Medical Update

It’s been 2 years.  Can hardly believe it.  And at the same time, it blows my mind to think about how many more years (if it’s God’s will) that I will continue with this.  I’m in another round of screening tests to make sure that this dermatomyositis isn’t doing bad, bad things to me (yet?).  Had my full torso CT last Monday, and found out it was clear a few days later.  Need to schedule an ultrasound.  Going soon to have the field of vision test.  Got another order for a extra test at my regular blood draw. 

2011 has been a rough year for me health-wise.  At least at the beginning.  Dermatomyositis is a disease that you have to treat really aggressively; it’s very important to get it under control and keep it under control.  And if you hit it very hard with aggressive treatments, it’s possible to put it into remission.  In the spirit of hitting my disease aggressively, I started an expensive infusion treatment called IV immunoglobulin on January 31.  It was supposed to be four days of sitting and receiving an IV infusion of this medication over 3-5 hours a day.  It actually was a very relaxing (after the stress of getting to the hospital and finding out what was going on) experience.  I got to sit and work on the computer and surf the internet and talk on the phone.  But during the evening of the second day of treatment, I started getting a headache that just got worse all evening.  At bedtime, I took my narcotic migraine medication because I thought I’d need it to reduce the pain so I could sleep.  In the middle of the night (even on narcotic pain meds) I woke up in agony; Dan brought me more of the medicine.  By morning, Dan spent some hours trying to contact my doctors to get direction about what to do and eventually took me to the ER. 

A spinal tap confirmed meningitis.  This is a known, but rare, reaction to IVIG.  I spent the next few days in the hospital on pain meds.  Fortunately, IVIG causes aseptic meningitis, meaning there is no actual infection like normal meningitis (which can be bacterial or viral).  But there’s no way to actually prove you are not infectious, so I was in isolation (visitors had to wear masks).  The best way to tell is that aseptic meningitis only lasts 24-48 hours.  I went home suffering from a spinal headache, a result of the spinal tap, which kept me flat on my back for a week and a half. 

What happens if you have to step out of your life for 2 weeks? Chaos!  I got to watch a lot of tv, though.  More than I have watched in 15 years. 

The upshot is that I did get a benefit from the 2 days of IVIG that I completed.  My symptoms were almost gone for about 6 months even when I backed off a lot of the medications.  But overall, I wouldn’t go through meningitis again for anything, not even 6 months of good health. 

Loving my little boo

The perfect age.  All of childhood is a stage, and even this one has challenges, but I’m so enjoying 3 and a half.  Rose 3.7 is a cuddly momma’s girl (both a blessing and a challenge) who still speaks with a cute little girl voice and pronunciation uniqueness.  And she speaks whatever she is thinking.  She is potty trained.  (Yay!)  She just started ballet.  She is still fooled into thinking she’s playing a character on Super Mario Bros Wii if you just hand her a nunchuk. 

She loves to eat turkey shwamiches.  When she passes gas, she giggles and says, “I parted!” 

Quote from the car ride today:  “Mommy, tonight you have to show me how to braid my Barbie’s hair. Tomorrow I will be a big girl, and I will know how to braid her hair, but tonight I’m little, and I need you to show me how.”

Candyland is her absolute favorite game. She plays it whenever an adult will play with her.  She has great sportsmanship and is thrilled no matter who gets to the candy castle first because then that person has to invite everyone else to come to the party there.  “I’m going to win as fast as… a really fast person!”  The last time she and I played, she was also messing around with a tape measure.  She measured the side of the game board and said, "This is as long as a gorilla!"

She takes particular joy in telling or showing her sisters if she got something special that she thinks they didn't also get.  For instance, if we have one popsicle left and I let her eat it while the other girls are at school, the first thing that comes out of her mouth when we pick them up is, "Mommy let me eat the last popsicle!!!"  It never, never fails. 

I am going to be very sad to see this stage pass.  And glad.  I am so blessed.

Life

Absent for a month almost?  The first weekend it was because we had no power, and, hence, no internet.  120,000 of us had no power in our area after a short but vicious storm came through on Saturday night.  We’d gone to grandma and grandpa’s house to go to a world festival held in their town. We were eating a quick dinner when the storm blew through, making their electricity flicker.  And when we went down to the town square, it was to find all the tents from the festival being tossed in a dumpster and vendors trying to salvage what didn’t get blown away.  It was only after our 40 minute drive home that we got the sinking feeling as we saw no lights in our neighborhood and pulled up to a dark house. 

No power means no opening the garage door on our detached garage.  So, Spitz’ car was stuck in there.  Could be worse – we’ve had both cars stuck before.  The next day at lunch time Spitz’ dad brought over his generator, so our food only thawed for 18 hours or so.  Many of our neighbors had rolled out their generators immediately.  It’s very very common to own your own generator here as there have been like 4 major power outages in 5 years or so.  We’ve had one that was 6.5 days long.  Another that was like 4 or 5 days, and that one was during winter, so on day 2 when the house reached 50 degrees, we moved out to grandma and grandpa’s. This month's outage lasted about 2 days.

I got off track there, dreaming about the whole house backup generator I’d love to have (just like the one I saw being unloaded at a neighbor’s house on Monday morning).  The following weekend we went to my parents’ house in Ohio.  We try to visit them regularly so the kids will know everyone there well.  It was part of our deal when we moved here – a marriage compromise.  So, we were out of town that weekend, and Spitz was sick the whole time. 

Last weekend, we were busy celebrating May’s 10^th birthday.  She had her first slumber party, full of pizza and chicken wings and capture the flag and shrinky dinks and whispering after lights out.  It was a blast.  Oh, and the main activity was a movie they made.  More of a variety or talent show kind of thing, the giggles and the volume level got more and more out of control as it went on.  But now we are going to burn copies for each girl and mail it with their thank you notes.  I can totally imagine this getting posted to Facebook (or whatever there will be) in 20 years with lots of remembering and joking. 

I’m on a treadmill.  Every day has a schedule, and I move from event to activity, always watching the clock so I don’t miss the right time to leave for the next thing and planning what outfits, snacks, or hairbands will be needed for the afternoon.  School year activities are up and running and following the master plan on our kitchen wall, dutifully and regularly updated by me.  All under control.  But forgot to pencil in blogging.  (-:

Flat Tire - a guest post written by May 9.11

We were driving home from D.C. when all of a sudden we stop.  I asked why.  Mom said we had a flat tire.  We all got out of the car and Grandma took us up the hill to the shade.  She made us sit on blankets because we'd get chigger bites.  By the time she had finished her "chigger-bites-will-itch" speech, Rose was so scared of chiggers she was crying (also partly from the heat and humidity).  Finally, a tow truck got here.  Rose fell asleep.  Ruth asked for a fan to fan Rose.  By now, all the adults were talking to the tow truck guy.  Ruth started fanning her.  Grandma stormed up the hill screaming at Ruth not to wake her up (which had more chances of doing so).  Fortunately, the sound was muffled by the sound of cars.  The tow truck guy towed away our van.  Rose is still asleep.  The car was parked next to a dead deer (we didn't run over it, mind you.  This was a long-dead deer.). There is a fly on my notebook.  Ugh.  How long 'til the cab gets here?!?!  Mom said if I write this she will post it on her blog.  (she has a blog?!?)  Dad passed out books.  I say no thanks.  I want to write.  After I am done writing this, I will return to my story about Nita the elf.  How many minutes have passed?!?!?!?  Ugh.  I'm hot.  I reached over to shoo a cricket off the (still) sleeping Rose.  I picked some queen Anne's lace for mom.  There is now a cricket on my notebook.  100,000,000 cars passing and not one of them is the cab.  THE CAB IS HERE!!!!  HALLELUJAH!  It is blue.  I have never been so overjoyed to see a cab!!!  We are in the cab now.  Dad tells the driver where we want to go.  The cab driver is from Africa.  The air conditioning feels soooooooooo good.  I will probably not be able to finish my summer reading now that we're gonna be late.  Right now I don't care.  I think I'm gonna follow Rose's example.... (zzzzz)

[On our return trip, we blew a tire about 90 minutes from home on a major freeway.  The tow truck couldn't accommodate 7 of us, so we had to call a cab as well.  Fortunately, the tire was repairable and after about a 3 hour delay, we got back on the road again.  But it was quite an adventure overall - big POP, my cell was dead, very decayed deer body, wheel locks that we couldn't get off so we couldn't change the tire ourselves....  We do nothing half way!]

Notes from the Road

The grand trip has kicked off. The Grand Trip of Family Togetherness.  In other words, 7 of us all in our van together for 10 hours.  We met up for May's concert.  Then to kick off, we loaded our van with Grandma & Grandpa's stuff at the peak of low blood sugar.  And headed off to Panera. Though it was a challenge, I'm happy to say that those first five minutes with all of us in the van went okay. And then we'd fueled up with dinner so life could run smoothly at least until the first call of dying-of-thirst. (-: All in together. We fit without luggage rack bag. Going to get to our hotel about 11.

We left late in the day, after May 9.11 performed in a concert that was the end of her week of youth choir camp.  So we hadn't really gone far before we were approaching and passing bedtime.  Not surprisingly, the day had been hectic and exhausting, so Rose 3.7 was tired.  Spitz and Grandpa were singing to her.  They sing lots of folk songs and silly kids songs.  They started in on some classic about the hole in the bottom of the sea. You know, the one filled with a log that has on it a bump and then on the bump is a frog, with a wart....  Ruth 7.2 yelled, "reality check!"

Rose says, "I'm tired!" over and over in a completely unreasonable tone. Tell her to close her eyes and rest. She says, "I'm still tired." Grandpa and Spitz sing. She says, "I'm still tired." Keep singing. 10 pm and she's holding on due to a late afternoon nap. And Grandpa is still singing. And now the complaints of I'm tired are straight out yells. That's a good sign she will soon drop off. Goodnight, lovey.

Preparation to Leave

Last Friday (a week ago), we were preparing to head out of town for a last trip of the summer to Washington D.C.  The lack of wifi at our D.C. hotel kept me from keeping my weekly blog post goal last weekend, but I wrote posts offline.  So, here we will catch up and also have my first guest blog - an event written up by May 9.11.

On our last afternoon before leaving (we left home in the evening), we were packing and preparing.  Spitz gave Rose 3.7 a snack of yogurt when she moaned that she was hungry.  She's always, always hungry.  When she ate only half of it, Spitz asked if she was done.  She said, "I'm going to save it for tomorrow."  "But we won't be here tomorrow," answered Spitz.  She responded, "Then I'm going to save it for yesterday."

Best and Worst Moments of the Week

• Detected a wireless network with my ipod touch named "Stay off my network" - wish I'd noticed whether it was secured or not before we drove on.
• Ruth 7.2 caught a crawfish.
• Learned that if you hold a 3-year-old dangling in mid-air and aim her feet wide and to the sky, she can pee in a very nice arc just like a little boy into the weeds while out on a hike.
• Got the news that my 14-year-old, tortoiseshell kitty cat has the beginning stages of renal failure.
• Grilled a zucchini grown in our very own back yard and tossed it with basil, home-grown tomatoes, chicken and pasta.  Mmmmm.
• Ate many more s'mores (cooked by my girls) than I should have
• Sat on I-71S.  Like sat.  In park.
• Got a clean bill of health on Rose 3.6's teeth from the dentist.
• Had two days without our girls and went out to 2 lovely restaurants, enjoyed Homerama and a movie just us adults.  Missed our sweeties.
• Saw the joy light the face of Rose 3.6 when she woke up from her nap long enough to recognize me after two days away and exclaimed happily, "Mommy!" and then went back to sleep for another 2 hours.

Marshmallow in her hair

I’ve had a first happen to me last night.  My children came to me and asked, “Can we please take a shower? We’re dirty!”  And it was so true.  May 9.10 even had marshmallow in her hair.  They came by that dirt very honestly.  We’re visiting a state park in Ohio with a multitude of relatives.  Grandma and Grandpa have their camper and so do aunts, uncles, cousins.  There are a few tents, including the one we brought just as a play tent for the kids to use (that they are loving!).

And kids… many, lots of, tons of, swarms of kids! It’s really awesome to have so many.  My family has reached a stage where most of my cousins have little ones.  There are a few in the ballpark of 10 years old and there are dozens that are more like 2-6.  We are situated in a piece of the campgrounds where 2 roads form a T and we have one corner below the T and part of the area above it.  A trio of campers forms and open area and fire pit surrounded by tents, a hammock, picnic tables and woods that sort of hems in the little ones, but there are constant dashes to grab the toddler from crossing the road, which thankfully isn’t too busy.  And all the cars know the whole campgrounds (not just us) is swarmed with kids.  The compound we form has several picnic tables, corn hole thingies (what to call those?), lawn chairs, big wheels, squirt guns, etc.  And this is an annual ritual that we’ve enjoyed for several years with our children.

So, they earned the dirt by throwing water balloons, running around the playground just up the  street whose main attraction is a merry-go-round that some kids sit (and hold on for dear life) and other kids run around pushing and then make mad jumps to board.  For the second evening in a row, the fire was used to roast marshmallows for s’mores (hence the marshmallow in the hair thing). 

When I was a child, this same side of my family always went to a state park for a week each summer and rented cabins.  We’d have a whole cul-de-sac of cabins that were all my relatives and we’d get together nightly in the center after each long day of swimming, playing cards, riding bikes…. I have fabulous memories of those trips.  I remember big family pot lucks at the end of each week to finish off all the odds and ends of food that each family had left before we’d pull out and head for home on Saturday morning.  I remember bicycle races.  I remember euchre tournaments until very, very past bedtime.  There were trips into town to find the local ice cream place – trips where we rode to the shop in the back of a pickup truck, freezing because we’d all hopped straight out of a pool to go.  It was our favorite time each year.

So, even though this isn’t exactly the same (the cabins which were pretty rough back then have been modernized to have a/c, phones, luxuries that now make them more expensive than my extended family can afford, so we’ve switched to the campgrounds), my heart thrills to think that my children will have some of the same memories that I have.  And their memories will also include a nightly shower in the camp bathhouse to make them at least somewhat suitable to meet the sheets on the beds in grandma’s camper!

Will it stick?

Someone told me this week that they miss my blogging. Wow, haven't done that in a while. I enjoy it, but it seems to get dropped to the wayside just when there is so much that I could be writing about! I'm pondering setting a goal to blog once per week. But if I set a goal and flop, that would be more disappointing.

Why is life so full? I really think that if it starts to slow down, I unconsciously find stuff to fill it. I've got 2 part time jobs now, both paid, thankfully. I enjoy them both, but feel like sometime soon I'm going to have to choose one or the other since they both could evolve into full time jobs. And I definitely can't hold 2 of those! (You know, on top of the full time job of 3 daughters!)

So, here's just a snapshot of a few of the things I've been doing and some of my daughters' snippets.

May 9.10 and I finished a 4 week class on cake decorating. That can seriously wear you out. I've made more icing and cakes in the last month than I had in several years before. There were some cool things. I really like making leaves and very simple flowers. The shell border was simple, yet makes a cake look so much more polished. Love the new cake turntable I got that lets the cake spin as you decorate. But it led to my big Ooops for the week. I was washing the little metal decorating tips on Wednesday afternoon and accidentally dropped one in the sink. Didn't realize it until the disposal ran and crunched it and got stuck with it over one of the metal bladey things (technical term (-;). Spitz and some pliers and flashlights came to my rescue and got it out without a visit from the plumber!

This is my cake from the final session. No real planning went into this. Just random flowers we worked on that night. But I definitely prefer the taste of the chocolate buttercream to the regular. Of course, none of the buttercream icing we were using in this class actually had butter. I'm going to have to play with icing recipes and see if I can decorate with something that has real butter. I'd much rather have taste than perfectly hardened little flowers!

Rose 3.6 said earlier this week (riding along in the car), "Mommy, when I cover my ears, can you still hear the music?"

Ruth 7.1 went off to church camp most of this week with grandma. So, for about 4 days we had only 2 girls. The change is really amazing. So much simpler to have 2 - not outnumbered, lower volume, etc. We like to read at bedtime, and we could actually break out, one of us with each. Smoother evening all around. Of course, it's more than just nice to have her back.

Okay, heading out to get bedtime snacks. Let's see if this once a week thing sticks.

I've walked into a picture.

You know you've seen it, too. At least one oil painting or scenic picture of rows of boats with sails across water or lined up at docks on beautiful water with sunsets in the background. Or maybe they were next to a large beach house with a wooden dinghy on shore.
We got to Nantucket on Saturday late afternoon after traveling by plane and car and ferry all day. And it is so beautiful, just as awesome as the photos. I actually said to Spitz, "I can't believe I'm actually seeing this. We're really here."

Yes, he's a doctor, but I don't think we are quite in the social category of the normal visitor. My sister and I got to wander the shops for a bit today. The first one had camisoles that were $95 and gorgeous nighties for only $270. Sticker shock. And everything is like that. We saw very cute sundresses for my 2-year-old that were only $65. Not going to happen. It's nice to window shop, but we'll be heading to the wharf for the Nantucket t-shirts and hoodies for our souvenirs!

So, it's nice to have the chance to come here once (courtesy of a donation of a week's stay in a fabulous historic home that we then purchased at a charity auction for a small portion of its normal rental).

Cranberry Orange Scones

I've never made scones before. It was a fun adventure because the recipe was simple so Rose 1.10 was able to add all the ingredients except the eggs (I just am not quite that brave!). They turned out yummy. And the girls didn't care all that much for them so there were more for me!

I like them enough that I am going to make them for Thanksgiving Day breakfast while we are at my mom's and give her a break from cooking that morning. Well, a break from breakfast anyway. (-:

Cranberry Orange Scones

2 c flour
10 t. sugar (divided)
1 T grated orange peel
2 t. baking powder
1/2 t. salt
1/4 t. baking soda
1/3 c cold butter
1 c dried cranberries
1/4 c orange juice
1/4 c half-and-half cream
1 egg
1 T milk

Glaze: 1/2 c confectioner's sugar
1 T orange juice


Combine flour, 7 t. sugar, orange peel, baking powder, salt and baking soda. Cut in butter until resembles coarse crumbs.
In another bowl, combine cranberries, orange juice, cream and egg. Add to flour mixture and stir until soft dough forms.
On floured surface, gently knead 6-8 times. Pat into an 8-in circle. Cut into 10 wedges. Place on ungreased cookie sheet. Brush with milk. Sprinkle with remaining sugar.
Bake at 400 for 12-15 minutes or until lightly browned. Drizzle with glaze.


Oh, and I'm taking pity on the girls who didn't like them and will also be making cinnamon muffins that morning, too.

Family Manager

That's the perfect description! I've been struggling forever with using the description Stay-at-home-mom because it's just not accurate. I have had a part time job for years, albeit a volunteer one. But if you aren't paid for a job, it feels wrong to claim it. So, I wasn't a SahM, but I wasn't really employed either.

And now I'm definitely employed at Spitz' office (they give me paychecks!), but the hours are so sporadic, it still feels odd to say I'm an employee there. But I can't really claim SahM status anymore for sure. So, I'm in limbo.

But then, came across the label Family Manager. That is my primary purpose in life. Doesn't matter that I also put in some hours here and there at partial employment/volunteerism. Family Manager is a very appropriate title.