Tuesday, June 25, 2013

On Delightfully Normal and Average Sorts of Things...

For those of you that read one of my recent posts, I thought I should update you a bit on a special blessing...

We drove all the way to Sioux Falls yesterday, and again, I majorly dreaded our list of appointments - again.  However, I did NOT cry all the way back to Sioux Center, praise the Lord.  We had a couple of happy appointments.  They were delightfully normal.  Will is in the seventy-something percentile for his weight and height separately.  He is in the third percentile for his height and weight combined - he is a tall, skinny dude.  His pediatrician had wonderfully normal things to say about his development, the resident that has been researching things for us had hope-filled things to say about Will's progress, the occupational therapist was pleased with his performance so far and gave us helpful tips for more exercises...  Will smiled and gurgled and cooed through every appointment.  Today, when we met with our physical therapist (not to be confused with the occupational therapist - there are so many doctors and nurses and residents and therapists to keep track of these days!), Will scored completely average for his age and development.

A couple of the therapists have tried to get Will to follow a rattle or toy with his eyes - right to left, up and down, etc.  Evidently, that is some sort of milestone for two month development.  Will miserably fails this test, almost every time.  BUT, it is because he is so dang social.  He looks right past the toys and just hams it up smiling and cooing and whoever's face is in front of him.  Now when someone's FACE moves right to left, up and down, he aces the heck out of the test.  Silly boy...

Anyway, we have a ton to be thankful for.  We have plenty of exercises and appointments to continue to stay on top of, but for now, I am just dwelling and rejoicing in some of the normalcy.  I am making a Shutterfly book with Will's pictures to celebrate.  I am also telling the Lord how fantastic He is - often.  In the midst of the rejoicing and the yucky stuff He is just as good and faithful as ever.

Speaking of the Lord's faithfulness, I sang this song at Mark and I's wedding 2 1/2 years ago.


Sunday, June 23, 2013

Dear Will - Two Months!

Dear Will,

Happy Two Months!  You made it!  Hooray!

You are still as smiley and as social as ever.  

Your hair is cah-razy...  You have the hair you were born with - which has turned really blonde - plus new hair that is coming in and pushing ALL your hair straight up.  No matter how hard I try to comb it down, you always look like you stuck your little finger in a light socket.  

We are slowly transitioning into cloth diapers...finally!  You initiated the new diapers well - with some snazzy blowouts.  

You just hate tummy time.  It breaks my heart to have to force you to do your exercises and physical therapy so much.  I hate, hate, hate making you cry.  I think your neck is growing a little stronger, though, so we are so excited for you!  Keep working hard, buddy.  We're proud of you!

You went to another wedding this weekend!  You met lots and lots of your daddy's friends.  And, you were so well-behaved!  What a gentleman you are...  

You are still really long and skinny, but I think you are plumping up a bit in your cheeks and thighs.  I'm anxious to see how much weight you've gained!

You are still sleeping pretty well at night.  You scared me about a week ago when you slept a full 8 hours!  I woke up scared, ran into your nursery and thought you'd be dead.  Silly me - you were just snoozing away.  Normally, you only wake up once during the night to eat.  Good job.

Somehow, we've started to call you Bug.  You're our little Will Bug.  Mr. Bug-A-Boo!  

You are such a morning baby.  You wake up with smiles and coos.  You are so your daddy's boy.  How about you chat with him for a few hours in the AM while I keep sleeping??

You are really turning into a little man.  Before, it seemed like you were a teeny, tiny, fragile, little creature...but now, you are turning into a real little boy.  Oh, how we love you!


Tuesday, June 18, 2013

On Second and Third Opinions and the Battle for Truth

At the end of last week, we went to another pediatric neurologist for a second opinion on Will's treatment and medications.  

First of all, it still seems like a huge undertaking to get an eight-week old to Sioux Falls and back - even if it is only for one appointment.  What an adventure!  :)  

Second, the neurologist confirmed that we are on the right track for Will's injuries.  He told us more information about his medication that made us feel more at peace about our decisions so far, so we are really thankful.  

Third, (hear comes my little rant and pity party - don't say I didn't warn you!) even though we were very thankful for the second opinion, the day still seemed heavy and sad.  The doctor was a little more factual and less sensitive when it came to listing all the consequences of Will's seizures and strokes.  It is no fun to hear that Will's strokes were big ones.  It is no fun to hear that developmental delays and things like Cerebral Palsy are on the list of potential outcomes for him.  It is no fun to hear that his muscles are floppy and that he has low tone.  I knew all of these things in the back of my mind - we really didn't hear any "new" news - but I had done such a good job of locking these sad things up and enjoying having a "perfect" little newborn.  When we go to Will's doctor appointments, we have to rehash the trauma and relive the pain and grief over and over again.  We are reminded that things are not okay.  I am sick of dreading the appointments on the WAY to Sioux Falls and crying on the way BACK from Sioux Falls - full of grief, fear, anger, defeat...

As I was trying to hold back my emotion in the doctor's office, I was telling the Lord how much I wished I could go next door to another exam room to meet with God - face to face - for a THIRD opinion.  I wanted to go into the next room and have the Great Physician tell me what He thought of Will's condition, what plans He has for our baby, what the prognosis will be...  I have a feeling that the third opinion - the Lord's opinion - would be much more full of hope, mercy and grace.  I have a feeling I would have left that appointment with happy tears and much more peace.

I know this is silly.  All I have to do is pray and listen for the Lord's thoughts in regard to Will.  I know He has already spoken so many words of encouragement and hope into our lives.  I know He has already planned beautiful and supernatural things for our baby.  But it is just so, so hard to remember all of these things in the face of such darkness.  

I told Mark how I feel like the fight for Truth has been harder than it's ever been in my life.  I am weary from the battle.  I am weary from constantly fighting to believe that Will's future is hopeful and bright, fighting to believe that the Lord can and will heal Will in miraculous ways, that He will give Mark and I the grace to get through each day...  I am fighting to believe that the Lord will give me enough strength to push Will and to coach him well through his physical therapy (even though I am a wuss and want to let him stop the second he starts crying).  I am fighting to believe that God's plans for our family are good despite the fact that almost everything on every front in our lives continue to be stressful and tough.  I am fighting to believe that God does want to heal Mark, who is really struggling with sciatic nerve pain (and has been for six months, progressively getting worse), and that His grace will be sufficient in the meantime.  That God will continue to provide financially in the midst of the medical bills.  That the Lord will strengthen our marriage, even in the midst of so much stress.  That I am a good mom, despite the fact that I still can't produce enough milk for Will...  That I will find meaningful community and friendships, despite not having time for any "extra-curricular" fun activities.  That I am beautiful to both God and Mark, despite the fact that I've lost, like, hardly ANY weight since leaving the hospital...  Blah, blah, blah.  You get it.

Oh, how I need the Lord's perspective in the midst of so much darkness.  I need Him now, more than ever.  And, yes, that is such a good thing.  Do you remember the old hymn "Turn Your Eyes Upon Jesus?"  Mark reminded me of the lyrics a few days ago.  Turn your eyes upon Jesus, look full in His wonderful face, and the things of earth will grow strangely dim in the light of His glory and grace. 

Yes.  I would like these earthly things to grow strangely dim.  I think I need to be looking at the Lord a bit more these days.  


Tuesday, June 11, 2013

Dear Will - Seven Weeks

Dear Will,

You are almost 7 weeks old now.  

You are growing fast!  You are over 10 pounds, and starting to fit into 3 months clothes...except for pants.  You have a tiny waist and no butt.  

You are SO smiley and social.  If I had a nickel for every time someone commented about how social and interactive you are, I'd be a millionaire.  You don't really care about toys - you just want to look at people's faces, smile at them, and coo and gurgle your stories to them.  Sometimes you stop sucking your bottle or nursing, just to take a break to smile at me.  When you wake up on your own, you are super smiley and happy.  When I wake you up, you are very, very grouchy.  

The braces on your hands (see pic) are working well!  Instead of you clenching your thumbs into your fist, you are relaxing your hands more, and sometimes your thumbs even go outside your fist now!  Hooray for occupational therapy and little therapy gadgets.

You went to your first wedding last weekend!  You were so good.  Your buddies, Grant and Emily, held you the whole way through so that daddy could usher and mama could sing, and you didn't make a peep.  Good job.

You sleep very well at night.  Last night, you went to sleep at 9 PM, woke up at 2 AM to eat, and slept again until 7 AM.  You are so nice.  You must know how important mama's sleep is to her.

We are doing tummy time like crazy, and I think your neck is getting stronger!  Your physical therapists are helping us with lots of exercises and ways to help you grow strong and big.  I have started to do massage with you, too.  I think you like it - but only because it is another opportunity to smile and talk to each other.  Well, I take that back.  You  like it when I massage your legs, but your toes are ticklish, I think.  I will try not to tickle you so much in the future, okay, buddy?

You have a major receding hair line.  Your head is growing faster than your hair, so you are getting a mullet, kind of.  Classy.  Good thing you are still adorable.

You spit up...a lot.  I am doing laundry like crazy, and I make you wear a bib almost all the time.  You are a happy spitter, though.  After you puke, you usually smile and think it's funny.  You are SUCH a boy.

We have more doctor appointments scheduled for you to talk about your medications and to get some second opinions on some things.  I am trying to research your conditions and your meds so we can ask good questions.  We don't like having you on such strong medication and are nervous about its side effects.  We are also pretty skeptical about giving you your two-month vaccines, but that's a whole other story.  We are praying that God would help us make good decisions for you, little man.  We are doing the best we can!

We love you, so, so much, Will!  Happy 7 weeks.

Love, Your Mama
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