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.

Sibling visit and Christmas Program

The kids were really missing their brother so we let them come visit him at the hospital.  They also got to see the lighting of the hospital Christmas tree (& were chosen to help flip the switch) and an excerpt from the Nutcracker Ballet!  Caleb has opened his eyes a couple of times, but not for long.  When they touched his hand, he looked up and smiled!!!!!   Such a special moment!!!   My heart melted.   He had a couple of seizures overnight and two today.  Much less, and they are not surprised since he still has blood in his brain (they couldn't extract it all and over time his body will have to absorb it) & he just had brain surgery, so the irritation and inflammation will cause continued seizures for a while. 

Yesterday, just after finding out that he was to have a craniotomy, they asked if I wanted his whole head shaved or just where they had to--- I said, the least they had to.  They saved me some hair from his "first haircut".

 

Out of surgery- Craniotomy

Caleb is out of surgery and recovering in the PCICU off the vent.  They had planned in doing a burrow hole, but told me just prior to taking him off that the neurosurgeon wanted to do a craniotomy.  This was quite a shock to me.  Maybe it was just that I wouldn't have time to process it that was emotionally affecting me, but I didn't take it well.  The blood that was removed was older than he expected and membranes had formed.  He wasn't confident that this would solve the seizures.  They put a JP drain in.  An EEG will monitor for any current seizure activity.  Please pray it has been resolved.

On a different note, our elves arrived prepped for brain surgery today with their EEGs!

Neurosurgery Tomorrow

Caleb's seizures have not been able to be controlled with meds.  He will have surgery tomorrow first case.  The neurosurgeon will burrow drill a hole in his skull to drain the blood and them will place a JP drain in.  Our Lord will hold Caleb's hand, guide the surgeon's tools, and carry Zack and I---  once again.