CI Activation

Tuesday, January 26, 2010

The Dawn of a New Day

Since the dawn of time, or at least it feels that way, Thomas has hated to do flashcards with me. I tried everything to get him to "play" flashcards, body part cards, transportation cards, clothing cards, any type of cards -- you name it and I've tried it. He refused to play them with me.

Well, Ms. Sarah at school turned me on to a new approach. The approach is using the Chipper Chat. This toy is essentially a magnetic wand and magnetic chips. We take our flashcard decks out. I take about 5-6 cards at a time, usually all within a specific theme. I hold up the card and ask Thomas what is on the card. If it is something that he already knows, like a train, he says the word. Then I say the word back to him and describe the picture in more detail. If he doesn't know the word, I say the learning to listen sound or the word, and then he says it back to me. I then hand him a chip and he places the chip on the card. We go through the cards and then I give Thomas the magnetic wand. I then ask him to pick out each object by using the wand and allow him to pick up the chip. This gives me the opportunity to test his receptive language and gives him the opportunity to again express the word.

Here are a few quick videos of Thomas playing this with his sister, Sidney, and me:


Puh-Puh, Boat

Whee-Whee, Slide

As I view these videos, I catch myself not doing all the things that Ms. Becky, Thomas' prize-winning AVT at Cooks, has told me to do during our training sessions each Friday. However, I can't kick myself too much because Thomas is making progress. I'm not a trained cert AVT...I'm a mom learning as best I can.

So as a close this video-packed post, I admit that I know that we will continue to take steps forward and backward. However, it is seeing videos like this of our little man that make me hopeful. They make me hopeful that continued tweaks to his CI map will make him speak with a more opened-mouth (thank you, Ms. Bari!). They make me hopeful that the lack clarity in Thomas' hearing world may be slowly disappearing and thus giving way to the bright light of talking. Whatever happens, I'm ready for the dawn of a new day with my little man!

Monday, January 18, 2010

The Kindness of Strangers

Our family is enjoying a long weekend together filled with lots of playtime for the kids. We went to breakfast at Sidney's favorite place, Ol' South Pancake House, this morning. As we sat at a booth by the front door, Thomas was standing up on the seat and greeting virtually all the people with a wave and his version of "Hi -- ii-ee."

Yes, we got the typical stares and looks of pity. However, one older woman stopped by to talk with Thomas. She leaned over the half wall and began to tell us about her grandson who also has a CI. This is how the short conversation went:

She said, "Oh, my grandson has one of those."

I said, "Awesome, do you mean a cochlear implant or hearing aid."

She said, "An implant. He was born deaf and is now older."

I said, "That's great."

She said, "These kids just have to work harder than everyone else."

I said, "You're right. They do work harder & Thomas is working very hard, too."

She said, "Don't worry, he'll be just fine (referring to Thomas)."

I then smiled & she was on her way to have a huge southern breakfast. I thought to know, Thomas is going to be just fine. Yes, he will work harder than other kids to listen and speak, but he'll make it. I then smiled inwardly and felt a sense of calm all due to the kindness of this one particular stranger.

Tuesday, January 12, 2010

The Gift of Subtle Touches

I've written before that my wonderful friend, Tammy, encouraged me to start writing about Thomas' journey some months ago. I wondered to myself, "What could I possible write about that could make a difference in the lives of people that are helping their child or children manage hearing loss?" Well, I don't believe that I've answered the question yet. However, I wonder sometimes if writing about Thomas might mean writing about all the struggles of those around our family, those people that are introduced to our world, and touch it in sometimes subtle, yet miraculous ways. These people bring joy to our lives, perspective, and yes, help our little family get further down our path while we try our best to navigate this crazy, crazy journey.

So, here is my post for today. God has given our family the gift of spiritual friends through our church. You see, my husband and I took a marriage class at our church to give our marriage a tune-up, to help us get our marriage back onto the path that God intended from the very beginning and to bring us closer together...more connected which, in turn, helps us with Thomas and his sister, Sidney.

The people in our marriage class ultimately became our small group at church. We had our first small group discussing this past Sunday. At the end of discussion, we all had the opportunity to bring forth prayer requests for the week. We had families that needed prayer for upcoming surgeries, job uncertainties, cancer treatments, and medical diagnosis. These amazing individuals made me realize something...I never prayed for a healing for Thomas. I never, even once, asked God to restore Thomas' hearing. I have prayed for a lot as our family walked down this path with Thomas. I have prayed that as parents we would have the strength, compassion, conviction, patience and love to help Thomas become all that God wanted him to be in life. I have prayed for a 'clear and direct' path to cochlear implant surgery and activation. I have prayed for God to nourish Thomas during all the difficult times we have had with his eating issues. Not once, not once, have I prayed for healing. This week, I have asked myself several times, "Kat, why have you never prayed for healing?"

When Thomas' hearing loss was initially detected and later diagnosed, I was angry...freakin' angry, beyond words. I remember hating to hear the words, "God doesn't give you more than you can handle." These words were said during our small group. For the first time, I felt a sense of calm when I heard these words, because they are true. I realize that God has given Sean and me the gift of Thomas. I realized that this unexpected gift is the reason that I never prayed for healing.

So, let me thank the following people that touched my life during this very short meeting...they didn't know that they were touching my life so deeply, but they did.

Jennifer M
Greg M
Jennifer G
Liz K

I have come to realize that subtle touches from new friends are a gift from God. Thank you!

Saturday, January 2, 2010

Christmas Vacation

So, we took a two week hiatus from focused therapy here at the house for the holidays. We let Thomas relax, play and enjoy Christmas. On the 23rd, we left warm Texas and ventured to see my family for Christmas. The cold hit Arkansas with a vengeance. So, our family had its first white Christmas together.

My father is the eldest of eight children, a very large Catholic family. Ever since I was very little, Christmas Eve has always held a special place in my heart because this is the night that everyone comes together to celebrate. This year was no exception. My sister and I kind of forced my mom into hosting this year's celebration...boy was it fun for everyone. My aunt, Debbie, and a family friend, Frank, brought a keyboard and guitar to play Christmas carols. You can see Thomas in the picture below dancing to the music.

Thomas got lots of fun toys to use during therapy and several "fun only" toys, too. On Christmas day, we went to my grandmother's house on my mom's side of the family for more holiday fun. Thomas quickly found my grandfather's electric organ and started playing.

One of my biggest worries of Thomas getting a CI was that he wouldn't be able to enjoy music. As you can see by these pictures, he loves music; he gravitates to it.

When we returned home, the installers showed up to put together the wooden play set that Sean, his parents and I got for the kids this year. We got this because, when Thomas had his sensory integration evaluation, the therapist said that swings and climbing equipment could help with building his core muscles and help with his stability challenges. It has also given me the opportunity to actively use language to explain what Thomas is doing as well as reinforce language he already expresses. As you can see, Thomas loves the play set very much.

After all this craziness and taking some time off from therapy, Thomas did some great things the other day to show me that he was still learning during our AVT vacation. He is actively saying:

Open door and open box
Want that
Turn on choo, choo

He has also begun to try to sing the "Clean Up Song" and is getting the words "thank you" correct occasionally. After our ENT removed a HUGE amount of wax from both ears earlier this week, he was more "chatty" (as Ms. Becky so appropriately put it) and is speaking with a more opened-mouth. He is working on the concept of choosing between toys and activities. Of course, he wants to do anything that incorporates trucks, cars, trains, balls and anything that he sees as destructive -- such the boy!

I think that my very favorite memory from Christmas vacation was this...when we arrived in Arkansas my family came out of the house to welcome us literally with open arms. We all hugged each other and my family looked down at Thomas. He walked up and gave almost everyone a hug (preferring to hug the woman over hugging the men). Funny how one can become so obsessed with wanting our HoH and deaf children to listen and speak. When a movement of love can actually render one completely speechless.

Thank you so much to our family and friends for helping us celebrate the birth of our Father. Thanks to Thomas' audiologist, cert AVT, doctors and teachers for making 2009 a year to remember, truly monumental. 2010 will begin with more audiology appointments, more verbal therapy sessions, more school days and the addition of occupational therapy. After a great Christmas vacation, Thomas and I are ready for the challenge and prepared for lots of time running from appointment to appointment.