Day 16 – Caleb And Colby’s Secret Mission

Caleb's Dad ~ 26th November 2010

So much to talk about today! We started our morning going to OT where we worked on evaluating and encouraging Caleb’s sight. I have wondered if Caleb’s sight had been continuing to improve as that is not one of those things that you can easily tell when you are working with him.  Some days his sight seems to be better and some days it’s not.  It just all depends.

Today we entered the therapy room with lights dimmed. We sat on a mat where the therapist was behind Caleb and I was in front.  She took out a small flashlight and began to ask him to look with his eyes to find it.  She began in his mid line field of vision, a few inches in front of his eyes, and then began to move to his right side.

As she moved the little light, Caleb in turn moved his head in sync with the light, all the way to a full right turn with his head.  Very good! As the therapist told me, this is what we want to see.  He tracked the light quickly and was able to follow it and not lose it.

She moved the light back to his center.  This time we were going to check the left.  She started again in Caleb’s mid line field of vision.  He looked intently on the light, smiling as he was amused by the fun activity we were doing.  Slowly she moved the light to his left, and he started to move his head again in sync with the light.  It was at this point I could tell that Caleb struggled to follow the light.

He would lose the light after a few centimeters of movement.  She would stop, and then you would see his eye ball adjust position and then catch the light again.  She continued this stop and go movement until he lost the light completely at about a 45 degree angle.  She said that, “He definitely has better vision than a few days ago.  And he, for sure, has better sight in his right eye than he does in his left.  He sees better in the dark, as far as seeing light is concerned, but I’m still not sure just how much he can see out of his left eye.”

His left eye and really his sight in general has been a fear of mine and Tiffany’s since the beginning. It has definitely improved over the last few weeks, but we have noticed that he still only focuses on things for a short period of time, and he often gets frustrated when he is trying to look at things, rubbing his eyes in an effort to improve his vision.

I remember when he first got here, him pulling down at his eyes.  We asked the therapist what he was doing and she stated that often when kids are becoming more aware after coming out of a coma, and they can’t see, they often pull at their eyes thinking that there is something covering them up, like a blanket or something.

So, all we know is that he sees better.  What he sees and how well he sees is yet to be determined. As I think I have mentioned before, when the rock hit him, it hit him is a crucial part of the brain that controls, among other things, vision.  So his vision is going to be intermittent at best for now, and hopefully over time will improve.  That is our prayer and what we are asking everyone to pray for.

In Caleb’s next therapy we had a joint session with Isaac and another young man.  The session was geared toward getting the patients in a standing upright position.  So all three of them were in standing machines.  The therapists were a little busy with the other young man, so I started working with Caleb on other things while he was in the machine.  I try to maximize the time we have as much as possible.

All day today, every time we had  30 minutes here or  15 minutes there, I would work on his speech and sight.  I like to think the extra work reinforces what the therapists have done, and they all seem to think that it is helping.  So we’ll keep working on it!

We had all kinds of neat toys in front of us on a little tray attached to the standing machine. Within arm’s reach, Caleb had a small yellow cone ringed with circular stackers, a push button musical toy, and a noisy rain stick.  The toy that caught Caleb’s interest the most today was the ringed stackers.

We worked on pulling them off the cone, one by one.  And then in reverse we worked on putting them back on.  The goals given to us by OT are still the same.  They want to eventually see Caleb place his hands on the ring, pull upward and pull them off.  And then with control, lift his hands and put them back on.

Typically what happens right now is Caleb will get his hands on the ring, and then flail his arms upward and outward.  Part of it is his inability to control fine motor movements, and the other part is that Caleb has just learned to throw a ball, so every time you put something in his hand he likes to throw it! That’s one of the things that we have noticed about Caleb, that as soon as he relearns how to do something, he gets real excited and wants to keep doing it.

At various points throughout our working with the rings, I would interject a little silly humor, taking one of the rings and holding it up to my eye, looking at Caleb through it.  Caleb would look and me and laugh and smile, thinking I was silly.  We also used the rings as hats, bracelets, and a number of other imaginative uses for plastic rings—all of which were equally amusing to Caleb.

Caleb did great in his standing machine.  He stood for over 30 minutes and never complained once.  He also maintained great posture, holding his knees in the right position and not locking them—all great signs of strength.

In language therapy we saw some more firsts.  Caleb kicked a ball on command.  He also threw a ball on command. One thing that is so cute to watch is when Caleb realizes that he has done something and done it right, he gets very excited and proud of himself. He smiles really big, makes sounds with his mouth (a lot of ahhhhhh! type sounds)—very happy.

One huge thing we saw in speech therapy today was the therapist worked on getting Caleb to communicate by saying “yes” or “no.”  She offered various choices to him, regarding playing with different toys, regarding blowing bubbles, etc. all to get him to say yes or no in some way, either verbally or by head nods.

Caleb never responded in kind, however when she took two objects and placed them in front of him and asked him to make a choice, he chose one!!! She held up a ball and a book and she said, “Caleb, which one do you want sweetie?  Do you want the ball or the book?” He looked at the choices in front of him. Inside, I had that moment of hope where I thought, “Will he say one or the other?  Will he be able to make a choice?” He stared at them for a few seconds.  I felt inside, “Oh well, he will be able to soon.”

Already resigning to the idea that he would not respond, she asked him again, “Do you want the ball…” shaking the ball in front of him, “…or do you want the book” doing the same.  Caleb then reached up with his right hand, and patted the book.  “Whoooo!!!!” I was so excited. He actually made a choice for the first time!

She began reading the book to him, and then about mid way through the book he got tired of it, and closed it.  She then held up the objects again.  This time without hesitation, he reached his hand up and patted the ball.  Again! He made another choice all on his own! The therapist went on to play ball with him and do what he had chosen to do.

After Caleb’s midday nap, we got the kids together and played some more.  Caleb played with Connor for a time and it was interesting how much more Connor was able to do developmentally than Caleb.

When we first arrived here at Scottish Rite, they told us that developmentally, Caleb is functioning at about an 8 or 9 month level. Our youngest son is 9 months old, and though I see many similarities, I can also see a lot of advantages to what Connor can do. Connor of course can see very well, is able to fixate on objects and zone in on them easily.  He can transition to whatever position he likes whenever he wants while keeping balance.  He can get on all fours and crawl, as well as pull up and cruise.

Caleb has a very hard time seeing, can move a little on the floor but not much, he cannot crawl, and he cannot pull up or cruise around.  I know all these things will come, hopefully with time, but it is interesting and sad nonetheless, to see out littlest little man doing so much more than Caleb.

I will say that Caleb is not deficient in every area. I can see that developmentally speaking, when you are talking about Caleb’s ability to understand, his ability to think and do things on command, to throw a ball, give a high five, etc., are all things that come later.  So I don’t think that overall he is like an 8 or 9 month old, but just that he is in some of the major areas.

One thing happened earlier that really gave us an indication that he is starting to progress even with his larger movements and motor skills.  After we were back in our room with Caleb, as he was sitting there in his bed, I noticed that he got over on his side, and from there moved to his tummy.  He then tucked his feet up in fetal position, and then turned over to his tummy.  Once his feet were planted behind him, with knees tucked up to his belly, he then sat up all the way, sitting on his knees in the bed. This was the first time we saw him sit up completely on his own in bed!

It’s a good thing  we anticipated this, because before, he had been in a regular hospital bed.  His ability to move presented a possibility of falling—as risk that we were not willing to take.  So we put the order in for a new bed, and got a hospital crib.

Another major event that happened tonight is, I took the boys on somewhat of a secret mission.  Colby had wanted to take a trip down to the cafeteria to get a snack and so I told Tiffany that I would take Caleb and, while she was picking up the room, go get the boys a snack.

I indeed went down to get them a snack, but the other reason why we went down was because Tiffany’s birthday was coming up in 3 days and I wanted the boys to be able to give mommy something.  Downstairs on the floor is the little boutique that I have mentioned before—a small gift shop that has a little of just about everything.

As we approached the boutique we noticed the people working on all the Christmas decorations for the hospital—a very large Christmas tree that looked like it could have come straight out of The Grinch Stole Christmas—decorated with oversized ribbons and balls and everything.  Candy canes, little toy soldiers, and reindeer also lined the main hospital hallway.

We entered the boutique and was immediately met by the myriad of holiday gift choices—stuffed teddy bears, candy of all kinds, toys, clothing, Christmas decoration, and more.  Colby was immediately drawn to the selection of toy cars and trucks they had. “Ohh, I want to get mommy a toy truck!” I laughed out loud. “Really” I said, smiling.  “Yeah!” He quickly went over to the cars and trucked and started picking each one of them up, measuring up their coolness and looking at which one or ones he might like. “Here’s one for Caleb!

He grabbed a little truck and took it over to his brother who was in his wheelchair parked next to him.  Caleb grabbed the truck and immediately sent it to his mouth.  Colby kept looking, going from one toy to the next, looking for that very special gift for mommy.

At one point I said, “Hey buddy why don’t we go over here and look at some of this other stuff,” pointing to the non toys items on the other side of the store. He said “Yeah, that sounds good.  Let’s go over there to the girl stuff.” I chuckled again.  That is one thing that I have missed so much being around Colby (and missing it with Caleb as well), is all the little cute things that kids will do and say sometimes. For example, as we were looking for a present for mommy for her birthday, Colby also kept picking up toys and saying, “And this one is for me for my birthday.  It’s my birthday too!”

We looked around the store until all the perfect gifts were selected—a toy airplane for Colby, bouncy balls that light up for Caleb, Connor’s first stuffed teddy bear, and for mommy a beautiful holiday decorated picture frame with the word “Family” written across the front.  That was what this few days with our kids being here was all about—family.  I am planning on taking Tiffany out to dinner as soon as I can find someone to come and stay with Caleb for a few hours, but this was our own little way to let the kids say Happy Birthday to mom.

On a side note, I am going to have to plan a little encore birthday celebration for mommy sometime after we get back to Nashville.  Over the last couple of weeks, prior to us going to Fall Creek Falls, I had a very sweet conversation with Colby on the phone one day as I was talking to mommy on my way home for work.

Colby had asked to talk to me and so mom passed the phone to Colby and she went off (still within earshot of Colby mind you) to do some more cleaning. Colby whispered on the phone, “Hey dad.”  “What,” I said. “We need to figure out a way to get momma out of the house.” “Why?” I whispered back to him, already smiling, knowing he was cooking something up. “Because…we need to surprise mommy for her birthday.”

What was cute was Tiffany was hearing this whole conversation, but he thought he was cooking up something good! I said, “Ok, how are we going t do that?” He said, “I don’t know.” I said, “Ok, we’ll figure something out…what do you want to get mommy” I said as I continued to whisper. He said, “I’m going to get her a toy.” I loved it.

I loved the cuteness of all this and I loved his little heart. I promised him that day that we would plan that “surprise” party for mom.  So looks like this year we will be celebrating mom’s birthday twice, which is certainly fine with me as she deserves it!

We came back to the room and the boys gave their mommy their presents, and they all got to open theirs. We had fun and wound down for the night, playing, spending time, talking, cuddling, kissing, and tickling.  I could tell throughout the night that the more Caleb is around all of us together the more he wants to be a part of—to join in and do what everyone else is doing.

He seemed restless at times, wanting to walk, wanting to engage, and wanting to play the same as his brothers.  I can see now more of what the therapists have talked about with the next plan of action getting Caleb home that way he can be in his home environment and progress rapidly with his recovery.

Some other things to report tonight! After I fed Caleb his dinner, he spoke another word again! This time after I was done, and after I pulled the tray off of the high chair, he looked down and said, “Down!” I said, “Whoa, did you say ‘down?’” He then repeated it again.  “Down!” “Well, I guess so!” I laughed.  Again, we have heard him say yet another word. I have been so encouraged this week as we have started to hear more out of Caleb and actually hear a few words.  Hopefully over the next few days we will be able to hear him saying more.

He did say one other thing, and I will close with this tonight. As I was giving him his nightly “tuck tuck,” I was also doing the “I…Love…You…” thing that I have talked about.  And each time I do it, I do it with the hopes that he will repeat the words after me. So I came in close and said, “I…” He didn’t say anything.  Then I said, “Love….” And right when I said the word “love,” he repeated that word.  He said, “uuuuvvvv.”  I said, “YOU!!!” in excitement.

The last thing I wanted to mention was yesterday I expressed my feelings about how the kids have reacted to us since they have been here, with Connor favoring his aunts and Colby seeking permission from his aunts and uncles over us.  I can tell that a lot of that has worn off over the last two days.  I think the kids have been so used to living under our family’s households that it makes sense that they would be a little confused as to who they should prefer or listen to.

So I think less today that the changes in them have been as drastic as thought earlier.  I do know that changes have happened, but I am joyful to say that today has been a wonderful day.  Our kids seem more relaxed, more in tune with our family dynamic and relationship.  And we too, as mommy and daddy, have been so happy to see them and spend time with them—a foretaste of things to come.

Having said that I want to take a moment and just thank my sisters-in-law, and both their husbands.  For Chassi and Josh Hall, with their 3 girls, and for Misty and Ryan King and their 2 children, we cannot thank you enough for what you have done for us.  You have watched over our children—the most precious little ones in our lives—and you have protected, guarded, fed, clothed, cleaned up after, bathed, and nurtured them as your own.  God will forever remember the work you have done for us.  We love you so much from the bottom of our heart.  Thank you.

Blessings.

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7 Comments

  1. BIllie O'Neill, Chattanooga, TN

    December 1st, 2010 at 7:21 pm

    Praying for Caleb and your family daily!

  2. Nicole Lester Russell (Murfreesboro, TN)

    December 1st, 2010 at 7:21 pm

    All of this is such wonderful news! You have such a beautiful family. I pray that Caleb can make a full recovery and that it be speedy…I especially pray for his eyesight. I can tell that you treasure his “firsts”–even though they are his “second firsts”. You are ministering to many people through your writings…keep up the great work!

  3. December 1st, 2010 at 7:54 pm

    GOD BLESS YOU AND YOUR FAMILY

    THANK YOU FOR SHARING WITH EVERYONE YOUR STORY
    I HAVE BEEN SO TOUCHED

    AND I HAVE NO DOUBT …WHAT SO EVER…….YOUR BABY IS RECOVERING BECAUSE OF YOUR FAITH AND ALL THE PRAYERS………………..

  4. Dusty Knotts

    December 1st, 2010 at 9:06 pm

    It is so wonderful to read your postings. Our prayers are with you and may the presence of God give you great peace.
    Dusty Knotts (Kira’s G-ma)

  5. Tammy Shaver

    December 1st, 2010 at 10:23 pm

    I’m so thrilled to hear each piece of good news that is only possible through our God above. How people can hear of this child and the healing he is receiving and not believe in God, is beyond my understanding. Caleb is going to make believers out of many.

    And so you know….I live just a few miles (about 120 lol) north of where you guys are and I would without a doubt be willing and honored to make the trip down to watch Caleb so you and Tiffany can go to dinner for her birthday if you’re meaning while you’re still at Scottish Rites…..well, i would make the trip to Nashville too but I have a feeling you will have people waiting in line to do that when you get home. :)

  6. Leesa Wright in Hixson Tn

    December 1st, 2010 at 10:50 pm

    I have no doubt that as soon as you get home Caleb will start progressing faster than you can write it down! I am so glad you are taking the time to share Caleb’s days with us. The family days are almost too much to handle! I am in tears almost the whole time I read them! I am about as excited as you are for you guys to be home all together again!

    Also, I plan on seeing you guys when you come through Chattanooga. Can’t wait to see you and I can’t wait to introduce you to my little miracle!

    Patiently waiting for day 17…..
    Much love
    The Wright Family

  7. Rebecca Cox

    December 2nd, 2010 at 1:54 am

    Praise God I’m certain with your loving faithful family God is healing Caleb
    slowly but surely I imagine you getting excited when he does say a word;&
    anytime he is able to accomplish any of these things.However I imagine it
    was great hearing the word down;but I’ll bet excitement entered your body
    when you heard him say “uuuuvvvv.”To God be the glory you say he did stand for 1/2 an hour today w/no complaining;+plus threw & kicked the Ball!
    My sister in Christ friend Carol placed this place on AT&T Christianity Board
    so all we have to do is click on it to come here & see Caleb’s acheive-ments;thanks for sharing with everyone how awesome he’s coming through all of this!You guys shall remain in my thoughts & prayers!

    Dear Heavenly Father,I come seeking Your Divine Healing for Caleb;
    please send down Your Love,Peace,& Comfort for the entire family?Please
    send down your Healing Hands to grant Caleb to be healed;& I ask all of
    these things in Jesus’ Name,Amen.
    God bless you & We love you
    ;-]Rebecca

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