Day 20 – Caleb On The Move!

Caleb's Dad ~ 30th November 2010

Today we began at 9:00am with physical therapy, with Caleb working on his walking, as well as standing up holding onto a large drum, as the therapist gave him a drum stick to make noise with. He also played with a toy guitar.  He really seems to love music and becomes very animated whenever he listens or plays with an instrument. And again, he did everything with the biggest smile.

That is one of the things that have really impressed everyone here at the hospital, that is, ever since the beginning, he has had a very peaceful and calm demeanor.  He doesn’t fight against his therapies.  He does let us know when he is uncomfortable and when things hurt.  But overall, he never whines, he almost always smiles, and more often than not, even if he hasn’t gotten his full nap out yet, he still wants to get up and work on walking, or playing, and engaging in fun.

We had an exciting time in our OT today. Instead of working on Caleb, the therapist sat down with us to go over things related to going home! I can’t tell you how encouraging it was to know we were now starting these kind of talks.  He went over a lot of matters related to preparation—things concerning child safety at home, how to move Caleb properly from room to room in the house, how to properly transport him in the car, etc. We came away with a to do list of things to get ready.  I was eager to get the ball rolling so everything would be ready when we get home!

During our first break of the day we attended a round table discussion with all the doctors, therapists, and staff regarding our discharge next week.  The meeting was offered as a way for us to sit down with everyone who has worked with Caleb to get a synopsis of how they think he is doing, as well as give us a chance to ask any final questions.

We really had only three concerns  we wanted to ask everyone about.  We wanted to know about his eyesight, if they thought he had improved, and what they thought his eyes would be like in the future based on everything that had seen.  We also wanted to know about his wheelchair, whether he would have to go home in one or not.  And then we also wanted to know about his g-tube and Fundoplication.

Concerning his eyes, they stated that his eyesight had improved greatly.  They said that compared to what it was when he first arrived, where he reacted little to any outside stimulation, he now reacts all the time, even tracking things in most of his field of vision.  They said they think as far as trending is concerned, he will most likely continue to regain his eyesight over time, hopefully regaining most, if not all of it.

As far as the wheelchair is concerned, we received some great news!  Kristen said that after speaking with another therapist, they believe Caleb will be walking soon and he will not need a wheelchair!  We are so thrilled to hear this. It is so hard to believe that the other day he was not even able to hold himself up, and now he is not only standing on his own, but he is even walking with assistance, and even wanting to run at times!

As for the g-tube and fundoplication, the reason why we were bringing up a concern there, was because a few days ago when Caleb was getting his meds, Tiffany had been trying to give them to him by his mouth.  He didn’t like the taste of one of the medicines and when he started to gag, he took on air and because of the fundoplication he was unable to burp and get the air out of his tummy.  It made him gasp and, left us for a few moments, pretty frightened.

We were able to open up his g-tube to let the air out, but it left us with the question…what do we do, if he does this later after he no longer has the g-tube? The doctor there at the time said  he would have to look into that.

I later called Dr. Carr, the doctor who performed the surgery, and he stated that, for the first three months most people who have a fundoplication surgery cannot burp, but that over time they get that ability back.  He did reconfirm something he did say at the time of the surgery. Caleb would lose the ability to throw up, which obviously has some pluses and minuses to it.  But he told us not to worry, that everything would be fine, and  if Caleb continues to not need his g-tube over the next month, then they will remove it. Good news to our ears!

We next met with a car seat specialist, (I know from experience that car seats can be pretty hard to deal with, but man…a car seat SPECIALIST!) It turned out we needed a specialist because the name of the game was to make sure that we, (I at the moment), could get all three car seats in the car, safely, according to standards needed to properly transport Caleb back to Nashville. We had been given a special car seat for Caleb that was a little bigger and bulkier than we are used to, and the Tetris game we played to try to get those car seats in the car was nothing short of exhausting!

After about an hour and a half of no success, I gave up, showing the specialist my white flag, assuring her that we would be transporting only Caleb back to Nashville and that once there, we will figure out our transportation! Minivan…looks like you are going to be coming sooner rather than later!

The really big news of the day came when, after Caleb’s nap, we went to speech therapy.  After Caleb played with some bubbles, again happily popping as many as he could, the therapist decided she wanted to work on seeing if he could crawl. Up until this point every time we have tried to get Caleb to crawl, he has shied away from it—often wincing and retracting out of the all fours position due to the pain and discomfort of it.

We had thought that he might simply skip the crawling phase, as he tends to want to just work on walking anyway.  Regardless, if he skipped it or not and started walking, the crawling itself would  be very good for him, to work on his upper body strength, which was the reason why the therapist wanted to see if she could work on it.

The therapist laid the mat out and had Tiffany get on the other side of it with a toy.  Tiffany motioned to Caleb and asked him to come and get the toy. Caleb hesitated at first, as the therapist was positioning his legs and arms into the all fours position. After a moment, (perhaps because Caleb caught a glimpse of the toy and really wanted it), he actually took off this time!

He placed one knee right in front of the other and moved his arms and hands accordingly.  It was only a few steps, but it was enough to confirm to us he could, in fact do it, and he was improving as far as his upper body strength and coordination was concerned.

The therapist worked on his crawling a few more times, with the last few being where Caleb would crawl to mommy.  He did excellent.  The rest of the session was spent working on his walking, (again taking a trip to the turtle tank), as well as doing some work on the big ball working on his balance.

The rest of the afternoon saw Caleb feeling pretty tired.  In OT, he played with a number of toys…a little plastic microwave and dishes, etc.  He played ball some, as well as, played in mommies lap. He enjoyed it when she would hold him by his hands as he was sitting on her lap facing her, and then letting him fall backward as Tiffany gently let him down with his arms, and then slowly coming back up. Caleb has always loved doing that!

In music group, Caleb sat on a little bench just his size with one of his new friends, a little girl.

As I mentioned before, Caleb has been feeling pretty tired tonight, so for the rest of the evening we pretty much relaxed and played spontaneously.  Caleb sat on the little fold out couch with mommy and played with her for a while, and what was beautiful tonight, and something I wanted to post here, was that when you looked at him, you really couldn’t tell anything was wrong.  He was completely looking and acting just like any two year old.

He kept acting funny by doing the wawa, (the little thing I mentioned before, where he takes his hand and moved it over his mouth real fast to make an “Indian” sound).  He also started doing this funny little clicking sound with his tongue, almost like the sound one makes often when they wink at someone. He started doing this yesterday and I noticed he has been doing that a lot lately. I’m not sure where it came from, but it is sure cute to say the least!

To mention a few other things about tonight…he has been trying to talk a ton! Not everything he says is legible, (really only a handful of words have been understandable), but that doesn’t stop him, nonetheless.  He will make noises with his mouth, often at times when you would expect him to say something along with his playing. Tiffany and I are pretty convinced with the sounds he is making, he is trying to talk.

A number of people have asked us whether Caleb could talk any before the accident. Our reply has always been unanimous— “Yes!” He was a little chatter box to say the least.  He, of course, spoke in all the cute ways any two year old does, getting words mixed up, saying things that sound cute to mommy and daddy’s ear.  He had even started to string words together to make little sentences…things like “I want go aside,” “I wan a dink,” or “That yummy in I tummy.” And of course, my favorite of them all, “iiiiiuuuuuu” for “I love you.”

I remember one night, just a couple of days before we left to go on our trip, Tiffany and I had been out shopping getting a few things in anticipation of our trip. I sat in the car with the boys while Tiffany went to make a quick run in the store.  Colby was sitting in his car seat on the passenger side playing with one of his toys.  Connor was in the middle, turned facing backwards.  He had been a little fussy that night as it was already late and past his bedtime. Caleb was directly behind me on the driver’s side.

Caleb had been asking me for a drink and so I turned around and reached back, giving him the small bottle of water I had been drinking.  He took a few drinks and then proceeded to tell me that he was all done.  It was at that time that I began to hear Connor cry.

I looked back and soon realized Caleb had sit the bottle of water upside down in Connor’s car seat! Poor Connor was screaming because he had cold water running all up under him, and little Caleb was saying “Saweeee.”

A couple of days later Poppy, (the boy’s grandfather), was talking to Caleb on the phone and the entire time, Caleb was going on and on trying to tell Poppy about what he had done to Connor.  Most of what he said you couldn’t recognize, but you could sure hear it when he said his brother’s name.

Hearing Caleb talk and go on and on about things has been something that we have missed tremendously.  Hearing him say a few words here and there has been such an encouragement to us reinforcing our hope that he will one day talk again.

As I looked over at Caleb, as he was playing with mommy on the couch, for the first time I could hardly tell that anything had ever happened, save he was not talking as much.  He giggled and laughed, he played by himself and with Tiffany, and for the first time tonight we saw Caleb get his sense of humor back.

Caleb, like all of us in the family, like to act goofy with each other.  And, as I was watching him play I would see him do things like making little funny snorting sounds with his nose and then laughing about it.  He started doing it and when Tiffany and I realized what he was doing we both couldn’t contain ourselves. We laughed right along with him!

It’s times like these that I cherish.  It truly is the little things that count in life.  As I get ready to go to bed tonight, a thought entered my mind—a memory.  In our home we have a plaque which hangs above our entry way into our living room—the place where we spent so much of our family time.

The plaque reads, “Live Well, Laugh Often, Love Much”—what a tremendous motto for a family to live by. I can’t wait until we step foot inside our door again, to not only see that plaque, but to live its sentiment for the rest of our lives.

Please continue to pray for Caleb’s eye sight and speech.


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  1. Chuck Payne

    December 5th, 2010 at 4:10 am

    Tim and Tiffany, I can’t tell you enough of how special your family has become to ALL who’ve been following Caleb’s story. For me, I know the sorrows and the fears that you’ve overcome thru faith and I know the joy and the songs of praise that you offer to be going home. I can’t tell you what it has meant to so many of us for your allowing us to join you and to be part of your lives… and without question, I know that the feeling is mutual. You guys are amazing and regardless of where you will lay your head at night, our prayers will be there with you and your precious family. We do love you guys and we will continue to see you home and beyond…
    “We have no choice but continue to carry you… you have our hearts.” May God Continue to Bless your family, in Abundance! – Chuck P.

  2. Pam Demonbreun

    December 5th, 2010 at 5:53 am

    Just a fellow sister in Christ praying for you all.

  3. Heather Centracchio

    December 5th, 2010 at 7:26 am

    Sweet little Caleb has impacted thousands of lives!! Satan was foiled in his plans to bring your family down! This reminds me that bad situations if left to god can be turned around in ways we can not imagine!! Who would have thought a month ago Caleb would be going home.. and going home being able to walk and eat on his own. It is amazing! I think once you do get him home with his brothers he will heal Sooo Fast! We continue to pray for you all!

  4. Nicole Lester Russell (Murfreesboro, TN)

    December 5th, 2010 at 1:35 pm

    I really love reading all your posts, but a theme I see now is that Caleb now enjoys his music therapy…WONDERFUL! I can remember just a few days ago, you were telling us that music therapy was where you all had seen Caleb participate the least and to pray that he come out of his shell more and be more aware of his surroundings. Well, it seems that your (and our) prayers are certainly being answered. We are avidly praying for Caleb’s eyesight, as well as his continued recovery overall.

    Love from Murfreesboro,
    The Russells

    • Tim Brown

      December 5th, 2010 at 2:01 pm

      Nicole I was just thinking that today. When we began he was usually so tired he didn’t want to do anything, and he really didn’t know yet how to do anything. And today he was dancing and clapping! So so wonderful. Thank you for your prayers!

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