CI Activation

Tuesday, December 22, 2009

The Christmas Guest

With all the craziness of the holiday season and a double ear infection, I want to take a quiet moment and say something to my little man...

You are learning to listen and speak. I know that you will learn everything in your own time and way. Your mom is so amazingly proud of you and all the work that you have done and will continue to do.

I hope to one day say this poem to you and have you understand its meaning not only in your ears, but in your heart. Merry Christmas, Thomas. I love you so very much!

The Story of the Christmas Guest
by Helen Steiner Rice

It happened one day at December's end
Some neighbors called on an old-time friend.

And they found his shop so meager and mean,
Made gay with a thousand boughs of green.

And old Conrad was sitting with face ashine.
When he suddenly stopped as he stitched the twine.

And he said "My friends at dawn today,
When the cock was crowing the night away,

The Lord appeared in a dream to me.
And He said, 'I'm coming your guest to be"

So I've been busy with feet astir,
Strewing my shop with branches of fir.

The table is spread and the kettle is shined,
And over the rafters the holly is twined.

And now I'll wait for my Lord to appear;
And listen closely so I will hear,

His steps as he nears my humble place.
And I'll open the door and I'll look on his face."

Then his friends went home and left Conrad alone,
For this was the happiest day he had known.

For long since his family had passed away.
And Conrad had spent many a sad Christmas Day.

But he knew with the Lord as his Christmas guest,
This Christmas would be the dearest and best.

So he listened with only joy in his heart,
And with every sound he would rise with a start,

And looked for the Lord to be at his door.
Like the vision that he had had a few hours before.

So he ran to the window after hearing a sound,
But all he could see on the snow covered ground

Was a shabby beggar whose shoes were torn.
And all his clothes were ragged and worn.

But old Conrad was touched and he went to the door
And he said, "Your feet must be cold and sore.

I have some shoes in my shop for you.
And I have a coat to keep you warmer, too."

So with grateful heart the man went away.
But Conrad notice the time of day

And he wondered what made the dear Lord so late,
And how much longer he'd have to wait.

Then he heard another knock, and he ran to the door,
But it was only a stranger once more.

A bent old lady with a shawl of black,
And a bundle of kindling piled on her back.

But she asked only for a place to rest,
a place that was reserved, for Conrad's great guest.

But her voice seemed to plead, "Don't send me away,
Let me rest for awhile this Christmas Day."

So Conrad brewed her a steaming cup
And told her to sit at the table and sup.

After she had left, he was filled with dismay
For he saw that the hours were slipping away

The Lord had not come as He said He would
And Conrad felt sure he had misunderstood.

When out of the stillness he heard a cry.
"Please help, me and tell me - Where am I?"

So again he opened his friendly door.
And stood disappointed as twice before.

It was a child who had wandered away,
And was lost from her family on Christmas Day.

Again Conrad's heart was heavy and sad,
But he knew he could make this little girl glad.

So he called her in and he wiped her tears,
And he quieted all her childish fears.

Then he led her back to her home once more.
Then as he entered his own darkened door,

He knew that the Lord was not coming today,
For the hours of Christmas, had all passed away.

So he went to his room, and he knelt down to pray.
He said, "Lord, why did you delay?

What kept You from coming to call on me?
I wanted so much Your face to see."

Then softly, in the silence, a voice he heard.
"Lift up your head - I have kept My word.

Three times my shadow crossed your floor.
Three times I came to your lowly door.

I was the beggar with bruised cold feet;
I was the woman you gave something to eat;
I was the child on the homeless street.

Three times I knocked, three times I came in,
And each time I found the warmth of a friend.

Of all the gifts, love is the best.
I was honored to be your Christmas guest.

Saturday, December 12, 2009

The New Texas Two-Step

As I begin this post, I have no idea what I'm truly going to write. I have so many things going through my mind...

I thought that Thomas' new map from earlier this week was going to be the silver bullet. The one thing that would lead Thomas to speak to me. Well, I find myself even more frustrated than before. The first couple of days following the the revision to his map, Thomas was babbling and more engaged with things going on around him. He was open-mouthed talking more than ever. Sean and I were thrilled.

Friday dawned with a quiet Thomas and an absolutely horrible AVT session with Ms. Becky. It was not horrible because of Becky, true to Becky's form she had an entire session filled with great "fun-work" for was horrible because we didn't get much verbalization out of Thomas at all. In fact, I broke down in tears during the session. I cried all the way home in the car and for hours after the session. I find myself tearing up even now because of where Thomas is in his development. I hate to admit that he is not where I expected him to be 4 months post-activation with a relatively good hearing ear on his left side. I expected him to grasp this new technology and run with it. I expected him to do a new Texas Two-Step dance and amaze us all with the two steps forward, two steps forward, two steps forward approach. Instead, I find us taking two steps forward and then two steps back.

With his diagnosis, it leads me to wonder if he has had two bad hearing days in his left ear. And maybe with changing his CI map, it isn't enough to manage a bad hearing day because he isn't getting enough from his HA ear. For the first time since detection of hearing loss, I'm wondering if I should be taking a total communication approach with Thomas -- this is a very, very hard thing for me to actually write.

More than anything, the point that is sticking out at the forefront of my mind is: I'm failing my son. I don't know what is wrong...what am I not doing for him...have I not done all the research that I should...does he have another issue going on that we have not yet discovered...

So rather than bitching and moaning even more because I'm starting to really cry now, here are the things that I'm considering doing:

1. Sean has agreed to take Thomas to a kinder music class on the weekends if I can find one appropriate for Thomas. Also, I'm thinking about giving Sean more responsibility when it comes to therapy with Thomas. Should the weekends be Dad's time to do therapy with Thomas? Would he be willing to do things for Sean that he won't do during the normal week? Hell, I don't know, but feel it is worth a shot.

2. I'm investigating getting Thomas into a preschool class with hearing children. Even if it is only one day a week and three hours and even if I have to be with him the entire time because he is a "special needs" child. Thomas will typically do things for his sister that he won't do for me. So, it leads me to wonder if Thomas doesn't need to see other children his own age talking and making verbal requests.

3. I'm thinking about asking his audiologist for a "bad hearing day" program for his HA ear. I thinking that I should be LING checking Thomas before any technology goes on his ears to see where he is that day. If I don't get the responses in the high frequencies, I'm thinking that I should put the "bad day" setting on his HA ear.

4. I'm going to order a teacher's lesson plan book. With all of the objectives that Thomas gets each week, I'm feeling overwhelmed. So, mapping out the entire week at one time could help me engage him more and keep me more organized. Then I can make notes in the lesson book and take to each of his various therapy sessions.

One final note -- if you've made it this far in my post...I have discovered the website: I have ordered some of the interactive books and the "plain talkin'" CD to try with Thomas.

Maybe with all of these things, I can get Thomas to make his own Texas Two-Step that is more movement forward and less movement backwards.

Thursday, December 10, 2009

The Correlation Between Sensory Integration & Mapping

On Tuesday of this week, we headed to our audiologist's office for an eSRT test. I didn't quite understand that the test has to be performed when the child is still -- good luck trying to get a 2-year old to sit still with a probe in his ear!

Well, after we got Thomas calmed down and helped him understand that we were not going to make new ear molds (which he absolutely HATES!), we began the test. Thank God above because Sean joined me for the test and Thomas sat on his lap quite happily during the test. I say happily, which isn't exactly true. We had a DVD player going with Thomas the Take Engine, Thomas and I made a game out of putting about 25 gold fish crackers one-by-one into his water bottle and ultimately I let him play with my iPhone...but, we completed the test. Again, thank God above!

So, here is what we learned. His sensory integration issues did, in fact, increase his pain threshold and that virtually all of his electrodes had too much power. The Med-el rep, that we met at our initial stimulation, was also there with Ms. Bari, our audiologist. The rep was asking me questions about how Thomas reacted to his CI and questioned if he ever resisted putting it on. I answered the questions honestly with a resounding, no. Thomas has never really resisted his CI. I think that it may have surprised her because his map was too powerful...this goes to show that sensory integration challenges can definitely impact the map. The most encouraging message of the session was when Ms. Bari looked at us and said that this new map should provide Thomas with more clarity...again, can I thank God above! We have such an awesome team working with Thomas!

Since the change in map, Thomas seems more relaxed, less anxious. He babbles a lot more and has begun to say more words open-mouthed -- okay, I have to prompt him to do so. However, I can't expect changes overnight. Even today, his teacher at the Hearing School of the Southwest said that he remained engaged during the entire class and when required to do so said words back with an open-mouth. They even had to drag him away from the finger painting activity, which says so much about how far he has come with the sensory issues with his hands. Wow!

Finally, one last thanks to God above...Your hand was definitely felt this week. Thank you!

Monday, December 7, 2009

A New Test Tomorrow

As a parent, you remember all the tests that have been performed on your child. With Thomas we have done numberous ABRs, OAEs, sedated ABRs/OAEs, booth tests, swallow studies, upper GIs, etc. Tomorrow, we head to our audiologist's office for an eSRT. So in case you are like I was a few days ago, you may be asking yourself...what the heck is an eSRT. Well the definition that I found is:

Electrical stapedius reflex test (ESRT): An objective measure that can be useful in establishing a most comfortable level in children with cochlear implants who are unable to provide feedback to the audiologist about the loudness of sound. A small probe is placed in the opposite ear. The stimulation level of the implant is increased until a small muscle reflex is seen in the opposite ear. This muscle reflex is present in most people and occurs at a level that is loud, but still comfortable.

We are hoping that this test will confirm that Thomas' map is exactly where it needs to be. While I trust our audiologist to the Nth degree, she recommended that we do this test given Thomas' issue with closed-mouth speaking and the potential for a higher than normal pain threshold due to his sensory integration challenges. She may be humoring me...which is probably what is happening because she can read Thomas literally like an open book, both in and out of the booth. However, I simply appreciate her offering this test as an opportunity to potentially optimize Thomas' map.

So as I sit here tonight and worry about tomorrow, let me just tell you about Ms. Bari. When I look back on the last two years of Thomas' journey, I think of three people that have made a huge difference in Thomas' life...Dr. B (his surgeon), Ms. Becky and Ms. Bari. Ms. Bari has been with me as I cried and grieved almost every single change in Thomas' hearing. Every, single, solitary time that I've seen her, she makes me feel that she cares so much for Thomas. She answers my crazy emails before hours, after hours, on weekends and even when she is suppose to be on vacation. She is so dedicated to her patients and their parents. She has that calm voice that makes you feel better and those caring eyes that let you know that everything will be okay. I know that she wants Thomas to succeed... she wants him to hear and speak...but I feel most of all that she wants Thomas to be happy. Without Bari, I don't know whether or not Thomas would be where he is today.

So on the eve of a new test, "hear" is to Ms. Bari. She is one of Thomas' angels here on earth...and we are so very blessed to have her in our lives!

Thursday, December 3, 2009

Fun With Snow & Bubbles

I wrote a couple of blog posts ago about my frustration with Thomas speaking with a closed-mouth. The funny thing is that his expressive language is expanding every week (okay, not really the week of Thanksgiving because we kind of took the week off and did therapy on-the-go), but his spoken language is expanding, simply with a closed-mouth. The thing that is really odd is that Thomas makes all the LING sounds with an opened-mouth when he is babbling. He only makes the closed-mouth sound when I or his teachers are trying to "teach" him what to say. I'm completely baffled...he has the ability to speak the sounds with an open mouth, but yet he chooses not too when asked to do so.

I decided to take a different approach with him the past couple of days. First of all, we had snow in Texas on Wednesday. Can you believe it? SNOW! I took the opportunity to bundle him up and take him out into the snow while it was still coming down. I talked in full and complete sentences to him as I would a "normal" 2-year old child. I then grabbed him close to me and hugged him and said quietly to him, "Thomas, it is snowing. This is the first true snow that you've been able to experience. Snow is cold (brr), wet and white. What do you think of the snow, Booka (this is my pet name for him)?" He looked at me and said, "sss-noooo." He loved the experience and then I quickly rushed in and dried off his CI and HA.

This morning he went to The Hearing School of the Southwest for some school time with Ms. Tami and Ms. Eileen. I adore these women and their love for our kiddos is truly endless and amazing. I asked Tami how Thomas did today, specifically about his vocalization. She said that he spoke most often with a closed-mouth. I of course, ran through every expletive that I know -- fortunately, in my head and not out of my mouth. I then brought him home, fed him lunch and put him down for nap. Following his nap, I thought to myself, "Okay, I need to find another experience for him, like the snow, that would make Thomas open his mouth to express sound." I remembered that Ms. Becky said to buy a bubble pipe for him. Ms. Sarah, his AVT at the HSSW, also said to make him blow bubbles through a straw in his bath water. This kind of grossed me out because I see bathing as washing yourself in your own filth -- yes, it is a problem that I have. So, I decided to have Sidney and Thomas blow bubbles into a big bowl filled with dish soap and water. They had an absolute blast -- 20 minutes worth of fun and a grand opportunity for language development. Before Sidney, Thomas' 7-year old sister, would blow bubbles in the water, Thomas had to say the word "pop." Most of the time it came out at "o-o," but it was all said with an open-mouth. Then, I made him express the "p" sound to ensure that he was hearing the higher frequencies, because his hearing can and has fluctuated in his left ear. Finally, I made Thomas say "again" which came out more as "ah-gn," but success because he again said it open-mouthed.

So as Ms. Becky asks me each Friday following therapy, what are your take home points for this week? My take home points are this:

1. Maybe I was expecting too much of Thomas to vocalize complete words just 4 months following activation. Maybe I should allow him to progress at his own pace and not the pace that his mom expects.

2. Maybe as his mom should, I should rethink therapy time with him at the house. Yes, I'll put him in the therapy chair and make him "work" each day. However, maybe I should invent activities for him that let him be a kid and incorporate vocalization into those activities.

3. Maybe I should not ignore the power of his older sister because when she is having fun & is also engaged, she is the better audio verbal therapist than I am...and a great model for spoken language.

4. Maybe Thomas' problem with speaking closed-mouth isn't his problem. Maybe it is that his mother should realize that he learns differently than she does. Maybe she needs to spend less time pressing him for expressive language and give him more time to process and understand.

5. Maybe I need to simply chill out a little and let him be a typical 2-year old that wants to explore everything. Maybe I need to let go a little and see what happens.

So, this is my recap so far this week...we had fun with snow and bubbles in Texas. And, Thomas worked with me during "fun time" and made sounds with an open-mouth. As I said a month post steps are better than no steps at all.