Day 13 – Caleb Says His First Words

Caleb's Dad ~ 23rd November 2010

This morning Kristen, Caleb’s main physical therapist, met us with some great news as we were groggily getting up and getting ready for morning therapy.  She came bouncing in our room with a new wheelchair. “Caleb is graduating today,” she said.  “Really? How’s that?”

She went on to say that the older chair that he got when he first arrived is specially made for people who cannot sit up on their own.  They are made for people that have no muscle tone, who have to be repositioned every 30 minutes, who have to have their head supported by foam padded wings that cup each side of the head, that have padded wings around the torso to keep the person in the chair safe and stable.  In her words, “Caleb is beyond all that now…he needs a big boy chair!”

The new chair is smaller, with no restraints whatsoever, other than a small seatbelt, not to keep him sitting up, but to keep him from wiggling out!  It feels strange to celebrate such victories as “You’re son gets a new wheelchair today”, as the very sound of your son being in a wheelchair is enough to bring you to your knees in tears.  But, we have learned to take each day’s successes as just that…successes, and blessings.

In occupational therapy today, Caleb was given the task of doing sit ups.  The therapist placed him on what looked like two big rubber balls that were joined together in the middle. She began rocking him back and forth, playing with him a little, getting him accustomed to the feel  of the bouncy surface that was under him. After a few moments he seemed to half way like the idea of bouncing on the ball.

Once his face seemed open to what might come next, the therapist then moved her hands up from his hips to his hands that were outstretched in front of him.  “Ok Caleb, we’re going to lay back on the ball.” She moved him back to a position where he was lying on the ball.  He didn’t seem to like it at first.  I would imagine any movement like that with the limited amount of eyesight  he has would be scary for anyone.  I know it would be for me.

After he was securely laid on the ball, she then prompted him to sit up by pulling gently at his arms.  He tensed up his stomach muscles and responded to his direction to sit up.  “Sit up little guy.  Come on…you can do it!” Caleb scrunched up his face, and with every effort he had, (while depending a lot on her effort as well), he moved upward, first to the left, then with a few grunts, he moved  to the right, and then finally he was back up in sitting position again on the ball.

That was number one.  What Caleb didn’t know was, he was doing sit ups.  And so, the therapist went on to repeat the exercise four more times, assisting him each time.  As I watched, I simply saw him go up and down, for a total of 10 reps.  I was surprised to find out that it was only the first five where she assisted him by pulling a little on his arms.  The last five he did on his own, and in her words, “He did great!”

Caleb had been doing fine until the last couple of reps. On the last one, he got to sitting position and then started to cry.  If you know Caleb as well as I do,  you know that, like most children, they have different cries.  Some are cries when they get in trouble, some are cries when they get their feelings hurt, and some are cries when they are in pain.

This was definitely a “I’m in pain” kind of cry.  I realized quickly the source of his discomfort.  It was the area of his g-tube again.  Ever since the beginning when he became aware of his G-tube, Caleb has cried in pain every time you mess with that area on his tummy. The doctors have looked at it and have concluded that it is not infected, but that it is inflamed, and probably just sore.  They gave us cream to put on it, but you wish  there was something more you could do, especially when you see him hurting like he was.

After Caleb calmed, it was time to work on some fine motor skills. As I think I have mentioned before, one of the things  they really want to see Caleb do before he goes home is, they want him to engage in things like clapping his hands on his own, putting objects into other people’s hands, crossing over hands, (in other words, reaching from the right to the left to pick up something or put something down, and vice versa).

In physical therapy, we worked much of the same kinds of things  we have been working on; standing, walking, standing while rolling a large ball, working transitions on the mat.  One thing that has become clear is that Caleb hates to be on the all fours and high kneel position. He simply hates it.  It doesn’t matter what time of day it is, before or after nap, before or after mealtime, etc., every time the therapist tries to put him into one of those positions he fights against it. The therapists usually tire of him wiggling out from under them, so they usually just give up. The last one said, “Oh, well, he just wants to walk.” They, (and we), continue to work on those positions.

In speech therapy we had a chance to see Caleb, yet again, do some things we hadn’t seen him do before. After spending some time getting Caleb interested in what the therapist was about to do, showing him the various toys that she had brought for him to play with, she began with showing him a book.

She started reading the book to him, prompting him to turn the pages of the book.  This is one of the things  I get to look at and see the stark difference in how Caleb was when we arrived here and how he is now.  When the therapists first tried to get Caleb to turn the pages of a book, he was unable to, barely even able to lift up his arms.  Now he turns the pages with relative ease, even with both hands!

Next in speech therapy it was time to sing some songs.  Caleb, as always, loves to sing as well as dance.  One of my fondest memories is watching our kids dance and sway whenever they would hear music on TV or the radio that they liked.  Caleb loves to dance and sway his little bottom back and forth.

The first song of the day was “If You’re Happy and You Know It.” Caleb actually tried to clap on his own.  He moved both hands up and tried to bring them together.  He has not become coordinated enough yet, so when he moved his hands close to each other they missed each other and landed on his arms, opposite each other. That certainly didn’t damper his mood as he smiled, laughed, cooed, and kept on participating. He also tried to stomp his feet, moving his legs up a little, trying to make the stomping motion with the song.

During the next song we tried to coax Caleb into saying words by leaving out some of the important words of the song “Old McDonald.” As we would sing and stop, Caleb tried to fill in the blanks with his own input, saying a loud “Ahhhhhhh!” in between.  Caleb definitely knew there was supposed to be a word in between and he tried his hardest to fill it in. And again, he was very happy during all of this.  Smiles were beaming.

After a few songs, the therapist pulled out her bottle of bubbles. The purpose of the bubbles in therapy is not only because the kids love it, but also because it helps the kids work on their vision.  As they blow the bubbles the therapists encourage the kids to pop the bubbles, which in order to pop them, you have to first be able to see them.

So, it encourages them to look for the bubble, engaging that part of the brain, then focusing on the bubble, and then engaging the part of the brain that controls motor skills, working on his ability to swat at the bubble to pop it.

She started blowing bubbles saying, “Come on Caleb, let’s pop the bubbles!  Come on…come on…let’s pop them!” Caleb was ecstatic. He flapped his arms wildly trying to pop as many of the bubbles as he could.  He vocalized at will, over and over again, until he said something that sounded just like the word “pop!” “Did he just say pop?” “It sure sounded like it,” the therapist said.

He kept vocalizing excitedly, saying, “Ahhhhhh!” while laughing, as his hands were moving around trying to get to the bubbles. After each blowing of bubbles the therapist would say, “Ok, Caleb do you want more bubbles, or are you all done?”  After a couple of times asking him this, he grunted and made a sound that could almost sound like “more.” “Oh my goodness, I think he just tried to say more!” The therapist agreed.

She said  he is really trying to talk today.  As the next set of bubbles slowly drifted down in front of Caleb’s face, he reached up with his hands, popping one right in front of him. He was very excited to be able to do this, as we were excited that he had enough vision in his center line of vision to be able to see the bubble.  We all celebrated his success with him, saying “Yaaaaay!”

After speech therapy , when it was time to go, Tiffany moved herself in front of him and said “Come on Caleb, let’s go”. And Caleb did something for the first time that melted her heart…he reached for her. Again another first.  Up until this point we have asked Caleb to reach for us, clapping our hands, saying, “Come Caleb, let’s go.  Come one…” holding our hands out, making a “come here” motion.  And up until now, he had just sit there, being unable to coordinate his movements to move his arms up.  But this time, when mommy said “come on sweety,” he reached for her.  I loved seeing that and seeing her face when he did it.

The rest of the day was spent doing many of the same activities.  We played with more bubbles, allowing Caleb to swat at them.  He was able to look at mommy once as she was blowing the bubbles. During our, sometimes 30 minute, breaks in between therapies, I worked on some speech and sight therapy. In one of the afternoon therapies, he reached and grabbed a toy out of one of the therapist’s hands. He practiced walking, and again, did well, bearing his weight and placing each foot in front of the other without a lot of crossing of the feet.

Later in the afternoon, in music therapy, we saw Caleb do something I mentioned earlier in this post.  While in the midst of the excitement of such songs as “If You’re Happy And You Know It,” and “Five Little Monkeys,” Caleb began to shake his booty! He swayed back and forth to the music.

I had been holding him up, allowing him to stand through the therapy.  This is something the therapists do sometimes, combining physical therapy with music therapy. So, I held him up, and while standing I began to feel him move.  I braced my hand tighter under his belt that was around his chest, (a special belt he wears for the therapists to get a better grip on him when they are working with him).

However, when I looked down to see if he was losing his footing, his stance was just fine.  I found that he was moving his body back and forth. “He’s dancing!” I laughed in joy, and quickly got Tiffany’s attention.  We enjoyed seeing our little man get so involved with the music.

We didn’t do much the rest of the evening. Caleb was pretty tired, so we fed him dinner and relaxed ourselves.  One thing to note is that we did order a new bed for Caleb.  The old bed is a regular full size hospital bed, which is great because it gives us plenty of room to jump in and cuddle with him. But on the other hand, he is starting to move so much we are getting concerned he might fall out of it!

Just yesterday, when I was sitting in a chair next to the bed, I saw Caleb lying on his side, then turn over to his tummy, push with his hands, and almost get into a low kneeling position.  Needless to say, after that, we got the ball rolling on getting him in something a little safer.  So, some time tonight or tomorrow we are supposed to get a new crib to put him in.

Tiffany and I are so excited about tomorrow as the rest of our kids will be here!  They are coming in with Tiffany’s sisters and will be leaving out with my best friend and his wife.  So, all in all, they will be here for the next 5 days!

I can’t tell you how much we miss our other children.  Tiffany has been amazing.  She had been nursing Connor before the accident, and instead of giving up nursing, for the last two months she has been saving her milk, and sending it back with friends and family.

He has not weaned himself at all, and in fact is ready to go as soon as he sees mommy.   I am glad she has been able to keep nursing.  Having that bond with our boys has been a special time for her and I remember at first she was quite sad as she felt she would have to wean him early.  But, Connor has been doing great and we will see him in just a few short hours!

The boys should be here by about midnight our time. I can’t wait to see how Caleb interacts with his brothers.  What will he do?  Will he try to talk more?  Will he want to play with them?  Again, we just can’t wait until they get here.

Blessings.

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6 Comments

  1. Rob Davis

    November 28th, 2010 at 12:21 pm

    I’m so excited that Caleb is on the verge of talking again. This is just great news. Before you know it, he will be talking non-stop, just as kids do. Caleb, keep those reps up, little buddy… you are getting stronger each day and will strong enough to go home soon to play with your brothers.
    My prayers go with Caleb and all your family as they do each day. The Good Lord has blessed Caleb with healing and will continue to hold him close. God is Great !!!!!
    Enjoy your family time for the next few days.
    Love and prayers to you all.

  2. Chuck Payne

    November 28th, 2010 at 12:36 pm

    Tim,

    My children had a book we would read to them when they were Caleb’s age called, “The Monster At The End of This Book”, by Lovable Grover of Sesame Street. In this book Grover is scared that there will be a monster at the end and he starts asking the child NOT to turn the page, which will bring him closer to the monster at the end of this book and halfway into the story he begins begging the child not to turn the page. At the end, the monster is Grover himself, as HE is the monster at the end of the book.

    With GREAT animation, I would read it to them in my best Grover voice and they couldn’t wait to turn each page… Just a thought. If you can’t find it, I’m sure I can get a copy for you.

    I am SO glad to hear of Caleb’s WONDERFUL progress… I know our prayers are KNOWN to HIM and God is Providing for Caleb as he goes along. And just as in the story I mentioned above with Grover, God just encourages each of us to see the next page and to faithfully follow Him to the End. I can’t wait to see what HE has in store for each of us tomorrow…

    We will continue to keep ALL of you in our daily prayers. God Bless. – Chuck P.

  3. November 28th, 2010 at 1:27 pm

    GOD didn’t promise days without pain, laughter without sorrow, sun without rain. But HE did promise strenght for the day, comfort for the tears and light for the way. So happy to know Caleb is doing so much better!! GOD BLESS ALL OF YOU!!!

  4. jerry & betty patterson

    November 28th, 2010 at 2:58 pm

    So thankful to hear of Caleb’s progress.
    Praying for more “good news”.

  5. alyssa

    November 28th, 2010 at 4:42 pm

    o my goodness thanks for keeping us posted!!!!!!!!! sounds like he is doing great:)

  6. Leesa Wright in Hixson Tn

    November 28th, 2010 at 10:10 pm

    Caleb always impresses!!! God is good! I bet by now he is saying a couple of words! I can’t wait to hear how the boys all interacted with each other! I bet that did wonders for Colby and Caleb.
    I am so happy your family got to spend some much needed time together.

    You guys keep up the great work you are doing with Caleb and please give those OT’s and PT’s my sincerest thank you’s.

    Much love
    The Wright Family

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