Thursday, February 21, 2013

Trach News and Nine Months of Handsome

Simeon is nine months old and he can:
  • Eat chunkier foods without making wretched gag faces (like cottage cheese and cooked apple pieces!)
  • Sit (with his hands supporting) for short periods of time
  • Wear his passy-muir valve all day except during naps
  • Play peek-a-boo
  • Feed himself a cookie
  • Spin himself perpendicularly during tummy time to get toys
  • Almost roll from his back to his belly (we're still perfecting this one!  Soo close!)

During our recent visit to ENT, they gave us a cap for the trach.   Basically, this is just another step on the long road to getting the trach removed (aka: decannulation).  While the passy-muir valve allows Sim to breath in through the trach and out through his nose and mouth, the cap simply blocks the trach altogether, forcing Simeon to breath in and out through his nose and mouth.

Fabulous News:
  • The doctor gave us a cap to try at home!
  • He also stated that Sim will "not need this trach for life."  He then said, "We just have to figure out what steps are needed to get him to succeed without it."
  • A scope of Simeon's airway showed that his vocal chords are working normally and all the structures look good.

Not-so-Fabulous News
  • The doctor wants us to wait a week or two before using the cap (but I want to use it now, gosh darn it!)
  • The heavy Darth-Vadery breathing noise Sim makes when wearing the valve is apparently not as normal as I had assumed.  It likely means his airway is still smaller than it ought to be. The type of narrow airway Simeon has is called subglottic stenosis and was one of his (many) issues back in June/July. 
  • This means Sim may need surgery to expand the airway so that he can safely breath without the trach.
  • He will have a sedated bronchial scope to check the narrowness of his airway (probably this summer).
  • The doctor would like him to be weaned off of his oxygen prior to removing the trach-- something I do not see happening anytime soon.
My excitement over getting the cap has become all mixed up with my disappointment over the possible need for airway surgery.  Like a big fruit smoothie with some anchovies thrown in, the appointment just left me feeling... weird and a little disappointed.  But it helps me to remember that our ENT is wonderful and also kind of a cool dude.  I trust him to know when the time is right to get this thing out.  Don't stop believing... 2013.

But enough about trachs!  Check out what this big, noisy, cutie-pie was up to last month

Simeon at Eight Months...

Saturday, August 11, 2012

Job's Wife and a Return to the Hospital

"Then the LORD answered Job out of the whirlwind, and said, "Who is this that darkeneth counsel by words without knowledge? Gird up now thy loins like a man; for I will demand of thee, and answer thou me. Where wast thou when I laid the foundations of the earth?"
--Job 38:1-4

I don't understand the book of Job.

Now, before I begin, I feel I should point out that there really is no comparison to the guy.  I understand my troubles are nowhere near his.  I've got nothing on Job but even though I'm not sitting in ashes and scraping myself with potsherds, I am in the midst of quite a struggle and he's been on my mind.

So, I just don't get it.  I don't understand why we're okay with this story and personally, I think it's pretty rotten.

Highlights from The Book of Job (Mev style):

Act One:
Here comes Job!  What a fantastic guy!  How could God not notice such upstanding behavior?  Give this guy some cattle!  Give this guy some sons and daughters!

Act Two:
God: Boy, do I love Job!
Satan: He only acts so great because you're nice to him.
God:  Wanna bet?

Act Three:
Look out, Job!  No more cattle.  No more sons and daughters.  Eww!  You've got boils and all manner of nasty stuff going on.  Sheesh.  Still praising the Lord, I see.  If you insist.
Job: Blessed be the name of the Lord.  He gives me stuff and he takes it away.  Whatever he wants.
Job's Wife: (giant eye-roll) Ugh, are you kidding me?!  Curse God and die.
Job: You sure are a foolish woman. 

Act Four:
Job wishes he were dead and his buddies proceed to give him a bunch of bad advice.

Act Five:
God asks Job a bunch of rhetorical questions (Where were you when I made the earth?  Could you catch a sea monster?) and Job admits that God is in charge and all-knowing.  God blesses Job with more cattle and more sons and more daughters (the oldest daughter was named Jemima by the way.  Who knew that was a Biblical name?). 


So there it is.  When I heard this story growing up, Job's wife seemed like quite the villain.  I remember sitting in Bible class (Christian School!) and learning about this monster of a woman.  I imagined her sulky and plump , waving off Job's wise words and grumpily sassing back her famous line-- curse God and die!  What a sourpuss!  But now, in the midst of my own troubles, her response makes a lot more sense to me than Job's goody-two-shoes behavior.  I know we should be like Job, but can we really blame his wife for her frustration?  Those were her sons and daughters too.

I'm trying to be like Job.  I'm trying to stay faithful but in the past few days I've felt more like the story's villain than its hero.  I am angry at God for not intervening.  I don't understand why He isn't easing our circumstances.  Sometimes I feel like He doesn't care about my son.  I love Simeon and I would do anything to make this easier for him.  If God's love is bigger than mine, why does he seem so far away?

Job wondered why he was born only to suffer.  He wished for his own death.  He wished he had never been born.  But he was never angry at God.  How could that be?

We've lived in this hospital for 3 months.  I miss my home and I miss my life.  But the truth is that this is my life life right now and it's Greg's life and it's Simeon's too.  That makes me just plain sad.  I try to stay positive and I know I will be again, but for now I am full of disappointment and I question my God who feels so far from me.

Tomorrow I will be Job.  Today I am his wife.

 "But he said unto her, Thou speakest as one of the foolish women speaketh. What? shall we receive good at the hand of God, and shall we not receive evil? In all this did not Job sin with his lips."
--Job 2:10 

You may be thinking, "Geez Mary Evelyn! Weren't you all "it is well with my soul" just a few days ago?  Why the long face?"  

On Monday we went home-- and it was just as wonderful as I thought it would be.  I sat on the couch!  I made a sandwich!  I slept in a real bed!  Do you have any idea how amazing the Olympics look in HD?? 

And then night came.  We put Simeon to bed in our room and hooked him up to his oxygen monitor-- and the numbers started dropping.  All night long Simeon's monitor alarmed as he dropped into the 80s.  We took turns watching him, hoping we wouldn't need to return to the hospital.

Napping at home with Gigi
Tuesday he seemed better.  He did fine during his morning nap but when he fell asleep that afternoon he dropped again.  He just couldn't get his oxygen back into the 90s.  He turned gray.  So we packed our bags and headed to the ER.  After six hours we were readmitted to the pulmonary floor-- 24 hours after we had left it.

One sleep study and chest X-ray later Simeon has:  Central apnea and (drumroll...) pneumonia.

If Simeon's pneumonia is caused by him aspirating during feeds then he will have to get a feeding tube.  We need a few more tests and observations to determine if this is the case so we will likely be here for another week or two.

Keep us in your prayers.

Wednesday, July 18, 2012

The Tracheotomy Coaster

I remember waiting in line for my first real upside-down roller coaster.  I was at Disney California Adventure Park with some of my best buddies from high school.  I've never been a fan of roller coasters-- I'm more of an eat-my-way-through-the-park kind of gal and theme park gastronomy doesn't pair well with the classic coaster loop-the-loop.  I'm not sure who suggested we hop in line for the California Screamin' but I was too embarrassed to admit my terror at the idea of coming face to face with all I had eaten that day.  To be completely upfront, even at the ripe old age of twenty-nine, roller coasters make me think I'm going to die.  I was afraid I'd shame myself by shouting something like "This is the end!" in front of all the other doomed passengers.
From the hospital cafeteria.

The line was long and the waiting was agony.  Each step brought me closer to the inevitable and I worked up a pretty good stomach ache pondereding the certain death that awaited me.  "Maybe I can duck out and say I have to use the restroom... or that I'm not feeling well... or I have to make a phone call" I thought.  Check you later suckers!  But no-- I stayed in line, boarded the vessel, pulled down my flimsy bar of protection, and rode that coaster.  And you know what?  The line was worse than the ride.

Having our child get a tracheotomy was kind of like that.

The waiting, the what-ifs, the fear of the unknown, the hope that somehow we can duck out or something else can be done-- by the time we made the decision to have a trach placed, I had really worked myself into a tizzy.  I fought against the idea.  It seemed too unfair, too disruptive to our lives, too terrible all around.  And then we made the decision, walked Simeon to the OR, put our faith in our fabulous ENT doctor, and rode that coaster.  And it was scary, and it was tough, and it isn't over yet.  But you know what?

The line was worse than the ride. 

And now for a ton of pictures...
Dr. Elmo prescribes lots of snuggles.  But will insurance cover such invasive treatment?!

Simeon was on the CPAP for a while.  He was not a fan.
About to leave for the operating room.
The Smiths prepare for surgery!
See that sweet little neck?  I kissed that place silly.
Last minute snuggles, per Dr. Elmo's orders
And we're out!
When one of us has a silly face, we all have a silly face.  It's only fair...
Thanks Uncle Joel for distracting my mom and dad with all your funny jokes!

And a video!  This is from a week ago.  Look at that cute baby!  Also, Daddy seems to think Simeon "isn't as active" as he thought he would be.  "C'mon, Dad!" Simeon says. "I'm trying to breath here!"

Sunday, July 15, 2012

The Girl Who Cried "Trach"

Good news: There is still no trach in the Smith family airways. **Uh-oh! See Newsflash below

Will the cuteness ever end??!
Over a delicious dinner in the hospital lobby (talk about ambiance!), I told my friend Meg that while I'm thankful Simeon has so far avoided a tracheotomy, I wonder what people will think if I keep writing about it and it never happens.  I'll be like that lying little scoundrel who couldn't keep his mouth shut about the imaginary wolf.  Boy did the townspeople hate that kid!  "Oh my goodness!" Meg said. "You're like the girl who cried trach!"

All this is to say that I hope our good news doesn't make you question the legitimacy of my original trach fears.  And we're not out of the woods yet-- a trach is still a possible treatment for Simeon's condition but we're hoping it can be avoided.

So why no trach?  Well, we've had a little miracle. 

Shortly after airing all my fears, Simeon's breathing worsened.  His oxygen levels dipped more frequently and he worked so hard to breath that he was extra sleepy and difficult to rouse during his episodes.  As he slept in my arms, I noticed him struggling harder than usual to move air into his lungs.  His face became gray, then blue, and his oxygen level dropped into the 60s.  It was scary.  And, horror of horrors, the nurses and residents seemed nervous too.  If the hospital is an airplane then the nurse would be the stewardess.  So basically, just when I felt my airplane hit some wicked turbulence, I saw the stewardess' clutching each other in terror and illegally calling their family members to say goodbye.  Not a good sign.   
Cute baby restraint or cruelly humorous baby torture device?

So we were moved to the PICU.  Here, Simeon could be monitored more closely.  This was a hard move for me.  I had grown attached to all our nurses on the general pediatric floor.  We were there for two weeks-- they all knew our little family and took great care of us.  The PICU was less friendly with lots of rules that make it difficult to stay with your child.

Lamest things about the PICU:
  • The bathrooms are for "patients only."  Technically parents are supposed to leave their child's room and walk down the hall to the public bathroom.  The nurse told me it was okay to use the bathroom in Simeon's room.  "All the parents do it" she said.  "But you should know that we don't knock when we go in there."  I looked at her confused. "Even if you know I might be using it?" I asked.  She shrugged, unconcerned. "Yeah, we don't knock." Nothing like using the toilet in constant fear of interruption.
  • No food in the PICU!  This means you have to leave the entire unit to have a peanut.  So when Simeon couldn't eat before a procedure I had to leave him, crying alone in his crib, while I went to the lobby for a snack.  This felt miserable so I chose to ignore this rule.  Greg and I stashed all kinds of food contraband behind the couch.  It felt like summer camp, except there weren't any good songs. Maybe I should write some?
  • No cell phone use.  Ha! Fat chance.
  • Mothers must use the pumping room to pump.  So, in the middle of the night I would put on my shoes, get my supplies, and walk down the hall to pump.  Here's the best part:  the lights in the pump room are activated by motion so about 10 minutes in I would be plunged into darkness.  Oh!-- the sad state of a woman, udders out, hooked up to a machine, in the dark, flailing her arms in a desperate attempt to restore the lights.
  • No flowers.  For real?  Who's in charge of this joint?  Miss. Hannigan?  Miss. Trunchbull?  Geez!
Simeon's magic hat!
So we settled into our new home with every intention of getting a tracheotomy.  There was really not much else to do.  The docs couldn't figure out what was obstructing Simeon's airway and they were running out of options.  The ENT decided to scope Simeon's airway under anesthesia one more time to see if there was anything he had missed-- but he didn't sound too hopeful.  Before they took Simeon in, he told me that if they couldn't find anything new they wanted to go ahead and give him a trach.  "I feel like we've kind of failed this little guy" he said.  I could tell he was frustrated.  There didn't seem to be a clear cause for Simeon's apnea.

We gave permission for the trach.  Greg took the rest of the day off and came to the hospital to meet me.  Watching them take Simeon into the operating room was terrible.  I knew that when he came out he would most likely have a trach.  I wouldn't be able to hold him for about 6 days because he would be sedated as he healed and I didn't know how long it would be until I could hear his voice again.  That scared me more than anything.  I remember when they told me that Simeon wouldn't be able to vocalize because of the trach.  I would miss all those baby noises.

Mommy and Daddy took a lunch break!
And then a little miracle: halfway through the surgery, the docs came out to tell us they had found something in Simeon's airway that could explain the obstruction.  By trimming some tissue, they hoped they could improve his breathing enough to avoid a trach.  Unfortunately, they were able to see that Simeon is obstructing in 4 different places.  Fixing this one could be enough, but if not we were still trach bound.  And so we decided to try it.  I got to hold the little man and hear his voice again.  I really was so thankful.

After the surgery, Simeon stayed in the PICU for 2 days.  No drop in his oxygen levels.  We were all a bit shocked that the surgery made such a big difference so quickly.  They moved us out of the PICU and to the pulmonary floor.  We plan to have a sleep study done this week to see if Simeon has improved enough for us to go home.

But even as I type this, Simeon's breathing sounds worse.  The surgery was three days ago and his oxygen is beginning to drop again during naps.  At this point, I don't know what will happen but I know that I'm so thankful for all the prayers and support that have gotten us this far.  Even if Simeon needs a tracheotomy, finding the cause of his obstruction was an answer to prayer.

By 3 am this morning, Simeon's breathing had not improved.  We were just moved back to the PICU.   Greg and I were able to pack a few things but will need to walk back to the pulmonary floor in the morning to retrieve the rest of our belongings.  They are putting Simeon on a CPAP in the hope that it will allow him to get some restful sleep tonight.  We will likely see the ENT tomorrow.  At this point, I don't know that there are many options for us.

I feel disconnected.  I've watched Simeon cry himself to exhaustion so many times in the past 3 weeks.  No baby likes to get poked and prodded in the middle of the night and having an empty stomach doesn't help.  I don't know how to help.

I've tucked a paper copy of the weeping icon under his blanket.  Maybe I'll pray myself to sleep tonight.   Do you ever wish our faith was more like hocus pocus magic?-- just say the right words, do the right flick of your wand, have the right talisman and kerpoof, you're healed.  But there isn't anything magical about the PICU-- they probably wouldn't allow magic here anyway. 

Lord, have mercy.   Sorry folks, looks like I'm crying "trach" again.

Saturday, June 30, 2012

The Chinese Finger Trap

Rats!  Trapped again!
Chinese finger traps are infuriating.  You slide your fingers into that scratchy tube and you think, "Wow!  There is so much room in here!  I'll bet I can easily leave at any time..."   But right when you decide to move on with your life-- water the flowers maybe... or do the laundry-- WHAM! The finger trap grabs a hold of you like a teenage girl at a scary movie.  And it won't. let. go.

It's easy to get into a Chinese finger trap, but oh so hard to get out.

The hospital is my Chinese finger trap.  Getting here was easy-- getting out?  Not so much.

I know it's been a few days since I've updated, but for a while we really didn't know much.  So put on your doctor hat.  This is a lot of info...

Simeon has had:
  • An MRI to look at his Chiari II malformation and to check his shunt.
  • Swallow study
  • Bronchial scope and a scope of his upper airway and vocal chords.
  • Upper GI video X-ray
  • Sleep study
  • Bowel X-ray 
Tests make Simeon feel...
Here's what we know:
  • Simeon's Chiari does not look compressed enough to be causing these symptoms.  His neurosurgeon felt that decompression surgery would be an unlikely fix, so that's been ruled out.  This is good news.  The surgery can be risky for infants and you never want to do brain surgery "just in case."  That's one you should be sure about!  
  • They did not detect any structural issues with Simeon's airways.  This is also good.
  • Simeon was aspirating when he swallows which likely caused the stridor.  Because of this, he needs his liquids thickened so that they "stick" together better and do not shoot off into his airway.  So... he can no longer nurse.  His milk now looks like pudding in a bottle (ick) but I haven't heard any stridor since the change.  They recommended pumped breast milk with a thickener but this didn't last long because...
  • Simeon now appears to have an intolerance for the dairy in my breast milk.  When I eat dairy, he eats dairy and apparently, he doesn't like it!  We noticed blood in his stool and that he was having bowel discomfort and the docs think dairy is the most likely culprit.  Now, Simeon is on a non-cows-milk-based formula ($$$).  I am still pumping and trying to avoid dairy but they said it would be a few days before it clears from my system.
  • This is a biggie: the sleep study showed that Simeon has obstructive sleep apnea.
    The view from our room
    So, why are we still here?:
  • When someone has obstructive sleep apnea, their brain is telling them to breathe but something is obstructing the airway.  It differs from central sleep apnea, in which the brain does not signal the body to breathe at all.  This explains why Simeon's chest would move up and down as if he were trying to breathe, but no air was going in.  His brain knows he should breathe, but something is in the way.
  • During the sleep study, Simeon had numerous short (2-3 second) apneic episodes, during which he could not breathe.  The scary thing is that he had one long episode that lasted 12 seconds.  That's 12 seconds of trying to breathe without being able to do so.  This episode occurred when Simeon was in my arms and in a very deep sleep.
  • The doctors need to figure out what is causing the obstruction. They believe it could be a reflux issue.  The brain may be signaling his body to breathe but the airway will not open since liquid has refluxed into the throat and he could choke.  To determine if this is the case, Simeon is scheduled to have a GI study done at the beginning of next week. 
  • If reflux is not to blame, it could simply be that Simeon's brain stem, which controls swallowing and breathing, may be underdeveloped (this can be an SB thing). If so, the muscles that control swallowing/breathing have low tone.  They relax so much during sleep that air cannot get through.
  • Basically, they know what the problem is (obstructive apnea) but since they don't know why it's happening, they can't treat it.

Possible treatments:
  • If it's caused by reflux, it could be treated with an antacid like Zantac.  This would be simple and fabulous.
  • If this doesn't work, or reflux isn't to blame, then Simeon could get oxygen during the night to kind of push air through and help him along
  • Or --and this is the scary one-- he could need to get a tracheostomy.  The docs have not told us how likely this is, but the idea breaks my heart.  Since we found out about SB, a trach has been one of my biggest fears.
Don't freak out doc!  Look at me breathe!  I'm feeling great...nothing to see here...move along...
So, that's the info.  They can't send us home with a baby who is having trouble breathing, so we will probably be here for another two weeks at least.

Jeez, Mom...  This post is a real snooze-fest!
I'll post about how we're feeling about all this soon.  Honestly I've not been up to it quite yet.  The truth is that I'm sad and I don't want to post about the emotional side of things until I can do it without bitterness.  So give me a few hours, or days, and I'll be back.

Tuesday, June 26, 2012

Welcome to the Hotel Spina Bifida

I don't have too much time but I want to update everyone on our current state of affairs.   Last night we were readmitted to Children's Hospital.  Here's the scoop:

I have been concerned about Simeon's breathing issues since we first brought him home from the hospital.  I mentioned this in a previous post but Simeon takes regular pauses in his breathing as he is falling asleep.  I was told this was pretty normal but couldn't shake the feeling that something wasn't right.  Since then, Simeon has developed stridor (noisy breathing) that you can hear when he nurses and for about 20 minutes after he has finished nursing.  All of this combined to make me one worried mommy.

We went to see the pediatrician on Monday.  I took a video of Simeon breathing with stridor so she could hear it.  I also clarified my concerns regarding his respiratory "pauses."  I told her that Simeon isn't just pausing when he breaths.  He isn't holding his breath-- he is trying to breath (I can feel his chest heaving up and down) but no air is going in.  This, combined with the stridor, was enough for our pediatrician to call Children's Hospital and ask that we be admitted.

The doctors' main concern is that Simeon is struggling to breath.  He has been hooked up to a monitor that watches his oxygen level.  This level should be between 95 and 100, but when he fell asleep last night, cradled in my arms, his level dropped to 71 on two different occasions.  This is pretty dangerous and Simeon briefly turned blue around his mouth before his oxygen level rose back to normal.  Now, that's enough to make any parent wig-the-heck out.

  • We will be seen by the ENT (ear, nose, and throat doc) who will conduct tests to see if Simeon is aspirating when he swallows, which could be causing the stridor.  
  • They will look at Simeon's airways to see if there is anything abnormal.
  • Simeon will get an MRI to look at his Chiari II malformation.  This malformation is common in people with SB.  Basically, the cerebellum and a portion of the brain stem descend into the top of the spinal column.  This means part of Simeon's brain isn't quite in the right place and may be under pressure.  Most people with SB do not have any symptoms associated with their Chiari but those who are symptomatic have breathing and swallowing issues.
  • The ENT will use a scope to look at Simeon's vocal cords.  Vocal cord paralysis can be a symptom of the Chiari as well.*
Simeon's issues could be caused by a structural problem with his airway, such as laryngomalacia, they could be a result of his Chiari malformation, or they could be caused by something else altogether.  If the Chiari is to blame, then Simeon will need to undergo brain surgery.  The procedure is called a decompression and would hopefully take pressure off of this area of the brain.

Please keep us in your prayers.  I'll try to update when we know more.  For now, we expect to be here in the hospital for most of the week at least.

PS:  The good news is that we are in the new wing of Children's Hospital and it is faaancy pants!

*The ENT just scoped Simeon and his vocal cords are in tip-top shape.  

Sunday, June 10, 2012

I'm Only Happy When it Rains (Milk)

Two nights ago, Simeon and I had a fight.  A real. ugly. fight.  The gist of our disagreement was this:  I felt it was time for us to sleep.  He felt it was time for us to fuss.  It didn't go well.  We were mad at each other and we both cried like... well, like tired babies.   I see now that when Simeon and I fight he will always win.  And actually, Greg is the one who looses.  Bet he didn't plan on taking care of two babies that night!

Here's what we've learned about Simeon in 5 days...

Simeon Dislikes:
  • Waking up
  • Diaper changes
  • Costume Changes
  • The process of being swaddled
  • Having gas (can you blame him?)
  • Not being held at all times
Simeon Enjoys:
  • Being held by Mom
  • Being held by Dad
  • Being held by the cat hoarder down the street (we haven't tried this actually, but I can only assume...)
  • Milk, milk, milk!
  • Burping
  • Snorting
  • Eating his hands
  • Lifting his head up to see the world
  • His mom
  • His mom
  • His mom....
Swaddle as I might, this hand always escapes!

And then the flailing begins...
Here's what we've learned about me in 5 days...

Mary Evelyn Enjoys:
  • Sleeping
  • Uninterrupted Eating
  • Fantasizing about washing her hair
  • Kissing Simeon's cheeks (the upstairs ones, not the downstairs... although I wouldn't be completely opposed to that as long as we were recently washed.  They are cute!)

I think the biggest thing we've learned these past few days is that we really have no idea what we're doing and neither does any other new parent.  Yikes!  But I have to believe we'll get the hang of this soon.  Surely in a few weeks the thought of leaving the house won't seem like such a laughable idea, right?  At this point, asking me to step past my front porch for anything short of a doctor's appointment would be akin to requesting that I hike all 2,000 miles of the Appalachian Trail (and I mean old-school style-- making shelter out of twigs, only eating what I can kill...).

I might as well come right out and say it-- I haven't washed my hair in 6 days.  That's right, ladies and gentlemen!  But before you get all judgy, before you turn up your nose in disgust, know this:  Simeon has never taken a shower.  Ever.  Who's gross now?

I am proud to say I've only made one phone call to the pediatrician and have relied on's Spina Bifida Kids forum for most other questions.  (I must say you would be shocked at the Google suggestions you get when you type "is it normal for my..." into the search bar. No Google, I do not want to know if it's normal for my tattoo to peel, but thank you for asking.)  The call to our doc came after I noticed that Simeon takes what feel like extraordinarily long pauses in his breathing while asleep.  Like, I'm talking 9 seconds of not breathing.  This really flipped me out, but the pediatrician says it's fairly normal and not to worry.  If I'm not supposed to worry about my son taking vacations from breathing, than I really need to figure out what is important in baby land.

Lately, I worry when I forget to worry.   Simeon is such a typical baby in so many ways that I don't always think about his birth defect.  That worries me. What if I forget to look for symptoms and I miss something important?   Really, I could spend all day obsessing over his spina bifida.  Will it affect his breathing?  His swallowing?  Will his shunt fail?  Am I changing the dressing on his wound correctly?  But I keep being told that I come equipped with a little thing called "motherly intuition."  Let's hope that's true.

This week we have 4 (count em' 4!) days of doctor visits.  I'll try to update you at the end of it all.  Expect a crazy long post or for me to be so strung out that I angry post something about how it's none of your business.  Don't worry-- the former is more likely.

And now, the many faces of Simeon Lee Smith:


Happy or Gassy.  You be the judge.

Not sure what this face is, but I dig it!
So sad!
And finally, this is his tent-revival-preacher face.  Nice.


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