Wink from Heaven: Neurology appointment

Friday, September 26, 2008

Neurology appointment

Caleb had a neurology appointment this week. I really like our doctor and I feel like we came up with a good plan to see if we can increase Caleb's comfort level. We are going to try to wean him off of one of his seizure medications (topamax) because we're not sure if he's really needing it or not. We are also going to start giving him a new medication called baclofen. It is supposed to help his muscles relax more. Dr. Fillioux explained that as a typical brain develops, it is able to send signals to the central nervous system to help the body to stay relaxed. Because Caleb's brain is not developed, his body is not getting those signals, which may result in the rigid arching behavior we are seeing. It seems like discomfort triggers his body to stiffen, but then he'll stay in a cycle of rigid behavior for longer than he should. We'll try giving him this medicine 3-4 times a day to see if it helps. We have the option to have it pumped right into his spine, but are going to try giving it orally first. Caleb has developed strong little muscles, but hopefully now we'll be able to keep him comfortable for longer periods of time. Good luck Caleb!

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Prayer for Caleb

(written by Caleb's Grandma in her weekly column -2008-)

In my family we have a secret code to communicate our love for each other when we are out in public. We wink. When one of us is about to perform or speak, we look for a family member’s face in the crowd. Then we wink at each other. Closing one eye and winking is our secret code for saying, “I love you. You can do it. You’re wonderful.”

About three years ago, my grandson Caleb was born into our family. He must have known before birth that he would never be able to speak to us because he was born with one eyelid permanently closed. So, he is always “winking” at us, always communicating, “I love you. You can do it. You’re wonderful.”

Caleb has one eye lid permanently closed because he is missing one of his eyes . . . and he is also missing his brain. All the doctors said he would die soon after birth. They were wrong. Caleb is three years old. He is a medical miracle. The doctors say he can’t see, hear, speak, think or move. Those who know and love Caleb understand he has his own unique way of experiencing the world and communicating his love to those around him.

After Caleb was born the hospice people told us to buy a burial plot and continually warned us of his imminent death. We soon learned you can not live well in a state of fear and sadness. We decided we could spend Caleb’s entire life anxious and scared he might die at any moment, or we could celebrate each day we were blessed to have him with us. In the beginning, my daughter April celebrated Caleb’s birthday every week instead of every year with balloons and cupcakes because we simply did not know how long we would have him with us. We stopped the cupcakes after we gained ten pounds, but the celebrating goes on.

We all prayed for a miracle when we first learned about Caleb’s condition. We got one. Caleb’s birth, life and mission have had a deep and lasting impact on our lives. His spirit, eternal identity and most of all the loving, individual relationship he has with each of us is truly a miracle. Because of Caleb we know that each of us has a divine purpose and that the physical body is a sacred gift we should never take for granted. We better understand the worth of a soul and the resiliency of the human spirit.

Caleb’s five year old brother Matthew said, “Grandma. The doctors said Caleb was going to die, but he didn’t. That’s the first miracle I ever saw!”

Sometimes Caleb’s baby brother Mitchell pulls out his feeding tube while they hold hands riding together in their double stroller. Sometimes the only intervention that can get Caleb’s heart rate up is when his older brothers Josh and Matty crawl in his crib, hug him and sing, “I am a Child of God.” ...If you have a moment please offer a prayer for the little boy who has never been able to utter a single word and yet has taught everyone who knows and loves him – all the secrets of a rich and meaningful life.