Friday, April 30, 2010

Confessions of a Suzuki Violin Teacher-Mom

First, a disclaimer.  If you are one of my violin students, or one of my students' parents, step away from the blog.  You don't want to read this.  I promise. 

All set?  Good.  Here goes.

Most of the time, I hate the practicing ritual with my daughter.  Almost daily, I wonder at the wisdom of giving an eight year old a $1000 wooden box with strings on it and expecting her to make music with it.  Especially at seven o'clock in the morning.  For an hour and a half. When she has the unfortunate luck of having a mom that is also a violin teacher.

Sometimes, I don't even like the violin.

And I am especially sick of Suzuki Violin Book 4.

Curse you Seitz and your double stops!  Curse you Vivaldi and your first movement with all the shifting, and your third movement with the blasted waterfalls that is impossible to memorize!  And my latest?  Curse you Bohm and your Perpetual Motion and all of you people in the International Suzuki Association who thought it was a good idea to add yet another piece to Book 4 that already takes an eternity to get through!!

Needless to say, I'm feeling a bit burnt out.

We're in a unique situation, Abby and I.    She's advanced for her age.  She can play quite brilliantly when she wants to.  But she's eight years old, and she's (very developmentally appropriately) starting to rebel and question everything I say, which makes practicing difficult.  Especially because I'm a violin teacher, and want everything to sound perfect.

Sometimes I have to pretend that I'm not the violin teacher, and ignore things that I would normally correct. 

Sometimes, like yesterday, I have to send her downstairs to practice by herself, and grit my teeth when she slops through everything.

Sometimes, (like today!) I have to force myself to put on a happy face about going to yet another concert, knowing that it's important to support her in what she's doing, because it's the concerts and the performances that she likes and feels successful after. 

So why do we do it?  (I've been asking myself that question a lot lately, so this is good for me.)

Because she is so talented.  It gives her an indentity and a peer group to participate in.  She's not very athletically inclined, but has found a home in violin.

Because it teaches her to be detail-oriented, and to set and acheive goals.

Because she really does love performing.  After concerts or rectitals, she is all smiles.  The knowledge that she feels proud of herself and successful at something that is really hard is worth the early mornings. 

Because someday, (hopefully sooner rather than later!) she will be able to go downstairs and practice all by herself and make actual progress because she wants to, and not because I'm breathing down her neck.  

So in the meantime, we'll keep plugging along.  We'll keep up with the scales, the metronome ticking along, and the memorization of the blessed Perpetual Motion.

And I'll keep propping my eyes open with toothpicks when the alarm rings at 6:10 am, and pray that summer vacation hurries up so we can practice at a more normal time of day.

Monday, April 26, 2010

Things are about to get a lot more interesting around here soon...

Two days before Max went in for surgery, we got this surprise:
To say we were stunned would be an understatement.

Today, after about four weeks of letting the idea settle in a little, we had a brief ultrasound that showed us that there is a new little someone with a happy little heartbeat who will be joining our family in December.

Still feeling a bit stunned and more than a little overwhelmed, and glad that babies take nine months to cook so Tom and I have some time to get used to the idea. The girls are wishing for a baby sister, of course, and haven't stopped talking about it since we told them this morning.   Tom and I have bets on another boy.  The baby's heartrate at the ultrasound today was in the 150's, so the little stinker isn't giving anything away!

I am glad that, after two miscarraiges, there is actually a baby with a heartbeat.  And I am also glad that there is not more than one baby with a heartbeat, despite all the dreams and premonitions I have had about twins lately. 

So there you have it: my excuse for everything for the next seven months, including why my house is a disaster, my blog isn't interesting, and why I'm wearing maternity pants for the first time today.  (Hey, this is pregnancy number six for me!  I think my uterus just decided it was way too much work at this point and gave up early!) And now, I think I'm going to go eat some pickles and take a nap. 

Sunday, April 25, 2010

Musical Memories

When the bishop showed up at my door on Saturday afternoon just before we were leaving for a trip to Salt Lake to meet with a doula client, I wasn't concerned.  He lives just a few doors down from us, and we are frequent visitors at each others' houses.  When Abby told me he wanted to talk to me, I still wasn't worried.  He told me he was there to give me the speakers for Sunday, (I get to be in charge of the Sunday programs,) and as I wrote them down, he proceeded to tell me that I was the final speaker for Sacrament Meeting the next day.  When I started to object, he told me the topic was music and how hard could it possibly be for me to speak about music?  I asked him if I could bring a CD player, a 75-piece orchestra and the Mormon Tabernacle choir so I could talk about all the ways music has changed me.  He gently told me that would be inappropriate.  I mumbled and grumbled something that inadvertently must have sounded like acceptance, because at about 9:50 this morning, I was standing at the podium, speaking about spiritual experiences I've had with music. 

And since I spent my creative blogging hours last night writing a talk, and since I spent an hour and a half writing something, you better bet it's going on my blog!  (Especially since I've found myself unable to post anything even remotely interesting lately!)  And everything went well today, thanks for asking.  Aside from Max trying repeatedly to escape the confines of the pew to run up to me as I was speaking, there were no highly embarassing incidents.  Which, you know, is really saying something!

I have been blessed throughout my life to be involved in music. I’ve been reading music almost as long as I’ve been reading words, and many of my best memories have come because of my involvement in music. My husband even proposed to me the night we met after he found out I played the violin! I’ve played in orchestras all over the United States and Canada, I’ve sung in the Tabernacle, and I’ve been teaching violin lessons since I was seventeen years old. I’ve been fortunate to learn and perform many of the great musical masterworks of composers such as Beethoven, Mozart, Bach and Brahms. But interestingly, the music that has touched me the most, that has changed my life and made the biggest impact on me, is the sacred music that brings with it the Spirit of the Lord.

When the bishop asked me to share experiences of when I felt the Spirit through music, I struggled to think of something profound to share. It’s not because I haven’t had experiences where I have felt the spirit when listening, singing, or playing an instrument; it’s exactly the opposite. It’s because there is rarely a time when I’m in the right frame of mind when singing or performing hymns and other good music hasn’t helped me to feel the spirit as well as uplifted and strengthened me.

Elder Dallin H Oaks has said: “Sacred music has a unique capacity to communicate our feelings of love for the Lord. This kind of communication is a wonderful aid to our worship. Many have difficulty expressing worshipful feelings in words, but all can join in communicating such feelings through the inspired words of our hymns. When a congregation worships through singing, all present should participate. As we sing we should think about the messages of the words. Our hymns contain matchless doctrinal sermons, surpassed only by the scriptures in their truth and poetic impact. We need to make more use of our hymns to put us in tune with the Spirit of the Lord, to unify us, and to help us teach and learn our doctrine. We need to make better use of our hymns in missionary teaching, in gospel classes, in quorum meetings, in home evenings, and in home teaching visits. Music is an effective way to worship our Heavenly Father and his Son, Jesus Christ. We should use hymns when we need spiritual strength and inspiration.”

When Tom and I were first married, we moved into a ward comprised entirely of people living in apartments. It was a ward filled primarily with young couples, a large amount of people with musical experience and a very determined and ambitious bishop. He decided that our ward choir was going to be the best ward choir that ever was, and enlisted nearly every person in the ward to join the choir. The piece he chose was “Come Thou Fount of Every Blessing.” We had some great times rehearsing it, and were excited to perform it for our ward. Our bishop had even talked about recording it to a CD, and taking our ward choir “on the road” to perform for other wards!

I was a few months into our first pregnancy, and the week before we were scheduled to perform, we suffered a painful and unexpected miscarriage. I was devastated and grieving. When the bishop came over to check up on us, reminding me that we were scheduled to sing that Sunday, I told him there was no possible way I could sing that Sunday. I felt too fragile emotionally and spiritually, not to mention physically. He told me he thought the very best thing I could do was to sing, and allow myself to be strengthened and uplifted by the spirit.

The next day, I reluctantly joined the choir, mostly because of my bishop’s encouragement, and as we started to sing, I felt myself surrounded and uplifted by the spirit that was present, and I found myself doing more crying than singing. I was touched by the lyrics:

“O to grace how great a debtor
daily I'm constrained to be!
Let thy goodness, like a fetter,
bind my wandering heart to thee.
Prone to wander, Lord, I feel it,
prone to leave the God I love;
here's my heart, O take and seal it,
seal it for thy courts above.”

The spirit bore testimony to me that day of the Lord’s love for me, and His ability to comfort me and strengthen me in times of struggle. And although I still grieved the miscarriage, I found that in the coming days and weeks, when I started to feel sad or discouraged, I was able to remember that performance, and the feeling I had of being wrapped in the Lord’s love, and it strengthened me. To this day, I still get teary-eyed when I hear that piece performed.

One of the inevitable things that comes with the territory of being a musician is taking the music callings. In fact, before we came to this ward and I got called to be in charge of the ward bulletin and newsletter, it had been almost ten years since I had had a calling that wasn’t a music calling. One of my most challenging and enjoyable music callings I had was being the Stake Choir director. The counselor from the Stake Presidency that was assigned to me was a professional choir director, and he insisted that we were going to have an excellent choir that was going to set the time for a very spiritual stake conference. Needless to say, I was feeling the pressure.

I don’t remember exactly what was going on in our lives at the time, but I do remember that I was struggling to feel close to Heavenly Father. Our rehearsals were on Sunday night, and I was having a hard time both feeling motivated to go and lead a rehearsal, and feeling intimidated and inadequate in my calling. I sat in the parking lot of the church before I went in and said a brief prayer, pleading for help, because I knew I didn’t have the energy or the ability to do it on my own that night.

One of the songs we were preparing was “Nearer My God to Thee.” We were rehearsing the rarely sung 4th and 5th verses to the hymn, and I was doing everything I could think of to get the choir to transmit the feeling and emotions behind the words into their performance. I started asking them to think about the beauty of the words in the 4th verse:

“Then with my walking thoughts, bright with thy praise,
Out of my stony griefs, Bethel I’ll raise.
So by my woes to be, Nearer my God to Thee.
Nearer my God to Thee, Nearer to Thee.”

I explained to the choir that when the hymn spoke of “Bethel” it was making reference to a monument to God; so in essence, we were singing about how because of our trials and struggles, we would be able to glory God through coming closer to him. Then we talked about the words of the 5th verse, which read:

“Or if on joyful wing, cleaving the sky,
Sun, moon and stars forgot, upward I fly.
Still all my song shall be, Nearer my God to Thee,
Nearer my God to Thee, Nearer to Thee.”

I became emotional as the truths of those words touched my heart. I love the images of being filled with joy so powerful that you are splitting the sky, and feeling the spirit testify to me of how joy will follow the struggles if we are willing to stay close to the Lord. As the choir sang those two verses, I was overcome with emotion and was barely able to continue directing. I left that evening grateful, not only that the Lord answered my prayer and sustained me through the rehearsal, but that I was blessed to feel His spirit and have my testimony of the Lord’s love for me strengthened.

Sometimes I struggle to express my feelings and my testimony in words. There are so many times where words feel inadequate to express what I feel in my heart. It is at times like that where I am grateful for my ability to express myself with music.

And here, you'll just have to imagine me playing an arrangement of "Nearer My God to Thee" that I decided to put together last night at 11 pm, with an accompanist who agreed to accompany me at approximately 8:53 this morning.   I am so much more comfortable using music to express myself, and although I was lacking the 75-piece orchestra, I was glad I was able to bring my instrument to wrap things up.
Do you have a favorite hymn or piece of music?  What about a time that you were strengthened or uplifted by music?

Wednesday, April 21, 2010


Apologies for the terrible picture quality.  I have no photography skills, whatsoever.

Combine the two girls in brand-spankin' new (to them) soccer uniforms, and the minivan behind it, and you have all the proof you need.  Yes, ladies and gentlemen, I have officially joined the ranks of the soccer mom.

My twenty year old "I will never drive a minivan" self would be so ashamed.

In other news, the first soccer game in the history of our household went relatively well.  The girls' team lost 4-1, Ashlynn took a brutal header from the soccer ball, and Abby learned that she can't skip around the soccer field.

All in all, a good day.

Wednesday, April 14, 2010

Spring Break Day 3

In which Stacy gets bored and somehow inexplicably decides that painting the violin studio is a good idea. 
Um, I might be in real trouble by Friday if this keeps up.

Tuesday, April 13, 2010

Two weeks post-op and a lot of random pictures

Today marks two weeks post-op.  We're slowly making our way back to a new normal. 

Still not sleeping much, but I'm suspecting that might have as much to do with two impending molars as it does with post-op anxiety, fear, or other weirdness.

His hair is starting to make an appearance, albeit slowly, so at least he's not looking bald as a cue ball.  I'm anxious for the stitches to start dissolving so that his scar is less noticeable.  Or less inviting to toddlers, children, and well meaning but rude strangers to touch his head and say "what happened to his head?"  It feels a little bit like pregnant woman syndrome where perfect strangers think nothing of coming up and touching your belly.  I can't count the number of people who, over the past week, have thought it was perfectly acceptable to put their hands on Max's scar.  Just for the record, its not okay.  (And am I the only one that thinks it's strange that I even have to explain that?  Seriously, people!  Get a clue!)

So since the girls are out of school for spring break, we decided to spend the day at the children's museum.

I spent a lot of time chasing Max, who thought all his Christmases had come at once.  A room full of balls!  Water I'm allowed to play in!  Kids everywhere!

Playing in the helicopter.

And, since I'm a slightly obsessive post-op cranio mom, I also spent tonight chasing him around with a camera trying to get pictures of his head.  (He looks like such a little boy in this picture.  Where did my baby go?)

Mom, will you quit taking pictures already?  I'm in the bath for crying out loud!

This is the best shot I got of his new and improved forehead.

And we finished out the night with Max and Dad's all time favorite activity.  Do they look nearly identical or is that just me?

Monday, April 12, 2010

Utah Census

With apologies to those not living in Utah/not LDS, I thought this was too funny not to share.

Utah Census Form

1. _____________________ (Given name)

2. _____________________ (SURNAME)

3. Descendant of:

A. Brigham Young _____
B. Heber C. Kimball _____
C. Laman and Lemuel _____
D. Cain _____

4. Tribe of Israel : _____________________

5. Number of occupants residing in home in each category:

(Listed in chronological order)

A. Nursery _____
B. Junior Primary _____
C. Senior Primary _____
D. Young Women's _____
E. Young Men's _____
F. Relief Society _____
G. Elder _____
H. Dearly Departed _____
I. High Priest _____

6. Occupation [Please select all that apply.]:

A. Amway dealer _____
B. Shaklee dealer _____
C. Nonie juice dealer _____
D. NuSkin dealer _____
E. Melaleuca dealer _____

7. Automobile:

A. Station Wagon _____
B. Van _____
C. Suburban _____
D. School Bus _____
E. Double Decker _____
F. BMW (Big Mormon Wagon) ________

8. Favorite place to eat the night before Fast Sunday:

A. Chuck-A-Rama _____
B. Hometown Buffet _____
C. Sumo Sam's All You Can Eat Feeding Trough _____

9. Favorite Hero:

A. Nephi _____
B. Abinadi _____
C. Samuel the Lamanite_____
D. Steve Young _____
E. Johnny Lingo _____

10. Which of the following do you bring to church [check all that apply.]:

A. scriptures _____
B. Franklin Planner/ Daytimer _____
C. Pen/Pencil _____
D. Lifesavers/ Cheerios _____
E. Tic Tacs _____
F. Game Boy _____
G. Big Gulp _____
H. Cooler _____
I. Sony Walkman _____
J. TV Watch _____
K. All of the above _____

11. Do you prepare your church lessons:

A. A month in advance _____
B. A week in advance _____
C. While in the bathtub _____
D. While on the toilet _____
E. During Sacrament Meeting _____
F. During the closing prayer of Sacrament Meeting _____
G. During the opening prayer of the class you're teaching ___
H. Just wing it [according to the promptings of the Spirit]

12. Do you think pews should be permanently equipped with Big Gulp holders?: yes___ no ___

13. How many years has your family sat in the same place for Sacrament Meeting:

A. 10-20 years _____
B. 20-30 years _____
C. 30-40 years _____
D. Over 3 generations _____

14. How much time does it take for you to fall asleep during a high council talk:

A. 1/100,000,000th of a second _____
B. 1/999,999,999th of a second _____
C. 1/999,999,998th of a second _____

15. Which day of the month do you go home/visiting teaching:

A. 31st ______
B. 31st ______
C. 31st ______
D. 31st ______

16. How many church basketball fights were you in last year:

A. 1-10 _____
B. 10-20 _____
C. 20-30 _____
D. You'll have to ask my lawyer _____

17. Which of the following has been your most effective Family Home Evening:

A. Arguing about getting along
B. Having an opening and closing prayer with dinner
C. Gathering around the television to watch, "Dancing with the Stars?"

18. How many times a year do you make:

A. Green Jell-O salad _____
B. Funeral potatoes _____
C. Cabbage and Top Ramen salad _____
D. Turkey , cashews and grape-stuffed croissants_____

19. How many water-filled two-liter bottles do you own:

A. 1-2 thousand _____
B. 2-3 thousand _____
C. 3-4 thousand _____
D. Enough to fill the Great Salt Lake _____

20. Which of the following do you feel is the most secure facility in the nation:

A. Alcatraz
B. Fort Knox
C. Ward Libraries

21. How many structural engineers do you hire annually to insure you'll win the pinewood derby: _________

22. Keeping the Word of Wisdom in mind, how much of the following do you consume:

A. Chocolate: ___ pounds daily X 365 days annually= ____
B. Cola: ____gallons daily X 365 days annually = ____

23. If you had to choose between witnessing the Second Coming or attending a BYU/UofU football game, which would you choose?

A. Second Coming _____
B. Football game _____


Thursday, April 8, 2010


I have people calling me, emailing me, texting me, visiting every day asking how Max is recovering.  The easy way out is to talk exclusively about his physical recovery.  He's really doing well in that regard.  The swelling is decreasing every day, both of his eyes are open, his incision site looks nice, and he's requiring little to no pain medication.  We've gone from this: (which I still think is pretty stinkin' cute!)
to this, in just a few days' time:

I'm so grateful that we're home from the hospital, that the surgery is over, that Max is recovering well, that we haven't required another trip to the hospital, but I'm learning that physical recovery only tells part of the story, for him and for me. 

There's a lot of talk among other moms whose kids have craniosynostosis about how awful their children sleep post-op.  We were lucky enough to escape that the first time around.  Max had a four hour nap the day we got home from the hospital, and quickly fell back into a routine. 

We haven't been so lucky this time around.

I'm not sure what it is.  It could be that after having his eyes swollen shut for five very long days that he's scared of the dark.  Or that he's remembering all the crazy, painful, confusing things that happened to him while he wasn't able to see.  Or maybe the natural separation anxiety that happens at this age is being compounded by the aftermath of surgery.  Maybe his body is working extra hard to get rid of all the anesthetic and pain meds that he was filled with for a week.  But whatever the reason, the simple fact is that we are just not sleeping.

Max has never been a wonderful night time sleeper anyway, but it has definitely been moved to a higher level this week.  The only way he will sleep is if he's next to me.   And close proximity doesn't do it- he has to be draped over every inch of me.  And the reason I thnk fear is still playing a part in things is because he wakes up every half hour or so visibly anxious and crying.  I finally gave up trying to get him to sleep on his own last night, and went to bed with him about 9:30.  That was a smart move on my part, because I don't think we slept for more than a half hour continuously all night long. 

It feels very much like having a newborn again.  Max is very emotional and clingy.  He gets hysterical if I try to leave the room without him, and every 5-10 minutes he has to come and cuddle with me before he can go about his day.  We are taking naps every afternoon, and I'm ignoring the resemblance my house has to a toxic waste dump.  I am very much in survival mode: doing only those things that absolutely have to be done.  Which is why I'm still in my pajamas today and its nearly noon! 

Besides the sheer exhaustion, (I'm starting to realize why sleep deprivation is a very real and valid method of torture!) there's an emotional aspect to our recovery that I didn't anticipate.  I've shed a lot of tears this past week, and I confess that there's been more than once that I've wondered why we agreed to do this.  Intellectually I know that the surgery was necessary so that his brain could grow properly, and avoid the risks of increased intercranial pressure.  I felt so grateful that we decided on surgery when the surgeon told us he had found evidences of increased pressure.  But that doesn't help during the crying spells at 2 am, (his and mine!) and when I look at him and can't help miss his head full of baby curls and the way he used to look.

Yesterday, I decided it was time to venture out of the house.  I was feeling more than a little stir crazy, sick of having nothing to read, and craving strawberry frozen fruit bars.  There was only one thing to do.  I dug out a pair of jeans and put real clothes on for the first time in days, broke out the industrial-strength concealer (hoping against hope that it would cover up the bags under my eyes that have managed to reach to my chin!) and decided to brave the great outdoors. 

I forgot that Wednesday morning is story time at the library, and it was swarmed with what seemed like every toddler, preschooler and parent in town.  Max took one look at all the people and started whining.  Normally, he runs gleefully through the library, trying to pull every book off ths shelf; this time, he was clinging to me like a baby spider monkey.  I ran into a friend, and while she was asking me how he was doing, I couldn't help noticing something.

The stares.

People were staring like crazy.

And it wasn't just a quick glace at him and then looking away.  They were out and out, mouth gaping stares. And it wasn't just the preschoolers, it was the moms. 

I've felt incredibly protective of Max since he was born.  Having a child who is different has unleashed the mama bear in me.  And standing there at the library yesterday, watching everyone stare at my baby boy made me want to scream.

Yes, he has a scar from ear to ear.  Yes, his eyes are still a little swollen.  But this little boy will astound you with his strength and ability to overcome.

What I wanted to shout at all of them staring was to either come up and talk to me about it or look away!  I am more than happy to talk about Max, and to build awareness about his rare and often misdiagnosed condition.  But don't just sit there and stare. 

He's a person.

A little person who has been through two enormous surgeries.  And has come through with flying colors. 

Its taking me longer to recover from this ordeal than it will him.

I'm thinking I may need to get one of these shirts and have him wear it every day.

We got our books, our popscicles, and went home to take a nap.  In that respect, I'm glad he's still too little to understand how hurtful people can be sometimes.

I'm so proud of my little boy.  He's such an amazing little person.  Even when he's waking up 247 times a night. 

So stare away.  But don't be surprised if you get a really dirty look from me in return.

Monday, April 5, 2010

There's no place like home (especially after a week in the hospital!)

Before we left for the hospital, I was determined that I would document everything that happened, as it happened, not only so that we could have a record of it for ourselves, but also so that it would be of help to the growing number of moms with cranio babies that I have been in contact with.

Ahhh, what's that they say about good intentions?

The truth is, the time in the hospital was incredibly difficult, physically and emotionally, and there was very little time to do anything besides attend to Max's needs, and then collapse into sleep in any available quiet second.  Now that we are finally, blessedly home, I'm going to try to piece things together. 

We spent two nights, and the better part of a third day in the PICU.  Thursday morning we were promised a transfer, but ended up staying until almost five o'clock while they made sure all his levels were stable.  His sodium was still fluctuating, although trending upward, which made the Drs convinced that it wasn't actually SAIDH this time around.  He did have low blood albumin levels, which bought him three iv bags full of albumin, and a chaser of lasix, all in the hopes of bringing the swelling down.   Within a few hours, the puffiness in his body was markedly lower, although his eyes still looked like he'd been on the losing end of  a prize fight.

We were transferred to the regular floor that night, and took up residence in the NeuroScience Trauma unit.  Happily, all the rooms in the NTU are private, and we settled in nicely.

One of the biggest problems throughout the hospital stay was getting Max to take his medication.  Because of extensive ear infections and whatever else, he has a huge aversion to taking medication by mouth.  Actually, aversion is too mild a word.  Despite all our efforts to give him anything, he would scream like we were trying to kill him and spit every little bit out.  We tried explaining this to the staff, and they would pat us on the arm and tell us "Oh, we'll figure something out."  Max showed them.  While we did morphine via his IV for a few days, we really didn't want to be giving him that much medicine if he didn't need it.  So the next challenge became getting him to take oral pain meds.  They prescribed liquid lortab, and we tried everything to get him to take it.  One nurse though that if we sweetened it with sugar water it would help.  No.  He got maybe a quarter of that dose.  At 3 am Friday morning, one nurse thought if she added strawberry flavoring it would help.  No again.  In fact, it was a complete disaster.  He spit everything out, and it ended up running down his neck and under the bandages covering his central line.  Utter panic ensued. Because the central line goes directly into his jugular vein, everyone was panicked about the possibility of infection, and the central line had to be removed right then.  The anesthesiologist had taped it seventeen different ways, and then stitched it in incredibly tight, so removing it was miserable.  While it was nice to have him connected to one less set of tubes and wires, getting it taken out was one of the most painful things we had to go through in the hospital.

Being on the regular floor had its priveleges though.  When Max was awake, all he wanted was to be up.  We spent hours walking the floors of the hospital and taking him for rides in the wagon all around the unit.  When we weren't wandering the halls, we were standing and swaying or rocking in the rocking chair.  He started to get incredibly anxious if one of us wasn't holding him all the time, because he knew as soon as we put him down or someone else touched him that something annoying, uncomfortable or painful was going to happen.

There aren't words to describe how difficult it was to see him struggling like that and not be able to do much to make it better.  It was scary to see Max so depressed.  He wasn't talking, signing, or giving us any real glimpse of his personality.  I can't imagine how scary it would be to be a baby and have all these painful things happening and not even be able to see what is happening or who is interacting with you!  We kept praying for his eyes to open, even just a little bit.  His last surgery was so different- his eyes were only swollen shut for about eighteen hours or so, and we hadn't seen his eyes since before the surgery!

Friday was by far our most difficult day in the hospital.  Max was refusing everything by mouth: food, water, breastmilk, and especially medication.  He got put back on IV fluids, which felt like a huge step back.  We were trying to avoid morphine, but the rectal tylenol they were giving him just wasn't strong enough, and by Friday morning we were dealing with an absolutely hysterical baby.  Nothing we could do could get him to stop screaming.  he was obviously miserable.  Finally, they decided to go ahead and push the morphine so that we could get his pain under control, and then the doctors and nurses went to work to try and get his pain managed better.  They finally decided to discontinue the lortab and start trying oxycodone, a stronger medicine that required a much smaller dose.  We decided to do everything we could to get his med in him on time so that he could finally start to feel better.

The new medicine made a world of difference.  He slept most of the afternoon on Friday, (as did we!) and by Friday night, we were finally starting to see a touch of his personality.  We got a few smiles and he responded to us more, although we could tell he was still uncomfortable.  We had all but given up on the hope of going home on Saturday.  We were told we weren't able to go home until his pain was managable and he wass eating and drinking everything he needed.  We resigned ourselves to hanging out in the hospital until Easter Sunday, and kept out fingers crossed for him to start feeling better.

Friday night was the turnaround.  They gave him an enema to get everything cleared out from the surgery, (and clear out he did, almost all over me!) and that made him visibly more comfortable.  Then he proceeded to sleep nearly the whole night through.  He woke up to take his meds and then went right back to sleep, and Saturday morning, he seemed like an entirely different baby.  Although his eyes were still swollen shut, he was trying to play with me, he wouldn't let go of the iphone, (its quite funny to see a baby who can't see try to play his favorite games!) and most importantly, was begging to eat.  He downed a string cheese like he was starving and then ate a plate of scrambled eggs without taking a breath.   Our doctor came in and told us that she was ready to send us home if we were ready to go, and we jumped at the chance. 

We gave him a bath to remove a week's worth of surgery goop, medicine, antibiotic ointment and whatever else from his hair, (that they were supposed to shave but didn't) filled what felt like a thousand prescriptions, gathered up our things and headed home.  It only took Max a few minutes to realize that he was home, and he immediately wanted to get down and explore.  Problem was, his eyes were still swollen shut.  So he would toddle around for a few minutes, then bump into something and scream.  Then we would pick him up to comfort him and he would scream because he wanted to be down.  We were petrified of him falling and breaking open his brand-new head, sending us right back to NTU room 2022, so we spent the next few hours following him around to keep him from falling, and trying to convince him it was okay for him to go to sleep. The battle for sleep took about two hours, a dose of pain meds, and a few tears, but Saturday night's sleep was well earned.

Seeing his eyes open just the tiniest bit on Sunday morning brought us all a sigh of relief.  Even though it was just the tiniest slit, Max was thrilled to be able to see what was going on around him, and was quickly back to his old antics.  It took him about 30 minutes to find the box of baby wipes and start emptying it, and he probably would have spent hours playing on the iphone and the xbox if we would have let him.  The only trauma yesterday came when we sat him up in the high chair and shaved what was left of his hair.  The surgeons told us they were going to shave everything before the surgery while he was under anesthesia, but when they removed his turban Friday morning, they had shaved a strip about three inches wide, leaving him a tiny patch of hair in the front and a see of crazy curls in the back.  As much as it killed me to lose all those baby curls, it will be easier to take care of and look a lot better.  So Tom got out the clippers and we buzzed all his hair.   He wasn't at all happy about it, but we can now see that his head is *perfectly* round, shaped just the way its supposed to be, and yes, he still has a nasty scar.

So now, Monday morning, things are blessedly back to a new normal.  He's a little bit more clingy and scared than normal, (like I can't leave the room without a screaming fit,) and his eyes are barely open, but from the way he's acting, you would never suspect that he had been through such a major trauma just a few days before.  Its going to take me much longer to recover.  And the house and the mountain of laundry?  Well, they may never recover.
We spent so much time standing, swaying, and rocking. 

And sleeping.  But it never felt like enough.

The turban is off! 

Taking a wagon ride.

This isn't a great picture, but it shows how flat and broad his forehead is now.  We're anxious to see how it looks once the swelling is gone.

So tired after the Friday craziness.

Home!  So glad to play with familiar toys!  (And you can see how bad his hair really is!)

After the haircut, playing with the ever-present iphone.

Loving with Grandpa.

Just chilling. You can see his eye open a tiny crack- the other is still pretty closed.

I tried to get a birds eye pick of his head while he was in his high chair, but instead just got this sweet face!

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