Ray, Sarah, Owen & Elsie

Whoooooo's Two?

noreply@blogger.com (Ray) — Mon, 15 Feb 2010 23:46:00 +0000

Elsie!

Our little Valentine celebrated her second birthday this weekend.

She had an owl-themed party.

Owen entertained our guests by reading aloud.

She also had her two year check-up today. It came as no surprise that she is still tall (35" and 81st percentile) and thin (23 lbs 7oz and 11th percentile).

Elsie Update

noreply@blogger.com (Ray) — Thu, 14 Jan 2010 01:21:00 +0000

Elsie had another appointment with her neurologist today. Some of the tests have suggested that she may have a metabolic disorder. There are three main possibilities at this point, and we will be doing further testing to see if she has one of them. One of the tests requires her skin cells being sent to Amsterdam to the only lab in the world that runs the test.

So we are not expecting any immediate answers, but at least they seem to narrowing down the possible causes. Ironically it wasn't any of the tests that they ran during her hospital stay, but from a urine test we had done because her new medication makes her pee smell funny. It wasn't even the things they were testing for that showed up, but another aspect that happens to be part of the test. The neurologist said, "Sometimes persistence is better than smartness."

Christmas 2009

noreply@blogger.com (Ray) — Fri, 25 Dec 2009 20:06:00 +0000

This year in addition to reading our Advent Storybook every evening, Owen also had a Lego Advent Calendar. Every night he would get a different Lego character or part. On December 24th it ended with Lego Santa. Needless to say, this was very exciting for Owen.

Owen was also very excited about the Norad Santa Tracker. We think he checked it at least 25 times during the day to see where Santa was.

Elsie and Owen opening their stockings.

Owen's toys from Santa.

Elsie enjoying her new chair and table from Santa.

Christmas wouldn't be complete without some tasty gingerbread waffles for breakfast.

Knitting Notes

noreply@blogger.com (Sarah AJ) — Fri, 11 Dec 2009 18:38:00 +0000

Can you believe Ray didn't include the details of the hats I made for our photo shoot? ;)

I came up with the idea five days before our appointment. Fortunately, those five days included Thanksgiving, so there was a lot of time spent in the car, as well as doting grandparents to wrangle children (thank you!) while I was knitting.

Owen's -- Ear-Flap Hat
Ray's -- Koolhaas from Interweave Knits Holiday Gifts 2007
Elsie's -- Zeebad
Sarah's -- Star-Crossed Slouchy Beret

Family Pictures

noreply@blogger.com (Ray) — Wed, 09 Dec 2009 01:22:00 +0000

We had family pictures taken last week by Katie Skurka. Here are some of our favorites.

The Hospital Stay

noreply@blogger.com (Sarah AJ) — Sat, 21 Nov 2009 16:20:00 +0000

We took Elsie to the Children's Hospital in Milwaukee earlier this week for a bunch of tests to see if they can figure out what's causing her seizures, hypotonia and developmental delays.

This is a ridiculously long post, so the summary for those of you who don't want to read about it in excruciating detail is that she did really well, they got all the tests done that they wanted and that we most likely won't find out anything for weeks, because at this point they've eliminated all the more common causes that they can test in-house, so the tests need to be sent out to various labs around the country.

On to the novel:

Prologue
Elsie woke up Sunday night very congested. Panic ensues on my part, as the last time she was sedated, they told us ahead of time to call and cancel if she was sick. As we have rearranged our lives and my dad's to get this hospital visit done, we just hoped it would be okay.

Chapter One: Monday
We got to the hospital shortly before noon and they took us to the room. It was set up to be a double, but E's name was the only one on the board. Whew. Later they told us that they use them as single rooms now. I cannot imagine two families being crammed in one of those rooms -- stir crazy for sure!

We met with a bunch of doctors throughout the afternoon, including her neurologist, who was the attending on duty throughout our stay. It's a teaching hospital, so there were more than the usual people popping in and out, pretty much all asking the same questions and all wanting to examine her. Six months ago she would have been screaming the entire time, but she did great. Smiled at everyone and let them manhandle her -- as long as they didn't mess with her hands too much.

Shortly before her bedtime, a nurse came in to put in her IV. They were going to start her on fluids at midnight (when she was no longer going to be allowed to eat or nurse due to sedation in the morning) and wanted to have it all set up ahead of time. Midnight comes and the night nurse hooks her up and starts the fluid. The thing beeps. Nurse comes back, messes with it, thinks it's fixed. Beeps again. Nurse comes back, fixes it. Beeps again. Nurse calls another nurse and they put in a new IV in her other hand, but leave the first one in, too, "just in case." New one works, but not a lot of sleep is had by anyone. I woke up every time E. made any sound, plus the sleeper sofa was not exactly meant for two adults, since you couldn't stretch your legs out if you were on the inside -- and if you were on the outside, they hung off the edge. And we're not super tall, so who are these made for??

Chapter Two: Tuesday
A woman from the lab came in at 7am to draw blood, then various other personnel started coming in to talk about what was going to happen today. I asked the chief resident (I think that's what she was -- maybe I'm just throwing around terms from Scrubs and Grey's Anatomy... ) about her congestion, and she said it was probably fine, but the anesthesiologist would tell us if it wasn't.

Elsie was scheduled for an MRA, which is like an MRI but with contrast dye, to see what the deal was with the spot in her brain that showed a flow issue during her MRI a couple of weeks ago. They wanted to have her lumbar puncture -- aka spinal tap -- while she was still sedated from the MRA, so they had to coordinate those two things. They said they go in order by age, so they were hoping she'd be near the top of the list. There was never an exact time for anything while we were there, other than starting the IV and checking her vitals, which drove me crazy. I'm sure it's hard to get things figured out when you're dealing with so many different departments and then kids on top of that.

They took out the first IV that didn't work, which I'm sure she appreciated. She may not have good motor skills, but having both hands taped to boards limits what you can do. She did seem to enjoy whacking stuff with the boards, though. Hee.

I think it was around ten that they finally came to get her. Ray went along; I stayed behind because it freaks me out when she's sedated. An hour or two later a geneticist came in to see her, saying that he'd been told she was back. Nope. He said he'd come back later and we never saw him again! We had talked to another member of his team the day before, so I guess that meant she'd found out everything he needed? Weird. Ray came back alone shortly after that, as they were taking her for the LP and he didn't want to see it. Despite being sedated, E. had moved several times during the MRA, including once when there were only eight seconds left, so it took longer than normal, since they had to keep starting over. The LP took about an hour, I think. Apparently everyone's spinal fluid drips at a different rate, and hers was slow. They also drew some more blood as long as she was sedated.

She was still out when she came back and slept for about three more hours! She woke up and played for a while, then ate a big dinner. I'm sure she was starving after not eating since the night before. A dermatologist came in to talk about her skin biopsy in the morning and we also were told that she was going to do the "B6 (Pyridoxine) Challenge", which sounds a lot more fun than it actually was. There are a small percentage of people whose seizures can be controlled by a large dose of B6, so they hook her up to the EEG stuff, monitor for an hour to establish what's "normal" for her, then give her the pyridoxine and monitor for a couple more hours. If it works, it would show up pretty much right away.

Chapter Three: Wednesday
The theme for Wednesday was definitely waiting. We didn't have to wait too long for the skin biopsy. The dermatologist had told us nine and they came about a half hour after that. The nurse had applied some topical cream to numb the area (on her back near her underarm), then they took what she described as a tiny cookie cutter the size of a pencil eraser to get the skin sample. They're going to do some tests to check cellular function, I think. It all starts to run together... E. cried a bit, but not nearly as much as when she gets a bath, so it mustn't have been too bad.

We thought the EEG was going to be in the morning, so we waited. And waited. Finally around 11 or so, the nurse practitioner from the EMU (epilepsy monitoring unit?) came in to talk to us about the challenge. She said they normally monitor it overnight, but that they were making an exception for us -- sounded like her neurologist threw his weight around a bit, bless him, to get us out of there that same day -- and it would be a 3-4 hour test. They had to discharge a kid, and when that was done, it would be E's turn. Ray went along again (I have dubbed him the procedure guy) to hook up her leads. She came back smelling of adhesive with her head wrapped and the cords in this little bag that you had to wear like a purse if you were holding her. We didn't order lunch, since we thought she'd be moving rooms soon. Not so. At one a nurse came in and said that the room was empty, they just needed to clean it and we'd be in within the hour. She said she's make sure the food found us if we moved before it got there, so we ordered lunch for E. and figured we'd get our own later. At this point I was really starting to worry, since my dad was watching O. and I knew he needed to be back home for a meeting at ten the next morning -- and it's a four hour drive if you don't stop at all.

Her neurologist came in, and told us that the tests they were able to do in house had been normal, other than that there were more white cells in her spinal fluid than normal, but that they weren't the infection-fighting kind, so he wasn't sure what to make of that. The MRA came back fine. The neurologist said that the abnormal flow on the MRI sometimes happens if the blood moves more or less quickly than "normal", but that it wasn't an issue. This rules out the possibility of there being something in there that would cause a brain aneurysm, which we didn't know we should even be potentially worried about, so that's good! He also said that the geneticists had only suggested one test that hadn't been already run by her neurologist up here, but that he would talk to them again. He seemed a little irritated that they didn't have more ideas, which I found kind of funny.

A bit before three o'clock, they finally came to get us. We moved to the EMU, which had nicer rooms, but with one big wall that was all glass, I guess so they can see the seizures better. They also had video cameras that recorded her at all times. I'm glad we didn't have to be in there the whole time. You have so little privacy the way it is in the hospital, even with normal walls! Ray went to get us lunch finally. The EMU nurse who came in asked me if it smelled like vomit (it didn’t, for the record), so I’m thinking that explains the extra wait.

After at least an hour and a half -- not the hour we were told -- they put in the B6. After an hour of that, they were going to give her a big dose of the new seizure medication we're trying, which was supposed to make her sleepy. They needed a urine sample and she peed out of the collecting bag twice, so the nurse was going to use a catheter once she was asleep. It was at least another hour and a half before they came in to give her the medication, which needed an hour to finish dripping through the IV. I was pretty much constantly on the verge of tears at this point, since we *had* to get home and it was getting later and later. Elsie was also completely out of patience, and wouldn't eat or nurse. She was obviously tired, so we thought that she'd go to sleep easily. No so. The medication didn't seem to make her sleepy at all! She was pretty much crying nonstop at this point, and the poor baby was awake for the catheter. They kept telling us that someone from the neuro team would be in soon to talk to us -- for hours we were told that.

Finally the neurologist overseeing the EEG came in and said that there was some kind of emergency that was keeping E's neuro from seeing us, but that he wanted to keep her overnight for more observation to see if the B6 was working. Honestly, I'm shocked that I didn't burst into tears right then, but I said that we couldn't because we had to get home to our son. Then he said, "Well, I think she had a seizure since we've given it to her, so then you don't need to stay anyway. I'll go double check." Um, WHAT?! Why would you try to make us stay overnight if we don't actually need to? She hadn't had a seizure that we had noticed, but he came back and said that there was a time when she had stared off and her brain activity had slowed, which to us appeared like she was maybe going to finally give in and go to sleep, but was apparently a type of seizure. She gets like that sometimes right before she has the kind where she tenses up, so maybe she's having them more often then we think. The nurse started getting the paperwork together and the technician came in to take the leads off (man, does the adhesive remover stink!). Our neurologist came in then and apologized for not being able to spend more time with us, they'd had a kid with blood on the brain. Eek. He told us to call Friday or Monday to follow up. We finally got out of there at 9 pm and got home at 10:45.

Epilogue
Now we're waiting some more, but at least we get to wait at home. ;) The tests she's had previously had ruled out the common causes, so most of the tests need to be sent out to various places and take weeks for the results. As the one intern put it, we're looking at the oddballs now. Ha!

Happy Halloween!

noreply@blogger.com (Sarah AJ) — Sat, 31 Oct 2009 23:27:00 +0000

Elsie rocking the monkey costume that O. wore when he was her age. She loves monkey noises! The best way to get her to smile for a picture is to yell "oooo-ah!", so it was fitting.

O. decided a couple of months ago that he wanted to be a knight and had very specific requests about the fabric and design, particularly the red dragon.

Ready for battle

Notes for the sewing-minded: O's costume is from McCall 5500, and the shield and dragon applique are modified from Ottobre 04/04. Between the fabrics, interfacing, and fusible web, I swear there were about a hundred pieces to cut. While I like how the shoulder armor turned out, I otherwise wouldn't recommend the McCall pattern. Among other things, it told you to sew the lining to the tunic in a way that made it physically impossible to turn right side out. Good times when you're scrambling to finish an overly complicated costume in the week leading up to Halloween. The pleather was also interesting to sew with. It is really shiny, so the refection of the light on the sewing machine made it kind of like trying to sew a disco ball. Ha. Elsie's monkey costume is from McCall 8938. I don't remember having any problems with it, but I barely remember yesterday, much less three Halloweens ago. ;)

In Loving Memory of My Mom

noreply@blogger.com (Sarah AJ) — Mon, 19 Oct 2009 17:57:00 +0000

babywearer :)

mother

granny

all-around fabulous person

1944-2009

Fox Cities Half Marathon Race Report

noreply@blogger.com (Sarah AJ) — Tue, 22 Sep 2009 14:44:00 +0000

After months of training, I ran my first half marathon (13.1 miles) on Sunday, part of the Fox Cities Festival of Races. I've read that you should have three goals for a race, one that you'd be satisfied with achieving, one that you'd be thrilled with, and a "dream" goal. Mine were to finish without walking -- not even through water stops, to come in under 2:40 and to finish under 2:30.

I didn't get off to a very good start. Due to a combination of my perpetual lateness and the "continuous" shuttles from the parking area at the finish to the starting line not being so continuous, I ended up with just enough time to check my bag and hop in the portapotty line. I was still waiting when they announced that it was three minutes to the start, but fortunately the past 4 1/2 years of motherhood have made me a quick pee-er. ;) I wanted to be near the back of the pack anyway, since I am slow and find it demoralizing to be passed by thousands of runners in the first mile, so it actually turned out fine. I didn't have time to wait around and get nervous -- or cold, since it was still pretty chilly out and I had taken off my jacket at gear check.

When the gun went off, I walked for a minute or two before actually getting to the start (hooray for chip timing!) and then tried to stick with my usual pace and not be influenced by the crowd to go out too fast. At the one mile marker I heard a guy near me say to his friend, "Oh good, only twelve more miles to go!" The friend said, "Twelve point ONE," which gave me a good giggle. I talked to them a little bit and found out they were aiming for a 12 minute/mile pace, too, so decided to run with them for a while. I was hoping they weren't going to be really chatty, since I don't like to talk a lot while running -- must run in the family -- but don't mind a sarcastic comment here or there as a bit of distraction. Plus I knew I probably wasn't going to be able to pull away from them if I was annoyed. HA! Fortunately, it was just the right amount of chatter. We ended up pretty steadily running 11:30 minute/miles, which I was hoping I'd be able to keep up past the halfway point. My long runs had been nearer 12:15-12:30, so I wasn't sure how it'd go.

Shortly after the three mile marker, we got passed by our first race walker, who was flying! I knew the faster walkers would pass me sometime, but I wasn't expecting it so soon, especially since their start was five minutes after ours! I think she was the eventual winner, since Ray said a woman was the first walker through, and the next several who passed me were all men.

One of the guys I was running with was going to his first ever Packer game and didn't think he'd finish in time, so he had prearranged to meet his ride at a gas station about 7.5 miles in, which I thought was pretty funny. The other guy said he hadn't trained well all summer, since he had a new puppy (to which I said, "Hey, I have two kids!"), so he started taking walking breaks at that point.

I was still feeling strong and able to keep up the pace we'd been running. At the ten mile marker, I looked at my watch and realized I had a pretty good shot at coming in around 2:30. I felt well hydrated and had eaten two energy gels by then, so I decided to skip the remaining aid stations and try to push it a bit the last 5K. With about two miles to go, I started hearing the crowd at the finish. The course did a u-turn at the very end, so I wasn't actually able to see the finish line until there was only about .3 to go. I picked it up a little more, saw Ray and the kids a hundred yards or so from the finish, and crossed the line with 2:30:02 on my watch. My official chip time was 2:29:59, so I just squeaked under my dream goal!

Overall, it was a fantastic experience, and I am looking forward to many more races in my future.

Drool.

noreply@blogger.com (Sarah AJ) — Fri, 11 Sep 2009 15:22:00 +0000

I seriously want one of these!

Of course, I'd have to sell my soul to afford one. Heh.

Owen's First Day of 4K!

noreply@blogger.com (Sarah AJ) — Wed, 02 Sep 2009 00:11:00 +0000

Today was Owen's first day of school! He has been alternating between being excited and saying he doesn't want to go, but mostly excited. Ray was able to take a few hours off this morning during freshman orientation so he could come along, too.

As many of you know, O. is currently not into having his picture taken, so this is the best face shot we got.

All of the 4K-ers lined up outside the building. The teacher told the parents that we were welcome to come in, but that we'd need to go in another door to check in at the office. Owen was quite upset and cried, "I don't want to go in alone!" Poor guy. :( The class's paraprofessional said we could go along in his door. Several other parents went in that way as well.

Can you believe Owen isn't even the only Owen in his class of 16 or so kids?! So much for my attempts to not have another "Sarah A." situation. Sigh.

Owen settled in pretty well once we got into the classroom, and we left a few minutes later. When E. and I went to pick him up, he said that it was fun, but that he didn't learn anything! He reports that they played on playground, drew pictures (he drew a giraffe), had a snack of graham crackers, played in the classroom and the teacher read from a "ginormous" book before having them line up in a train -- in which O. was the self-proclaimed crane car -- to go back outside to meet their parents. All in all, it was a good first day of school.

Since no major milestone is complete without something mama-made, O. and I went to the fabric store a few weeks ago to pick out fabric for his backpack. He chose this pirate map print and yellow piping. It is modified from the Made by Rae Toddler Backpack pattern. I enlarged it, changed the shape slightly, and added the front slip pocket and two side water bottle pockets.

18 Months!

noreply@blogger.com (Sarah AJ) — Tue, 18 Aug 2009 22:06:00 +0000

Elsie turned one and a half last week! In the last few months she's made huge improvements in the eating department, so much so that she's now 22 pounds, 3 ounces, which is the *twentieth* percentile and a gain of over 3 1/2 pounds since her 15 month checkup! She continues to be tall, at 32 3/4", the 82nd percentile.

Camping

noreply@blogger.com (Ray) — Tue, 28 Jul 2009 00:27:00 +0000

This last week we went camping at Hartman Creek State Park near Waupaca with some friends.

Owen eating S'mores (made from pricey vegetarian marshmallows) for the first time, and loving it.

Playing in the dirt was favorite activity for the children.

A "group" photo minus the two boys who did not want to participate.

Cumberland Visit

noreply@blogger.com (Ray) — Tue, 28 Jul 2009 00:22:00 +0000

We went back to Cumberland for a four day weekend and had a great time hanging out with our families.

Owen dressed up to play "work" with the cousins.

Elsie and Owen's first time at the Cumberland beach.

Elsie's 17 Months

noreply@blogger.com (Ray) — Tue, 28 Jul 2009 00:10:00 +0000

Elsie's 17 month picture.

Lego Digital Designer

noreply@blogger.com (Ray) — Sun, 12 Jul 2009 22:36:00 +0000

Today we discovered the Lego Digital Designer, a program you can download and build legos on your computer! Needless to say, Owen is very excited about it. Here is his first design.

July 7 Update

noreply@blogger.com (Ray) — Tue, 07 Jul 2009 18:16:00 +0000

We went to the Manitowoc Zoo last week and had a great time. Here are some pictures of the day.

"Oh Dad, stop being silly"

Owen thought drinking from a lion's mouth was pretty cool.

Elsie trying to eat her feet!

Owen's skyscraper.

Father's Day

noreply@blogger.com (Ray) — Mon, 22 Jun 2009 18:00:00 +0000

Fun at the Kustas'

noreply@blogger.com (Ray) — Mon, 22 Jun 2009 13:44:00 +0000

This last weekend we went to the annual get together at the Kustas'. A good time was had by all!

The highlight for the children was the sprinkler and water fights.

Elsie's 16 Month Checkup

noreply@blogger.com (Ray) — Mon, 22 Jun 2009 13:37:00 +0000

Elsie had her 16th month checkup and she gained 8oz in the last month and now weighs 19lbs.

Bellin Run

noreply@blogger.com (Ray) — Sat, 13 Jun 2009 15:27:00 +0000

Sarah and Owen ran in the Bellin Run this weekend. The kids run was Friday night and the 10k run was Saturday.

Owen and Sydnie had fun running together and held hands for the race.

May 23 Family Update

noreply@blogger.com (Ray) — Sat, 23 May 2009 13:31:00 +0000

"Playing is tiring work"

Owen playing with his rescue center.

Our cute pig-tailed girl.

"Reading is tiring work"

Elsie's 15 Month Check Up

noreply@blogger.com (Ray) — Sat, 23 May 2009 13:10:00 +0000

Elsie had her 15 month checkup this week. She is 32 1/4 inches tall which is in the 93rd percentile and is 18lb 8oz which is in the 2nd percentile. She doing better eating lately and has discovered her like of eggs.

Owen is 4!

noreply@blogger.com (Ray) — Thu, 07 May 2009 18:46:00 +0000

We celebrated O's fourth birthday on Sunday with family and a few friends.

"Count My Faces"

noreply@blogger.com (Ray) — Fri, 24 Apr 2009 22:54:00 +0000

Owen likes to play a new game called "Count My Faces" where he makes a lot of strange faces and poses and you have to count how many he can make. He says we should count to 100, but we rarely pass 20.

Here's "Blue Steel"

"Magnum"

It's a tiring job being a male model!