Saturday, July 20, 2013

Caleb teaching God's word


A letter written to Caleb from my dear friend Erika, whom I am so blessed to have in my life since that first day we met in freshman high school English! 


Dear Caleb,
What a gift you are, sweet buddy!  We are so grateful for your life!  We love your sweet smile, and are so encouraged by your enduring fight.  Though we haven’t yet had the chance to play or to snuggle, we feel like we know you well, because even before you were born you have invited us to pray, and to hope, and to be glad that even as you struggle, God’s promises are true in your life and in the lives of those who love you.  You are our favorite missionary, and we wanted to tell you thank you, for even though you can’t yet talk or walk, the story of your healing heart has ushered us all into some healthy perspective on who we are and on who God is, and has also given us a sweet reason to want to be with Him, asking Him to strengthen you with each passing day.

You are a treasure of a baby, who, just like everyone else, by no circumstance of your own, is a victim of the brokenness of the Fall, and yet at the same time, you are covered by the grace of a really good God.  Most days as we watch your family suffer alongside you, it is hard to trust that God has something rich for you all in this, but when I talk with your Mommy, it becomes clear that He is moving in the hearts of the people who love you most in ways that are surprising and delightful, and most importantly, in ways that close the gap just a little more between who they are and who God wants them to be.

Your Dad shared with all of us not so long ago the reasons why he and your Mom chose the name Caleb for you.  Caleb means “whole-hearted” in Hebrew, and it feels like such a perfect choice for what we might call you, and for what we might all strive for in our own lives as well.  Last week as my family prayed for your upcoming surgery around our breakfast table, our Daddy used the story of your namesake Caleb to help teach our kids about having courage to face our giants (which is something you have had to do your whole life).  The twelve spies (who were, in our version of the story, very small Lego men) went to scout out Canaan, the land that God had promised them that was flowing with milk and honey (also in abundance at the table).  When the spies got there, they were amazed!  Even the grapes were huge!  Unfortunately, the people were also huge--Giants!  (Cast by some of our other favorite, larger toys hanging out close by).  The Giants made the spies feel like grasshoppers, and they were afraid.  They came home and told Moses what they had found, and they grumbled and complained to God and each other, even though God had already promised them the land.  God asked them, “How long will you refuse to trust me?  And with all these signs I have done among you!?” 

And then God says of Caleb, willing to follow Him and face the Giants,  “But my servant Caleb---this is a DIFFERENT story.  He has a DIFFERENT spirit.  He follows me passionately.  I’ll bring him into the land that he scouted and his children will inherit it.” (Numbers 14: 24)

We all feel like grasshoppers sometimes.  The truth of the matter is, it doesn’t take much to make a grasshopper feel small.  But the bottom line is, we belong to the Lord.  You, Caleb Daniel, have reminded us to remind each other of that Truth.  God has begun a good work in you (and in all of us!) and promises to complete it.  You remind us to be aware of the giants, to be big (whole-hearted), and to believe that God is good!

As I talk with your Mommy on the phone while she holds you, loving every minute of that and yet missing your brothers and Kate and your Daddy at home, she tells me all the time that she just doesn’t want any of this journey to be wasted.  She walks with you, expectantly, trusting God to heal you, and also hoping that your family will know Him better because of your story.  She gets overwhelmed about how to actually help that happen for your family, but maybe just like Caleb in scripture, all she can do is to know the giants are there, to remember to be big (she will do what she can to be a godly parent for all 5 of you), and to believe.  She can’t be Jesus, but she sure can need Him, and as your family and friends watch her NEED Him every single day, her witness points strongly in the direction of Christ, those who are watching see that, and as she lives out her need for Him, she reminds us all of some timeless truths.

Sweet Caleb, as your Glenn surgery becomes more necessary and more immediate because of how your body is growing, we pray that the Lord will work, using the doctors’ steady, capable hands and brilliant minds, to reconstruct your heart.  We are cheering for you as you battle, most of the time with that classic, beautiful smile on your face, and we give thanks to God that one day all the things that are sad and scary will be untrue.  Until then, your family is doing an amazing job reminding us to trust that as God does good work in you, little man, He is at work in all of us.  He promises.

We love you.  Thank you for inviting my children to pray for you every single day.  Your heart is on our hearts, and our hearts are made just a little more into His likeness because your heart leads us there.  Face that next giant, Caleb!   We are all cheering for you to be big and be whole!  Thanks so much for being such a powerful instrument of truth in this world…

With love from a grasshopper made a little more courageous because of you,
Erika (for all of the Shapiros)

Sunday, July 14, 2013

Drop in Sats

The last couple of days have been rocky.  His color is overall more dusky, he has been eating much less  (by bottle) and even refusing the bottle at times.  His sats have been dropping and staying in the upper 60s-low 70s.  He is on .5 liters of oxygen.  All bloodwork. X-rays, and an echo look unconcerning.  This afternoon he had two big dips into the 40s, had to go on blow by and oxygen increased to 1.25 liters for an hour.  During this episode, he didn't change color and was even smiling at times.  He has since been weaned back to .5 and is sating low 70s.  It is challenging to not have a "reason" for these behaviors outside of these are the ways his body is showing he's getting ready to need surgery.

Friday, July 12, 2013

Cow Day

     We've had a rough day dealing with reflux.  Increased the Reglan medicine- prayerful that helps.  I think his little body is getting closer to needing the Glenn surgery.  Today is Cow Day at ChickFilA.  We have made this our family holiday and go all out.  I took the kids early this morning.  We were actually the first ones!  I had to commemorate Caleb's 1st Cow Day!  Next year, he'll be 1st in line at the restaurant.  Zack didn't want to miss out so he created his cow costume and took them tonight for free combos!







Wednesday, July 10, 2013

3 Months Old

     Happy 3 Months to Caleb today!  He worked on playing with toys with occupational therapy-  gripping and reaching.  His sats have stayed within range overall.  He dips every so often, but recovers.  He is on oxygen and currently it is set for .3 liters, which is increased from a day ago.  This is adjusted based on his sats.  He is really having a hard time with reflux issues.  He is so tough because it is visibly painful to watch him get startled by it, cough, tighten, and sometimes spit up (projectile), but other times it goes back down.  He cries out but as soon as he is soothed, he is fine.  He's been on Pepcid and Prevacid, which were both increased end of last week.  Today they added Reglan to assist in the reflux.  He's gaining weight- 5.535 kilos (12.177 pounds).
     I was unable to post Kate singing her song on the blog, but I put in on Facebook yesterday if you'd like to hear it- go to my timeline.  :o)



The picture below is from Saturday when Daddy was holding him.  Like father, like son--both staring at the tv-- But it melts my heart to see how Zack is holding his hand.


Sunday, July 7, 2013

"Caleb's Song" by Kate

This may be one of my favorite posts.
     I have prayed throughout this journey that God gives all my children grace to get through these most difficult months.  I pray that he work through their hearts to trust Him in the plan, timing, and outcome of Caleb's surgeries as well as guide them to help others throughout their lives like the surgeon, doctors, and nurses have for Caleb.  I pray that they see the unbelievable support, love, and help we've felt from family, friends, neighbors, and even friends of friends.  Most of all, I pray that they see all of this as a miracle that God is intricately working.
     It has been hard on all of us; however, the kids have been amazing through it.  Bo won't leave my side whenever he's around me and cries every time I leave.  Cooper has actually grown up a lot.  He helps with Bo a lot and I've received many good behavior reports from family and friends.  Jake has enjoyed playing board games with anyone that is at the house.  He's a Monopoly champion and gotten a lot of practice over the summer.  Kate is my creative child that has been designing dresses, creating games, and writing songs.
     After sharing this with the Child Life Specialist at the hospital, she came up with the idea of Kate working with the Music Therapist to write a song for Caleb.  God has blessed Kate with the gift of creativity and talent as well as a strong love for her baby brother and this is such an expression of her emotions.  She wrote and sung "Caleb's Song" as a tribute to him.  I've tried to attach her singing the song, but I'm having trouble.  The beautiful words are below.


"Caleb's Song" by Kate 

What's it like sitting there alone?
You have a very busy house waiting for you at home
As far as I can tell
You like to be held
You're strong and you are breathing on your own

Right now I love to feed and hold you
And I love when we play peek a boo
Can't  wait to give you a bath
Which sometimes makes you laugh
These are some of the things I want to do

CHORUS
Caleb, Caleb what is wrong with you
I don't know what we're going to do
You've been at the hospital all your life
There's happiness and lots of strife


Leaving you and mom makes me sad
But you safe at the hospital makes me glad
Wish I could see you everyday
I pray you will be okay
I'm mad that you can't come home today

CHORUS

I'm thankful for our neighbors and our friends
I hope their kindness never ends


Friday, July 5, 2013

Physical Therapy

     Caleb has occupational and physical therapy alternating days 4 days a week.  He has a tendency to turn his head to the left and angle down a bit.  Suspect is that it is due to his previous plication surgery and he turns away from the incision.
      During therapy sessions, they work on different exercises of the muscles that hold his head up and turn in.  Tummy time, sitting up (with full support), and following toys to get him to turn his head are all different exercises we work on.  Today he had physical therapy and she explained that he has a tight sternocleidomastoid (SCM).  Our goals are:
*Rotation to Right with toys and people
*Headline in midline for sleeping
*Football hold on my left side, 60 second x 3 reps, 3 x / day, using my right hand to increase rotation to the right.

Thursday, July 4, 2013

Independence Day

Happy Independence Day! 
Each of the siblings fingerpainted a patriotic picture to decorate his room. 
He had a fun day but fell asleep on a wagon ride well before the fireworks went off.
The crew came up for a "grill out" inside the hospital.  They loved getting to pick out special ice cream.  Tried to commemorate the day with a pic but its impossible to get the boys to look at the camera.  They always keep me laughing!