Sunday, February 28, 2010

Round One

The almost-eight-year-old (don't push it... I still can't believe she's going to be THAT OLD!) spent the weekend celebrating her almost-birthday, first with one side of the family, and then with another. Two grandmas honored Amanda's requests for birthday meals, which included plenty of red meat and virtually no vegetables. We still have a few days to go before Amanda's real birthday, but already there have been gifts galore to please the princess, including: books, books, books; piles of art supplies; sparkly t-shirts; and a couple new games that kept the DS a-glowin' after lights out. How will we top this on March 3?

Friday, February 26, 2010

Real Characters

If you spend any time around educational institutions, you're probably aware February is known as "I Love to Read" Month. The girls have had various reading-related activities at school, and today was the highlight: a chance to dress up as their favorite literary characters. Well, this is huge for my little bookworms. There was a lot of talk, plenty of rationalizing, considerable mind-changing... Who to be? What to wear? Where's the book so I can bring that to school, too?

For a while, Amanda was going to be Nancy Drew. Elisabeth went from the pig in "If You Give a Pig a Pancake" to the moose in "If You Give a Moose a Muffin." Finally, it was Amanda who settled on the mouse from "If You Give a Mouse a Cookie," and Libby-- no surprise here-- went as "Fancy Nancy." They do not have a creative/artistic mother, but I did help with costumes the best I could.

Happy reading!

Developments

*Todd's stepmother, Carol, has had some complications following mitral valve replacement surgery. Doctors were concerned about her heart rate, and ended up taking her back into surgery this afternoon to implant a pacemaker. Carol remains hospitalized, but looked good when we saw her this evening. Please keep her in your prayers.

*Madeline has taken this crawling thing to the extreme. In the four days since I officially declared her a "crawler," she has opened the whole bag of tricks. Maddy crawls so quickly now I lose her. She has already attempted a header down the stairs, but, luckily, Dad was there to catch her. Maddy has learned to pull herself into a standing position, and repeatedly tried that stunt on her auntie this morning, in the crib, while she was supposed to be going down for a nap. She will also stand, hold onto one of those wheeled push toys and take a few steps. In addition to all this full-body movement, Madeline keeps me busy by trying to chew on cords and stick her fingers into electrical sockets.

*AMANDA FINALLY HAS A LOOSE TOOTH!

Thursday, February 25, 2010

Perspective

After this morning's rant flew off my fingertips, I spent a little time reading other blogs (a.k.a. avoiding stress and work to be done by pretending it didn't exist.) One of my favorite bloggers had posted about a somewhat spiritual enounter she and her children had in the market. Immediately, I thought of my last trip to the grocery store, something I meant to write about last week, but never got around to it:

It was just me and Madeline, because Benjamin was off having super-secret boy time with Grandpa. My back was turned to the shelves when a woman approached. "Your baby is so beautiful," she commented. And she is. And she was. Maddy was sitting happily in the cart, grinning at everyone and drooling on everything. "Thank you," I beamed. "She reminds me of my granddaughter," the woman continued. "We just lost her to cancer. She was two years old."

It never ceases to amaze me how God, in his Heaven but all around us, knows when He needs to smack me upside the head.

House of Cards

Most days, I think I pretty much have things together. I'm not the most organized person in the world, but I also don't think people mutter behind my back, "Oh, she's a wreck." (If you do, please don't tell me.) I mean, I shower daily, we never run out of clean underwear, the kids get three meals, and usually I can go to bed believing the crap that really needed to get done, well, it got done.

But, today, oh, the house of cards came a-tumblin' down. Elisabeth woke up 15 minutes before the bus came, but really wanted to make the bus, but wouldn't eat breakfast or brush her hair or brush her teeth, and started complaining her foot hurt on the way out the door. I also got a kind note from my MIL gently pointing out a discrepancy on the family calendar-- I have planned for us to be out of town the same day we always celebrate Easter with her. Then, I got a phone call from a friend informing me the kindergarten teacher was having her baby TODAY (instead of three weeks from now) which kind of puts a wrench in plans for the baby shower I'm throwing on Saturday. I'm trying to figure out how to juggle piano lessons and still get the kids to the hospital to see my other MIL, who had heart surgery on Tuesday-- and is doing well from what I know, by the way. While all this is going on, I'm still stewing and awaiting a call from the geneticist's office regarding the difference of opinion on whether the other children need to be seen. AND, Ben whined more than usual-- "Don't go, Mommy!"-- when I dropped him off at preschool.

When I was a kid, we had a hamster as a pet. I don't ever remember it running on one of those wheels... it mostly just escaped and hid in the dryer hose... but that's what I feel like right now (like I'm running on the hamster wheel, not hiding in the dryer-- although that's not a bad idea.) I know I'm not the only one who has days like this. Is it OK to medicate with a 44-ounce Diet Dew?

Wednesday, February 24, 2010

You Have a Voice

I've always been outspoken. Can't say it's always served me well... can't say I'm likely to change any time soon. Certainly, there are times when I need to keep my mouth shut. The older I get, I occasionally do just that-- not as often as I should, but I try. But there are many other times when saying something is productive, sometimes really important.

Regarding my oldest daughter, church and school, something was bugging me. It wasn't an earth-shattering, life-changing thing. But, it was a situation where change should happen, not just for her but for a whole group of children her age. It just made sense. And, so, I spoke up. Speaking out did not make me more popular. But I did notice for every time I said something to those in charge, a half-dozen other parents grumbled to themselves-- and that did nothing. Today, change happened... it just makes sense.

There was another instance this afternoon, where Ben's genetic counselor called with a report from his geneticist (who has been on vacation these past couple weeks.) The geneticist was suggesting heart tests and doctor visits for all our other children. Last week, the cardiologist said no such action was necessary. I could have just rolled over to the most recent order, or I could have taken both doctors' differing opinions and discussed them with my husband to develop our own plan. But I decided to ask the counselor to take the question back to the doctors, to request a meeting of the minds so they could be on the same page in regard to their patient, my son, and our entire family.

As I hope you know about me by now, I am not tooting my own horn. I don't always think I'm right. And I don't really care whether you agree with me on these points. I do, however, want to remind you that you do have a voice. And, when you DON'T speak up, well you have to bear the responsibility for that, too.

Tuesday, February 23, 2010

The Great Motivator

Money, money, money! I'm not sure I should readily admit this, but Todd and the two older girls got Madeline to crawl all the way across the room by lining up dollar bills, which she scrambled to pick up. But, when I tried to recreate the scene on video, there were some complications. This is "Take 14," and about as good as it got:

Monday, February 22, 2010

Creepy


Madeline is 10 months old today-- double-digits, wow! At this juncture, I do feel comfortable declaring she is CRAWLING! Madeline has been moving for more than a month: she would sit in one place, lay down, roll over, and sit up in an entirely new space. Then, she started moving more purposely in one direction, kind of a combination scoot-belly-creep-crawl, but it was all backwards. About a week ago, I started seeing her do some veritable hands-and-knees travel in a forward position, but, since Daddy didn't see it with his own eyes, he didn't believe me.

Over the weekend, short stints of forward crawling were witnessed by Daddy, as well as grandparents and others. So, Madeline is 10 months old and crawling. Our baby is getting so big!

Saturday, February 20, 2010

From the Confessional

Amanda made her First Reconciliation, also called confession or penance, today. For the non-Catholic among us, this is a chance to confess your sins to God, through prayer and a conversation with a priest, and to be absolved of them and receive the grace of the Holy Spirit. It is done at this time in preparation for First Communion, which Amanda will receive in the spring.

The first-born was all in a snit about this. Since she attends a parochial school, it was discussed in great detail there, as well as at home. Amanda was so anxious, it led to some tears and some tummy aches. I just kept reassuring her it was not a big deal and she would be relieved once she actually went through it-- she just had to trust me.

After her basketball game this morning, we changed clothes and brushed hair and headed to the church, where she joined her fellow second graders. They twittered nervously and eventually settled down as the priest led the group in prayer. Then, the kids lined up and took their turns. Amanda waited in the pew for a while, working up courage... but then purposely headed to the room where our parish priest was stationed. (A priest from a neighboring church was also helping out.)

She emerged with a huge smile on her face, walked back to the pew, and prayed quietly for a couple minutes. On the way out of church, Amanda told me, "You were right, Mom. It was so easy. I feel great!" I told her it was a wonderful thing, that at that moment, she was just as pure as when she was baptized. I challenged her to try her best to be good, and to see how long she could go before sinning again. (Typically, I don't make it all the way out of the church building.) Amanda admitted, "It probably won't be long, Mom. You know Libby is at home."

Then, Amanda did the sweetest thing. She took my hand and said, "Mom, it's good to know a priest. It's really good to know a priest." Now, Amanda is friendly with EVERYONE, including my parents' priest and my in-laws' pastor. But, since the girls attend the church school, they do have more of a relationship with our pastor. He is a young man, very approachable, very kind. When I was a kid, our parish priest was 150 years old, 10 feet tall, 400 pounds and gave half-hour sermons on tithing and how he took only a $1 annual salary from the church. I was equally terrified and bored with him. I'm really glad it's different for my kids-- and that Amanda had a great experience this morning.

Friday, February 19, 2010

Say, "Cheese!"


I went to Wal-Mart and saw they had 8-ounce packages of shredded cheese for $1, so I stocked up. Then, my mom emailed me and told me Cub Foods had 8-ounce packages of shredded cheese and block cheese for $1, so I stocked up. MY FRIDGE IS FULL OF CHEESE! I hope next week brings a sale on fiber supplements.

Don't Miss It

Last night, I held my six-year-old in my arms until she fell asleep. Why? Because she asked. It had been a busy day, and after piano lessons, supper, and after-supper clean-up, what little time was left of the evening I spent bathing Elisabeth's younger brother and sister and helping her older sister with her homework. As I tucked the girls into bed, Libby whined, "I wish someone could lay down and cuddle with me." So, I did. I let the laundry tumble a little longer in the dryer. I figured Daddy and the baby could keep watching the Olympics. I laid down in the narrow, hard, hand-me-down bed and gathered my daughter into the crook of my arm. I rested my chin on top of her head and stroked her hair. Libby hugged me back, tightly, only her soft but scraggly blankie between us. Soon, she was snoring.

This might surprise you, but I am actually not the touchy-feely, huggy-kissy, lovey-dovey type. I know I seem all teddy-bears-and-roses, but I struggle to physically show affection. I don't know why. I've always been this way. I know my parents love me. My kids know I love them. But, while I recognize their needs and act on them when it comes to spiritual, intellectual and social growth, I wrestle with the emotional stuff. I'm more likely to issue a quick peck to a boo-boo and declare, "There, all better now. Go and play."

On a cerebral level, I see how needy children are for physical affection. (Well, husbands, too... but that's another story.) Even though I became a parent at the moment of conception and realized it at the moment of birth, I am still learning how to recognize what my kids need and training myself to deliver. I had an epiphany one day a while back and challenged myself: Whenever one of my kids came to me for a hug, for any reason, I would not let go first. I vowed to hold that child for as long as he or she needed. Let me tell you, a kid can cling for a really long time. But, when I give into it, I get back as much or more than they do.

Sure, I cuddle with my baby. I breastfeed, so it's built-in. And I look at her and think longingly that soon she will not be so interested in being held. And, when Madeline or Benjamin-- or even Elisabeth or Amanda-- cries in the night, I get up and go to that child. Yes, they need to learn to comfort themselves, and yes, they need to learn good sleep habits, but, in those moments, I believe they need Mommy more.

Even though some days and many nights feel endless, this is such a short time. Childhood passes in a flash. I sometimes have to remind my husband what I remind myself, what I am reminding you right now: Don't miss it.

Thursday, February 18, 2010

Cute

Here are some cute bits and pieces I've been meaning to jot down:

Amanda was remembering a long-ago visit to the ocean. Since she was just a toddler on that trip, we are always a bit skeptical about her "memories." She was describing a man she saw wading out into the ocean and said, "The waves just departed away from him in both directions." Elisabeth interrupted, "That did not happen, Amanda. You did NOT see that-- that man was MOSES!"

Benjamin was trying to tell me something, but it was taking a really, really long time. To tease him, I started snoring loudly. Ben yelled back, "Hey, Mom, you're ruining my lines!"

While putting Ben to bed, I asked him what was his favorite part of the day. He turned to me with a gleam in his eye and said, "WHIPPING Grandma at cards two times!"

I really wish I had it on video when Benjamin loudly recited this nursery rhyme:
"Baa, baa black sheep, do you have any wool?
Yes, sir, yes, sir, three bags full.
One for my master, one for the game,
And one for the little boy who lives down the drain!"


The Many Faces of Madeline:

Wednesday, February 17, 2010

Rays of Sunshine

A friend this morning was talking about having a hard day, a hard week, a hard month... and, then, something nice happened and it was like "a ray of sunshine shining through the clouds." I found it ironic she was saying that on such a sunny, beautiful day, a day when I awoke with a really bright outlook on life. Recent days have been dark for me, full of uncertainty and fear. But, inexplicably, today, the clouds lifted.

Then came my rays of sunshine. The genetic counselor called, way ahead of schedule, with the results of Benjamin's blood test and confirmed he does NOT have Loeys-Dietz Syndrome. Now, this does not mean the characteristics the geneticist saw do not exist. It also does not mean that he doesn't have some other related (or unrelated) syndrome or condition. But it also doesn't mean he DOES.

This afternoon, we saw Ben's new pediatric cardiologist to discuss his heart irregularities. Here, too, the sun shone. The most traumatic part of the visit was helping Ben to remove the electrodes from his chest following the EKG-- they were really sticky.

The doctor confirmed and explained what is "different" about Ben's heart. However, especially with the knowledge of the negative blood work, she did not feel compelled to action. She said we will wait and watch-- the two things I am worst at-- and recheck Ben's aortic root and aortic valve in one year. If things continue to progress at a rate consistent with his growth, it will just be something to watch for the future. On the chance that another connective tissue disorder is diagnosed, we will revisit the issue and talk about medication, which the doctor said can be a very promising treatment.

At this point, there is no pressing need to schedule heart tests for the girls. We will talk with the geneticist, probably next week, to discuss what she thinks of the results, and whether she suggests more tests. Then, we will have to decide whether to follow her suggestions. As for Benjamin and our other children, they know NOTHING of any of this, nor will they-- unless and until they need to know.

One thing I vowed today was to be more sensitive to my son's feelings. We have been seeing various specialists on Benjamin's behalf since he was an infant, and have somewhat accepted that it is a part of his unique lifestyle and that he is too young to know any differently or to care. However, I was answering the cardiologist's questions this afternoon while Ben played across the room. Suddenly, he came at me and hit me in the mouth with a box of raisins. Now, my child is no angel, but he also is generally not violent or mean. I reprimanded Ben and we apologized to the doctor and went on with the visit. But, later, Todd pointed out to me that when Ben hit me, I had been describing how he can't run as quickly as other boys. That was a MAJOR Mommy screw-up and I will not make a habit of it.

This brings me to another point: the fact that I posted about these recent medical developments at all. As I have previously explained, I do this because the blog is my form of therapy and because I believe in the healing grace of prayers and support from others. Now, you could say I "got you all whipped up for nothing." Or, you could say you all took in the information I gave out and turned it into prayer and the prayers worked.

I remember when a friend told me she was expecting her first child. This was when I was childless and ignorant, and, knowing she was only a few weeks along, I asked, "Aren't you worried about telling people too early? I mean, what if something happens to the baby and everyone already knows?" My friend replied, "I thought about that, but then I decided I would need your support either way." I think of those sage words when deciding what and when to share... and then I share.

More recently, I was sitting in a small group when we were praying for an expectant mother who had just learned her baby was very sick and was not expected to survive. We began to pray for peace and comfort for the mother, for the suffering to be limited, and for God's will do be done in a way that would bring the least amount of pain to the family. Suddenly, one woman thumped her hands on the table and scolded the group, "Wait a minute! We are forgetting something really important! MIRACLES HAPPEN! WITH GOD, ALL THINGS ARE POSSIBLE!" I immediately felt ashamed that I had been selling short the power of prayer, the power of the Lord.

I hear that woman's words in my head every day of my life. I also think about Angie Smith. She's another mother, another blogger-- much more eloquent and much more spiritual than I am. She has also endured such pain and shared it with others. You can read her story from the beginning at Bring the Rain. Angie went for an ultrasound and was told her daughter had a number of "lethal conditions" and would not be expected to live outside the womb. After a long, long examination, the doctor asked Angie what she was thinking, and that amazing mother replied, "I think that my Jesus is the same as He was before I walked into this room."

With Benjamin, we have had many scary doctor visits, many sleepless nights, many opportunities to either ignore or embrace the presence of God. I would never, ever liken our experiences with Ben to those of a family that has had a seriously or terminally ill child. But I do recognize we are all on the same journey, traveling a path that is pre-laid by the Lord, and we are moving forward in faith.

I thank you for your neverending support and prayers. I do not plan to continue blogging about Benjamin's medical questions on a regular basis. Should a future need arise, I will consider creating a separate site for you, the compassionate and the curious. But, Krinkeland is the story of our family's life-- and this does not define us.

Tuesday, February 16, 2010

Shrinkage

I finally saw an orthopedic specialist about my wrist. Around the time Madeline was born, I started noticing my left wrist was sore. It especially bothered me when I had been holding the baby for a while, so I suspected some kind of carpal tunnel/repetitive stress injury or that I was just out of practice and out of shape (even my wrist!) Over time, however, the aching grew in frequency and in intensity and a significant bump formed on the back of my hand.

It bothered me, but was not agonizing, and with all the changes our family has had in health care coverage in recent months, my wrist was not my top concern. Then, one night while lying in bed, having some of our famous "pillow talk," Todd asked, "What if you have some kind of rare 'wrist cancer?'" So, I made the appointment, and today I went in.

As was most likely the case, it is a pesky ganglion cyst. Totally common, totally not a big deal-- except for the pain. I was given three choices: to let it be and maybe it will go away (unlikely since it's been so long;) to have it drained, with a 75-80% recurrence rate; or to have it surgically removed, with an 8-10% recurrence rate. I chose to have it drained... and will follow up with surgery if/when it again becomes a problem.

I spent the first part of the clinic visit laughing at myself. Instead of weighing me and measuring my height, the nurse just asked me for the numbers. It is pretty typical to have the nurse ask all kinds of questions, about things like tobacco exposure and language barriers. During that time, I always think about something my nurse friends tell me: When it comes to the question about alcohol consumption, the nurse always takes the patient's answer and doubles it. So, today, I thought about my weight-- and I told the truth. I didn't want her doubling THAT!

Then, I thought about my height. All of my adult life, I have always said I was 5' 7", knowing full well I was actually 5' 6 3/4"... but rounding up to make sure I was NOT SHORTER than my LITTLE sister. Last fall, I saw an allergy/asthma specialist and the nurse there measured me at 5' 5 1/2"! I stood up straight and demanded she measure me again and we got above 5' 6". Still, it was a close call.

The real bummer is not in the numbers themselves, but in the way I am proportioned. I am all body with short, stumpy legs. I can wear my mom's pants-- even though I'm half-a-head taller than she is. My short friend, Heidi, and I can stand hip-to-hip. It looks right on her, because her legs are in line with her body. Not so with me. My sister got all the leg length, and that makes her the lucky one. I mean, when have you ever heard a man admire, "Look at the torso on that one!"

Long body, lumpy wrist... It's a good thing I'm already married, because that's not a good start to a personal ad.

Monday, February 15, 2010

The Girl Is a Spectacle

Elisabeth came out of the womb a fashion statement. As soon as she could express an opinion, she began doing it through her wardrobe. She wears things that make me shake my head... and sometimes make me cringe. Like the time I walked behind her into church-- Libby in a sequined, denim mini skirt over red, zippered leggings, with a pink, faux-leopard jacket and sparkly mary janes, swinging a white, faux-patent handbag and looking, by all accounts, like a streetwalker.

But, I fought it for years, me of the jeans, ponytail, and no un-made-up face, and then I gave up. That girl is an original. And now I embrace it.

Libby's latest fashion accessory is: GLASSES. Yes, eyeglasses. After a particularly grueling Saturday afternoon spent cleaning out the girls' closets, I promised a "treat." They chose a trip to Claire's, headquarters for all things girly and costume-y. I quickly guided Amanda and Elisabeth to the dollar racks and told them they could each select two things.

It took Amanda about 15 seconds to pick out a tiny stuffed dog and a sparkly necklace with an "A" charm on it. Then, she was off to examine the rest of the garish and overpriced junk. Libby looked... and looked... and looked... and, as is always the case with Libby, she just couldn't decide. She changed her mind a dozen times. Finally, after 20 minutes under flourescent lights surrounded by giggling, texting tweens, I had had it. "It's time to choose, Libby Love," I said.

She chose black-rimmed reading glasses (which I think have a slight magnification in them, so I do limit the wear time) and a handled, hinged case for them. She has spent the following days and weeks "fooling" her dad, her cousins, and her classmates into believing she actually does wear glasses. I at least feel somewhat reassured that should the need for real glasses ever arise, hopefully we won't have an all-out meltdown. For now, it's a look, I tell you.

Sunday, February 14, 2010

Loves of My Life

I'd ask you to be my valentine, but I already have plenty:

Of course, the mister got me flowers... he knows what's good for him... but this wasn't a last-minute drop-in to our friendly, neighborhood florist. Rather, he clearly had a special order: the same kind of lilies I carried in my wedding bouquet, arranged among three pink roses and one blue. Love is in the air.

Friday, February 12, 2010

My Olympic Girl

It's time for the 2010 Winter Olympics in Vancouver. The Olympics have become a nostalgic time for me, especially the Winter Games. I know people complain about them-- that they're not as flashy or as interesting as the Summer Games-- but I beg to differ. And that's a lot coming from someone who doesn't even like snow. I know, I live in a part of the world that is covered in snow for nearly half the year... but I've never liked it. I hate to be cold. Give me the beach any day. (For the record, I have that in my backyard, too. I am so spoiled.)

In 2002, my first child was due in late February/early March. Since I was working in television news, those final days of my pregnancy were deeply entrenched in Olympic coverage. Our station's Olympic crew sent back memorabilia as baby gifts. So, now, I associate the Games with Amanda. And that makes me happy.

I actually have fond offspring-related memories associated with the Summer Olympics, too. It was during Michael Phelps' record-setting eighth gold medal race that I took the pregnancy test and found out I was expecting Madeline. I don't know why I felt compelled to take the test right at that moment. Pregnant women are crazy... even when they don't know they're with child.

Let the Games begin!

Thursday, February 11, 2010

The Book of My Life


I swear I have never met Anna Dewdney, and, yet, she has written my life story... in the form of a picture book... about a llama... who acts up for his mother... while shopping in a discount mega-store.

We got "Llama Llama Mad at Mama" from the book order, and Benjamin and I sat down to read it before nap time this afternoon. It is the cutest thing ever-- on a routine shopping errand, the little llama goes from pouting to all-out tantrum. I know that doesn't sound cute (and, having lived it on a regular basis, I know it is NOT actually cute) but, this is so well written and illustrated, I couldn't help but smile as I read it.

And I smiled even more when my son commented all along the way, "That's really naughty. He shouldn't be bad. I would never do that." Yeah, right, my little llama. I can hear him now: "It's no fun at Shop-O-Rama./Llama Llama/MAD at Mama!"

Wednesday, February 10, 2010

I *Heart* This Boy


This month is American Heart Month. This week is Congenital Heart Defect Awareness Week. Today our son was diagnosed with two heart conditions: a bicuspid aortic valve and a dilated aortic root. We don't yet know what this means-- Benjamin has his first visit with a pediatric cardiologist next week.

These conditions do more strongly suggest some kind of connective tissue disorder, possibly Loeys-Dietz Syndrome. Possibly not. I don't have any answers. I just know I have been on a quest for answers ever since our pediatrician first pointed out that four-month-old Ben was more "interesting" than other children. And now, we are starting to get some answers. That'll teach me. As I called Todd to relay the echo results, he told me, "The new doctor gets an 'A.' And you get an 'A.'" He was trying to commend me for championing the cause of our son's health. Never before have I wanted to fail. It was a lot more fun to just shrug and describe Ben as "a little bit weird."

I've been thinking all afternoon of that Elizabeth Stone quote so often thrown around about parenthood: "Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." My heart is a little bit broken today. But my son is absolutely perfect, made in the likeness and image of God. Ben is one of four greatest blessings upon my life. And I will spend my life doing the best I can by him.

I pass along this news not to freak you out-- please, let the parents handle the freaking out-- but just because I know some of you have been waiting for an update. Our son is as healthy, and as intelligent, and as pesky as he was this morning. And he is loved. Funny how that word "heart" in our language refers to the organ that keeps a body alive, as well as to the love that binds us all together.

"Cast all your anxiety on Him because He cares for you." (1 Peter 5:7)

Tuesday, February 9, 2010

Snow What?

We live in a part of the country that gets a lot of snow. Every winter. Snow. I can't say I love it. I can't even say I like it. But I can say I sure am used to it. So, this week, more snow. Meteorologists warned days in advance that it was pretty much going to snow for three days straight. And, it pretty much did. We got a bit more snow than anticipated, but the storm also passed sooner than anticipated. It was nothing like the system that socked the East Coast a couple days ago. And we're used to it. By the way, isn't the President from Chicago? Why was he so horrified? We made it through the snow yesterday to get Benjamin to and from the hospital for surgery. When the girls' school let out early, I thought, "Well, it has been snowing pretty hard all day. They're going to want to play outside, anyway. Might as well have them home." But when the girls' school started late today, I thought, "Come on." It turned out to be kind of a nice morning, though, without having to rush to get anyone anywhere. The older girls played cards...

Benjamin colored...

and Madeline practiced piano.

Monday, February 8, 2010

A Status Report on the Patient


We are back home after Benjamin's surgery. More serious than the hospital setting was the situation on the roads, as it snowed all night and snow continues to fall even as I type, with no sign of letting up. We got lots of personalized attention from the staff; we were the first family of the day to actually make it through the snow storm to the hospital.

Benjamin did beautifully. He was a real trooper-- excited to be there, engaged in the process, and, even after the hard stuff, not making a peep in recovery. He liked "taking a nap" with the strawberry-scented mask... and ate two Popsicles for breakfast after it was all over.

Ben had some stitches placed in the end of his penis, and right now his "pee hole" looks really wide because of it. I have been assured by the doctor that this is temporary. Hopefully, so is the pain. The first trip to the potty once we got home was really traumatic-- I'm not sure who suffered more, patient or Mommy-nurse.

The day surgery staff also carried out the geneticist's orders, gathering blood and tissue samples as well as performing an echocardiogram. The heart ultrasound and the urology surgery happened simultaneously, while Ben was under anesthesia, so Todd and I were not able to be present. It will be some time before we have any of those results related to a possible genetic condition diagnosis.

One funny thing: one of the nurses was doing her best to enter in the doctor's orders, but they were handwritten and hard to decipher-- especially one scribbled word. The nurse asked me, surveyed everyone on the floor and no one could solve the puzzle. She even called the genetics office, only to find out the doctor was in Florida. Finally, the consensus was that it said "plutos," which, of course, made no sense. After more study, the anesthesiologist brought back the paper to me and said, "What are the chances this says 'photos?'" Bingo. When we were in the geneticist's office, she asked if she could take photos of Ben (as they all do) and I obliged. So that order had nothing to do with today's proceedings. The surgeon was relieved... he said taking pictures during a little boy's urology procedure would be downright creepy.

Many thanks to Grandma R. who braved the weather and the early hour to babysit the girls. Thanks, too, to Auntie Kristin who took time out of her busy surgical day to check in on Ben and us. In this kind of situation, a loving face makes all the difference. Keep Ben in your prayers in the coming days and weeks. We know God is good. We thank Him for his many blessings. We look to the Lord for love, comfort, hope and peace.

Sunday, February 7, 2010

The Patient

Very early in the morning, we will take Benjamin to the hospital for his "little procedure." This is the one that is rescheduled from before Christmas, the meatoplasty: a minor surgical procedure is performed to widen the urinary meatus or opening (where the urine exits the body.) This will hopefully help Ben have more success in the aim department of going to the bathroom. Seriously, the other day, he came out wiping his forehead. Not kidding. Ben has been informed of what will take place, but he really has no idea. I am looking forward to a "stream" instead of a "spray." It will improve the quality of life for both of us.

While we are at the hospital, Ben's new geneticist has ordered some more tests, including blood work, a skin/tissue sample collection, and an echocardiogram. We do not expect a lot of answers tomorrow... but are at least grateful we can accomplish all these things in one visit. It will be an anxious day.

Today, I am busying myself with the mundane-- laundry, projects for the girls' school, lists for tomorrow. Todd is in the garage. We all have our coping mechanisms. Tonight, we will try to get a little sleep. Tomorrow, we will go together to face the day.

"Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you. He will not leave you nor forsake you." (Deuteronomy 31:6)

"When I am afraid, I will trust in you. In God, whose word I praise, in God I trust; I will not be afraid." (Psalm 56:3-4)

"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." (Isaiah 41:13)

Friday, February 5, 2010

Cousins are OK

I'm sure I've written about this before, but I'm glad we live close to family (most of the time)... and I am really glad my kids have close relationships with their cousins. It's just my kids and my sister's kids-- at least for the time being-- and we only live about 10 miles apart, so we see each other often. Ellen teaches piano lessons to the two older girls. I try to make as many of the boys' activities as I can, because I just love to see what's going on in their lives. We swap babysitting duties so we can volunteer at school, or just have some peace. And the kids really do play so well together, it sometimes seems easier to just have them all together.

Already this week, one afternoon when the daddies were working late, the mommies and the kids met Grandma and Grandpa at the gym to go swimming. It was Madeline's first time in a bathing suit, and she looked adorable, but the water was too cold for her. Oliver was an animal, tearing across the pool deck... I swear he would have jumped in face first if given the opportunity. Benjamin squealed in protest about getting in with Grandpa, but then wouldn't let him go once he had him. Solomon was mostly cold, and wouldn't let me take his photo. Kazmer, Elisabeth and Amanda immediately took the plunge, as they always do, and loved every splash. They are getting to be such good swimmers... they can retrieve diving sticks from the bottom of the shallow end (well, Libby is still working on it because she has no girth to help her sink) and they can jump into the deep water-- unassisted-- and swim over to the edge of the pool.




Today, Ellen's two younger boys are at my house. Ben and Sol are at the difficult age where each knows everything and is more concerned with bossing the other than actually playing. Sol walked in this morning clutching three stuffed toys. He told Ben, "Let's play these. You can be one. Pick any one you want. But I'm always the vampire. And Oliver is going to be the mommy, I mean, mummy. So, you can be the pirate. But don't break it!" Luckily, Ben said, "OK," and they took off up the stairs.

At the top of the stairs, Solomon stopped. The boy is a rule-maker, but he's also pretty much a rule-follower, at least at my house. "Who made this mess?!" he exclaimed about the smattering of Polly Pockets in the hall. "Was it you, Ben?" Ben shook his head. "Was it Maddy?" Ben shook his head and then said, "It was Libby." Sol appeared shocked. He loooves Libby... but this character flaw surely brought her down a notch in his book. Having had a crush on my cousin, Jon, while growing up, I can relate.

While I was putting down Maddy for her morning nap, Oliver stood in the doorway to her room. He wasn't saying anything, just probably thinking, "Ha, ha." As I turned to leave, however, Madeline could sense her older cousin, and cranked herself around in her crib to see him and then started crying. Already, she doesn't want to be left out of the fun.

Now, Sol and Ben are trying to facilitate "movie time." Ben said, "Close the door (to the toy room,) so Oliver doesn't get out." Sol said, "No, I don't want him in here." Sol lost that one-- because I am also in here, and am thankful Oliver can't yet turn that doorknob to escape. Then, there was the discussion about which movie to watch:
Ben: "Let's watch 'Mickey Mouse Clubhouse.'"
Sol: "OK. How long is it?"
Ben: "I don't know. Long."
Sol: "Why do you always want to watch 'Mickey Mouse?'"
Ben: "I like it."
Sol: "I don't want to watch 'Mickey Mouse.' How about this one-- is it too scary for me?"
Ben: "Yeah. 'Narnia' is too scary. It was too scary for me the first time I watched it... and it was too scary the second time."
Sol: "'Scooby Doo' scares me, too."
Ben: "Yeah, I know it does-- but I don't know why."
Sol: "Let's watch 'Babar.'"
Ben: "OK."

Thursday, February 4, 2010

Stop This Train, I Wanna Get Off

As my sister, SIL and I were discussing just yesterday, there are implications to writing things down-- making a record of them. I do think blogging is my way of sharing, and also venting, about my life. But I have never been a journal keeper. You will not find tomes of my secrets after I am gone. Even with the blog, I try (though I'm sure I'm not always successful) to never write anything that would hurt another's feelings, or that would incriminate me in some way.

And I fully realize everything I do write is not interesting to others. I maintain that's the beauty of the blog. I'm writing for myself... you can either choose to read along or not. All this obviously relates to what is on my mind today, which could aptly be titled, "Here We Go Again." This also goes in the file of "The Story of Benjamin" and contains information that may or may not someday be of interest to him.

Benjamin saw his third, and hopefully final, geneticist today. This was one of those appointments that was made months ago and forgotten. Going into this past fall, I still had concerns about Ben's neuro/muscular/skeletal development, as well as some possible digestive issues.

This doctor is one our regular pediatrician had recommended we see from the start of Ben's journey (when, at four months, his head circumference started trending off the top of the growth chart and how, by nine months, his weight was falling off the bottom of the growth chart.) However, in the summer of 2007, this doctor was unavailable. Really unavailable. Six-month wait to see her. And we thought our son was sick. You show me a parent who will wait six months for medical care for a potentially very ill baby and I'll tell you that parent can be served by a national health care system.

We have not been dissatisfied with the other doctors, specifically geneticists, we've seen. We have, however, had our eyes opened to the field of genetics, and we now know that it is most often a very subjective field, full of unknowns. And, while I never, ever want to make doctoring a hobby or a lifestyle, I do not yet believe I have too many opinions about my son. Could I make myself crazy searching for answers that simply do not exist? Of course I could. Could I live with myself if there was an answer that held the key to my son's health and well-being and I had given up before finding it? Of course I could not.

Today's doctor, in my expert mommy opinion, was the best yet. She was slow and patient and deliberate and forthcoming without being scary. She took in a lot. She gave back a bit. She has an idea. I hoped she would not have an idea, hoped there would be no idea to have. But, there is something... something about Benjamin she just wants to check out.

We've been down this road before. The first geneticist we saw suspected a rare condition, for which Ben had few matching characteristics. In that instance, the diagnosis of the syndrome basically meant a person is funny-looking. There were no serious health implications, no cognitive hindrances, no shortened life expectancy. We waited months for the blood work to come back to tell us Ben did not have that syndrome... and we already knew it wouldn't have made a difference in our lives, anyway.

This time is a little different. This doctor suggested testing Benjamin for Loeys-Dietz Syndrome. Again, Ben does not have all the characteristics of this condition-- but he does have some. And in this instance, the syndrome carries with it some pretty significant medical problems, mainly involving the heart and vascular system. As the geneticist said in her office this morning, "God forbid this is what Ben has. But it's foremost enough in my mind that I know I will sleep better at night knowing he's been tested for it."

What mother could argue with that?

So, on Monday, when Ben is already slated to go to the hospital for a minor medical procedure, he will also have a bunch of blood work as well as an echocardiogram. It will again be weeks and months before we know the results of these tests. Hopefully, we will not let that hinder our family life. My son *dazzled* the doctors today, and I was so proud. One interesting note: The geneticist asked Ben a lot of questions about his sisters. Among them, who's your favorite sister? (Maddy) Who's the nicest sister? (Amanda) Who's the smartest sister? (Libby)

"Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." (Isaiah 12:2)

Wednesday, February 3, 2010

Mommy Needs a Nap

We are going through a nap revolution here in Krinkeland, and it is not a good one. Well, maybe it's not all bad... it's just different... and you know how I am with change.

Benjamin has decided he is no longer going to nap. I know, I know, he's three-and-a-half and that's probably not so unusual. But Amanda took an afternoon nap until she went to kindergarten. (Then, when she started all-day kindergarten, she really needed a nap.) Elisabeth would have taken a nap until she went to kindergarten, but she and Amanda share a room and she was keeping her sister up at night. So, I had to cut off Libby's nap. Still, with both those girls, if we have plans that I know are going to keep them up late, I have them take naps, and they do it.

These days, if Ben lays down, he typically falls asleep. Maybe just an hour or 90 minutes, but he does sleep. But he doesn't want to sleep. And, if he does nap, he's up much, much later at night... and sometimes continues to wake up throughout the night. So, maybe Ben doesn't need an afternoon nap, anymore. Except, he does. By about 4 p.m., the boy goes straight downhill, whining and crying and begging and throwing fits and annoying the pants off me. It's all I can do to get him through supper without doing permanent damage.

I don't know what the answer is. I just know right now he is napping, for the first time in more than a week, and right now it is nice. I'll pay for it later.

Meantime, Madeline appears to be transitioning to just one nap. This, too, seems obscenely early in her little life. True, the girl never really got into a pattern of having a morning nap, because between preschool runs and volunteering at school and doctor's visits and trips to Target, we have not often been home for her to take a proper morning nap. Still, when the schedule allowed, I could usually count on her to wake up in the morning, get changed, have some breakfast, play a little, and then, about two hours after waking, go down for a 90-minute to two-hour morning nap. Then, we'd repeat the routine and she'd take a similar-sized afternoon nap.

For the past week or so, Madeline has screamed her fool head off for at least a half-hour each morning at nap time. Eventually, I rescue her and feed her again. (Didn't you read yesterday's post?) Or, if she does take a good morning nap, she throws a fit when it's time for the afternoon nap. But how do you tell a nine-month-old she simply can't stay awake from noon until 8 p.m.? And I'm NOT putting her to bed any earlier at night... The girl doesn't sleep all night the way it is.

Really, I would kind of like Maddy to transition from two naps to one big, long afternoon nap. She's been down now for about an hour-and-a-half, and I'm hoping I won't hear from her anytime soon. Then, I wouldn't feel so guilty about her missing her morning nap, anyway.

Man, I think I just heard Madeline... one hour, 48 minutes... and I haven't even taken my nap, yet.

Tuesday, February 2, 2010

A Holiday's a Holiday

When I took Benjamin to preschool this morning, he seemed especially hesitant to enter the classroom. Hanging back and being clingy is, however, typical behavior for him. (What? It's only five months into the school year. Ben might be a whiny, wimpy baby... but he's my whiny, wimpy baby.) As I always do, I assured Ben I would hover in the doorway for a couple minutes until he got settled. But he took another look around and told me, no, he had to go potty first, and he asked me to take him.

Once out of the teachers' earshot, Ben said, "I don't think it's the right day, Mom. I didn't see any decorations." I was confused... wondering if he was expecting the room to already be decorated for Valentine's Day, or if maybe he was mixed up because his older sisters are having Spirit Week at their school. But Ben was insistent-- there were no decorations in the room and today is a holiday. "Oh!" I finally exclaimed as the light bulb went on. "Do you mean GROUNDHOG DAY?!"

Not Perfect, But Still Darn Cute


Lest you think Madeline is the perfect baby (because I talk about her as though she is,) I assure you-- she is not. Here are the imperfect things our little angel has been doing lately:

*not sleeping through the night
*throwing royal fits at nap time, or sleeping very briefly, and then becoming so exhausted she finally naps at ridiculous times, like 5:30 p.m.
*scratching at the rash under her chin
*beginning to crawl-- backward
*pulling off her socks and sucking on them
*pulling off her hat and sucking on it
*not waving bye-bye

And, the piece de resistance: losing weight. Yep, you read right. At Madeline's nine-month well baby visit today, she weighed in at 18 pounds, two ounces, 14 ounces lighter than she was when I had her in for that mystery fever about a month ago. On those lovely standardized charts, she went from 80th percentile for weight, 40th percentile for height and 70th percentile for head circumference to 40th percentile for weight, 60th percentile for height and 80th percentile for head circumference.

After the nurse measured Madeline and remeasured her, she left to get the doctor. I recited to myself over and over again, "I will not freak out. I will not freak out. I will not freak out." Then, I texted Todd, something to the effect of, "I am freaking out."

Now, as a mother who has had to take in each of her four children for weight checks at some point during babyhood, you'd think I'd be used to this... water under the bridge... no skin off my teeth... But, in actuality, having been through this with the other three children, I finally decided, "It's me. It must be me. I am doing something wrong. I am not feeding her enough. I produce low-cal breast milk. My body won't release the fat. It's all my fault." The doctor chalked it up to a combination of: Maddy moving more, breastfed babies sometimes "evening out" at this age, and someone possibly weighing Madeline incorrectly a month ago. I took her home and shoveled in two jars of baby food.

I can hear my mom's eyes rolling as she reads this: "Oh, great, the train to Crazytown is picking up speed!" I can assure you, Mom, I bought a one-way ticket years ago along with that striped cap-- I am Ms. Conductor of the Crazytown Train. I can also hear my MIL's hands rubbing together as she thinks, "Good, another baby in need of feeding. I'm the best food pusher around. Gimme my trowel." Yes, I fully admit to being the biggest nutwad of the bunch... but I am following in expert footsteps.

Benjamin just came and told me he needed a snack: "Cereal, and a granola bar, and yogurt, and fruit snacks. Because my tummy is all emptied, Mom." Time to fill him up.

Monday, February 1, 2010

Insurance Gone Wild

Today is like Christmas for the Queen of Krinkeland: The new health insurance kicks in. To be clear, we were never without medical coverage. However, when Todd's last company went under in late November, that obviously canceled out all benefits. He immediately started some contract work; that came with a good paycheck, but nothing else. We sought our own, private, family health plan. But, since two of our children have minor medical problems in their health histories, we were immediately and summarily denied. Where we live, we still had the option of state-offered health insurance coverage, which is very limiting and very expensive, but we were going down that path.

In the meantime, the health insurance we had was a kind of continuation of Todd's last company's policy, something similar to the cobra coverage you've no doubt heard of, called a portability plan. This kind of plan has huge premiums, a high deductible, and lots of out-of-pocket costs. At least we had insurance coverage, but we tried our hardest not to use it.

On Friday, Todd signed a contract with the company for which he's been freelancing. The boss-- who knows me especially since I went into the office and had the engineers x-ray my wrist so I could avoid paying for a doctor's visit-- told Todd, "Fill out these forms right away and you'll have health and dental on Monday." I know Todd had some reservations about committing to this job... he has his hands in a number of pots right now... but he did it because it was best for his family.

So, today, I went all out: I made a checkup appointment for Madeline and one for Benjamin. I ordered Ben's new ankle-and-foot braces, which should come in later this week. I scheduled a minor surgical procedure for Ben, and am considering one for Todd. (That's all I'll say about those-- they're kind of personal.) I called for two prescription refills. I made dentist appointments all the way around. I am getting it done now, so we should be good for a while.