Friday, February 19, 2010

A mother's prayer

There's a well-established tradition in the Orthodox church of praying scripture, such as when we sing Psalm 141 during evening prayers:

"Let my prayer arise in Your sight as incense, and let the lifting up of my hands be as an evening sacrifice."

But in spite of this rich tradition, I have found that my own private prayers (outside of other prescribed prayers that are taken from scripture) are seldom composed of holy writ.

There has been one notable exception to this of late. I quite spontaneously started to pray Luke 2:52 for Ian, asking that, like the child Christ, he would "increase in wisdom and stature, and in favor with God and man." After all, we have no greater role model, and what mother would not hope these things would be true of her son, especially since so much is rolled up in the phrase "in favor with God."

There's just no improving on God's word, or on the eternal Word of God!

Wednesday, February 17, 2010

Ian, IKEA, and Peas! Oh, my!

Ian's recent trips to specialists have given us an excuse to go to a couple of our favorite places: IKEA and Trader Joe's. Mommy and Daddy remember when we used to be able to go on a whim, and not just because we didn't have a baby to think about. In any event, we felt it was important to memorialize this important first in Ian's life.

Here is Ian in the IKEA cart in the IKEA elevator, which Daddy forgot to make go up to the next floor because he was too busy talking about babies with the other elevator occupants. Teeheehee! Ian's not all that enthusiastic in this photo, but that's only because we had yet to visit children's IKEA.

Here, Ian and Daddy are standing in front of an IKEA display.

This was all on Friday.

Skipping ahead to yesterday...

We're all about new experiences in this house, so we had to introduce Ian to peas. We think he liked them pretty well. Mommy likes the little smock/bib from IKEA and wishes we had bought several more of them, since it kept most of the peas off of his clothes! Here's a snippet of Ian eating his peas, good boy that he is.

Also a first, Ian just discovered the dangling banana on his Jumperoo last night while he jumped to the "music" of Olympic Hockey. He was so determined to get the banana that Mommy became determined to get the moment on video. Here it is.

Finally, Ian got a very special valentine card from his Grandma J, and he enjoyed holding it and looking at it. Mommy especially liked the diaper coupons inside. :)

Tuesday, February 16, 2010

Whatever Ian Likes...

...Ian gets.

But he also gets plenty of stuff he doesn't like. Such is life!

Here's a little update on Ian's sojourn into the land of solid foods.

Ian seems to think that green beans are yucky. Sweet potatoes are okay. Mommy milk with a bit of prune juice will work when he needs to get things going, if you know what I mean. Rice cereal is boring and tends to stop things up. Pears are yummy. Mix pears and oatmeal, and he just might finish the bowl.

Next up to try? Peas, perhaps.

Ian's first several food experiences consisted of a lot of pushing food out of his mouth with his tongue, contorting his face into grimaces and smearing food all over everything. He seems to have gotten the hang of swallowing it now, when he wants to do so.

Ian has two teeth. The first to arrive is growing in quite nicely. The second tooth has broken through the surface and will shortly be just as lengthy and present as the first.

Speaking of Ian, we are off to see a third specialist today about his flat noggin. The results so far are mixed:

Opinion 1 - Cranial Tech
This company specializes in cranial remolding and has its own proprietary "active" helmet. The therapist we saw said Ian is "definitely" a candidate for a helmet and predicted a 2-3 month treatment time if we start right away. They found that Ian has brachycephaly (widening of skull front to back) and plagiocephaly (flattening of one side of the skull) with mild torticollis (neck tightening). They did a photo study and took manual measurements, but most of the opinion we received was based on one person's interpretation of the situation by simply looking at his head. Their sales pitch is formidable and they make no bones about being the best option. In fact, if it didn't cost huge sums of money we don't have, their sales pitch would have been effective, despite the lack of scientific data, because they manage to make treatment seem quite urgent and almost cool.
- they have the best reputation among parents of the major helmet-providers when it comes to results
- because of aggressive treatment, they tend to get the results faster, which means less time for skin problems and other complications of treatment to develop
- their helmets are lighter and less bulky than the other active helmets on the market
- they make a cute calendar of their patients and otherwise make it seem "cool" to have a DOCband (their product)
- our pediatrician recommended them
- the evaluation is a one-time deal -- the next visit would be the beginning of the treatment process
- they don't contract with insurance companies, in general, because insurers prefer to work with companies that can provide other orthotic devices, not just helmets
- they don't want to tell you who the competition is so that you can make an informed choice, only that Cranial Tech is better
- their helmets are expensive, and...
- kids tend to outgrow their helmets and need new ones more often because the reduced bulk means less foam to shave away as a child's head grows. This means that parents have to pay twice for the treatment process, once for each helmet
- their closest location is in Charlotte, and he will initially need to make weekly visits

Opinion 2 - Level 4 Orthotics
This company makes all kinds of orthotic devices, hires experienced orthotists and uses the STAR line of products from Orthomerica, which includes both active and passive bands (more on this later). They said that Ian's condition warrants treatment on the basis of 4 measures (placing him on a severity scale of 3/moderate in each category), but on the fifth, which is the most critical, he just barely misses falling in the normal range. In fact, the data showed that my subjective feeling about his severity (I said he fell between moderate severity, unacceptable and moderate severity, acceptable) was supported by the scientific data she got from the scan. This orthotist also disagreed with the torticollis finding, saying that she did not detect any serious muscle tightness or limitations in his range of motion.

This particular evaluation suggests that we genuinely have choices to make, including choices about treating him or not, and much could depend on what natural growth does for him over the next few weeks. The one variable that is hard to control for is what will happen if the child is left untreated. The condition can cause neurological and functional problems, but there is no guarantee that the condition will worsen without treatment. In fact, some research I read last night suggests that there is a 70% chance that his condition would improve or stay the same even without an orthotic, as long as we are diligent about repositioning, especially because an unexpected finding of this particular bit of research is that growth was greater front-to-back than expected, which is good news for brachycephalic babies, since that is the major problem area for them. With Cranial Tech, we were not encouraged to wait and see, but at Level 4, that is exactly what they suggested. One major consideration is that he has little "facial involvement," which means that the flattening in the back has not disfigured his face much. This was all based on data I could see and compare to studies I later found online, which makes it easier to make an informed, rational decision over an emotional one.


- they have contracts with all but one insurance company, which means they work with ours
- they use a laser scanner to make a 3-d model of the cranium and to take measurements/ratios, which are then compared to a variety of severity scales (in other words, it is much less subjective)
- they are not all sales pitch, in fact, they told us more about our other options, including the local politics of cranial banding
- they were low-pressure, and encouraged us to have a second free scan after 2-4 weeks to see what natural growth is doing to his head without intervention
- they were very honest about all of the options, and did not want to make a recommendation until they are sure of his need
- kids are less likely to need a second helmet, because the first one is bulky enough to allow for significant growth
- this company is also far away - they have offices in Charlotte and Cary that I can take him to, but it is a 1.5 hour drive, at least, either way
- their helmets are bulkier than Cranial Tech's, making them more unsightly and obvious
- some of their staff specialize in cranial remolding alone, others, including the one we met with in Cary, is also a general orthotist, so we'd have to go to Charlotte if we wanted Ian to see someone who only does helmets
- the cost is high for the sort of helmet that is appropriate for Ian's condition

Passive Helmets vs. Active Helmets (Bands)
Passive helmets are mass-produced in set sizes and are shaped like an "ideal" skull with the idea that the natural growth of the skull will cause it to fill in the helmet, helping the skull to take a more normal shape. The cost savings are clear, but the treatment is much less effective. Often babies with passive helmets end up having active helmets later on when the passive helmets do not work.
Active helmets work by placing constant gentle pressure on areas of overgrowth, while relieving pressure on depressions where more growth is desired. In order to achieve this kind of fit, each helmet is custom made to fit the contours of the child. As a result, treatment tends to go more quickly and effectively, but it costs more.

Each type of orthotic is indicated for different conditions. Nobody has suggested that a passive helmet would be appropriate for Ian. If they suggest treatment, they suggest the custom orthotic.

What's next?
We're off to Hanger Orthopedic Group today, so I can add their analysis to this once I know what it is.

Also, I am debating taking him to see a cranio-facial specialist (plastic surgeon) in Winston-Salem who is all the rage in the area. His philosophy is contrary to that of all of the other major orthotic providers, and, from reading the background information on the helmet he has patented, I find his reasoning fairly compelling. His approach is less forceful than the typical "active" band, making the correction more physiologically natural, but it is more effective at addressing root causes than the typical "passive" helmet. He also made his device with the idea that it needed to be more reasonably priced than the custom orthotics that we have been considering. I think if we decide to treat Ian, it would be a good move to have him evaluated by this doctor as well so that we know what his option might cost us, in addition to saving us some time, since he's closer than two of the other options.

Saturday, February 13, 2010

A Valentines Letter

My dearest Nikki,

It's been over eight years since we first met and fell in love, and I'm quite certain I love you more now than I did in those first days. My heart might not flutter and somersault every time our hands accidentally touch as it did then, but I've developed a much deeper appreciation for who you are. You're very selfless, putting my aspirations ahead of your own, and sacrificing your time and efforts for me. You've shouldered so much of the responsibility of running our household, from handling our finances to caring for our child. I want to express to you how deeply I appreciate all that you do and all that you are -- you're my perfect soulmate!

With much love,
your Danny

Remembering Zachary Julian Johnson

This day, February 13, has come to be meaningful for our little family, because it was the day two years ago that we said goodbye to our first tiny son. He was not with us very long -- I carried him for about 11 weeks, and two of those were after we discovered his heart was no longer beating -- but he had a huge impact on our lives. We mourned his loss deeply then and remember him with sadness even now.

This year, our gift in his memory is to give him a name. His name has already been written in the Book of Life, as are the names of all of the holy innocents, but we wish to inscribe it here on earth, because we are his Mommy and Daddy, and always will be.

So, today we name him Zachary Julian. We selected his names from the names of Orthodox saints commemorated in the weeks surrounding his passing. "Zachary" is for the holy prophet Zechariah, whose prophetic ministry is described both in the Old Testament books of Ezra and Zechariah. His prophecies proclaim the coming, and second coming, of Christ, which is our true and only hope. The name Zachary means "The Lord remembers," which we affirm to be true of all of His children, including our little Zachary; the whole world may forget, but the Lord remembers His own. His middle name, Julian, means "youthful". Julian is also the name of the town where we honeymooned, so it evokes very special memories for us and is a reminder of our love for each other.

Life is a gift, no matter how short, how small, or how insignificant it may seem. Life is something to celebrate... and to honor. So, today we celebrate the life of our little Zachary.

Memory Eternal!

P.S. - Most parents who experience early miscarriage never know why a baby was lost or whether it was a boy or a girl, so we consider ourselves fortunate to know that Zachary was male and why he didn't survive. What we knew within a few weeks of his loss is that he had a condition called "triploidy," which means that he had a full extra set of chromosomes. The pregnancy was further challenged by an abnormal placenta due to what is known as a partial (or incomplete) molar pregnancy. By the time we had the first ultrasound at 9 weeks, Zachary's heart was not beating. While learning about his genetic condition didn't make it any easier to go through the loss at the time (in fact, it even made it a bit more scary because of the small risk of cancer that goes with molar pregnancy), and while it took me almost two years to finally ask about his gender, we consider it a gift now to have anything that helps us to understand him, and his loss, better.

Why name a child who didn't live long enough to be born? We think there are lots of reasons, many of which are articulated on this website: Naming the Child. We believe the site is a beautiful resource for those who have lost a child to miscarriage, stillbirth and infant death. We found it just a few days after finding out that the baby we lost was a boy and deciding to name him, which we are sure was not an accident!

Tuesday, February 9, 2010

The meaning of Mom

I was still in that murky mist of thought that follows deep sleep when I awoke this morning to the sound of little babblings from the co-sleeper next to me. I rolled over and saw a cherubic face smiling back at me. I could not help but smile myself. It took a few moments before I began to think clearly, and I delighted anew in that smile, because a brief interlude from the nighttime rose through the fog to my conscious mind.

Sometime in the early morning hours I had awoken to a frightened cry. Ian doesn't usually wake and cry in the night, although he sometimes whines or fusses for a few moments, so this was a different experience. Motherly instinct took over immediately, and I reached over to him, lifted him onto my bed where I could hold him, cooed at him and cuddled him and wondered what terror had assailed him in his sleep. He settled back to sleep quickly, so I returned him to his own bed and drifted back to sleep myself, musing on what sort of fears might plague such a tiny child.

Last night I watched part of the PBS adaptation of Jane Austen's Emma. I was struck by one line, spoken by Emma's chronically fretful father: "You do not know what it is to fear until you have had a child." I laughed and repeated the line to Daniel, but not because it was funny so much as because it rings true. I'm sometimes nearly as fretful as that beleaguered gentleman is, but I'm grateful not to know the truth of his words better than I do, because so much of parenting seems to be the struggle between faith and fear -- the one the result of trusting God and his providence, the other a result of trusting (and mistrusting) myself. God has been exceptionally gracious to us, because if the worst things we have had to worry about in 6 months have been a low-grade fever and a somewhat lopsided skull, I have been given the most gentle introduction to motherhood that I can imagine.

I have my moments. I had one a few days ago when I was besieged by the full weight of what it means to have a baby who needs to be cared for at all times. I was angry and frustrated, because I could not do something I wanted to do, and I could not figure out how to make it work out. Daniel was able to participate, and I was stuck being mom. To be fair, Daniel would have been willing to do daddy duty so I could take his place, but I knew how much he wanted to do it, so I felt it was right to give him the opportunity. So, there I was, resenting Daniel's relative freedom, feeling trapped by my own guilt and selfish will, and unable to come up with some way to make my inconvenience disappear. To top it off, I had the presence of mind to be absolutely disgusted by how selfish and unreasonable I was being. It was an awful feeling.

I had to sit myself down and have a moment of reflection:
This is what I signed up for. This just is what being a wife and mother means. It doesn't meant that I never get to do what I want to do -- nothing as dramatic as all that -- but it means that I have the opportunity to sacrifice my own desires to give to those I love. It is a gift, not a burden. It is ridiculous to even want my life to be any other way. After all, if the daily annoyances of not having complete autonomy are the only price I pay for having such a dear husband and son, then my cross is light indeed. The blessings are far greater, even when I'm at wit's end and have run out of "me" to give. That is because the real gift is God's love, and I am asked only to be open enough that I may be a conduit.

Ah, love! I'm beginning to understand more keenly what people mean when they say that they fall in love with someone more every day. There is something so beautiful about watching a helpless infant transform before your eyes into a little person with likes, dislikes, his own sense of humor and justice, and his own mind, which is captivated by the world around him and so open to new experiences. The more I know him, the more I love him. The more I love him, the more I want to cling to every moment and treasure it in my heart.

I heard a radio story on NPR about a week ago about the passage of time, especially how it seems to move so much more quickly as we age. Apparently there are more reasons for this than just our own increasing awareness of our mortality. In short, whenever the mind experiences something new, it catalogs the new information rather thoroughly, so that it merely has to revisit the stored data when another experience of the same type comes along. It makes the experience of youth nuanced, detailed and rich, because everything has the sheen of newness. For this little baby, every moment brings that freshness, and his mind is compiling like crazy. For an older person, who has learned the truth of the assertion that there is "nothing new under the sun," there is simply less to file away about the world, so memories become simpler, and the good old days seem somehow more beautiful than the day-to-day cares of adult life. I suppose this is why travel makes such an impression on us, no matter our ages: we give our brains the opportunity to process something full of new details, and our brains rev up again to capture it all.

How lovely it is to be given the opportunity to watch the world unfold in his life as I near what is likely to be the middle of my own. It gives me a whole new set of moments to catalog, like what it is to see your child taste his first solid food, what a delight it is to observe his raptures with a new toy, and what a thrill it is to do simple things, like watching him take a peaceful impromptu nap on the floor.

These moments are so sweet, yet so fleeting. I hope that my mind will catalog these moments with all of the freshness and importance they have in my heart, because they are, indeed, precious, and they give such rich meaning to my life as "Mommy".

First tastes of sweet potato

An impromptu nap

Friday, February 5, 2010

You say that to all the moms...

I've made appointments for Ian to see two specialists so that we have some guidance and know whether treating his skull deformity is advised. I have really mixed feeling about this sort of thing. On the one hand, some people believe it is only cosmetic, and if the specialists agree, we will probably leave well enough alone. On the other, there are neurological problems that can result, and the window of opportunity to treat is growing smaller as he ages. I don't like this.

What I do like is the other thing I was told at Ian's appointment on Wednesday.
"Oh my gosh, he's so cute."
And, again
"He's sooooo cute."
The girl checking us in said it about 3 or 4 times before I said,
"Well, thank you, but I bet you see a lot of cute kids in here."
She replied, "We see a lot of kids. You could say that much."
"No, really, he's so cute!"

I think so -- flat, lopsided head or no! It's nice when someone else agrees... even if she does say it to all the moms.

P.S. - I added a couple of photos from his 6 mo. birthday. Poor little guy was feverish and sad and needing extra cuddles. He's doing much better now.