The news is simply too good this morning to not go ahead and talk about. When I woke up this morning my mind was consumed with the question of whether or not the discharge date of December 7th was one they thought would actually be our date, or if it was still tentative.
As soon as I got up this morning and attended Caleb’s first few therapy sessions I was off to speak with our social worker. And to our grandest surprise…WE ARE GOING HOME!!! The social worker told us that Caleb is doing so well and that he has not only met but surpassed his entire therapist’s stated goals for each week. She said that he is ready for outpatient therapy. So folks, drum roll please…we are going home in 8 more days…December 7th, 2010!!!
Ok, now back to talking about Caleb! In OT this morning Caleb really had a good time. He was very animated, very alert, and into his play time. He clapped, threw things, smiled, and verbalized a ton. He also helped clean up his toys at the end of the session.
One of the things the therapists like to do is incorporate therapy into all the normal parts of the child’s routine. And since cleanup is part of making a mess (and since you can work on fine motor skills by guiding Caleb’s hand down to pick up a toy, and then showing him how to release it into a bucket), the entire process helps Caleb regain all of his abilities.
One piece of good news we received today in OT is that we no longer have to use the Theratogs he was using to help him learn how to move and walk better. His technique has improved such that the therapists all unanimously agree that he has regained enough control without their use and will no longer need them.
The therapist did say they may use tensioner straps to help his right leg stay straight when he is working on his walking. That is one area of Caleb’s progress that still needs a little work. When Caleb walks, he knows the movements. He can put one foot in front of the other and he can bear most all his weight, and even balance pretty well with assistance. But, he still has a problem with that right foot dragging or getting crossed over his left foot—all due to the fact he has a weak hip and heel that just needs some more work. So as the therapist said, “We’ll see how he does with walking over the next day or so and see if he needs that tensioner strap.”
The other things John wants to work on are things that really focus in on Caleb’s fine motor skills—things like turning buttons on and off on toys, matching colors and shapes to work on his eyes and hand-eye coordination. These are all things we plan to incorporate into our night time play. He is doing so well with all they throw at him. I have never seen someone learn so fast in my life!
Caleb was still playing hard as he entered his language therapy this morning. He was very happy, verbalizing a lot and playing with toys. Currently when he plays, (getting back to those fine motor skills I was talking about a moment ago), he bangs on the toys with his hands, or he runs his hands somewhat uncontrollably, over the toys. So again, he is still not yet able to properly play with the toy, although he has fun, nonetheless.
He did however, do really well when it was time to play ball. He loves playing ball! Every time the therapist would throw the ball to him (pretending…and laying the ball in his lap), he would, a second later, reach down with both hands and happily grab the ball, and near every time immediately pitch it back up into the air.
One of the things the therapist wanted to work on this time in his session, was to see how well he would react to the ball coming toward him, to see how well he could anticipate an object coming at him. She tried a number of times, allowing the soft rubbery ball to land gently at his chest. Caleb was only able to see and react to the ball about 20% of the time. He did however, laugh and giggled every time, which was very cute to watch, of course.
Among the other things he did was choose between two toys and was actually able to pat his hand on the toy of his choosing. He played peek-a-boo and actually knew to pull the cloth that the therapist had laid on his face, and pull it down, (as he would smile very big), knowing she was playing with him.
He also had a chance to play “pop the bubbles” which, again, tested his ability to see and react. This time he did very well, being able to not only catch glimpses of the bubbles as they were coming down and falling past his face, but he was also able to react timely and reach out and pop a few! He still favored popping them with his right side, but regardless, we hoorayed and applauded him as he popped the bubbles, and as Caleb gave us his now classic “I’m so proud of myself” grin.
Lastly, in speech today, I had the privilege of hearing Caleb say dada again. At one point, I decided to see if I could get him to say it, seeing that he had said it once already recently. I said, “Caleb, can you say da…..da?” I asked him a few times, as I watched him think very carefully about what I was saying, (no doubt trying to figure out how to say it). After a few tries he was able to get out one syllable…”da!” That was good enough for me! I just love hearing him say dada!
By the time we got to physical therapy, it was pretty apparent that Caleb was getting a little tired. He didn’t really want to participate in playing with toys. And, though he enjoyed practicing his walking and walking up stairs, you could tell that it was a little too strenuous for him as his muscles were beginning to fatigue.
In occupational therapy Caleb seemed to perk up a bit. He got excited as he was again, practicing his walking, and one thing we noticed that was encouraging was, when the therapist and Tiffany were walking him past a chair, he reached out with his hand to touch it—indicating that he was able to see the chair well enough and focus well enough to grab it.
We were able to see him use his eyes again, later on as the therapist was rocking him back and forth on the balancing ball. Caleb kept turning is head to his left, looking at objects and things in his left field of view. We’re still not sure if he is relying on his right eye to see or if this is a sign that his left eye is getting better. It’s hard to know at this point, but that is what we are praying for.
In language therapy the name of the game today was to help Caleb learn how to follow one step commands. What they want to see him begin to focus on is whether he can process and understand what it means to listen and do what someone is telling him. So, for example during play time, the therapist kept asking him to do certain things—things like throwing a ball, kicking a ball, giving me a high five, and pushing buttons on a musical book—all on command. He did great as most of the time he was able to listen and follow those directions.
During our afternoon break we had a short meeting with Kristen, Caleb’s main physical therapist, regarding issues related to going home. Tiffany and I had felt some concern over our leaving only 28 days into intensive therapy, regardless of how well Caleb had been doing. We had wondered if the reason why we were not staying here longer was due to our insurance policy only paying for 28 days of inpatient rehab.
We related our concerns with Kristen and her response was more than encouraging. We said, “The reason why we wanted to talk with you was because, as you know, we are scheduled to be leaving here in a few days, with our discharge date set of the 7th, and we were wanting to know, since you have spent so much tie with Caleb and you know how well he has progressed—what you thought about that date…if he is ready or not?”
She told us she felt Caleb was absolutely ready. She said, “Every single week he has improved and done better and better—meeting all of our goals as well as consistently exceeded them. She went on to say, “The reason why we want to go ahead and discharge you is really for two reasons—one because we believe he has gotten to a point in his recovery that being in the home environment would really be the next logical best step for him.” They have told us that more than once they believe Caleb will excel greatly when he gets home.
She said, “And two, because of the fact that you do have that limitation in your policy, it would be best to get him on home and not have to pay extra for all the doctors, nurses, staff, hospital room, and all the extras that he no longer needs. He doesn’t need a hospital setting now, only therapy. So if you have any extra funds or money that people have donated, it would be best used to pay for the additional therapy at home.”
When we first arrived at Scottish Rite, I found out from my insurance company that we had 28 days inpatient rehab they would pay for, and then 40 outpatient sessions. We had originally been told that if Caleb needed to stay longer, then after his primary insurance benefits were exhausted his secondary would then pick up the difference and pay as primary.
About a week later we got the unsettling news that because we were out of state our secondary insurance would only pay as long as our primary paid. So in short, if Caleb had to stay past the allotted 28 days, then it would be completely out of pocket. So we were grateful to find out it was not due to insurance reasons—but that genuinely, it was because Caleb was ready.
As we were wrapping up talking to Kristen, we had one final question we had been wondering…would Caleb go home in a wheelchair? We asked that question for two reasons, one being the obvious logistical one of how we would get a large wheelchair home in the car with all of the other stuff we had to take home. The other was just the sheer curiosity and emotion of wondering if you would have to bring your son home in a wheelchair.
Kristen’s answer was encouraging. She said, “That’s actually a good question. We are looking into that right now, and me and another therapist are assessing whether we are going to send him home in a wheelchair, or if we are going to let him go in a stroller. It’s quite possible that he won’t need a wheelchair.”
After she said that my next obvious question to her was, “So you think that, based on all you have seen, since you have worked with him, that he will one day walk again?” She said, “Oh absolutely. I have no doubt. He is already getting very good at walking and I don’t see any end in sight.” We were elated and so full of happiness to hear those words.
After our conversation, and with our fears subsided, an overwhelming sense of joy settled in. I thought to myself, “Wow, we are really going to go home next week!” I looked at my calendar on my laptop to see the date with my own eyes. I realized quickly that I had told Colby wrong the other day when I told him it would be two more weeks. It hit me that it was going to be next week! We quickly realized it wouldn’t make any sense for our family to bring the boys back down here when we would be turning around and going back home only two days later. So, we decided to let them stay home and we would meet them…home…next week!!!
After Caleb’s nap, we had another little surprise we all loved. As Caleb was starting to wake from his slumber, the nurses that were coming in to attend to him were talking and playing with him, commenting on all the stuffed animals that were sitting at the foot of his bed. One nurse looked at the well worn and well loved little white and beige colored puppy dog, (his special stuffed animal that he has slept with since he was a baby), and playfully said “What’s that?”
Caleb, without hesitation, blurted out, “Dog!” We all had another one of those moments where the room became silent as we had all realized we had just heard another one of those rare moments where Caleb talked. “What did you say?” we said in excitement, to see if he would say it again. He never said it again, but we were all reeling over the fact that we had yet again, received another chance to hear his little sweet voice.
After giving him his meds and getting him dressed, Tiffany walked him down, (we left the wheelchair again…yay!), to music therapy. Today, he sat up in one of the little toddler chairs all by himself! As Cory sang and strummed on her guitar, Caleb sat up straight in his chair, smiling, and every now and then taking a notion to sway his little body with the music. He also shook a shaker to the music.
Also, one of the things they do in every session is they allow the kids to pick a song out of a small drum. When they pass the drum it has about 20 or so little folds pieces of paper with songs written on them. Every single time up until this point Caleb has never picked out a song. When the therapist would hold the drum before him, he would either ignore it, not know it is there, or not be able to figure out what to do with it. I am proud to say, both yesterday and today, Caleb reached in and pulled out a song of his own!
In the last session for the day, Caleb again worked on walking. He did fantastic! He walked all the way from the gym back out to the place that all the kids love to have as their resting place—the aquarium full of turtles. Once there, he was met by a duo of clowns who were playing music and blowing bubbles. He loved this little “intermission” in his therapy. He smiled and clapped his hands to the music, and also tried to pop the bubbles that were flying past his face. After this jovial little rest stop, Caleb continued his journey all the way down the hall to our room.
Today is Tiffany’s birthday. I had wanted to try to take her out for some time now and had hoped I would get the chance sometime near her birthday. I had that chance tonight as her uncle, John Trimble, came to spend the evening with Caleb while Tiffany and I went out.
For this year’s birthday dinner we went to The Cheesecake Factory. We had a great time this evening, with our conversation being much more light-hearted than the last time we went out. We talked about our successes, we talked about the challenges ahead, we talked about our other boys, and about our relationship, thoughts, and feelings. And most of all we talked about going home.
I never will forget, about a week ago, as Tiffany and I were taking Caleb for a stroll through the hospital, how she commented that she was sad because she wasn’t going to get to do her favorite Christmas tradition. Ever since we have been married, over the last 9 years, Tiffany has kept a tradition of baking all kinds of homemade Christmas cookies.
Later on when we had children they too, became a part of this holiday tradition. We would all gather in the kitchen and take orders from mommy as she would tell us guys how to make the cookies–sometimes throwing flour on each other, tickling and playing with each other, and making sure that all the boys (including dad), had a chance to eat some of the leftover cookie dough batter.
As I sat under the dimmed lights of the restaurant I could tell that the once saddened look on Tiffany’s face, was now one of happiness. Her watered eyes spoke volumes as she said, “I get to make homemade cookies with my boys this year!” I nodded and smiled, and was so happy to know that God was blessing her with a gift that speaks so much to her heart.
I too, have my own traditions I can’t wait to do. After we keep the family tradition of putting up the Christmas tree and decorating it with lights, balls, and ornaments from years past, we all sit down at Christmas Eve, where I tell the kids about the true meaning of Christmas—about Jesus and him being born, and more importantly about his life and what he means to us.
I also read the kids a special bedtime story—Twas The Night Before Christmas. Then, we each cuddle up a child into our arms and go to spend some time in their rooms saying prayers with them, kissing them and telling them goodnight.
After the kids are asleep, Tiffany and I come back down and turn off the lights. We usually sit in the living room and drink some hot chocolate while listening to the near inaudible tunes of Christmas music on the radio. We watch the lights on the tree, and then I open up the Bible and read the story of the birth of Christ. We talk some, give each other a hug and kiss, and talk about how special our greatest gifts are—our children…and each other. And, then we go to sleep, in anticipation of the soon visit from the man in the red and white suite.
It is very humbling to think that two months ago we were faced with the horrifying thought that we may have to spend Christmas this year without one of our sons. Just the thought was enough to make you cry. But, here we were, sitting here celebrating my wife’s birthday, joyous over the fact that soon…very soon…we’ll be home for Christmas.
The last thing I want to add tonight before I get to sleep is that as we laid Caleb down for night night, he must have been feeling pretty happy himself, because as we looked over at him, hearing a little clapping sound, we found him smiling and clapping hard and fast with his hands. He again, met one of his goals for the week. He learned how to clap again on his own. You don’t even have to ask me what I want for Christmas, because I have already received the greatest gift in the world.
Please pray for his sight.