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.

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 Thomas...it 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: http://www.childrenspublishing.com 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.

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!

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!

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 activation...baby steps are better than no steps at all.

No One Else I'd Rather Be With...

I remember reading a statistic after Thomas was diagnosed with hearing loss in his right ear and again after the news that he would continue to lose his hearing in both ears. I was absolutely shocked to read that 50 percent of all marriages end up in divorce within a year of diagnosis of a special needs child. With each ABR, sedated ABR, MRI, genetic test and booth test, I remember the tears that we cried, the breakdowns, the silent moments, the quiet research done during the early morning hours on the computer...this was a time that I then began to understand how marriages could be and would be tested. You feel so vulnerable, helpless and out of control. It completely and utterly sucks. I have no other words for this time in our lives, it simply sucked.

So, it brings me to today...my husband and I are more than two years post detection, diagnosis, more testing, further diagnosis and understanding. While our marriage is far from perfect, it is solid and growing stronger. Unlike many wives that most likely remember their husbands on their wedding day, following the birth of their child, the night of one romantic evening...I remember the look on my husband's face while we were waiting in the cafeteria during Thomas' CI surgery. I looked into his eyes and said, "There is no one else that I would rather go through this with...thanks and I love you." He took my hand and said the same thing back to me. It was one of the most important times in my life.

My husband, Sean, is an amazing man. Of course, he is the father of my children, but he is much more than that. He is my rock here on Earth, he is my best friend, he is the one in our family that makes everyone laugh, he makes Thomas verbalize when Thomas refuses to say anything to me...without Sean I would not be where I am today and our kids would not have the benefit of his constant love, his sense of humor or his sometimes twisted view of life. He makes me want to be a better wife, mother, therapist and person...he keeps our house humming (many times to the tunes of bands that I don't know).

I don't want my marriage to end in divorce...I want this crazy, twisted, amazing, wonderful, loving man and father in my life forever. He is an amazing role model for Thomas and Sidney...I don't want to be a statistic...I want to buck the trend...I want Sean to stand beside me when Thomas says his first sentence...I want Sean to be with me when we take Thomas to kindergarten...I want Sean with me when Thomas graduates from high school and later graduates from college...I want Sean with me when our kids get married...I want Sean with me when Thomas welcomes his own child into this world.

So times have been tough in the past couple years, that fact is unmistakable. However, I can tell you today, there is no one else that I'd rather be with...

I Hate LVAS!

I know that newly-diagnosed families search out and read blogs all the time. I always want to be upbeat and positive about how Thomas is doing with LVAS. However, I can not do it today...

Since diagnosis, I have said many times that I hate what this has done to Thomas, to me and to our family. However, I have never said that I hate the diagnosis...until now. I hate, hate, hate, hate enlarged vestibular aqueduct syndrome! Okay, I feel somewhat better now.

Unless you are familiar with the syndrome, and if you are your already know why I hate it, you don't know that the hearing in each ear can fluctuate at any given minute. Dealing with a two-year old that can't tell you what he is actually hearing makes it increasingly difficult, if not impossible, to determine on a day-to-day or hour-to-hour basis. Ugh, it makes me want to scream just writing about it.

So, here is where we are today. Thomas has amazing receptive language. I can tell him that we are going to get in the car to go to school and that he needs to get his shoes before we go. If I give him appropriate wait time, as directed by our wonderful AVT, Ms. Becky, he will go to the cabinet, grab his shoes and bring them to me. Then, when I ask him, "What do you have?" He says, "oos." However, this is said with a closed-mouth...like so many of his low to mid-frequency words (he will only say, "sh" in isolation). He is saying pretty much all words or word approximations in the low to mid-frequencies with a closed-mouth.

For example, we are singing the song "One little, two little, three little, Indians." I sing the first line and look to him to fill-in the word "Indian" or at least some sounds to know that he is hearing what I am saying. He is giving me the appropriate inflection and sounds back to me, just with a closed-mouth. He is says the following words with a closed-mouth:

All done
more
out
ouch
moo
go
shoes
choo-choo
again
ah-ah (for the airplane)
wee
hi
bye-bye
up
down
oh goodness, I've lost count.

I have emailed our beloved audiologist to see what she thinks may be going on with Thomas. Make no mistake, we love our audiologist. She rocks this world and has helped Thomas beyond belief!

This may not be an issue about what Thomas actually hears. It may be how he is processing the sound? Maybe because of his sensory integration issues his pain threshold is higher than it should be and that his CI is up too loud in the low to mid-frequencies? Maybe he has lost or gained hearing yet again? Maybe he is being lazy in his expressive speech and as a typical two-year old, he thinks he can get away with it? Maybe his lack of eating skills makes his word development incorrect? Maybe his mom is a complete and total freak for worrying that her two-year old son who was activated less than four months ago isn't talking in a way that other people understand? Or maybe my gut is right and some "thing" is just off with Thomas and we haven't discovered what that "thing" is?

So until I have an explanation of what that "thing" is I tell you today, "I HATE LVAS!" I hate it because it is the only "thing" that I truly understand when it comes to the challenges that Thomas faces...I hate it because so little is understood about it...I hate it because Thomas has it and it is completely out of my control.

Need Help...Sensory Integration

I think that I have shed more tears over Thomas in the past two years than I have shed over his sister in seven years. This is not to say that I don't love them equally. It is simply an acknowledgment that Thomas has been heavier on my heart, more challenging from a health perspective, and frankly a little bit more of a "turd" (the term of endearment that his father has labeled Thomas -- another way to say he challenges our limits every single day)."

So today, I cried because I took Thomas in for an OT assessment on his sensory issue with his hands and lack of eating a wide variety of foods. I heard from one of Thomas' AVTs that "waking up" his mouth to texture and flavors might help us get over some of his closed-mouth talking. I admit that I was probably stupid in my narrow-minded thinking that a health care professional would only look at the things that I reported were a problem.

During the two hour assessment, I learned that Thomas has low muscle tone. She didn't reference strength, simply it is a balance/control issue that she sees in him -- he is clumsy and falls more than other kiddos. Also, she said that he seeks vestibular stimulation which is why he is pretty much constantly in motion. That his brain is having trouble seeking "constructive" ways of getting stimulation because he has no fear of the consequences of his actions. She also put something sour in his mouth and he reacted negatively. She was concerned that Thomas didn't use either verbal or non-verbal communication to say what he wanted or needed. I simply talked until I determined what he needed. (please note that I'm reporting what I heard her say and I admit that I was getting emotional as all this was happening).

All in all, she said that we need to work on sensory integration with him. Hence, my tears. I can't imagine another therapy appointment during the week and that the therapy appointment will be one hour in the car each way. He is already struggling with two days of school each week, AVT with Ms. Becky on Fridays and ECI twice a month to work on feeding therapy. Plus add in CI mapping sessions, booth checks for his left ear and AVT therapy with me here at home. Thomas has very little time to be a typical two year old boy...playing, discovering...let alone being able to eat and sleep at normal times. Give him a freakin' break!

So, here are my questions that I need help with:

1. Has anyone else done sensory integration therapy? How does it work? When do you start to see benefit? Is there any end to therapy...what does success look like?

2. Does anyone else have a child with EVA/LVAS with sensory issues -- U know that balance can be an issue, but perspective other than not having fluid in their ears? How did/are you manage these challenges? Is this something that the mind learns to compensate for?

3. I can't find research on the Internet that shows how sensory integration works for kids other than autistic children. Does anyone know of any research that I can read?

4. Is there any way to help incorporate verbal development while working on the other senses? What can I do to help him vocalize more other than the typical words like up, down, inside, go, wee, etc? How do I try to make this therapy more than just about the other senses?

Thanks to anyone/everyone, in advance, for their help and guidance. It has been a very long day for both Thomas and me. He will probably fall asleep in the next two hours due to not having a nap...as for me, I'm thinking chocolate or a glass of wine might help me feel better!

Better People...

This past Friday, Thomas and I went up to Sidney's school for a family picnic...well the picnic was in the hallway because believe it or not, it is cold here in Texas. Okay well, cold for us Southern folk.

Anyway, we got there early and Thomas decided to stroll right into class and take the seat next to his sister. All of her second grade classmates, turned to look at Thomas. They then quickly began to whisper and I knew exactly what they were talking about. They were saying, "What are those things on his ears?" "Is he deaf?" "Can he hear us?"

So, I took a deep breath and strengthened myself for the onslaught of questions. I have to tell you that every single child was respectful, curious, non-judgmental and not at all rude, unlike the many adults that can be so rude while you are simply trying to get your shopping done at Target. You know what I mean...the stares that go on just a few moments too long or the looks of pity.

The children had questions that were so innocent and sweet. One boy even said, "Wow! He has a lot of power on his ears!" Sidney handled all the questions like a trooper, too. She would answer questions so simply, in a matter-of-fact tone and on a level that her peers could understand. Meanwhile, Thomas was running around the room, pulling books off the shelves, pretending to read them and then running off to discover something new.

I thought to myself...why do I worry about how children view Thomas? They are curious, but so accepting at the same time. I simply hope this innocence continues when Thomas starts public school. I love the innocence of children and many times wish that adults still had this trait...wouldn't it make us all better people?

Books, Boxes, Balls and a Little Parrot

Recently, my friend, Tammy, put together an amazing blog post outlining her theme of "Apples and Leaves." She is one of those "super moms" that you aspire to be and are proud to call your friend. While I'm not as organized nor as creative, I decided to post about the things that Thomas is loving right now while he works to listen and speak. He is starting to parrot back consonants, vowels, inflection and duration of sound. It isn't perfect, but I have to remember that Thomas isn't on his maintenance map yet and he has only been activated for a little over two months!

First of all...books. For some reason, probably because he is a 2-year old boy, Thomas loves trains (please, no Thomas the tank engine jokes). He loves the pop-up book "The Whistle on the Train." No surprise here, it is a take-off on the "Wheels on the Bus" book that Thomas destroyed several months ago. Listen to Thomas try to say, "ding, ding, ding."



Other books that Thomas loves right now are: Five Little Pumpkins; Five Little Monkeys; Polar Bear, Polar Bear; Goodnight Gorilla; and The Napping House.

Second of all...boxes. Last Spring, Ms. Sarah made a knock-knock box for Thomas and the other children in the mom-and-tot program at The Hearing School of the Southwest. We have used it actively since she gave it to him. Ms. Becky got Thomas completely hooked on wind-up toys. This is Thomas working with the box and his response to the learning to listen sounds "ss" for snake and "hop" for bunny. Something that I don't show you is that Thomas is able to pick from a set of 4 learning to listen toys when I ask him to grab a specific one.



After watching this clip, I heard the voice of Ms. Becky in my ear correcting what I'm saying to him. Maybe after Thomas is mainstreamed in school I'll go back to school to become a true AVT :-)



Other boxes that Thomas loves are: The A,B,C discovery boxes from Lakeshore Learning. They just arrived yesterday and are already a huge hit. Thomas' older sister, Sidney, got out the V, S, P and U boxes. We hold the boxes to our mouths and make the sound. Then, we hold it to Thomas' mouth and have him makes the sound. He made all the sounds, but V which came out sounding like B. I can't wait to film Thomas playing with these next time!

Finally...balls. A couple of weeks ago, I remember emailing Ms. Becky so frustrated that Thomas wouldn't say the word "ball" even though I knew that he could say it and he knew what a ball was. Out of desperation, I bought the bowling set from Target and we started "playing" more during therapy.

Not only do we get the word "ball," but Thomas is also trying to say the word "roll" and is starting to say "yahoo!" He is also vocalizing trying to count as I put the pins up to bowl again. Check it out in this clip!


Other ball ideas for you to consider are... a soccer net and soccer ball to use in the house. We work on "kick the ball" and "goal" and "try again" and "oh-no" and "yea!" Also, I recommend golf sets for outdoors only because we quickly found out that golf clubs are weapons of mass destruction when used inside the house on objects such as TVs, furniture and ovens and weapons of terror on things like his sister, the dog and yes, sad to say, mom and dad.

Again, I'm no Tammy but, here is my first stab at giving some ideas for therapy...I hope that you find it somewhat helpful or at least somewhat amusing.

Perspective

Like most parents with a special needs child, I sometimes get down in the dumps. Woe is me, woe is Thomas...the world is simply unfair. Why does my child have to be hearing impaired? Why is God choosing to challenge Thomas and me? Then frustration sets in centering around how other "normal" two year old children can put short sentences together while my "special" child works so hard to say a single word to me.

Normally, God comforts me to make me feel better or gives me strength to face the challenges before me. Sometimes, however, He gives me a slap across the face and says, "Girl, you better realize that I gave you a gift. Nourish your son and be thankful that I have given you what you have!" Well last night and this morning, He hit me so hard that I cried.

You see, last night I walked in the Candlighters' 5K in downtown Fort Worth. This organization supports families of children battling cancer. I saw children there that are in the middle of their battle and they were surrounded by loved ones. I walked the little over three miles with my friend, Sheri. We talked about stuff, nothing really important. At the end, off we went to resume our lives.

This morning I received an update from my friend, Matthew, about Hayden, his son. Hayden is a five year old boy battling cancer and he is about to get on a plane bound for San Francisco to try a treatment to get rid of the one remaining spot of cancer. Hayden has been through countless surgeries, chemo, etc. He has been physically built up simply to be knocked down again by this horrible disease. His parents are amazing individuals with strong spirits and a true love for each other and their family. They have faced so many challenging days that I simply don't understand how they keep going. And through all of this, their faith in God has been strengthened.

So, if you are reading this blog and you believe in the power of prayer, please stop what you are doing and say a prayer for Hayden. Please pray for "no evidence of disease" following this latest round of treatment. Pray for continued strength for his parents, Matthew and Lizzie.

As for me, I will add more prayers thanking God for slapping me across the cheek to make me appreciate the "special" child that I have. Thomas' fight to listen and speak is no comparison to the struggles that Hayden and his family have been through. The power of this family is so inspiring to me. I hope one day to be as brave, strong and loving as they are. I pray that Hayden, Lizzie and Matthew will walk away from this battle and resume their normal lives. And, I appreciate God giving me perspective on my own life.

What a Busy Week!

Looking back on the completion of this week, I simply have to say, "Whew!" Monday started with doing therapy with Thomas here at the house. He wasn't very interested in anything that I planned to do, such the typical 2-year old. This kind of worried me because he usually lets me get at least 30 minutes at a time in the therapy chair at home. We quickly moved on to our 2 hour sensory and feeding assessment with ECI of Texas.

So, Tuesday came and we went to the pediatrician's office for Thomas' 2-year check up. All positive news there -- Thomas is 36" (90%), 31 pounds (75%) and has a 19" head circumference (25%). He has been in these ranges since birth and I was happy to see that we didn't lose any ground in his weight. That afternoon, Thomas once again didn't want to do therapy with me. So, I began to get frustrated which made me worry some more.

Wednesday rolls around with an appointment at the audiologist for new ear molds. As I was driving home, I got a "wild hair" and pulled in to our local Target. I wanted to scan the toy aisles to see if I could find some new therapy toys for Thomas. Boy am I glad that I did! During our afternoon therapy session, Thomas said "baw" for ball, "moo" for the cow and the "hoo" in yahoo. It felt like a light switched on in him. At dinner time, I LING checked him while he was in the high chair using conditioned listening. Not only did he perform well with the new conditioned listening toy, he spoke back to me "ss" "sh" "ah" and "mm." Needless to say, I was on cloud nine.

So then on Thursday, I dropped Thomas off at his grandparents' house and I went to a wonderful educational conference at Cook's. It was my first time to see Carol Flexer in action. Goodness, she is so knowledgeable, easy to listen to and frankly kind of fun. She reinforced so many of the strategies that we have been using through the wonderful coaching of Becky, our cert AVT. While I did learn a lot about Theory of Mind, I think that my big "ah-ha" moment from the conference wasn't anything tangible. It was inner calm knowing that we are on the right path and that our AVT is an amazing woman. Becky is simply great with Thomas and me, which is no small accomplishment given Thomas and my personalities. She supplies such clear goals each week and does a wonderful job of coaching me during therapy sessions. She is such a blessing.

Friday is audio-verbal therapy day. I was so excited to see Becky and tell her about all the great strides Thomas made this week. I really didn't have to tell her that much because Thomas showed her most of them. Becky gave me some great advice about pausing longer, not working on things that Thomas already knew and many other nuggets. Spending time with her is always a great way to end the "work week." I feel energized and much more aware of what I should be doing with Thomas. I'd love to get him home and immediately start working on them. Thomas always has different plans though and takes a minimum 3 hour nap after working with Becky. I guess it has been a busy week for him, too. If he could, I know that he would say, "Whew!"

No Serious Stuff, Just Fun!

Our little man is turning two years old tomorrow and he is a little over two months post-activation. To celebrate his birthday and to use as blackmail in the future, I'm posting portions of some videos of Thomas dancing during therapy. He doesn't typically do music therapy while standing on the family room coffee table, but for this one time he did. And yes, he is wearing only a t-shirt and diaper. I will apologize now for my horrible singing!

I must say that two years ago I never imagined that I'd give birth to a deaf child. Now, I can't imagine my life without him -- or both of my children for that matter. I love my kids so much! Also post-diagnosis and post-activation, I wondered whether or not Thomas would truly enjoy music. Needless to say, that he enjoys music very much and has absolutely no sense of rhythm, like his mom.

Without many more words from me, here is Thomas doing the motions to various songs. Happy Birthday, Thomas! You are loved more than you will ever know and your parents are so proud of how hard you work to listen and speak.

Busta move, baby boy!

Is It Too Much to Ask?

Recently, our family visited another CI family for some fun, football and relaxation. While we were there, Thomas took a spill on the playground equipment by their home. While a bump on the head doesn't mean a whole lot for most kids, for Thomas it could mean that his hearing in his left ear could totally go away. In the blink of an eye, he could go from a mild to moderately-severe loss (depending upon the frequency level) to a profound loss.

I remember when Thomas was first diagnosed. I had so many fears...and now I find myself in a new place. I'm tired of the worry, the fears and the "what-if" thoughts. We know that his EVA/LVAS is physically worse in his left ear even though it is the one "good" hearing ear he has. We know that his hearing could go away today, tomorrow, ten years down the road or decades from now.

This may be hard for some people to understand, but I think that I'm ready for Thomas to lose all of his hearing. I want Thomas to have consistent hearing levels, even if it means that there is no hearing at all. I LING check him twice a day. With each check, I wonder if he didn't respond to "s-s-s" because he couldn't hear me or because he is a typical almost 2 year old, and ignoring his mom because he wants to not because he can't hear me. I'm mentally prepared for his second cochlear implant surgery, healing and activation. When Thomas grows older, I don't want him to have to worry about his hearing going south. I'd like for it to already be a "done deal" and one that he conquered at a young age.

So, these are the question that keep running through my mind lately...Is it so terrible that I wish for Thomas to lose the remainder of his hearing? Am I a bad mother for wanting something that most parents would think is a horrible incident for any child? Am I being selfish for not wanting the worry anymore? Should I do my best to protect him as long as I can...minimizing falls, no airplane rides, etc?

The truth is that I vacillate between wanting his hearing to go away completely and wanting to keep it as long as we can. I know that it truly isn't up to me. It is in God's hands. However, the control freak in me wants to simply know the exact date, time and location of when his hearing will disappear. Is wanting this information too much to ask? As a mom, I think not.

Top 10 Things We Have Learned in the Past Month

So, it has been a few weeks since I've written anything about how Thomas is doing in his new hearing adventure. To be honest, I've been trying to soak everything in and we've had a lot going on in other areas of our household (yes, there are other parts of our house that I don't write that much about).

Also, I have struggled with things to write about...things like audiology appointments, therapy sessions, frustrations, little joys, no change kind of days. So as my dear friend Tammy told me a few months ago, "Just post what you have written, what is on your mind." I have to admit that it is hard for me to simply post without reading, re-reading, editing, then re-reading and editing some more. Before my current stay-at-home life, I wrote things everyday. Things like press releases, sales aids, media response statements, presentations, etc. Business things that were so important at the time and yet things that I wrote decades ago.

So drum role please...I'm going to write for the first time since I started this blog, a whole whopping three posts ago, I'm going to write from my heart and not my head...this is the top 10 things that we have learned since activation exactly one month ago...

1. Baby steps are better than no steps at all.

2. The happiness of your child matters more than whether or not you get an entire contiguous hour of therapy in each day...playing with your child and giving a voice overlay is what is important.

3. Prayer and patience is more important that pressure and pain.

4. Love more that your child understands the concept of "giving a hug" than saying the word "hug."

5. Playing at the pool in August after not being able to swim for almost 7 weeks is the best treat a little kiddo can have. So, let them have their CI off for an hour while they splash around, enjoy the summer sun and breathe some fresh air, without sweating in the Texas heat.

6. If you are making dinner, putting Sesame Street on the TV for 30 minutes isn't going to set your child back months in verbal advancement.

7. Seeing your child dance during therapy with only a shirt and diaper on while he's cutting a rug on the family room coffee table is absolutely priceless. Yes, I have this on video and will post in my next blog. And yes, I plan to blackmail him with said video when he is older!

8. Taking some time for you helps your child in the long run.

9. Allowing your child to learn a new hearing instrument is what needs to happen. Just because your child knew how to play the piano a little with his hearing aids does not mean that he can pick up a cochlear implant guitar and immediately start playing. (This lesson came from our fabulous audio/verbal therapist).

10. Having the best team of people on your side makes a heck of a different..."hear" is to family, therapists, audiologists, surgeons, friends with HoH, deaf or Deaf kiddos, friends that loved you even before this miraculous child entered your life, your church family and most of all to God for giving you a beautiful child that he has trusted only unto you...and I'll slip #11 in at this point...know that God won't let you screw up your child too much before He decides to step in :-)

So, I post now...without reading, re-reading, editing or proofreading...it is from the heart and feels good to get off of my chest.

Miraculous Team...Eternal Coach

So, Monday was activation day. I talked in my first post about how Thomas was blessed with an amazing hearing and speaking team.

Well, his surgeon did a wonderful job on his implant surgery. The recovery time was quick and the bruises were minor. His doctor of audiology helped us select what we believe is the right device for Thomas and our family. She helped to pave the way to CI surgery and consulted closely with our surgeon. Our certified audio verbal therapist (I know know that she has many other acronyms following her name) truly outlined for us the path to listening and speaking success. Her opinion of the regression that we saw in Thomas' development was the main reason for our surgeon believing that it was time for surgery. So, we had our surgeon, our quarter back, the doctor of audiology, our play caller, and our cert AVT, the trainer that prepared us for the game. Overall a miraculous team...a team that got us where we are today. Our thanks are never ending and our appreciation is bountiful.

So, the star of the team, Thomas, prepared for activation with a 13 hour sleep the night before that gave him the stamina for game day. As you can see from the smile on his face, he was ready to take on the day and make it a success!



We head off to the stadium, Cook's Children Northeast Clinic, at about 9:30 for our 10am activation session. Of course, we don't go onto the field (our audiologist's office) without Thomas roughing up a few kids in the waiting area. We truly need to work on his aggressive behavior, but that is another post topic.

We begin the day with making the star player as comfortable as possible...DVD player, toys and snacks. Initial stimulation begins and Thomas reacts with a few amazing moves...watch this:



He breezed through initial stimulation and moved onto the sounds within the room. I brought out his "wheels on the bus" toy and he got to hear all the sounds...he loved playing the "r" sound and then listened to the song over and over again.

Our cert AVT/trainer was at the northeast clinic and came to see the star player. I so wished that we got her on video...but, alas that will need to be for another day. We were able to catch a picture of our audiologist/play caller before the star departed the stadium. BTW, this picture is in the booth because when we finished Thomas thought that it was time to go to the booth...so, we sat in the booth for this first picture with CI on...this still brings tears to my eyes.



So we get set on his first four maps or programs...not sure exactly what to call them. We leave the field and head back to the locker room (aka the house). He is wide awake...so I do about 30 minutes of therapy with him. Now remember that Thomas has very good residual hearing in his left ear and originally benefited well from the hearing aids...so we did his usual music therapy because there was no way that I was going to get him back in a chair. He didn't miss a beat, no pun intended. He did all the movements to "Wheels on the Bus," "Shake Your Sillies Out," and "Brush Your Teeth." He pointed to all the parts of the face and his belly button. He even did the "clap" for the snap of Mr. Crocodile in Five Little Monkeys. All was great...but, the star player needed to head to bed for a little rest before the second half.

Second half, we played a lot and I simply watched his reaction to sound. We then took our new dog for a walk around the block. As we walked, I heard an airplane overhead. I said to Thomas, "I hear an airplane. Do you hear that? (then pointed to my ear)." He looked up into the air, pointed to the sky (he couldn't find the plane because of the clouds) and said, "Ah!" He then pointed to his ear. I just about cried for the ump-tee-nth time that day. We then heard a helicopter and dogs barking. He doesn't know "woof" or "whopa-whopa" yet. So, he just pointed in the direction of the noise and then to his ear and made noises like as if to say, "I hear that!"

So, now you know how the star player was supported by his miraculous team. However, we cannot end talking about this truly great day without talking about the most important element of all...our Coach...Jesus Christ. Without Him, nothing about game day would have been possible. For so long I was frustrated, angry and confused as to why Thomas was given to Sean and me. So many people would say, "God doesn't give you more than you can handle" (which I still despise this saying to this day)...or God has a plan for you and your family. Well, the joy in our hearts on this very special game day could have only come via our Coach...He motivated us to face game day, and kicks our butts to ensure that we are ready to face the numerous games before us..and gratefully, He holds us in His hands when we need an "off day." Glory be to God! Without Him...we would truly not be where we are today. In a truly hearing world...one that contains all the wonderful sounds that the Coach has put in the big game of life...

We have come so far and have so far to go...

As I mentioned in my first post, Thomas had his CI surgery recently -- on June 29th to be exact. As you can see from the picture to the right, he looked like he had a large tumor removed, not a CI implanted! While I would love to tell you that he immediately bounced back following surgery, that would be a total lie. He had about 4 days that were filled with whining, restless nights and questionable eating patterns. All in all though, it was okay...not great, just okay. Would I do it again? Yes, if it would mean that Thomas could hear even better than having one CI alone...no, if we can keep the one relatively good hearing ear that we have right now with his left ear being moderately severe to mild.

So you might ask yourself right now, why in the heck is this crazy woman writing today about a surgery that happened 3 weeks ago. Well, we will be activated this coming Monday. Like most parents, we are fearful that Thomas "won't accept the CI" and won't learn to truly listen and speak. We have seen such an improvement in his babble, expressive language and understanding since we took the hearing aid off the right ear, following surgery. He is picking up new consonant and vowel combinations, he is saying "hi" and "bye" again, giving word approximations for "up" and "down" again, he even on Friday of last week did the clap for Mr. crocodile in "Five Little Monkeys" and it was the first time that we really worked on the sentences at home.

His audiologist and AVT agree that his right aid was probably providing too much distortion for Thomas to truly understand language -- one of the reasons we moved forward with the CI. So now, I'm scared that he will take huge steps back AGAIN in his auditory verbal skills because his brain will have to learn a new signal or way of listening. Now I fear that his "good hearing ear" will distort the sound being received by the CI. What if his hearing improves again in his left ear to moderate to mild? Does that impact how his brain understands the CI??...so, I worry.

I realize that it is our job as parents to worry about our children -- no matter if our children have special needs or not. Worrying is something that I do best (ask my husband :-) Worry keeps me up at night and wakes me early in the morning.

I worry because Thomas works so hard every single day to listen and speak...he has fought so hard to deal with fluctuations in his hearing, he has come so far with the hearing aid technology we've been able to give him...and yet I worry because he still has so far to go...

So, our story is not different...just personal

Over the past year, I have become somewhat obsessed with reading the blogs written by parents of children with hearing challenges (I cannot say hearing loss because children with Thomas' diagnosis have losses and then gains -- hence my selection of the word "challenges"). I have laughed, cried, raised my fists in the air and felt the strong pangs in my heart of mourning, angst and anger, all after reading your posts. Your stories have inspired me, made me feel anger deep within my bones, and brought me to my knees in prayer...thank you for giving me the strength to face the challenges before our family. Your stories have impacted so many, and I thank you for your gift.

The past year has not been so different for our family than the hundreds of families out there in the world that face the challenges of hearing loss...hence the title of this blog.

Our son, Thomas, is 21 months old and was diagnosed with bilateral enlarged vestibular aqueduct syndrome at 5 months of age. He was born with a severe to profound hearing loss in his right ear and normal hearing in his left ear. My husband and I knew in our heart of hearts that we needed to know whether or not Thomas would lose hearing in his left ear. We were challenged by 2 different ENTs before we finally found Thomas' ENT, and ultimately his surgeon for his CI, which Thomas received two weeks ago...Thank God for Dr. B!!!! If you have ever walked into a doctor's office, met the doctor and said to yourself, "okay, this is the doctor that we can trust to take excellent care of our child." That is what Dr. B is to us...

Well rewind to before his CI... Thomas' hearing fluctuated during his first year and a half of life. Following a fall in the driveway at about 17 months, he became profound to no response in the right ear and moderately severe (lower frequencies) to mild (higher frequencies) and we lost almost 6 months of audio verbal therapy development in expressive language. To say that we were devastated does not really describe our feelings...remember when your family first discovered that your child was hearing challenged?...this was our feeling once more...just almost a year after diagnosis. The warm tears of sorrow were again felt on our flushed cheeks.

We also felt the need to press for a cochlear implant -- even though Thomas didn't fit the "text book" need for a CI. I will go off on somewhat of a tangent here because I will tell you right now...if you think that your child would benefit from a CI, then your gut is the best tool that the Lord has given you. We didn't have to fight because Thomas' team of experts believed that a CI was right for him...but, if your is not as lucky as ours was, fight, fight, fight for what you believe is best for your child. You are your child's best advocate...it is your job to do what you think is right!!!

I will sing the praises of Thomas' team of experts, his audio verbal therapist and audiologist, in coming blogs (because they truly deserve their own post)...just know that these two individuals are amazing people...they truly love Thomas and want what is best for him. Thomas would not be where he is today without these two professionals...who also show love for Thomas while also being empathetic and his advocate every single day. To rave about these individuals does not do them justice...they are truly Thomas' angels here on earth.

So I guess, this is where I'll begin our ongoing posts, hopefully not diatribes, of our challenges...we are not different from you...we're just taking this opportunity to make hearing challenges...personal.

Your child is as amazing as ours...love their tantrums, quirks and little sounds they make...they make them who they are...yours...and make your story...somewhat different!