zadblog

The elves are back

2008-12-21T09:43:00.003-06:00

Check it out now, it's only available till 1/15/09.

The dancing Z elves!

A little life lesson

2008-12-21T09:00:00.000-06:00

So, as the girls and I arrived at daycare one day, there was an interesting van in the parking lot. A window was being repaired at the school, and the van had that big apparatus on the side for holding big panes of glass. Evie was mystified and thought is was really cool. Just as we stopped gawking and turned back to the school, the repairman was passing by us. I explained that Evie thought his van was the coolest thing ever. He looked at Evie and gave her some career advice: "Stay in school".

Sleep study, pix and random stuff

2008-11-12T13:19:00.005-06:00

Alert - new pictures are up on the family site.

Yesterday Gwen had a sleep study done. Basically that entailed trying to sleep in a strange crib with 30 wires attached her little body, plus a couple of straps around her chest and a tube under her nose to monitor breathing. As you can imagine, Gwen logged her objection to the whole setup, but finally fell back asleep. Sleep was a little uncomfortable, evidenced by a few brief crying spells during the night, but she did sleep through the night. Her final revenge was to spit up onto a bunch of the wires in the morning.

The sleep study is just precautionary, though. We do not suspect that Gwen has sleep apnea, or other sleep problems. However, her low muscle tone could result in problems that we wouldn't otherwise recognize, so the study was done.

By the way, if you only follow the zadblog and I haven't talked to you about Gwen's definitive diagnosis, you're lacking some info. I won't be posting any of that info, so give me a call for the scoop.

In other news, Evie has resumed swimming lessons. We dive into the pool once a week, and she hasn't missed a beat. Being a veteran of the shrimp/perch class, she shows the little ones how it's done. While the other kids contemplate the edge of the pool, Evie has already crawled out on her own and jumped into my arms. Gotta pay attention swimming with Evie!

Now for some random stuff.

Science is cool

A funny take on the movie The Ten Commandments

You can take some college science courses for free

2008 Election through the eyes of a five-year-old

Funny of the day

2008-11-03T16:39:00.002-06:00

So we had our young niece for part of this weekend. We went grocery shopping for dinner, and we arrived at the frozen food aisle to get some french fries. She pointed at a bag and said "well, we can't get THOSE". "Why not?" I asked. She very matter-of-factly replied, "because they're McCain".

Trickle down politics at work.

Just call me "stretch"

2008-09-05T12:07:00.004-05:00

Haven't posted in a while, so thought I'd share this tidbit. Gwen remains on track weight-wise, as we're now in the "1/2 ounce gain per day" camp, as expected for her age. A little above average on the total weight, too. Height is where she's wrecking the curve for the other babies. Even without the (significant) boost from her "80s hair band" hair, she's at 20 1/2 inches, putting her in the 99th percentile.

You go, girl!

On a side note, here's the parental lesson of the day: If one child refuses to fall asleep at bedtime, causing her to sleep in, the other will necessarily wake up extra early and ready to start the day.
(be very quiet, and you can hear our multi-kid friends fiendishly giggling at us)

New pix

2008-08-04T22:01:00.003-05:00

OK, so I lied. We did add some new photos to the Gwen site, because we got Oliver's pix from the baptism. Check 'em out.

New pictures were also added to the family photo site.

Gwen continues to grow on schedule, and Evie is increasing her vocabulary every day. The latest discovery is that Evie loves grilled shrimp. So, dad's been buying and grilling the shellfish quite a bit - along with the bratwurst and veggies, of course.

Excitement this Saturday, just after we finished dinner. We heard some thunder, but there was no storm. I saw the treeline in back of us moving, then bolted out the back door to see if anyone was hurt. Turns out a full-sized oak tree in the lot in back of us sheered off near the ground and fell onto the house next to it. While there was quite a bit of damage, it could have been much, much worse. Everyone was in the basement, so nobody was hurt. A 4-season porch took the most damage, and the roof was largely intact. Another neighbor performs tree removal, so the tree was gone by lunchtime on Sunday. Whenever we're in the back yard now, Evie looks up and says "tree broke". On Saturday when we went back to look at the tree, Evie proclaimed to the homeowner that I could fix the tree. Sadly, I could not.

Ounces still packing on

2008-07-29T21:21:00.002-05:00

Gwen is continuing to gain weight right on schedule. We're up to 12 pounds, 12.5 ounces.

In other news, Apple finally put back the old "homepage" functionality, so a few new pictures are up.

EMG went fine

2008-07-24T23:30:00.003-05:00

Today was Gwen's Electromyography, and things went fine. It was a pretty brief outpatient procedure, and we were home before 4pm. Gwen was out-of-sorts the rest of the day, but understandable and well within medical norms. So we'll see if she's back to her chipper self tomorrow.

By the way, there are lots of new pictures to share, but Apple "upgraded" the mac.com functionality to their new "me.com" site. This has left me unable to post new pictures or edit my existing photo pages in any way. Apparently the "upgrade" was to benefit the iPhone users, and they are very, very slow in returning the existing functionality to the rest of us. Sigh, Apple used to really care about customer service and getting things right...

Dane County Fair

2008-07-24T23:18:00.005-05:00

Evie went to the fair this past Saturday and Sunday.

While she really enjoyed seeing all the animals, she is most definitely NOT a fan of being close to a horse, and if it neighs, there will be a shockwave of terror. Petting the bunnies went much better!

Hybridfest was also at the fair - most cool. While I'm not about to drive the Prius to Minneapolis and drop $10k on a plug-in upgrade, it was great talking with Hymotion, and seeing how nicely they have packaged the plug-in mod. Don't get me wrong - I'd love to do it, but can think of a couple of college funds that have greater need for those bucks. Plus, it'll give me a chance to post these two cool Opus toons!

Soon, they'll recognize me

2008-07-23T21:00:00.002-05:00

With Gwen's EMG on Thursday of this week, we're on heightened alert for any sign of illness. Evie had some coughing fits, so she got checked out and got a clean bill of health. Perhaps it was a little virus that she's successfully fending off, perhaps it's some type of seasonal allergy developing - not sure.

Of course, that couldn't be our only scare. Monday afternoon Gwen started to not be herself, including a low-grade fever and some slightly labored breathing. So by 6pm we were at the doctor's office, and the answer was that things seemed fine, but the heavy breathing could be better evaluated by the ER. So around 7pm we were back in the ER. Blood sample, chest x-ray and a small cadre of doctors later, there was no definitive cause identified. Since pneumonia and other nasties could take another day to bloom, we were admitted to the children's hospital, again. Around 1:30am we were asleep in our room, and the day began about 6:30am.

Many, many medical folk later, the whole episode was written off as "well, she sure seemed to have had something, but fought it off". Around 6pm on Tuesday, we were all home again.

If we have any more episodes like this, they're going to have a personalized mug of coffee waiting for me on our next arrival, a-la Home Improvement.

A matter of perspective

2008-07-14T21:25:00.004-05:00

Gwen is so tiny next to Evie, but here she is next to her newest cousin, Lydia. Keep in mind that Lydia is growing like a weed and already 45% over her birthweight. You've got a good lead Gwen, but Lydia is catching up quick!

When you're not even 3 months...

2008-07-12T11:37:00.002-05:00

...how do you effectively communicate the fact that you're tired? By sleeping almost 14 hours. Seems that mom and dad aren't the only people around here exhausted by this week's events. Gwen fell asleep around 8pm and had the continuous feeding till 8am, and slept almost to 10am. Many lessons have been learned, like we'll need intra-night diaper changing, nuances on dealing with and resetting the pump when you run out of formula before you expected to, you shouldn't forget to unclamp the tube after refilling the bag or else the pump's alarm will wake you up as soon as you fall soundly asleep, finding out that a 4-ounce bottle can be less than 4 ounces and the pump's alarm will wake you up to reinforce that, we need a better "nest" to keep Gwen in place on an inclined mattress, and during manual feeding you have to be really careful to keep the syringe attached to the tube or else you've got some cleanup to do.

Evie, of course, came to the rescue at 6:30am today to make sure that mom and dad didn't waste daylight by catching up on sleep. Oy!

First night is going well so far

2008-07-11T22:39:00.006-05:00

Gwen went onto the pump around 8pm, so she's getting a continuous feed of one ounce per hour till morning. Since the formula can't sit out too long, we replenish the supply every 4 hours. At the moment she's had 80 of the 120 ml in the current bag, so replenishments should be at midnight and 4am. She's sleeping peacefully - so far, so good. As a bonus, Evie was pretty tired too and didn't fuss too much about bedtime.

We're home!

2008-07-11T15:08:00.002-05:00

We got home around 2pm. Would have been sooner, but we stopped for lunch and went to Gwen's regular doctor for a quick shot of rotavirus vaccine. Since it's normally administered orally, so with the feeding tube the vaccine was just squirted right in. The entire doctor's appointment, including waiting, was five minutes. Guinness has been alerted.

All's well, and Gwen's gotten her first G-tube meal at home. Since we were used to the old NG-tube, the new method is a bit awkward, but I'm sure we'll gain proficiency soon.

Heading home soon

2008-07-11T11:25:00.002-05:00

It's 11:20am, and we just finished Gwen's first bolus (through a syringe, whether gravity or plunger, rather than through the pump) feeding. This is how she'll be fed during the day, and we're supposed to receive a pump for night feedings. We got training on the use and care of her new tube, and discussed how many calories she should be getting per day - which is more than previous, so open wide, Gwen!

Our pediatric neurologist stopped by. He had reviewed the MRI and did not see anything unusual, so Gwen's brain development got a clean bill of health. He also had the biggest entourage of any of the doctors, with 4 observers.

Discharge is imminent, they're working on the paperwork right now.

We are doing so great...

2008-07-11T07:58:00.004-05:00

...that it looks like we'll be going home around lunchtime today.

We just had a visit by our GI surgeon, and she was very pleased with Gwen's progress. She was taken off of IV fluids during the night, and we're just about to stop the continuous feeding. That means she'll be back to her normal schedule of feedings, but we will have the continuous feedings going on through the nights for a while.

Right now we're just verifying that her monitors and IV port can be removed, and when that happens, the feeding tube will be the only tube/wire left. That is sure to increase Gwen's happiness, as nobody likes to be tethered to machines.

She's been in such a good mood that I'm sure it's joy at being free from the NG-tube.

If you're happy and you know it...

2008-07-11T04:21:00.002-05:00

...wake up dad!

It's 4:20am and Gwen is falling back asleep. She sprang awake about 3:30 and has been completely bright eyed and active. Cooing, flailing the arms, and looking for a pinky to suck on - she's as awake as can be, so we had a good (albeit one-sided) conversation. It's great to see her so active and happy that it's worth it to be up in the middle of the night.

The feeding pump was changed from pedialyte to regular formula at 2am, so Gwen's back to her normal food. We're still on the continuous 30 ml/hour feed, but that will change to regular feedings about 8 this morning. Medication-wise, she's still on Tylenol for post-op soreness, but she still shows no sign of needing anything stronger, so it really is a very good recovery. The surgeon even said that she'd more likely to have soreness in her leg (muscle biopsy) than the G-tube in her stomach.

Well, back to sleep, lulled by thunder and flashes of lightening.

Awake and doin' great

2008-07-10T20:37:00.004-05:00

Gwen is really doing well. Right now she's thrashing about, without any signs of distress - so she's just a happy baby expressing herself. She's on a little bit of Tylenol right now, so I'm sure that helps - but not needing anything heavier after having had surgery is a really great sign. Feeding-wise, she's getting 30ml/hr in a slow, constant drip. That's her normal daily intake, but she's getting pedialyte constantly instead of formula in meals. So, it looks like the new tube is working out just fine, and her stomach isn't too bothered by the day's activity.

We don't yet know when Gwen will be discharged, as it all depends on how she does through the night and tomorrow. We are expecting it'll be tomorrow sometime, but no guarantees yet.

How are all those tests going?

2008-07-10T15:00:00.003-05:00

We had a visit from Gwen's genetic/metabolic specialist at 3pm. He and the radiologist have looked at the MRI and did not see anything abnormal, so that is good news. The neurologist hasn't had a chance to inspect it yet, so the final word is not in.

So, what do we know about what's causing the hypotonia?
SMA was ruled out previously. Prader-Willi was ruled out by recent blood work. Myotonic dystrophy is currently being checked for with the latest blood work. All other metabolic disorder checks performed so far have come back negative.

The muscle biopsy that was taken today will result in a few different tests. First, there are several myopathies that are checked for. If those are negative, the mitochondria are inspected under an electron microscope. (there were no elevated lactate levels in her blood, so the chances of a mitochondrion problem is very slight)
Then a further look at the mitochondria will be done by an outside lab, and can be a couple of months before we get that back.

There are some very rare conditions that can be checked for should all other test be exhausted without a diagnosis, so this odyssey may continue for a while yet.

One course of action will be to start taking Carnitine, a vitamin. This has shown to increase muscle tone, but exactly how it works is not known. This is something we didn't want to start on until after the muscle biopsy was done, so the regimen can begin in a couple of days when the surgical recovery is complete.

We're in the room

2008-07-10T13:52:00.002-05:00

At 11:50 we were taken to the recovery area, and Gwen was there wide awake, and had already charmed everyone she met. She was on very light oxygen, and received a little morphine because she was frowning a bit. From there we all went into room 8 in the pediatric intensive care unit, somewhere around 1pm. We don't need the picu, but this was the room that was available.

Gwen is singing up a storm and wiggling around, displaying a remarkable recovery from the anesthesia. We can tell by her face that she's still feeling "off", but overall doing very well.

She's just now starting her first G-tube feeding, and she'll be on just pedialyte for the rest of the day. It will be pumped in at 10ml/hr for the first hour and 20ml/hr for the next hour, just to start off very slowly. Tomorrow at 9am we'll get the full lesson on how to feed her and care for the new tube.

The plan is that she'll be able to go home tomorrow, but that is TBD, depending on how the rest of the day goes.

All surgeries done

2008-07-10T11:33:00.003-05:00

The other surgeon visited us at 11:20 to say that the biopsy is complete, and all is well. No word on when we'll see Gwen in the recovery room, but we're pretty anxious about it, as we expected to see her almost 2 hours ago.

The tube is in

2008-07-10T10:34:00.002-05:00

Gwen's surgeon just gave us an update. The tube has been successfully inserted, the muscle biopsy is underway, and Gwen is doing just great. We even got some inside-the-tummy pictures, but don't look for me to post those. ;-)

The procedure went just as expected, and Gwen will be eating through her new tube at 2pm. To give you an idea of how small the surgery is, the 2 incisions for tube are around 1/2 centimeter each, and the biopsy site on her leg is just under one centimeter.

Just going into surgery now

2008-07-10T09:29:00.002-05:00

9:20am and we just got an update. Gwen has been transferred into the OR for the G-tube insertion and muscle biopsy. They've decided to take the muscle sample out of her leg, rather than the stomach incision point, as it is less prone to problems and easier to recover from.

We asked what the cause of the delay was, as she was expected to be in the OR by 8:30, but there was no knowledge as to why the MRI took so much longer than expected.

Procedures in progress

2008-07-10T08:58:00.003-05:00

It's 8:50am and we're sitting in the surgical waiting area, where we've been for around an hour. We met with lots of docs and nurses, and spent the most time with the anesthesiologists. There's two separate teams that will be working with Gwen, with a couple of folk that will be with her the whole time. The first team is the MRI folk, and that's due to be completed any minute now. Once that's complete, they'll transfer Gwen to the OR for the second team, and they'll insert the G-tube and remove the muscle sample for the biopsy.

Around 7am, Gwen let us know in no uncertain terms that she was hungry. Her cries and sounds are normally quite dainty, so while the crying may not have set any decibel level, they were very assertive for her. After about 10 minutes of that, she decided to give up and took a nap. She'll be getting IV fluids soon, so that'll take care of the blood sugar. We also expect that she'll be able to start eating through the new G-tube today, as early as 4 hours after the surgery.

So, nothing particularly interesting to report, other that things are going (for us) just as we expected. Just waiting for our beeper to go off, letting us know that there's news.

All systems are go

2008-07-09T21:29:00.003-05:00

Gwen's surgery is in the morning, wish us well.

Evie tried to complicate matters this week, and might yet succeed. She was home with a fever the last two days, but we've minimized interaction between the girls, and Gwen does not appear to catch whatever Evie had/has.

Update: Gwen's last feeding through the NG-tube was 1am on 7/10. That means that after the feeding, we removed the tube. Always a happy event, as Gwen is simply a happier kid when there's no tube taped to her face and shoved up her nose.