On the one hand, sugars too high prevent him from growing, can cause dehydration because he wets so much, and he loses electrolytes in his urine. When his blood glucose gets too low it can cause seizures and shock. Thankfully we haven't been there yet...

It's a precarious balance.

Kindergarten Update

Matthew was bursting with news when I picked him up today from kindergarten.
"Mom! I was the student of the day!"
"I made a new friend today. He and I played a game of silly sounds like this [Matthew demonstrates] while waiting for you to pick me up."
"Mrs. Waite liked my handwriting!"
"We still did baby math, it was boring. We did some not boring stuff too though."
"In the boys bathroom the door squeaked like a mouse. The other boys and me were a little scared, but we thought 'bout what we'd do if we caught a mouse."
"I played firefighter with this girl. She's nice, but kind of weird. She gave me three hugs! That's weird, huh?" "What was her name?" I asked. "I don't know. But she sits next to me."

This is just a small sample of his stories. He chattered for a good 30 minutes. It's very hard not to chuckle here and there while he recounts his day, but I managed to restrain myself (mostly) lest he think I was laughing at him. He takes himself rather seriously.

For You, Mama!

Matthew made two beaded necklaces for me. The first was out of plastic beads, and the second wooden ones. The wooden necklace he chose the colors and designed himself. He did a very nice job, and couldn't wait to show me. What a sweet boy! I will post pictures...

Long Night

So we are checking glucoses every three hours or whenever Isaac gets hungry. At 2 AM we check Isaac's sugar, I change him, Jonathan gives him his sodium (salty milk, mmm!), I nurse him, change him again, suction his stuffy nose (thanks for sharing Melissa), and settle him back to sleep. 4:30 he's hungry again, Jonathan is conked out (poor man hasn't been getting enough sleep), so I repeat the whole process. Then I pump and doctor a breast because I have a sore spot that I don't want getting worse... Noticed a light on behind a child's door. Check up on it. Said child is wet. Change sheets, change child's pajamas and retuck into bed. Isaac is awake again, congested. Suction his nose once again. Rock him back to sleep and he and I go to bed sometime after 6. Get up at 8 check sugars again.

Decide a nap is prudent. Go back to sleep.

Whoever coined the phrase "sleeping like a baby," clearly never had children. I think I will look at sleep as a series of naps...