Monday, October 26, 2009

Dragging my feet

If you're tired of reading about our medical dramas, feel free to skip this post.  I won't be offended.  (Sometimes I get tired of reading about my medical dramas!) 

I'm living in denial.  Everything around here has been going so smoothly.  Max is doing brilliantly- he started climbing stairs, walking and signing all in one weekend.  He's smart, adorable, and learning new things every day.  Besides my bout with the swine flu, we've been remarkably free of hospitals and doctor visits.  And that's part of the problem. 

Ever since the swelling started going down from Max's initial surgery, I've been questioning the results.  We sought a lot of opinions, and after talking with a bunch of doctors and each other, we decided that the very soonest we would pursue another surgery would be after the first of 2010, giving Max enough time to heal from the first surgery, and us plenty of time to research and make a good decision.   If we decide to stay in Utah for surgery, we've decided on the surgeon we'll use.  We met with him in July, and agreed to arrange a follow up appointment in September to determine for sure if surgery would be necessary. Yeah, good thing its the end of October.

I am so conflicted.  I really, really don't want to put Max through another surgery.  The surgery and the week in the PICU that followed was one of the hardest things we have ever been through as a family.  Its difficult for me to even write about it, because of all the emotions that surrounded that time.  One of the only things that got me though the whole process was that it was supposed to be a one-time procedure.  Thinking about doing it all again fills me with equal parts anger, dread and sadness. 

A second surgery is even more risky than the first.  We eliminated one surgeon here in Utah because despite all his craniofacial experience, he had never done a secondary reconstruction, and I'm not about to let him practice on my son.  It once again involves shaving his head, five-six hours in surgery, and almost a week in the hospital for recovery.  Because of our history previously with SAIDH, we're at higher risk of repeating those complications.  Yes, Max recovered quickly, and was acting completely normal within two weeks, but with a surgery like this, there's never a guarantee that everything will turn out as well the second time around.

The conflict comes because as far as we know at this point, a second surgery would be considered purely cosmetic, meaning it would be only to improve his appearance.  While craniosynostosis carries with it some risk of intercranial hypertension and other problems, the original surgery freed his fused metopic suture, and as far as we know, this surgery isn't medically necessary for his health/brain function/eyesight etc.  So on the one hand, the surgery has been recommended by everyone we've talked to to improve his appearance.  On the other hand, we're talking about putting our baby boy through another long, painful, and potentially risky surgery.

And that's the hard part, because my husband and I have completely different opinions about what we should do.  I think we should do the surgery.  While there are risks with every surgery, craniofacial surgeries are pretty darn safe.  This correction would give him the best chance of having a "normal" facial appearance.  I feel terrible for saying things like that.  I think Max is absolutely adorable, and would, of course, love him no matter what.  But people are cruel, and its hard enough to grow up when you look perfectly "normal."  The goal with another surgery would be to broaden and flatten his forehead, advance his browline, and increase the space between his eyes.  We have a limited window if we're going to do the surgery- its definitely something we would need to do sooner rather than later.  There's a number of reasons for that- the younger he is, the less likely it is he'll remember it, the more pliable the bone is, and the better the correction holds.   As I've been obsessing over his head shape for the months since his surgery, I've noticed the triangular shape becoming more and more pronounced once again, and there's really no way of knowing how bad its going to get.  And although I really don't want to put Max through another surgery, I also don't want him to feel self-conconcious about the way he looks his whole life and be angry or resentful of us because we didn't do something about it when we had the chance.

Tom's view is the opposite.  He thinks we should leave well enough alone.  He thinks Max is perfect the way he is and doesn't want to risk another surgery.   He doesn't want to put him through the pain and drama of another surgery when there is more risk to Max and when there's no guarantee that he'll look better than he does now.  His reasoning is that we wouldn't put our girls through an expensive or risky cosmetic procedure just to improve their appearance, and we shouldn't do it in this case either.  When I brought up the concerns I have about his appearance, Tom argues that there are a lot more important things than appearance, and that Max's charm and personality will will people over and he won't even need to worry about having a perfectly shaped head.

I don't even know how we're supposed to make this decision, especially when we're on such opposite ends of the spectrum.  So we're going to set up another meeting with the surgeon here, and a phone consultation with the doc in Texas.  We're going to arm ourselves with a big list of questions, find out pros and cons, define "medically necessary," then we're going to do some major fasting and praying.   And I'm going to stop dragging my feet and make some phone calls starting this week.

I wish there was some other way to do this besides going straight through it...

Sunday, October 25, 2009

Thursday, October 22, 2009

Who needs toys?

Who needs toys?

When you have a laundry basket...

Full of recently washed, clean clothes

To scatter around the house?

Is it too early to start teaching him to fold them and put them away?  Its a milestone right? I thought it went crawling, walking, then folding laundry....

Tuesday, October 20, 2009


Do you:

~Find yourself crying every morning when the alarm goes off?

~Grouch at your kids, your husband, the $&)*;#*@ dog, the government, the sun, the lack of sun, the price of rice in China, and anyone/anything unfortunate enough to cross your path before 9am?

~Believe that the numbers 5,6,7, and 8 only exist on the clock when they are followed by the letters pm?

~Refuse to believe in the mythical creatures known as "morning people?"

If so, you may have Morning Affective Disorder.

Symptoms of M.A.D. include excessive staring into space while your children consume way too much sugary cereal, bleary eyes and morning breath that could kill a large elephant, the blatant refusal to vacate your bedroom before 9am, uncontrollable weeping when the alarm goes off, and the threatening of bodily harm to anyone who dares speak to you before you have consumed the requisite amount of sugar and/or caffeine.

M.A.D. is potentially quite serious.  There have been reports of children going to school without homemade lunches, matching clothes, homework folders, or crazy hair on crazy hair day.  There have also been unconfimed reports of moms threatening to throw violins under the van or into the fireplace when said moms have been involved in music practicing before 10am. 

Someone you know and love might be affected by M.A.D.  If he or she spends the first few hours of the day rolling their eyes, growling, and mumbling incoherently, it is usually best to avoid this person all together to avoid potentially harmful side effects including grave personal harm.  You or your friend or family member is more likely to be affected by M.A.D. if they happen to be the parent of an infant or small child who believes that the only way they are capable of sleeping is if they are attached to said parent every possible second of the night.

As of this moment, the only treatment for M.A.D. is eliminating all triggers for the affected person.  People afflicted with M.A.D. should under no circumstances be forced to wake up or leave their beds, except of their own volition.  Care should be taken to only speak to those with M.A.D. in soft voices. You could offer food or drink, caffeine, sugar, a full body massage or an early morning nap.  Breakfast in bed is also a good option, but only if it occurs after 9am.  Under no circumstances should a person with M.A.D. be expected to be coherent, functional, pleasant, compassionate or understanding before the sun comes up.

Remember, M.A.D. is a serious disorder.  Until you know how M.A.D. affects you or those you live with, its best to just stay in bed.  Its safer that way.

Monday, October 19, 2009

Baby Steps, Part 2

When Max was first diagnosed with Metopic Craniosynostosis, I was told he had greater than a 50% chance of developmental delays. For the past two weeks he's been taking two or three steps at a time. Today, all at once, he started walking across the room, stopping to squeal with excitement. Here's to being on the good side of those odds!

Sunday, October 11, 2009

Still Alive

I (cough cough cough!)  survived (sniffle) the (hack, snort!) swine (I didn't really need that lung....) flu!  Barely.  (Where is my inhaler?)  I don't (50 different herbal remedies later) recommend (20 hours of sleep a day wouldn't be enough) getting (how am I going to make up a week's worth of violin lessons?) it. Just (Cough!) sayin.

Tuesday, October 6, 2009

Fun at the Doctor's Office

Remember the cold I was talking about?  The horrible, awful one?  The one where I said I hadn't been this sick in a long time?

Yeah, its not a cold.

Its the swine flu. 

Did anyone get the number of the truck that ran over me?

Although I must say that if I'm going to be coughing up a lung, at least the Codeine makes everything seem a little fuzzier around the edges.

Monday, October 5, 2009

On your worst day...

Anyone who knows me even a little bit knows that I'm a die-hard breastfeeding advocate.  I breastfed Abby for fifteen months, through severe engorgement, her terrible tongue thrust, cracked and bleeding nipples, and the first three months of my pregnancy with her sister.  I breastfed Ashlynn for two and a half years.  I'm going on eleven months with Max, and we've lasted through just about everything.  We kept breastfeeding when I couldn't get a decent latch and no one could help it get better, we kept breastfeeding when the doctors told us he was at risk from aspiration, we kept breastfeeding through major skull sugery and a week in the PICU, and we kept breastfeeding when we discovered a few weeks ago that his upper lip was tied and he had to have minor surgery to have it clipped. I've breastfed so far for a cumulative fifty-six months.  That's almost four and a half years.

But tossing all that aside, I hit my worst breastfeeding day this weekend.  A week ago, I was laying down nursing Max when he chomped down on my nipple and then pulled off.  I screamed, he screamed, (and no, we did not all scream for ice cream) and I discovered that my nipple was bleeding in four places.  It hurt terribly, but I decided to stick it through since I could mostly just nurse on the other side while that one healed.  Then a few nights later, I was nursing Max in the middle of the night.  I was  dead asleep and woken up by another chomp.  I sat up in bed screaming.  (If you ever want to give you husband a heart attack, sitting up and screaming at three in the morning is the way to do it.  I'm not sure he's forgiven me yet.) 

Enter the Cold From Hell.  I woke up early Friday morning and knew I was in trouble.  I started coughing like I had lung cancer, the snot was flowing everywhere, and every five minutes I was either begging for blankets or tossing them off me.  Problem was, Max was teething (obviously) and we suspect he was getting an ear infection,  And all he wanted to do was nurse.  And every time I tried to nurse him, it felt like a small animal was chewing on me.  With razor blades.  Add that to the Nyquil commercial I was living in and I have never wanted to wean so badly in my life. 

Problem is, there's no way to wean a baby instantaneously and gently at the same time.   Weaning a near-toddler (especially one as addicted as Max!) can take weeks or months, and that wasn't going to help me.  I hopped on a discussion board to try to find some kind of quick fix solution and I found this:

Never Quit on Your Worst Day

That was it.  I knew it.  I knew that I would regret it if I stopped then.  And you know what?  That day was awful.  I think I only nursed him three or four times that day, but everytime left me almost in tears.  (Or in tears.  Or hacking coughing.  Or all of the above...)  Saturday wasn't any better.  But Saturday night I asked for a Priesthood Blessing, and then Max slept for nine straight hours.  And by yesterday, things were starting to feel more normal again. 

I know a lot of you are going to think I'm crazy for sticking it through, and that's ok.  And I'm not posting this to show "Oh look what a dedicated nursing mom I am" or anything like that.  Its because I think the sentiment is so profound.

You can't quit on your worst day.

So that means when I'm so frustrated with violin practice that I want to back over the violin with the minivan, I can't quit.  (Or let Abby quit!) Because it will get better.  It has to.

And that means that when I'm still feeling like I've been hit by a semi-truck, and I just got done with teaching five violin lessons, and I'm trying to avoid hacking up my lung, and I pop the frozen lasagna in the oven not realizing that I misread the directions and its going to take two hours to cook, I can't quit.  Because my husband can bring home takeout so we don't have to eat half-frozen Stouffers Lasagna, and it won't seem so bad tomorrow.

And when the surgeries keep coming, and my kids are screaming, and the laundry is multiplying, the birthday party invitations are begging to be addressed, the bills are late, two phones are ringing, the violin student arrives, the snow is falling in early October, I couldn't stop coughing if you offered me a tropical vacation, and all I want to do is curl up under a blanket, hire a nanny, and sleep until Spring, you all have to remind me that if I take two Benadryl, three advil some herbal tea, and get a good night's sleep, everything will look better in the morning.

Friday, October 2, 2009

Music and Motherhood

The Bach Double Violin Concerto is a huge piece of music. When I teach it to my violin students, it takes months to learn just one of the two violin parts. The piece was placed where it is in the Suzuki Violin books to push the student to an entirely higher level in their playing- to stretch their playing in a way they've never been stretched before. When I start teaching it, I isolate the hardest spots in the piece, and we learn those spots first. Sometimes, the hardest spots are just 2-3 notes, but they are never more than a measure or two. Then, the student gets the assignment to play those spots over and over again; usually 25-50 times a day correctly. If its not correct, they can't count it. Once those 2-3 spots are perfect and memorized, then we do 2-3 more spots. This goes on for a month or two of lessons, chewing up the hard spots until they become manageable. Then once the spots are manageable, we work until they are played freely and with ease.

Usually, by this time, the student is frustrated with drills and tired of the piece. It feels fragmented, and the student has lost some of the vision of what the piece can become. Still, for a few more weeks, we work on spots; they need to be effortless before we can move on. Then, the week that they come back to me playing all the sections memorized and perfect, we have a magical lesson. We spend the lesson putting the jigsaw puzzle together. And suddenly, the collection of measures that they have been drilling endlessly for months become music! Something wonderful, exhilarating, and complete! After that lesson, the Bach Double is joyful. I send them home to practice renewed.

The next week, the student comes able to play the piece all the way through. They are excited and ready to move on to something else. Problem is, its called the Bach Double for a reason- there's two parts. Now comes the exciting part- fitting the two parts together like an intricate jigsaw puzzle. This at once maddening and magical as spots that were easy are now monstrous when combined with another violinist. But gradually, with lots of give and take, lots more drill and lots of time, seasoning and maturing, the student and his or her partner are ready for the concert stage.

I've been thinking a lot about motherhood lately. The good, the bad, the frustrating, the maddening, and the joyful. About how flawed I am as a mother, and how much I want to be better. It feels much like learning a huge violin concerto. I don't know about you, but I can't be a perfect mother. I don't even come close. Sometimes I work on patience. Over and over. Sometimes I have to work on patience 50 times in a day. Sometimes it feels like I'll never get good at patience, kindness, or keeping my temper in check when the baby is whining and the dinner is burning and the six year old is reading "Junie B Jones" at the top of her lungs. There are times when I don't know if I'll ever be able to keep my 4-letter words to a minimum, or be able to keep the house from overflowing with toys, dog hair and laundry in all its stages. Sometimes I have to work on just one or two things and let the other things go. Sometimes I get discouraged because we're only playing little bits of what we know to be a huge masterwork. I get frustrated to be so impatient when I know I still need to work on great big qualities like charity, forgiveness, kindness or tolerance, and then incoporate all those qualities into my parenting. But I hope that someday, with enough repetitions, things will get easier. I hope that one day, I'll get better at patience and be able to work on something else. And maybe by the time I'm old and gray (and literally can't play the violin anymore,) I'll be able to perform the parenting masterwork beginning to end with my husband as my partner, and we'll get to feel the pure adrenaline rush that comes from that synergy and achievement.

As a violin teacher, I would never expect my students to be able to play the Bach Double after one week of lessons. It would be incredibly unfair for me to spend a few minutes in a lesson teaching one practice spot and then expect everything to be perfected after seven days. And it would be absurd for me to hand someone a violin and teach them the Bach Double first, before learning "Twinkle Twinkle" and all the other masterworks that come before. The Bach Double takes months to learn, and then years to perfect. I think being a mother or a wife can take a lifetime as we learn bit by bit. Our Father in Heaven doesn't expect us to be the perfect mother all at once. He is a kind and patient teacher, who never gets frustrated when he has to teach us the same lessons week after week, month after month. All he cares about is that we're practicing, even if we're practicing just two notes for months at a time.
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