Happy New Year

Happy New Year!  I am so ready for a new year… It's going to be a great year.  Full of energy, life, memories, snuggles, wildness, homework, dance performances, baseball games, realistically- many, many doctor appointments, but prayerfully, all of us under one roof, safe and as healthy as we can be!

Not sure when my living room turned into a baseball field-  boys!

Even he was in on our New Year's Eve fun; whereas, she was not so much! 

An exciting end to 2013:  Carole Robinson, with our local newspaper, the Williamson Herald, wrote an incredible story about us and published it in the paper that was distributed after Christmas.  When I was contacted, I agreed, hoping it would bring awareness about congenital heart defects, in particular HLHS as well as show what an incredible community we live in.  After reading it, I know that God's hands were all over Carole's words.  It was beautifully written and brought tears to my eyes as I read it.  The kids were so excited to see themselves in the newspaper.  

Merry Christmas

Merry Christmas!  What a glorious celebration we've had.  There's been such excitement in the house mainly because they love that we are all home, with the focus on Christ-- not completely focused on Caleb's condition, being worried, doing work, or even cleaning up!  As I rocked the baby to sleep on the eve of his first Christmas, I thought about how Mary must've felt (the song "Mary Did You Know" was running through my head).  It was a special calming time Jesus was giving me and my frequent reminder that he has great plans for us.  

I meant to write a post over the holiday about the Christmas music.  This season, I was in the car a lot more than normal driving to and from the hospital.  I found such joy in the words of the songs.  Many days, I found myself singing quite loudly one second and bawling the next.  My favorite song was "Joseph's Lullaby"-  I would sing it to Caleb over and over.  Something about it gave me courage and peace.  

We do have daily scary moments.  I don't know that I will ever have a day go by that I don't find myself staring at his breathing/ looking at his coloring/ questioning if all is okay.  His coloring is blue and he is always "crunchy" sounding-   I guess its just the extra secretions that he has trouble clearing like a typical child does.  He gets choked up on them and at times seems as if he can't breathe and is suffocating-- very scary!  I just need someone else to say- it is or isn't okay.  I'm so thankful for best friends and neighbors that have done this for me when Zack wasn't home.   It's going to be a LONG winter season.  Thankfully, he hasn't had any seizures-  we have an appointment with neurosurgery tomorrow.  The glue is starting to come up on part of the incision.  He acts as if it is still very tender and has cried out a couple of times when something has touched it.   I'm trying to work on his tummy time tolerance.  He still doesn't last long.  I find it hard to find minutes to do this when he isn't eating (hooked up to the feeding pump), getting meds, had a fully belly, or just acts as if he doesn't feel good.  I'm working on getting past that excuse (it's an excuse because I don't like to see him act upset).  We have to build up his neck strength. 

We've played lots of board games (we have the King of Monopoly over here), jumped on new pogo sticks, been crafty with a rainbow loom, and now on to cleaning up from the chaos!

All the kids (Aunt Courtney and Uncle Robby are big kids, too) ready to run downstairs to see if Santa came!

Hospital admittance

Baby Caleb had to be admitted on Friday to the hospital.  He's had a cough for the last few weeks, but he actually stopped breathing briefly two nights in a row from secretions that he couldn't get up.  His cough is very weak and actually not "sick-like")-  more as if he's too tired to clear it.  He did another 24 hour EEG to monitor if he's having seizures and it looked good.  They are going to start tapering off phenobarbital and he'll be off it in two weeks and are adjusting another med's dosage times.  This should help with his lethargy-  which they suspect is causing the "cough".  He is getting discharged today.

Discharged!

Little buddy is home!  We got the best Christmas present with Caleb getting discharged.  Now our goal and prayer is to keep him healthy and home! 

Visit with Santa

Santa Claus came to visit Caleb!  He smiled and reached for his beard.  Santa gave him his first Christmas present- a doggie.  He loves to rub his ears.  

Our family was asked to speak at the Children's Miracle Network fundraiser for Vanderbilt.  What an honor as well as blessing for us to give back for what this incredible hospital has done for our family.  The kids were so proud to hold up their poster of pictures to represent baby Caleb who couldn't attend.

Caleb had a good day.  He's been stable the last few days, with no seizures.  He is currently on 4 anti epileptic medicines.  He is very alert, responding like normal, & sleeping much more appropriately-- except for his new habit of a 3 a.m. party every night!!

Tomorrow our friend, Nicole, is running her first full marathon in honor of Caleb.  Please pray for her!  She & Caleb share similar personality traits-  very determined   and strong!  I know she's going to be amazing tomorrow, but regardless, she is a hero to our family!

8 Months Old

     Happy 8 Month Birthday to Caleb!  Today was a "snow day" for the kids.  We didn't have any snow, but did have some ice.  We had a great day together, playing games, and then heading to the hospital for a Christmas Carnival.  The kids were thrilled upon arriving that the Titans players and cheerleaders were there!  It was an incredible experience for the kids to not just meet them, but get autographs, hang out with the kids like they are all buddies, and even play ping pong and basketball!
     After, we went to visit Caleb.  The kids made a birthday sign and couldn't wait to show him all the pictures they took of their Christmas decor at home.  He was sound asleep (medicines cause this) the entire time we were there (which was a while), in spite of their hard core attempt to wake him, too.  We were sad, but blew him plenty of kisses and left him watching a fun cartoon they picked out for him.
     The kids were then on the Children's Miracle Network Radiothon.  I was on it yesterday and they thought I was famous because they heard it from home on the radio!  So today was their turn… and they did fabulous.
     Once again, not our typical "snow day", (they really wanted to stay home in their jommies and just build forts and drink hot cocoa) but nonetheless, God has different plans for us right now and today turned out better than ever!

Aftershocks

Caleb had a slightly better day today than yesterday.  He's on the floor now.  Since surgery, he has made little response to me--- if he wakes, he stares as if he's lost and looks straight through me.  It's been very upsetting.  I've been told its likely just from the medicines he's on (he's on mega high doses of 4 anti seizure meds) but only time will tell.  He acts "stoned" all the time.  But prayerfully, with time, they can come off a couple of the meds and he'll "be Caleb" again.  I just miss his personality.   He also has been more agitated, which we suspect from feeling this way.  Today, there were two times that he made a little smirk, which brought tears to my eyes.  At times, I felt like he was purposely looking at me!  He continues to have quite a few seizures (we are calling them "aftershocks") that have each stopped within 2 minutes without intervention.  Please keep the prayers coming that his sweet personality returns and that the seizures stop.

I caught one smirk on camera!  They brought him toys today and he tried to play at times.