Our Little Man's Adventure

Crayons in a Crayon Box

2012-01-26T10:52:00.000-08:00

With every new year, it seems like our family makes changes. This January is no exception...two big ones were made. One I'll share about in this post.

I've written previously about how I haven't been head-over-heels in love with Thomas' mainstream preschool. One thing that I've come to trust is my "mama gut" and it was telling me that Thomas wasn't in the right place anymore. So back in October, I got Thomas on the waiting list for a preschool that was recommended to me by a dear friend. You know "that" type of friend that you truly trust to give advice and opinions -- she is an awesome woman! Anyway, the preschool FINALLY had an opening.

I went down to meet the teacher and to talk with the director again earlier this week. I loved the new teacher. She is gregarious, loving, patient and more than anything she really wants Thomas in her class (and yes, she knows that he is hearing impaired). So, Sean and I decided to make the move. I spent about 45 minutes yesterday with the teacher, director and another staff member walking them through Thomas' technology document that I put together, how everything works and what to do in case of a problem. I also took them through the backgrounder that I created for Thomas' IEP meeting. When the teacher saw the photo of Thomas post CI surgery, she started to cry and looked at me with the sweetest eyes...it wasn't sympathy it was empathy in her eyes. It was so cool.

When Thomas got home from his auditory/oral preschool, this was our conversation:

Me: Hey, Thomas. Please come sit down. I want to talk to you about something important.

Thomas: Oh no, do I have to go to timeout.

Me: No sweetie. It is something different that we need to discuss.

Thomas: Oh, okay I'll come sit down next to you.

Me: Do you remember the school that we visited a few months ago? The school where you went into the classroom and made a special new friend very quickly?

Thomas: Yes, I remember it.

Me: Well, how would you like to go to school there instead of Light of the World? Now, you would still go to WA Porter and have Ms. H as a teacher. Does that sound good to you?

Thomas: Oh yes, Mommy. That sounds like a great idea.

Me: Cool, you get to start going to the new school tomorrow. Is that okay?

Thomas: Yes (with grin and excited look on his face)! Thanks Mommy...I love you (then he reached out and gave me a big hug).

I took him to school this morning. He was a little shy at first but, quickly got into the swing of things once he put his backpack, lunch box and folder into the correct places. The teacher introduced him to all the kids in the class. Thomas would say hello, shake their hands and declare that it was nice to meet them. Once circle time began, I was asked to sit at the front of the group and talk with them about Thomas' technology. I have to admit that I stole the idea of talking about differences as with crayons in a crayon box from my friend, Tammy.

I began by saying that everyone is different. Everyone sitting on the rug looks different, just like all the different colors of crayons in a crayon box. No crayon in the same box is the same color. I then asked Thomas to come sit on my lap.

I asked the group this question, "What do you think is different about Thomas?" They all threw out things like his hair is brown, not like mine. His shirt is blue, no one else has a blue shirt on, his shoes are different than mine, etc. Finally after about 5 answers, a little girl in the front row said, "Well, his ears are different." I said, "You are a really observant young lady. His ears are different. Thomas can you show them your aid and implant?" Thomas turns his head and says, "This is my hearing aid." Turns his head to the other side and says, "This is my cochlear implant."

Even though I know that it isn't technically correct to compare the two, I told the class that just like people wear glasses to see, like me (I wore my glasses to the preschool), that Thomas wears his implant and hearing aid because they help him to hear. I got a big, "OH!" from the group. I then asked if anyone had questions. All the hands that were raised were to tell stories about how they had someone in their family that wears glasses or what their favorite color was, etc. They REALLY DIDN'T CARE that he was different. They just accepted him into the class.

As I walked to my car, I thanked the Lord for giving me the "mama gut" feeling to change schools. I thanked Him for such a great start at a new school...and as I drove away...tears of joy streamed down my face.

We are all like crayons in a crayon box...unique...and just like us all...Thomas IS DIFFERENT!

Hangin' with Carnies and Cowboys

2012-01-22T06:59:00.000-08:00

It's that time of year again...the Fort Worth Stock Show and Rodeo is here. Sean and I took the kids yesterday to enjoy the festivities. What a wonderful opportunity it was for our little man to explore vocabulary and actually work on his balance (via the rides and wacky shacks), too. Here are just a few of the pictures of our family fun.

Thomas and the Moo-Brothers

The kids faces when we reached the top of the ferris wheel.

The view from the top of the ferris wheel...hence, the kiddos' reactions.

Sid coming down the long slide. Thomas was too short to ride this one.

Thomas driving his "monster truck."

Sid ready to go around on the swings (this would be enough to make me toss my cookies).

Sean is such a good daddy...squeezing into the airplane with the kids.

From planes to helicopters.

Enough of the carnies, bring on the cowboys!

What a joyful day it was...yep, we will be going again this coming Saturday for more fun!

Utterances

2012-01-09T15:46:00.000-08:00

Birdville ISD is updating Thomas' CASLLS assessment for the mid-year. I was asked to give a list of Thomas' most recent utterances, not full conversations.

Some things I noticed while typing up the list. Thomas continues to leave out helping words in his sentences. He will ask questions with inflection rather than a question word at the beginning of the sentence. He has started to again leave off the "s" at the end of some of his words (making note for mapping discussion with his audi) and he is using "tired" words...sounds like Mom needs to be a walking thesaurus yet again.

Here is the list that I provided to his AWESOME teacher:

1. We need to go to the car wash, Kiki. Your car is very, very dirty. You need to make it clean.

2. Look Mom. These crackers are square. You can help me eat them.

3. Not sing it, Daddy. You read it.

4. I got to eat three crunchies and one sandwich. Okay?

5. Mom, I want to ride that scooter not this one.

6. Cydney, let play baseball.

7. I'm first. You can be second.

8. Hey, Mom. Watch me do a scooter race. Ready, set, go!

9. See? I go fast then I put my leg down like this. It my brakes.

10. I can promise you.

11. You can help me with this one, please.

12. Please bring the computer laptop right here by me.

13. I'm collecting carrots to feed the bunnies.

14. My room is green and Sidney's room is blue.

15. No thank you. I just making my own train track.

16. No. First I need to clean both cars real quick. Then we can go to the restaurant.

17. Hey, Mom. You twist this water open for me, please.

18. Okay, I' gonna beat you again this time.

19. I need a bat and a shoe and a clock and a dog.

20. Sidney, you need to play Kinect right now. I already told you to do it.

Guess Who!

2012-01-03T12:46:00.000-08:00

So, our new favorite "therapy" toy (other than the iPad 2) is the game, Guess Who, which Thomas got for Christmas from his awesome Aunt Kellye. My sister used this game with her youngest son years and years ago. Soon I'll write a blog post about the cool iPad apps that can be used for therapy.

Anyway, this game is really wonderful in helping a hearing impaired child, or any child really with:

Pronouns -- Thomas is about 75% accurate in his use of he/she and him/her. This game allows for self-correction or correction by Sidney, Sean or me.

Inclusion/exclusion -- closing the doors of the objects that don't match the description and leaving the doors open for those that do.

Asking questions (we break the rules and allow open-ended questions) -- our little man has a bad habit of leaving off the question word at the beginning of the sentence, many times simply using voice inflection to get across his question. This game forces him to use "does" "is" "what."

Reasoning -- identifying which questions are appropriate to ask, including the most recent question from Thomas, "Does your appliance use electricity?"

Attributes -- not only does this game use people it has boards showing appliances, monsters, types of faces (young/old), expressions, etc. It is wonderful to see Thomas' vocabulary expand by changing out the different game boards.

Speech -- we can correct his "l" "r" "w" and his blends as we play the game.

Following directions/taking turns -- as with any game, there are rules to follow and turns must be taken to stay on track.

The game says that it is appropriate for ages 6 and up but, we started using this the day after Christmas. It has been so fun...our next game to open up is Zingo.

Flying Solo

2011-12-29T15:43:00.000-08:00

We have entered a new era with our little man, Thomas. Today he did booth testing with our awesome audiologist, Dr. Bari, and let her test him for an hour all.by.himself! The little stinker actually let her do an eSRT on his CI. She was able to get 4 pairs of the electrodes done before he totally stopped cooperating.

Here are the results we got:

CI Only
He is still testing around the 30dB mark across the frequencies with only his CI. Med-el considers a properly mapped kiddo between 25dB and 35dB. Given the distortion he experienced when we got him between 15dB and 25dB, I consider this to be a good thing. His speech recognition threshold unilaterally was at 30dB. The cool thing is that his speech perception testing, without noise, came in at 92%. Can this sista get a WOO-HOO?

HA Only
He has held constant at between 45dB (low frequencies) and 55dB (high frequencies) unaided. He didn't have the patience for aided unilateral testing with his aid. However, Dr. Bari was able to get his speech perception testing done. Again, he scored 92% aided but, this time with an aided speech recognition at 15dB. Again, give me a WOO-HOO!

CI Mapping
With the eSRT testing, we found that each of the 4 pairs of electrodes were over-powered by approximately 4 charge units. So, she adjusted these electrodes and interpolated the remaining electrodes. We will see how this new map is and will go back again in another 3 months for more eSRT testing and bilateral testing.

I have to admit that I'm damn proud of how Thomas has matured when it comes to hearing tests. His patience has increased dramatically...although I have to admit...I bribed him with a new toy from Target if he did exactly what Dr. Bari wanted of him today. When we left Cook, we immediately drove to Target and he picked out a new monster truck toy to join his growing collection at home. He is SUCH a boy!

A New Look at Food "Chaining"

2011-12-09T07:47:00.000-08:00

With Thomas' hearing loss issues somewhat under control and his language progressing at a rapid rate now (knock on wood), I've been focusing my time with him on his eating issues. It is primarily soft textures that he struggles with and has a HUGE defense mechanism when it comes to trying new foods. While we spent our 3 weeks with the awesome people of the John Tracy Clinic this past summer, an OT there recommended that we develop a reward system for trying new foods. She told me about a link system that goes from the ceiling to the floor (like retro Christmas tree garland). When the child eats or tries a new food, they get a link in the chain. When the chain hits the floor, they get a reward.

Around the time we were denied coverage for behavioral feeding therapy from our insurance carrier, we started our work on the chain. Thomas was so excited to learn that he would get a new toy when the chain reached the floor. BTW, this was also a great language opportunity to talk about links in a chain, getting longer, taller, closer, counting, etc. Also sequencing about which color goes first, second, third and finally fourth.

We started with simple crunchy textures that were not very offensive. We moved on to other textures like pizza, waffles, grilled cheese sandwiches, etc. Well this morning after eating his waffle, Thomas' chain reached the floor. He was so proud of himself! We brushed his teeth and immediately went to the grocery store so he could find his new toy. After carefully considering all the toys available and talking through all the options, he chose a bulldozer/backhoe combination vehicle...he is SUCH.A.BOY!

Now to start our next chain...what foods to work on next? Mommy may need to give this some thought while enjoying a glass or two of wine this evening.

Free therapy Idea

2011-12-06T15:07:00.000-08:00

So if you're like me, you could go broke buying "therapy toys" for your hearing impaired or deaf kiddos. I'm always looking for ways to stretch my dollar to accomplish our AVT goals. While I always adapt books, games, etc. I was looking for a cheap way to focus on objects by description, using a blind set. I found that using the Christmas toy catalogs that come in the mail was a FREE way to do this.

We play the game by my holding the catalog and giving two clues like, this vehicle has flashing lights. Then Thomas proceeds to guess...police car, police boat, fire truck, ambulance, tow truck, etc. Then I turn it around and have him give me a clue...Thomas playing the teacher.

We have adapted our game to 4 step direction...Thomas first find a firetruck, second a Star Wars toy, third a girl toy and finally/last a computer game.

This fun has also given me a complete list of Christmas gifts that he wants...with a shooter (a.k.a. a nerf gun) at the top of his list.

Fun and free playtime...I mean therapy!

Tears...

2011-11-30T17:37:00.001-08:00

Tomorrow we leave for Mexico to celebrate the wedding of my husband's friend, Jesse. Jesse is an awesome guy...the first friend that my husband found as he began his undergraduate work on the huge campus of Texas A&M. Sean and Jesse are like two totally different peas in a pod...different, yet the same.

We are going sans kiddos to the wedding. I haven't been more than an hour away from the kids in a couple of years...this is kind of hard for me...and yet easy knowing that there is no turning back once we make it through security at the airport. So, I packed all their clothes, school stuff, technology, wrote out their entire schedule including school and teacher phone numbers, and packed books/toys/etc for the next few days. I'm anal so I packed lunches, coordinated clothing, wrote a detailed agenda, etc.

Thomas knows that we were leaving for a trip and that he will be staying with his grandparents. He knows that we will return on Sunday and we talked all about how Kiki, his grandmother, was going to get him to and from school. How he needs to eat well and sleep well. How he needs to be nice to his sister and helpful to his grandmother and grandfather. He was cool as a cucumber as he said good-bye to me tonight. He was excited. This was an adventure in his eyes...so cool, and he had the language to express his emotions.

The tears came when I said good-bye to my Sidney. I looked at her and she was completely fine, no tears and kind of excited in her own right. I then lost it. I started to cry, told her how much I was going to miss her; kissed her face, hands and hair. She started to cry, too. We hugged and kissed and hugged some more. Our tears melded as we held each other, becoming one. I so love her...sometimes I don't say it enough. This may be why it becomes so special when we do let our guards down and let our emotions flow. She is my "normal" child...the one I don't have to worry so much about...yet, I love her just as much as I love my "special needs" child...she gives me strength, tries my patience, and tests my limits but...damn! I love her so much.

As my friend, Tammy, helped me learn in LA...we have children that aren't hearing impaired/deaf...they need our love, too...I miss my Sidney girl already...tears...

Christmas Cards Are Ordered...

2011-11-21T06:23:00.001-08:00

Putting this together made me realize what an amazing year it has been...a week off from school due to snow, spring break at Lake Travis, 3 weeks at John Tracy, fun weekends at the beach, a wonderful Halloween...can't wait for the holidays and to see what next year brings for our family!

Photo Card

View the entire collection of cards.

Parent-Teacher Conference

2011-11-16T14:39:00.000-08:00

Why does the thought of a routine parent-teacher conference, no matter which child it is for, always make me somewhat crazy? Somewhat may be an understatement. With all my heart, I want both my children to succeed, to become exactly what God wants for them, to be kind, loving, smart, funny, beautiful children.

So as I drove up to Thomas' mainstream preschool for my parent-teacher conference, I said this little prayer...Dear Lord, I ask that I feel Your presence with me during this meeting. May I listen intently, respond accordingly and not cry. Please help me not to cry.

I was expecting the worst from this meeting...after all Thomas is hearing impaired...so he won't be on average with his hearing peers. I kept remembering the fact that we are not suppose to compare children and yet that is exactly what a parent-teacher conference to discuss assessments is...comparing. Comparing sucks!

I took a deep breath and walked into school, meeting Thomas' teacher at a small table with his file sitting right there on the table. I sat quietly as his teacher expressed how much fun Thomas is and how she enjoys having him in her class. I thought to myself, "She probably says this to all the parents." Then I thought again, "Well, she should say this to all the parents of the kids in her class." So, I relaxed.

I could go into all the details but, will refrain from getting it all down of cyber-paper.

Our little man is on average with his hearing peers. Academically, he is on track with the kids that he will go to kindergarden with in a year and a half. His gross and fine motor skills are where they should be with him being able to put together a zipper and zipping it up, etc. (smile)

He has an issue with waiting for other children to answer questions that the teacher asks to the group. He doesn't wait for the teacher to call on him to answer the question asked...he just blurts out the answer with his hand raised. The problem is that the other children now don't answer questions during circle time, they just look at Thomas to see if he gives the correct answer. I'm suppose to talk with him about waiting for others to answer too and discuss more about taking turns. His teacher said, "I don't want to discourage this too much because this is how leaders are made." (smile)

He thinks differently than other kids. When presented with a problem or issue, he takes the less traveled path or discovers a different way to solve the problem. He is a thinker...a tinker...maybe a creative thinker. (smile)

He doesn't like to do worksheets (a tie to the previous mentioned comment). So, his teacher has set an egg timer to 2 minutes so he knows that he has to work on a particular worksheet for that amount of time. His handwriting needs improvement but, he writes his name in a legible way. I need to work with him on this type of effort here at home. (half-smile)

He is social, almost too much so. He tends to talk to his classmates when the teacher is talking. He is friends with everyone, not showing too much preference to a single child, although he says that Micha and Nathan are his best friends. (smile)

He doesn't have a sense of personal space. An example given, if a child is sitting on "his" letter (the letter I), he will sit right next to the child sitting on "his" letter. Over a period of time, Thomas will scoot so close to the child to make the child feel uncomfortable. He isn't aggressive, hitting or pushing...just scoots. I asked, "Where is this letter on the mat?" The teacher answered, "Right next to me." I explained that Thomas is seeking preferential seating due to his hearing impairment, not wanting to miss anything that she says. He is self-advocating in a non-aggressive way. A lightbulb went off over her head and she got it. (kind of a toothy smile and a slight giggle from me because Thomas is such a turd)

As we finished the conversation, there wasn't a single big "we have a problem" area that Thomas needs to work on while here at school or at home. This meeting wasn't what I expected at all. While his teacher isn't a TOD, AO teacher, she is a licensed preschool teacher in the state of Texas and gave me feedback looking at him as a "whole child."

I know that he still has ground to make up in his expressive language but, it was nice to hear some positive news about assessments...I won't compare him too much to everyone else...I'll just keep smiling, keep working with him and keep thanking God that he gave us our little man.

Mom Moment Monday -- AVT with Ms. Becky

2011-11-14T15:20:00.000-08:00

Sean took the day off and ventured to our twice a month AVT with the our little man and me. Of course, Ms. Becky had all the Thanksgiving things laid out for us to do together. We had a great session. Thomas was quite the conversationalist, followed 4-step commands (easy commands) and talked to himself as he placed colored feathers on the turkey...explaining where each color went and the order of the steps. It was quite a fun session.

As we played with turkeys, I was struck by the words, "gobble, gobble." I remember last year that I rejoiced when our little man said these 2 simple words in a video that I sent to my family on Thanksgiving morning. This year I give thanks for the fact that he now uses them in a full sentence. I'm thankful that AVT sessions are actually fun now, not at all like the work they once were. I'm thankful for seeing a mom with a baby in the waiting room at Cook that asked me about Thomas and his implant as she placed hearing aids or her sweet child. I'm thankful for the fact that I'm now in a place where I can look another mother in the eye and tell her it will get better and that CIs will make a HUGE difference in her young one's life.

Most of all, I'm thankful for hearing these words from Ms. Becky, "Thomas is doing great...you know he won't be in AVT forever." When we started on this journey with Thomas, I did think that he would be in AVT for most of his young life, with no light at the end of the tunnel. Her words to me today were...gosh, how do I put my feelings into words?...AMAZING, UPLIFTING, REASSURING, NEEDED, COMFORTING and REJUVENATING. What I saw in her eyes as she said these words...LOVE...LOVE...LOVE.

I'm thankful for Ms. Becky, her coaching, her believing in our little man but, most of all her love for Thomas and our family. Not a bad way to start off the "work" week with so many things for which to be thankful...

Quote of the Week

2011-11-10T16:02:00.000-08:00

From Thomas as I was fishing bread out of the toaster:

"Mommy, be very careful. That's really hot. It's dangerous. You might get hurt, go to the hospital, and get a shot. It will be okay (as he pats my leg). You can get a Bugs Bunny bandaid."

Mom Moment Monday -- It's All About Vocabulary

2011-11-07T10:06:00.000-08:00

Thomas is "guppy of the week" at his mainstream preschool. A part of this special week is sharing a poster of pictures and items that are "all about Thomas." Yesterday, we went through tons of pictures from his past and talked about his life...it was truly a special time. This morning, we put together his poster and it was all about vocabulary, vocabulary, vocabulary!

I had him identify each picture, what happened during that special time in his life and then expanded the language even further, using new vocabulary and trying to develop his "theory of mind." I was surprised at how many different synonyms our little man already knows. Here is a list of what vocabulary or concepts we worked on while making the poster:

Straight versus crooked, the back side versus front side, upside down versus right side up

Being born, that everyone was a baby when they were born, hospital, excitement (using his dad and me as the theory of mind people)

Ocean waves crashing, chilly water, tasted salty, California, vacation weekend, our friends from JTC, swimming, sand, surfers, pier, sunset, sunrise, hotel room with balcony, pool, etc.

Family, mother, father, sister, grandparents (not using anyone's names -- just the titles)

Reading books with his father, favorite books right now, what will happen next, how do you think he feels? Why does he feel that way?

First day with hearing aids, how special it was, trying to remember if he was excited and how daddy and I felt on that first hearing day

Remembering Halloween, going door-to-door with our friends, quantifying how much candy he and his sister received, how excited everyone was to go trick-or-treating together

His favorite animals, ocean animals and zoo animals, his pet and how zoo animals are not pets, his favorite activities, soccer, football, baseball, various shapes of these objects

Present tense verbs that end in (s) not (ing), sleeps, plays, gets, goes, sits, jumps, listens, joins, eats, etc.

I wish that I had done this project with Thomas sooner...I'm thinking that this could be an activity for each season making special posters to remember the things that we did during the summer, fall, winter and spring...that way I can incorporate themed units into the poster as well.

Overall, not a bad way to spend "therapy" time with our little man...remembering awesome moments together!

It's Official: We Lost Our First Implant

2011-11-02T17:00:00.001-07:00

So, I was rushed to get the kids in the car because I had to get gas before taking Sidney to her class at church this evening. I get Thomas in his car seat, get gas, arrive at the church and we sit down on the couches outside the sanctuary. I look over at Thomas as he is playing on the couch and notice that there isn't an implant on his right ear. Panic mode sets in...along with the question: how could I be a mom that loses my son's implant? I mean we have had technology on his ears for three and a half years, never losing anything! Gasp (and some bad words that fortunately didn't come out of my mouth at church)!

Here is the conversation with Thomas that occurred:

Me: Thomas, where is your implant?

Thomas: It's on the couch, mom.

I then began to tear the couch apart, cushions, underneath, moved the ottoman, etc.

Me: Thomas, look at me. I need to know where your implant is. Tell me where it is.

Thomas: I told you, remember? It is on the couch.

Me: Well, it isn't here. Let's go check in the car.

Then we get to the car...

Me: Now, Thomas where is your implant? Is it in your car seat? In my purse? In the back seat?

Thomas: Nope.

I rip the car apart. We then we retrace our steps, not finding the implant. Crap! We take Sidney to her class, give hugs and run to the car. Get Thomas buckled in and I race off to the house.

Thomas: Mom, can we listen to the pony song (a song that we got from JTC).

Me: No way! We can't listen to songs until we find your implant. Now Thomas, where is your implant?

Thomas: It's on the couch.

Me: Which couch? The one at home or the couch at church?

Thomas: The couch at home, mom.

Me: Well, I hope so. When we get home you go find it right away.

Thomas: Okay, I will.

We walk in the house. Thomas looks on the little couch (the love seat)...

Thomas: Oh no, mommy! My implant is gone. Where is it?

I look on the big couch and see it sitting right there.

Me: Thomas, your implant is right here on the couch like you said it was. Listen to me. Are you listening?

Thomas: Yes, I'm listening.

Me: Don't ever take your implant off without giving it to me, daddy, your teachers, Kiki, Papa G or Sidney. Do you understand me?

Thomas: Yes, I give my implant to mommy, daddy, Ms. Herring, Ms. Cara, Ms. Sinclair, Ms. Gomez, Kiki, Papa G and Sidney. Okay?

Me: Yes, my sweet boy. That would be great.

Thomas: Okay, let's play now, okay?

Me: Nope, time for bath.

Thomas: Ah man, not yet, please.

Then more negotiation begins about not taking a bath quite yet.

Lessons learned:
Lesson #1: Check his ears, even if you don't have the time to spare.
Lesson #2: Listen to your child, he probably know where their implant is anyway.
Lesson #3: Calm down, don't freak out...this is why we have insurance plans.
Lesson #4: Repeat steps 1-3

Video: Our God Is a Great Big God

2011-10-30T16:43:00.000-07:00

Our church had the children 2-5 sing during the adult service. You just gotta love a video of your child (hearing impaired or otherwise) singing about our Lord and Savior! Makes my heart swell ten times bigger than before service.

Our little man is the guy with the tie t-shirt on and black jeans...you know the cute one toward the right of the screen (yep, I'm biased).

Our God IS A Great Big God!!!

And...we add more therapy sessions...

2011-10-27T11:16:00.000-07:00

A little over a month ago, Ms. Becky, our amazing cert-AVT, explained that Thomas was ready to reduce his AVT sessions to every other week. This proclamation scared me because we have been in weekly AVT since Thomas was 7-months old and he is still behind his hearing peers but, making fast progress. She said that he was ready, picking up language in more "natural" environments, not necessarily in therapy, and he was doing great work in school. So, I trusted Becky and I have to say that she was right. He continues to make great progress...even though I miss seeing Becky every week (selfish, I know).

Yesterday, I took our little man to Our Children's House in Grapevine Texas for a behavioral feeding evaluation. The feeding therapist worked with Thomas on his challenges with non-crunchy textures and saw all the things that I reported in writing...so assuming that we get insurance approval (fingers crossed), we will start feeding therapy twice a week, every.single.week until he is over this issue. So, losing one therapy session every other week will be replaced by two sessions every week...sigh!

I left the facility crestfallen. I was on the verge of tears the entire trip to Thomas' auditory oral preschool. These are just some of the questions that went through my mind: Why did he have to go through this? Hasn't God challenged him enough? With these new therapies, we will have to pull Thomas out of his mainstream preschool and add additional afternoon sessions with his A/O class. Will he still continue to develop his language at his current pace? If he is ready for mainstream preschool again next year, will I be able to find a spot for him at his new school or another one of the same caliber? Will he be ready for kindergarden in a year and a half? Will this feeding therapy really work? How long will it take to complete? Selfishly, how am I going to do this? I can't go back to Thomas vomiting again at every meal...how is this all going to work?

I dropped Thomas off at school and watched him walk with his best friend and his teachers into school and I lost it. I simply saw yet another hurdle for Thomas... and said aloud, "How are we going to do this?" The tears flowed and flowed and flowed as I tried to safely drive home.

I have to admit that I've been in a funk ever since...maybe needing to cry some more...maybe needing God to slap me in the face with His direction, not mine...maybe it is time for a little vacation from the kids before we start this new therapy...maybe I need to stop being selfish, suck it up and just do it...because the fact is...we are adding more therapy sessions.

Mom Moment Monday

2011-10-24T09:14:00.000-07:00

We all have those little moments as a mom that makes our hearts happy. I'm dedicating Mondays to share some of these moments that I have with our little man.

This morning we went to our local Kroger to do some shopping and play "I spy" as we shop. This morning was different because we actually had fog, dense pea-soup fog. As we drove in the car and walked inside the store, we talked about fog, how it was difficult to see, how we needed to be extra careful in the parking lot, etc. As we were leaving the store after a competitive game of "I spy," Thomas ran up to a boy that was younger than him and said, "Be careful, boy. It is foggy outside and hard to see. Look both ways for cars."

Then we came home to play alphabet bingo (a great game that Thomas' great-grandmother gave him for his birthday). We were working on following rules, identifying letter sounds and correctly using has/have. The little turkey actually beat me 3 out of 4 games...followed the rules, had about 50% correct use of his letter sounds and used has/have correctly 100% of the time.

Overall, a good little Monday morning with a couple of happy mom moments.

The Vomiting Negotiator

2011-10-21T17:13:00.000-07:00

So this evening, Thomas vomited his dinner on the.last.bite. Sigh...

Thomas wanted desperately to play Kinect with his daddy. I knew that he was tired and that his vomiting was a sign that he was overly tired -- a lesson taught to me by the wonderful Ms. Tammy. Two of her kiddos also vomited when they were overly tired.

After the clean up was done, Thomas and I sat on the floor on the kitchen to talk. The master negotiator in Thomas took over his body, mind and language. Here is a snapshot of what happened:

Mommy: Thomas you have to eat dinner.

Thomas: No, mommy! I want to play Kinect.

Mommy: Well, you have to eat dinner if you want to play Kinect with daddy.

Thomas: First, take a bath then play Kinect with daddy.

Mommy: Nope, you need to eat dinner. How about 3 pieces of chicken and potato?

Thomas: No, two pieces of chicken and chippies (what he calls chips).

Mommy: No deal. Twenty-four bites of chicken and 10 bites of potato. Deal or no deal.

Thomas: No deal, mommy. I want chippies and french fries. Then play kinect with daddy.

Mommy: No way. This is my final deal. You get in the bath, then play 10 minutes of Kinect then you eat all your dinner including applesauce. Deal or no deal.

Thomas: No deal.

Daddy: Thomas, this is your mom's best offer. I recommend that you take the deal.

Thomas: Hugs mommy. Hugs daddy. Deal. Bath then ten minutes of Kinect then eat supper.

Result -- quick bath, playing Kinect and about to see if we can keep second dinner down in his stomach...ugh! Sometimes this kid wears me completely out but, he also is learning great language skills, becoming the master negotiator -- and notice the number of verbal exchanges -- a goal for expanded conversational language.

Vomit and all...good language opportunity...time for a glass of wine for mommy...and second dinner for our little man.

"The" Talks

2011-10-16T15:17:00.000-07:00

On Friday afternoon, I "talked" with the director of the other mainstream preschool that Thomas and I toured to tell them that we wanted to be on the waiting list for the older 3's class rather than have Thomas in a classroom with peers a few months younger than he. It was a hard decision to make because Thomas really liked this new preschool, especially a little girl named Molly. However, we don't want Thomas to regress, even though his language would still expand being around children a little younger than he. Nonetheless, a class with his actual hearing peers would be better.

So, this brings me to "the" talk that I'll have with his current preschool teachers and administrator this coming Tuesday. This past Thursday, I was encouraged by another mom (an awesome Mom & strong advocate for her typical-hearing child) to go and sit down with the director of his current mainstream preschool to tell her how important his FM system is and that I was displeased that his teacher didn't follow up my emails to schedule a time to learn how to use it. With this mom as my inspiration, I walked in and requested some time with the director. She immediately said, "Why don't we talk right now?" So, we went to her office and I grabbed the tissue box just outside her office door...because I knew that I was going to cry...I always tend to do this when it comes to our little man. We had a great discussion. She apologized for not getting the technology in the classroom already and we scheduled the meeting with his teacher for 9:30am this coming Tuesday.

While I still don't know if this is the preschool that the Lord wants Thomas to attend, I also don't know that it isn't. So, I pray for strength, ability to also listen, encourage questions and a sense of peace. I haven't felt much peace lately...but more than anything...I pray that the teachers (all of them including music, Spanish, chapel and PE teachers) will use the FM system appropriately. And if not, I ask that the Lord give us a spot quickly at the other mainstream preschool.

Deep breath for the talk this coming Tuesday...deep breath that Thomas continues to thrive...deep breath...

Guess Who Is Four Years Old!

2011-10-03T13:05:00.001-07:00

How did this happen? It seems like yesterday that our little man came into our lives. Now, he is 4 years old and will proudly tell you this fact.

Rather than do a kiddie-party this year, we decided to spend his birthday weekend doing some fun things that Thomas loves (and his big sister had a blast, too). First, we took the Trinity Rail Express from Fort Worth to Dallas. Thomas loves trains and this was his first official ride. We hopped off the train and went to the Dallas Aquarium. Finally, we stopped off for a relaxed lunch before boarding the train for the trip home. The train was definitely the highlight of the day. Here are a few of the pictures I took during our adventure.

On Sunday, we skipped church (shh, don't tell anyone) and we went bowling. We also opened presents and ate cake.

Happy birthday, our sweet boy! Hope that you had a very special weekend!

Mom always knows best, right?

2011-09-27T09:39:00.001-07:00

When we decided to pull Thomas out of the Hearing School of the Southwest a year ago, I knew that it was the right thing to do. Well, God had a strong hand (kind of a slap that I needed) in my decision to follow my gut and make some changes for our little man. These changes made a huge difference in his overall development and his receptive/expressive language really took off.

A year later, I find myself not knowing what to do. I almost don't even want to type the words but, I'm not loving Thomas' mainstream preschool teacher (whew, I actually wrote what I've been feeling for weeks now). Last year, we were blessed with an AWESOME, LOVING, THOUGHTFUL and SPECIAL teacher at the same preschool. I can't say the same words about his teacher this year.

I haven't even taken Thomas' FM system to the school yet because I don't get the sense that the teacher wants to be bothered with it. In fact when I was in the classroom last Thursday to help them with Thomas' hearing aid, I said to the teacher that I would be happy to come in with Thomas before or after school to show them exactly how to manage Thomas' technology (I was also going to show them how to use the FM system). The teacher brushed over my offer and changed the subject. Really, really what teacher does that?

Also, Thomas hasn't eaten a full lunch (often times only eating some chips) since he's been in her class this year. She doesn't seem at all worried about this. There are 16, yes 16, three-year olds in Thomas' class. I can only imagine the noise level of the class and with Thomas not having his FM, I'm wondering what he is actually hearing.

I guess the biggest issue is that Thomas isn't as excited to go to his mainstream preschool as he is to attend his auditory/oral preschool. I love his auditory/oral teachers and more importantly, so does Thomas.

So, I've contacted another preschool here in Keller that was recommended by a friend of mine. I'm going to tour it later this week or early next week. I'm sure that there will be a waiting list but, it is potentially better than his current spot.

I just wish that God would give me another slap to make me know for sure that "Mom always knows best!"

Thankful Thursday

2011-09-15T17:23:00.000-07:00

This week I'm thankful for:

Catching up with my sister on the phone. She is such an awesome woman that talking to her always makes my heart 10 times bigger than it was before we chatted. Also, getting a quick call just to confirm that Thomas didn't have the recently recalled N5...she is always thinking of others.

Working on a family advisory council for Cook Children's Rehab. I love that my child goes to a facility of wonderful clinicians and staff that want to make sure that they are continuously making improvements to help all families. Can't wait to continue our work on the "progression of care" binders for all the various types of therapies and services that they provide!

Hearing my kiddos laugh and talk together...I love how Sidney continues to expand Thomas' vocabulary...they also make my heart grow 10 times bigger almost every day of the week.

Receiving all the emails, phone calls and facebook comments about how to help Thomas with his ongoing feeding challenges. I'm calling tomorrow to schedule a formal evaluation.

Seeing Thomas' huge smile when he gets off the bus from his auditory/oral preschool...he truly loves it.

Getting a facebook post saying that a friend of mine enjoyed listening to Thomas sing the songs in Sunday school class...my friend didn't know it but, she made my week. She even gave me a CD of all the songs that they are learning so I can sing them with Thomas at home -- thanks bunches, Andra!

Knowing that the weekend is just around the corner and I can sleep in past 6:15...hopefully seeing the sun shining before I have to get out of bed.

Having some fun friends over this coming Saturday afternoon to cook out and to watch some college football.

I'm very blessed.

ABC's

2011-09-14T08:48:00.001-07:00

Thomas has become infatuated with his ABCs! Earlier this week, we put together his ABC puzzle and he started to sing his ABCs. Like many kids, he gets "lost" around the L-M-N-O-P part of the song. Also, he started to sing the "Alpha Tots" version of the song at the end but, he is definitely trying to know them all.

His auditory/oral classroom has been working on "open" and "closed" letters. We had fun making an open-C and a closed-O. He is also doing well making his A with the guidance of his mainstream preschool using handwriting without tears.

Gotta love a kid that loves to learn!

Me and My Bike

2011-09-11T12:49:00.000-07:00

Our preacher at Hillside is doing a series called "Faith that Works" a study about the book of James. During the series, he has drawn the metaphor of our faith as a bike that we ride along the path of life. We have the choice to turn the bike down the wrong path or the path that God is calling us to choose. During today's sermon, he stated that some of us are not even on the bike. That we got off the bike gradually or that we simply stopped and got off, and can tell those around us the exact date that we got off our bike.

I got off my bike the day that we got the results from Thomas' MRI. We received the enlarged vestibular aqueduct diagnosis from our ENT/surgeon and I saw before me a steep mountain that I didn't want to ride my bike up. It was a rocky path, not even a road or sidewalk in sight. So, I tossed my bike aside and started up the mountain because I didn't want the weight of my bike to slow me down...I could take the mountain on my own. I didn't need faith in God to get me up to the top.

This was the absolute darkest time in my life, without question. I was angry at everyone, especially God. I cried every single day for months on end. I was depressed and couldn't even talk to many people about what I was going through, let alone pray for help. I completely shut down and in doing so picked up many bad habits that ultimately became sins -- self-reliance, pride, selfishness, being closed-off emotionally, among many others. I simply focused on getting Thomas the technology, the services and home program needed. My bike at the bottom of the mountain was becoming old and rusty, with flat tires.

About a year into walking up the mountain in complete darkness, I realized that I couldn't do it alone. So, I sat down with our pastor and he "told me like it was." He didn't pussy-foot around, he gave me a reality check like no other. This was a big step for me because I found people of true faith to be intimidating, especially our pastor. I cried while he shot me straight and remember one specific thing that he asked, "Who are you to think that God won't use your own child to make you the person that He wants you to become?"

So, I went back down the mountain, serviced my bike and got back on it. Today, my bike still has training wheels because my faith isn't truly what it should be...I still have fits and spurts of spiritual energy...I sometimes coast along when I should be pedaling to take on the next uphill section of our journey...but sometimes, I pedal hard and feel God's wind at my back to help me along.

As Thomas' fourth birthday approaches, I'm wanting to buy him a big boy bike. Of course, he will need training wheels. Hopefully, I can give him the training wheels from my bike...then I will be totally relying on the Lord. I'll have to keep pedaling and not get back off. This is one of my prayers today...keep pedaling and taking the path that God wants, not getting off or slowing going backwards down the mountain.

Another prayer is for the thousands of people that recently received a hearing loss diagnosis or failed newborn hearing screening. May they not get off their bikes, may they turn to God for guidance and strength. May they not take the path that I did not so long ago.

My final prayer is for my children...may I help them learn about their bikes, teach them how to ride and let them pedal down the paths that God has chosen for them.

Amen.

Another challenge besides hearing loss

2011-09-06T12:55:00.000-07:00

As background, Thomas suffered from severe reflux as an infant/early toddler. Throwing up was a constant battle for him and wore the both of us out almost every.single.day. This was later compounded by sensory integration issues with soft and mixed textures. We went to OT for 6-months and graduated once his hands and feet were desensitized to texture, along with progress in other SI areas.

As of right now, we still face eating issues with our little man. He wants and demands to eat the same thing at every meal. We have been fairly successful with having him eat out but, still ordering the same thing for him. It has been difficult to say the least, especially when we travel and stay at hotels. I can't order the exact same meal for him as I personally make him at home. It makes social gatherings nearly impossible unless we feed him before we go to dinner at a friend's house, or take his food with us to prepare.

When we were at John Tracy this summer, the OT that observed Thomas recommended our getting back into OT but, focusing on his eating issues. I have to admit that this made me cry, not little tears but, huge, fat mombo-jombo tears. I can't go back to him throwing up all the time, making 2 meals 3 times a day, all the tears and the struggles. I know that this sounds so selfish but, I'm being totally honest!

Heeding the OT's recommendation though, Sean and I tried (okay, maybe bribed) to get Thomas to eat a peanut butter sandwich this past weekend...what kid doesn't love peanut butter? I practically lived on it when I was his age! He ate almost half of a sandwich and then, yep you guessed it, he vomited all of it up at the kitchen table. Additionally, he hasn't really eaten any of his lunch at his mainstream preschool, even with encouragement from his teachers. Peer pressure doesn't seem to impact our little man, unlike all the information that I've been reading lately.

When I took him to preschool this morning, we agreed that he would eat three bites of everything (the typical lunch that I make everyday at home) that I packed in his lunchbox. I arrived at school to pick him up and Thomas proclaims, "I didn't eat my lunch, Mommy. You're not mad or sad. I'm not going to timeout." I kneeled down and said, "I'm disappointed that you didn't eat any of your lunch. You need to eat to become big, strong and learn all of the great things in class." His response to me? A big hug, kiss and he said, "I love you, Mommy." Nice try to get me off the subject. It almost worked and then I said, "Nope, we are going to go home and make a special snack." His response, "I'm not going to eat peanut butter sandwich." I said, "Okay, you don't have to eat peanut butter sandwich today."

We walked out of school and I was seriously trying to come up with an idea of what to make him, keeping in mind that I have to get him eating something that I can pack in his lunchbox. Then, I remembered my husband's recommendation of toasting the bread. So, I told Thomas that we were going to make a toasted cheese sandwich. I talked about the ingredients, the process and how it would taste. We walked into the house, took off our shoes, washed our hands, I lifted him up onto the kitchen counter and we began making his snack. I even let him pick out the cookie cutter to make the sandwich fun (of course, he chose the train engine).

While he didn't eat the whole thing, he ate probably half of what would have been an entire sandwich...small victory for him...yes? Not throwing up...huge victory for us both...definitely.

It still makes me wonder and need help from all the awesome parents out there in "blog-o-sphere." Who else faces these issues? What do you do to help your child? We've tried food chaining in the past without success, does it really work? What has been successful for all of you? Should I get him back into OT again? Or should I look at feeding therapy only (which we did before and wasn't successful)?...sigh! Help! And, thank you for any responses that I get!

Thankful Thursday

2011-09-01T11:19:00.000-07:00

To be completely honest, I'm stealing this idea from a parenting of special needs children magazine. I want to have a positive day of the week where Thomas (when he is older) and my friends/family can read about the little things that I'm grateful for each week.

So here goes nothing -- I'm grateful for:

Having a team at the public auditory/oral preschool that understood that two or more hours on the bus coming home is too much for any child, let alone a 3-year old. Thomas' bus ride home is now clocking in at roughly 45 minutes.

My children loving to go to school each and every morning without complaining (although I do miss the kisses and hugs when they tell me good-bye).

Eating lunch by myself yesterday at a local bakery and having some quiet time to read The Shack.

Going shopping with a girlfriend for a few hours and talking about things other than our children.

My husband recommending that I escape for a bit this coming Saturday to have lunch with a dear friend that I haven't seen in months...even though he is not so secretly wanting to watch college football without feeling guilty that he should be helping me around the house.

Getting an email from Thomas' new speech therapist at school simply to tell me that Thomas said to her, "Thank you very much!" at the completion of yesterday's therapy session. Yea for good manners!

Hearing a recap of Thomas' day at preschool in which he ACTUALLY told me almost all of the activities that he did in school.

Cheese grits and a daughter that loves them.

The cool front that is suppose to knock our temperatures down below 100 degrees this coming weekend.

A Difficult Start to School

2011-08-30T09:01:00.000-07:00

So, the first day of school at the new auditory/oral class at Birdville came and went for Thomas without any issue. Well, I say that but, he completely melted down when he didn't get to ride the bus home with his new friend, Caleb. He clung tightly to Ms. Cara and wouldn't let go. Sean had to pry his arms away and carry him to the car. Other than this, it was a pretty great day for him.

Then Wednesday came...I dropped him off at school and he was excited to ride the bus home from school that day. I was told to expect about an hour for the trip home. An hour came and went...and hour and a half came and went...and at 2-hours after school dismissal Thomas arrived home via the bus. I was in tears when he arrived. He was exhausted and needed to use the bathroom quickly.

I talked to transportation services, sent emails to the teacher, our advocate and the director of the deaf ed program. I was beside myself with concern. I was told by transportation services that Thomas would be home an hour after school released on Friday. I put my faith in their hands and let him ride the bus home again. This time an hour came and went...at an hour and a half, I called the bus barn and was told that Thomas was 15 minutes away...this time came and went...2-hours came and went...and at 2-hours and 35 minutes Thomas arrived home. He was in tears. I was in tears but, more than anything I was completely and utterly angry.

I rapid fired off my emails, left voicemails and was about ready to say, "Screw this! Thomas won't be going back to Birdville." Fortunately though, my bitching paid off and they changed the bus route and only decided to only have elementary and pre-K kids on the bus.

Thomas was hesitant to go to school on Monday but, agreed to go rather than take a nap (twisted mom-driven choices, I know). Thomas was the 3rd child dropped off and as 1-hour post dismissal came...there he was, just as promised. Yahoo! He was still exhausted because he had AVT with Ms. Becky before school, speech during school and regular classwork. So, he was tuckered-out! Mama was happy though to have our little man home at a decent time...it was a difficult start...here is to smoother sailing from this point forward...

Fall = School + Football

2011-08-23T14:58:00.000-07:00

Yes, it is August...not officially fall. However when school starts and the talk of football (and AP poll) begins, it should feel like fall, right? Well, it is over 105 here in Texas but, school has started and college football is right around the corner. This is what our life will consist of until Christmas break and college bowl season.

Sidney, our 4th grader, began school on Monday and was ready to go. She has two awesome teachers this year and is beyond excited every.single.morning when she wakes up. She gives us such joy, frustration, attitude and laughs.

Here is a picture of our precious girl on the first day of 4th grade.

Thomas had his first day at the auditory/oral preschool class provided by Birdville ISD on Monday. He will attend this school on Monday/Wednesday/Friday afternoons and his mainstream preschool on Tuesday/Thursday. Thomas had a great first day but, totally melted down when he didn't get to ride the bus home after school. Fortunately, bussing will start tomorrow afternoon. I have to admit that I want to pick Sidney up from school early so we can follow the bus home...over-protective mama, I know. I'll just send up some prayers when I know that he is in route home. Knowing Thomas it will be the highlight of his entire day. I can hear him now, "Mommy, I got to ride the bus home! It was so very, very cool!!"

A picture of Thomas before we took him to his first day of class.

Now for football...Sean bought Thomas a new football the other morning before getting Thomas' haircut. I'm always reminded when watching videos like this that I need to allow Thomas to be kid...not always having to talk and speak correctly. Here is a quick clip of Thomas playing catch with his daddy. I'm sure that his daddy would love for Thomas to play for the Aggies several years from now. And yes, he will need lots of practice, especially if Texas A&M moves to the SEC.

Leap of Faith

2011-08-19T18:47:00.000-07:00

To put my hands in God's is tough for me...to put my child's fate in His...is beyond tough...it is almost impossible. I'm a control freak, to say the least.

However, I prayed a simple prayer today before our revised IEP meeting...Dear Lord, please let me feel Your presence today during the meeting and guide my path to be Yours...and please keep me from crying.

I didn't cry as I read our hopes for Thomas, although I did have to hold them back. We came to agreement on the goals for Thomas quickly because we ACTUALLY have a great advocate at the school district that listened to our concerns. We now have speech and language goals and will have academic goals in the coming weeks once they have experience with our little man.

I felt Him during the meeting, didn't have to get my boxing gloves on my hands, and felt actually excited at the end of the meeting. He was present with us...now the difficult action of continuing to give up control...more prayers are needed. We will pray that by the end of December that we see a continued improvement in our little man...if not...then we will have prayers for where we should be...Plano, Portland, St. Louis, San Antonio, etc...for now though, we pray to see Him in our lives every, single, day...

Thank you, Lord!

P.S. While I'm thanking God during this post, I must also thank my husband for being with me during the meeting, helping with the IEP background booklet, for sending me an awesome and needed text this morning before the meeting...for being my one here on earth...for being...my Sean.

The right to choose -- Deaf or deaf?

2011-08-16T07:15:00.000-07:00

I was planning to write another post about our time at JTC. However, I was struck last night by the memory of the choice that we made more than 3-years ago, to give Thomas the opportunity to listen and speak.

Now before I go any further, everyone should know that I respect the choices that all families make for the deaf/hearing impaired children. I don't pass judgement because every family is different. This is just a snapshot (well, a few videos) showing an example as to why we chose to have Thomas amplified.

At 6 months of age, Thomas began to lose his hearing in his left ear and his right ear was already severe to profound. Sean and I talked about what was best for our family and for Thomas...making sure that Thomas felt as much a part of our family as our older child, Sidney. Family is a big deal to us because Sean's family is minutes from our house and my extended family is quite large (with my father the eldest of 8 children). Our desire was for Thomas to participate fully in family events like birthday parties, holiday gatherings, and especially family dinners in our own kitchen. Also, we did a ton of research regarding the auditory nerve in pediatric cases. So, we decided to give Thomas access to sound and language, keeping his auditory nerve stimulated. Just as important to us, we vowed that if someday Thomas wanted to remove his CI and HA and become part of the Deaf community that we would support him 100%. We agreed that we would learn ASL right beside him. We felt that giving him access to sound as a child actually gave him the option of being Deaf later in life.

So, here is why I was thinking about the right to choose...my husband celebrated his 37th birthday yesterday. We had cake and ice cream with the kids and Sean's mom last night. We sang him "Happy Birthday" and then Thomas initiated the desire to continue on and have others blow out the candles.

These three short videos show how the "hearing and language" event transpired:

Happy birthday to Daddy!

It's Sidney's turn!

It's Thomas' turn!

Having Thomas is such a blessing...and hearing him sing and speak (and barking orders) is the best birthday gift my husband could have received this year. Happy birthday, babe!

JTC Summary - Parents as Teachers

2011-08-09T11:04:00.000-07:00

We had a amazing experience at the John Tracy Clinic 2011 International Summer Session. I can finally write about our time there without crying (well, I may cry a little)...tears of joy, laughter, loneliness, exhaustion and sadness. The entire trip was a roller coaster of highs and lows, illness, not so small tantrums (one of which was mine) and tons of true friendships grown in a short period of time. It was a once in a lifetime opportunity.

Before I write additional blog posts about what I learned through instruction, observation and labs, I want to share the lessons that I learned from the other families that attended the session. These parents inspired and supported me. While I learned a huge amount of data-driven information from the instructors at JTC, I learned emotionally and practically from those people with whom I lived, laughed, shared and cried.

So, here are some of the lessons that I learned from parents that have changed my life and our future. I've included the names of my "parent instructors" on each of the lessons:

1. Some times you gotta change paths -- Oscar and Lucia.
After years of being an auditory family, they are changing to a TC approach to help their son gain expressive language. Since adding sign to spoken language, their son has become more confident and expressive...kudos to them for making modifications to best help their son grow not just in language but in self-esteem. If the time comes that we need to make this decision for Thomas, I will look to them for inspiration and guidance.

2. Like cyclists, it is easiest to travel in a group -- Marc.
As parents of special needs kiddos, we need people to draft behind during difficult parts of the journey. One person will lead and then when they grow weary, someone else must take the lead...much like the peloton during the Tour de France. We were one big peloton while we were at JTC...I hope that this continues via email, Facebook and long phone calls.

3. Your circle of family and friends are either helpful or hurtful -- Elodie, Oscar & Angela.
I will say it and you may not agree but, being the parent of a special needs child IS much more difficult than raising a "typical" child. It is important for us to surround ourselves with friends and family members that are helpful and not harmful. If those around you don't lift you up the majority of the time, then it is okay to distance yourself from them.

4. All of our children are important -- Tammy.
So, raising a special needs kiddo is much more difficult and takes more energy than raising a "typical" child...now add on the layer of siblings and their "typical" needs. We have to take the time to give all of our children special attention not just our deaf/HoH kiddos. Tammy is doing an awesome job of helping all her kids grow into awesome adults. She makes me want to be a better mom.

5. Strangers are kind and generous -- Colin, Cleo & Gaelle.
Coming all the way from France to join this session with five children was a huge sacrifice. Taking in some of the sibling friends to make crepes was such a wonderful act of kindness. With all the beach fun we had on the weekends and time with friends at the sibling camp and in the TV lounge, this was one of the high points of Sidney's trip. I need to be a kinder stranger...who knows maybe I can create a strong and positive memory for a stranger's child.

6. Real men can and should cry -- all the dads.
On the last day of the session, all the parents went into a single room to say what they got out of the three weeks. Several of the men showed their softer side and shed tears for their children, for the families around them, and for the future that would begin once they returned home. I was so impressed with these gentlemen and they forever left a spot on my heart.

7. We have to fight for what we believe is right for our kids -- Brooke.
We know our kids and "professional opinions" are just that, opinions. Trust your gut, keep asking questions, get second opinions, move if needed to obtain the right services for your child...fight, fight, fight.

8. Keep your sense of humor -- Craig.
A Facebook group was started by JTC for our families to keep in touch. During the last week, Sean joined the kids and me for what was suppose to be a week for all of us. Sean promptly got the flu-like virus that I caught the first week that I was there (this was an incredibly ferocious bug). He was in the throws of it and Thomas came down with a slight fever...so tensions were high and we were feeling the effects of being away from home. Craig then started posting these very funny messages on our Facebook group page that kept my spirits lifted. So, I know now that we gotta keep laughing even when things get really hard.

9. If someone doesn't have a smile, give them yours -- Terri.
This woman has an infectious smile. I didn't realize it early enough to tell her how much it meant to me to see her smile during the low times of the trip. I want to be more like Terri smiling more and giving those smiles to others.

10. It is okay to take time for yourself -- Marc, Florence and Dushyant.
Marc told me that it was okay to reduce the number of books that I read to Thomas every single day...he touched me because he said that it was okay to relax and take some time during the day for me. Marc, I really needed to hear this message. Florence and Dushyant maximized their time in LA and went out on dates while they were there. They are a couple that is truly connected to each other. I admire this and want to bring more of this kind of spirit into my own marriage.

11. A true hug can squeeze your heart -- Elodie & Tammy.
These women know how to give a real, true, honest hug. When I was given the gift of one of their hugs, my heart actually hurt. It hurt because I know that they will physically be thousands of miles away from me...so, I give them a virtual hug right now and hope to hug them again in the not so distant future.

I wanted to write all about our trip in a single blog post but, quickly realized that I'd be writing for days and that anyone that read the blog post would be reading for hours. Next I plan to write about the instructors and teachers that truly changed our lives. I'd like to also recap how Sidney felt about the trip and the fun times that we had while we were in LA. Until then, feel me smiling and giving out true hugs to everyone!

Who the heck swims in December?

2010-12-14T09:05:00.000-08:00

We are the crazy family that swims when it is 40 degrees outside. This all started after I read Lucus' mom's blog post about starting swim lessons. So, I checked around and found an instructor that was experienced in teaching hearing impaired children and adults to swim...and I found Ms. Kathryn at AquaKids.

I have mentioned the amazing people that work with our little man many times on this blog. However, I've never touched on the impact that Ms. Kathryn has had on Thomas. She is so caring, patient and loving. When Thomas started lessons, he didn't know how to swim at all but, still didn't have any fear or respect for the water. So, Kathryn started slowing with him...first getting him comfortable with her, teaching him the 'safety turn' when he jumps in the water, how to kick, etc.

And just last week, she video taped him under water swimming across the pool. While Thomas loves to swim, I also see the benefits of swimming above and beyond learning how to do it. These lessons have helped his core muscle development, stability and breath control.

Here is the video that Ms. Kathryn made of Thomas swimming.

Ms. Kathryn also took several pictures of Thomas under water. My personal favorites are the ones of Thomas with his big sister, Sidney.

My thanks to Ms. Kathryn and all the wonderful people at AquaKids. You guys have helped our little man more than you will ever know.

Fall Fun

2010-11-21T03:13:00.000-08:00

Fall is my favorite time of year. We have had an especially fun time with football, airplanes, Halloween and now about the enjoy a relaxed Thanksgiving week.

Before I begin though, I'm most excited about getting our JTC summer camp application done and submitted. Our SLP/cert AVT, Ms. Becky, is writing a letter of recommendation and we are going back in to get unilateral aided testing on his HA ear next week. So, here is to hoping that we get to spend 3 weeks in LA learning, testing and playing with the Kenny family, other families from around the world, and the wonderful people at the JTC.

Football -- the Texas A&M Aggies, my husband's undergraduate team, is actually playing well this year. It has been a long time since we have been excited to watch a game. We had some good friends over for a game watching day. Thomas had a blast with the "girls" and started working on his football vocabulary. He has known the word 'touchdown' for well over a year now but, we have added other things like 'first down,' 'field goal,' and 'kick off' to our football vocabulary. Here is our little man hanging out during a break in the game with Sidney, Mary Emsley and Katie Grace.

Airplanes -- My husband and his father took the kids to see the air show in late October. Thomas had an amazing day. He got to see the Blue Angels fly and is now totally infatuated with planes and helicopters. It is so much fun to hear something fly over head, even when we are inside the house, and see Thomas point to his ear and identify 'das a airprane' or 'das a hericopter' simply by hearing the difference in the sound. I have got to make an experience book from this outing.

Halloween -- While I'm not a huge Halloween fan, Thomas really got into it this year. We played the game Concentration with Halloween cards that I made as suggested by Ms. Becky. My goodness this kid has a good memory. He learned all of his vocabulary in a week (which is good for him because it used to take him over 3 weeks to learn a new concept). We had a fall festival at preschool and also had a full evening of trick-or-treating. Thomas went as Cat-in-the-Hat and Sidney went as a greek goddess. They both had so much fun and hauled in a lot of candy. It was so great to hear our little man say, "Trick or treat!" and "Thank you!" at every house. His 'thank you' is finally taking better shape...for quite a long time it has come out as 'ah-chew' now we are getting the 't' at the beginning and the hard 'k' at the end.

What a fun fall for our little man. His language continues to grow and sometimes I feel like I'm a walking thesaurus...getting rid of "tired words" and adding new words every day. Our blessings are overwhelming and we have so much to be thankful for this holiday season. Now on to Christmas vocabulary and talk of our Lord.

The Preschool Difference, an Amazing Difference!

2010-10-19T18:26:00.000-07:00

So, tonight was our first mainstream preschool open house night for our little man. I have to admit that I was nervous for Thomas and our family. I wanted the evening to go well; and more than anything for Thomas to be proud of the work that he has done over the past 6 weeks.

Like the Griswalds,we loaded up the family truckster and headed out to The Light of the World, Thomas' mainstream preschool. We were all there, Sean, Sidney, Thomas and me. We have been working of answering "where" questions and searched for pumpkins on the way to school. We kept hearing Thomas from the backseat say, "Pumpkins, where are you?" and "There you are." while pointing to the random pumpkins in the neighborhood. Then we drove by the construction site of the new Kroger Marketplace (can I get a yea! from all the Mommies out there in blog land?). Thomas said "hi" to the all the construction vehicles, by name. When we came upon the school, he was visibly excited to show his Dad and sister his school. He proudly announced, "that's my school!" as we turned into the parking lot.

We all got out of the truckster (not a paneled station wagon) and headed into school. I told Thomas to grab Sidney's hand and show her where his class was. I wish that I had my camera with me as Thomas took Sidney's hand and headed down the hallway. We arrived at his classroom and he immediately walked in and said, "Hi, Ms. Adrienne." He took his picture off the table and put it in the chart by his written name.

Sean then picked him up and they searched for his picture frame hanging from the ceiling. All the parents and children then began to review the start to the day. The kids were called over to the circle-time carpet to begin the session. Thomas heard the teacher say it was time to begin and he ran, not walked to the carpet. He sat down on his bottom and was ready to go (my eyes were already starting to tear up). We began the session with the song welcoming everyone to school, counting everyone present. Thomas didn't really get into the song other than clapping as appropriate. My heart sank a little bit.

Then, we moved on to the weather song and Thomas sang every single word...my heart soared. From there, we moved onto the days of the week, color and shape of the week work. I was again nervous because Thomas was chosen as the child to hold the pointer and help with the songs and identification. A large bit of me was concerned that Thomas would take the pointer and beat every child in class. Amazingly, he took the pointer and pointed to the days of the week as we sang the song. Then, he pointed to the color pink and awaited a response from everyone to identify the color. Ms. Adrienne said, "that's pink." He then said, "hey, that's pink." Then she asked Thomas to point to the color that is the same as a pumpkin. Thomas pointed to the color orange...then he walked over to the pumpkin pointed to it and said, "its the same." We then moved on to the triangle which wasn't that impressive, he simply mimicked the words said.

As we moved through the Alfie, being polite dragon, Thomas kept saying give one to Daddy, give one to Sidney and give one to Mommy (yes, I was the last on the list). Then we moved onto Peek-a-boo bunny. This is the bunny that tells the children the letter of the week. When Ms. Adrienne asked the kids, "what is this animal?" Thomas yelled, "It's a bunny!" Then she showed the children the letter and asked, "what is this letter?" Thomas yelled before any other child, "It's G!"

After this, we closed the session. All the parents exchanged pleasantries and I got to talk for a bit with Thomas' teacher about his FM system. Ms. Adrienne, Thomas' teacher, is a wonderful, amazing, gifted woman...I sooooooooo love her!

As a parent of a special needs child, you want your child to succeed. You want EVERYTHING for them...acceptance, love, friendship, etc. You want the world, you pray for the world.

Well, tonight we got the world. We got more than the world, we got Heaven, too. Sean and I both gave thanks to God for everything, the financial ability for me to stay home, the gift of Thomas' amazing preschool and his more than amazing teachers, the joy of Sidney and her ability to be proud of her brother, the brilliance of being able to sit back one night and sigh...saying that, "Wow, Thomas is doing great. We should be thankful for his preschool, for everything and everyone that got us here." Praise be to God for Becky, Bari, Dr. B, Angie, Tami, Tamarah, Meredith and countless others.

I so appreciate the fact that Thomas is in a mainstream preschool...and I don't want to ever take that for granted. What amazing difference preschool makes!

Yes, We Are Still Alive...

2010-10-14T08:36:00.000-07:00

It has been entirely too long since I've written a post. I can't provide a good excuse for why I've not written in months, other than the fact that life has been absolutely crazy. I always say that someday it will slow down, but realize it won't cease being chaotic until my children are off to college.

Since it has been far too long since I've written, I figured that I'd provide an update on how Thomas is doing. His summer was filled with fun in the hot Texas sun. We blew lots of bubbles, swam a ton and even made a homemade water slide in the back yard. Below is one of the many pictures I took of Thomas enjoying the water.

We also took a trip to Fort Smith, Arkansas to visit my family for a few days. To say that the kids had a great time, would be an understatement. One evening, my father decided to imitate the "Pants on the Ground" singer from American Idol. Below is a picture of Thomas getting in on the action.

We also spent one day at the lake. My kids have turned into such fish. Thomas only got out of the water to eat a little lunch, really it was only a few bites, and ride in the boat. Once he saw his big sister ride on the tube behind the boat, he had to do it, too. So, I got on the tube with him. Luckily, my father was nice and didn't whip us out of the wake as he did with the other kids. I believe that Thomas was the second child to jump off of the dock and the last child out of the water. A big thank you to Uncle Bill and Aunt Lucy for letting us use the dock and boats. The kids will remember this day for the rest of their lives.

Also over the summer, Thomas graduated from his first therapy, OT. When Ms. Angie, his wonderful therapist, told me that he had accomplished all of his goals and that he was ready to be discharged, I about passed out. As a mom of a special needs kiddo, you expect years and years of therapy appointments. I was just shocked to learn that Thomas was ready to manage his sensory integration issues with a home program only. I owe a big thank you to Ms. Angie! She was so great with Thomas, pushing him when he needed to be pushed, working with him to reinforce the weekly language goals that our AVT had for him, and more than anything loving our little man.

Once summer was over, we started back into the school routine. We made some adjustments to Thomas' schedule by pulling him out of the Hearing School of the Southwest. At first, this was a difficult decision for me to make, but my gut was telling me that it wasn't the right place for him at this stage in his development. Then, the Lord stepped in and helped me understand that He had some changes for Thomas and that I should follow the path He laid out before me. I'm so glad that I finally listened to God because Thomas is thriving! He attends a mainstream preschool three mornings a week. Ms. Adrienne is his lead teacher and she has the most wonderful voice quality, a sing-song melody of language with a "drama mama" quality. Thomas loves, loves, loves, loves school. He grabs his backpack and snack bag and runs to the car singing the "Going to School" song the whole time. Here is a picture of Thomas on his very first day of preschool.

The biggest thing so far this year though has been Thomas' 3rd birthday. We had these big plans for a party with friends, one of those big blow up slides, and a Thomas the Tank Engine birthday cake. Ms. Becky, our astonishing cert AVT, worked with us for weeks to help Thomas understand that his birthday was coming. We read books about it, celebrated various stuffed animals/puppets birthdays with pretend cake and ice cream, and sang the "Happy Birthday" song every day to the puppet that was celebrating their birthday. Thomas really and truly understood that his birthday was on Saturday. Then, plans changed because Thomas came down with a horrible stomach flu the day before his birthday. We had to cancel the party and Thomas spent most of his birthday asleep or laying on the couch with Sean. Oh well, we still sang happy birthday, opened presents and he blew out his candles. When you ask him how old he is, he will proudly tell you, "I am three."

He did get to celebrate his birthday at school and received a birthday blessing. Here are a couple pictures of Thomas at his school celebration.

So at three years of age here is where Thomas is in his development:

He weighs 34 pounds (75th percentile).

He is 38" tall (75th percentile).

His favorite food is still hash brown potatoes.

His favorite song to sing is a toss up between the ABCs and Going on a Picnic.

His favorite color is purple (much to the pride of Ms. Becky because of her love for TCU).

His favorite animal is the chetah.

He will happily count to 15 for you.

His favorite game is hide and seek. For his birthday, we bought him this monkey that makes sound when you push a remote control. It has been a wonderful toy to help him learn to better locate sound and he says, "Monkey, where are you?" and "There you are."

His favorite TV show is Thomas the Tank Engine, although Veggie Tales is a close second (he loves the theme song and will proudly sing it for you, if you ask)

He has had a good map for about 6 months now and hears bilaterally within the normal range. Oh, and he loves to whisper.

He is saying approximately 3-3.5 words per sentence.

He uses his "s" for plurals and possessives, and "ing" for action words.

His favorite person is still his daddy, although his sister comes in a close second.

Whew, I promise that I will write more often this fall. My next post will at least be after Halloween, when our little man will turn into the Cat in the Hat.

Results of the PSL-4

2010-05-28T11:23:00.000-07:00

With the closing of the school year, Thomas' teacher at the Hearing School of the Southwest, Ms. Tami, asked for the preschool language test (PSL-4) to be given to him by his cert AVT, Ms. Becky. This test is typically not given to children until they are 3 years of age. However, we decided to go ahead and test him anyway to set objectives for summer school and the start of the full school year in the fall.

To say that I was nervous about the test is an understatement. I knew that Thomas was delayed, but making good progress. I wasn't sure if I was prepared to understand the true gap in receptive and expressive language. So, I did the typical "mom thing" worrying the days leading up to the test and sleeping very little the night before the test.

Because Thomas is an active (aka crazy) 2 1/2 year old who doesn't sit still for long, we had to take the test in two phases looking at both receptive and expressive language. He did his best at what is kind of a boring test of following commands with props and then pointing to pictures. Thank goodness we were able to use the chipper chat during the test to make it more of a game.

So drum roll please...

Thomas is 8 months delayed in his expressive language or another way to look at it is that his expressive language is that of a 23 month old. While I'm not elated that he is so far delayed, I have to be pleased because of the journey he has been on since birth. Off the top of my head, I count that his hearing has fluctuated or deteriorated over 6 times in 2 1/2 years. These are the fluctuations that we have "caught" via booth visits or ABRs. Only God knows how many times his hearing has truly changed since birth.

Also, just prior to implantation about 10 months ago, his expressive language was that of a 10 month old. So since implantation, he has made 13 months of progress in 10 months. Finally, I have to consider that he had a "bad map" for 4 months because of his sensory integration issues -- this is when he started to speak with a closed-mouth because of all the sound distortion he was getting through his CI. It was not until his high pain threshold was identified did we know that his map was way too powerful. Note: His bad map was no fault of his audiologist! She read him perfectly during mapping sessions for blinking, eye twitches, etc.

So, I have to give this kid a lot of credit for making up so much ground since CI implantation and sensory integration identification. Thomas, you make me so proud!

Okay, another drum roll...

His receptive language is only 3 months delayed or he is understanding language as a typically hearing 2 year and 4 month old child. Can I get a very loud "Ya-freakin'-hoo" from the crowd, please? This score tells us that he is understanding much more than he is expressing and that he has a strong receptive language base from which to draw upon as he develops his expressive language. To borrow a line from my friend Tammy...this kid loves to listen!

This also tells us where we need to go from here...

Ms. Becky has me working on the concepts of "one", "all" and "numbers" to expand on his love of counting. Also, we are going to be developing category posters of things like barn yard animals, zoo animals, food, plants, things that live in the ocean, etc. That way he can understand that while he may know and say the words sheep, stick and banana that these things are part of different categories. Finally, Ms. Becky is having us work on plurals emphasizing (s).

Ms. Tami will be developing specific objectives for Thomas to focus on during the summer and fall school programs that correspond with the various themed units.

As I say quite often on my blog, I'm so grateful to have a wonderful group of people on Thomas' hearing and speaking team. I have no doubt that Thomas will continue to close the gap with the help of these talented and loving individuals. I feel so blessed!

Spring Is in the Air

2010-04-22T16:12:00.000-07:00

We have been having so much fun this spring. We have had lots of outings and enjoyed working in the yard. I will post lots of pictures, but will give some commentary. Especially since it has been quite a while since I've given an update on the progress Thomas is making.

We started spring with a trip to the Fort Worth butterfly exhibit. My intention was for the outing to be a wonderful language opportunity. Little did I know that the inside exhibit was going to be so loud due to lots of people and an indoor waterfall.

However, I was able to maximize the time before we walked in to the exhibit by talking with Thomas about all the fish in this tank. He has now learned the word "fish" instead of the learning-to-listen sound "swish." Here is a picture of Thomas looking at the fish tank.

Once we got inside, Thomas was more fascinated by the waterfall than the actual butterflies. Good thing that the Hearing School did a themed unit on bugs, which was also a recent activity with his AVT, the wonderful Ms. Becky. He now says the words butterfly, spider, bug, fly and ant.

Then it was on to Easter. We got the kids all dressed up for an Easter egg hunt in a neighboring town. While Thomas did find the hunt somewhat amusing, he was more interested in playing on the equipment. He now says the words swing, slide, whee, climb, egg, look and peep (for a baby chick) -- oh and don't forget the word "cheese" for smiling when he is getting his picture taken.

We have also been working in the yard a lot this spring. Thomas has helped me pick up sticks from the tree in the backyard, poured and spread new topsoil for the flower bed, planted new spring plants and spread the mulch. Through this fun activity, he now says the words dirt, stick, flower, pour, wa-wa (for the word water) and dig. Also, he is working to clearly say "help me."

We also took a family trip to the zoo and are now season pass holders. We've been working on the conversational language of "that's a _____." The zoo was a wonderful opportunity to use this saying over and over and over "that's a lion" "that's a monkey" "that's a zebra" etc. While he doesn't have the concept down quite yet expressively, I think that he may be getting it. As a matter of fact just a little bit ago, we were looking at family photos. I said, "who is that (pointing to a picture of myself). Thomas said, "dats mama." So, I'm hoping this is simply a glimpse of what is to grow.

With all of the spring activities, we've been working on the names
of colors, too. He loves the color purple (not the movie, haha) and says it whenever I show him the color. He also loves to say blue, yellow or green. Orange and red are harder for him to say given the "r" sound.

Finally, I've been trying to loosen up a little on my "mommy rules" here at the house and not to allow myself to get disappointed when the kids watch TV at Sean's parents' house. Here is a quick video of Thomas acting out his favorite scene from the movie "Ice Age" while having fun at his Kiki and Papa G's house (these are the names selected by Sean's parents as their grandparent names). While I know that TV isn't "good" for our little ones with hearing loss, I have come to learn that sometimes you just gotta let them be kids. And as a mom that didn't know what to expect of my deaf/hoh child, I love to see him acting this out and making the same sounds that he hears.

So for now, Thomas and I are stopping and smelling the flowers; playing outside with Sidney and Sean and enjoying the fact that 'spring is in the air.'

Remember When...

2010-04-08T12:59:00.001-07:00

The director of Thomas' school is collaborating with the company that performs newborn hearing screenings in Texas, hoping that a better approach could improve outcomes. So, she asked to me to write a testimonial regarding our family's experience with the newborn hearing screening. I thought I'd share it on my blog. Maybe a mother or father that is currently going through this same experience will find comfort. Maybe a professional will read this and agree to help make the screening process better. Maybe just maybe we can all help make a difference in the lives of newborns.

This is what I wrote:

Newborn Hearing Screening Testimonial
The Story of Thomas

Our expectations with welcoming Thomas into our family were no different than any other parents’ hopes. We simply wanted an uneventful birth experience and the reassurance that our child was healthy. While we knew that Thomas was going to be born via cesarean, we were calm because we experienced a c-section with our first child. We knew that it wouldn’t be easy, but it was something that we anticipated; and we were prepared to face. What we were not prepared for was a newborn hearing screening because this screening was not offered at the birth of our first child. So, the screening performed on Thomas was something new and unexpected. Moreover, we were not in the least way prepared for the results.

What I remember was a nice woman entering our hospital room and gently taking our child out of my arms and putting him in the bassinet. What looked like electrodes were put onto his head and the woman got behind a piece of testing equipment. Thomas was sleeping peacefully as the test was administered. The woman looked up at us after the first test was complete and said that she wanted to perform it once more. Following the second test, the woman looked up with somewhat of a confused expression. She said that Thomas had passed the test in his left ear, but referred in the right ear. She reassured us that it was not uncommon for c-section babies to refer because of residual fluid in the ear canal. She said that she would come back the next day and test again.

The next day arrived and this time two women walked into our room. Again, they took Thomas and performed the test, finding the same results. We were shocked, devastated and more than anything truly confused. How could our child not pass the test? After all, his AGPAR score was a 9 when he was born. We were handed a pamphlet and told that we should come back to the hospital in a couple of weeks for another round of testing. When we went back, the results didn’t changed. We realized that we had a child with a severe hearing loss in his right ear.

I remember receiving a call a few days later from the director of the program where Thomas was born. She was one of the two women that performed the second round of tests. She tried her best to comfort me, which was no easy task for her. I distinctly remember her saying to me at the end of the call, “You will not go through this alone. I will call you and remain in touch until the issue is resolved, I promise.” This was the last time that I talked to the director. We were alone with little information to help us navigate next steps.

It was not until we entered the Cook Children’s system did anyone explain the tests that were being performed, what the actual results were, and how an ABR and OAE both could help us rule out certain types of hearing loss. While we did have more information at our fingertips, we were still very much alone.

Without a doubt, going through the initial newborn hearing screening process and subsequent screenings was the darkest time that our family has ever faced. I know that neither the hospital nor the persons performing the newborn hearing screening could have helped us prepare for the unexpected. However, I have come to realize that there is so much more that could have been done for us and that so much more should be done for families facing this process today and in the future.

An easy to understand, yet comprehensive explanation of the screening process would be invaluable to families. Without an understanding of the process, parents are helpless to effectively advocate for their newborn child. Just as important to families is the support of other families that have walked down the path before them. Professionals are simply not equipped to help families cope with the pain and uncertainty of hearing loss. It takes the one-on-one personal contact to help families through the process.

More than two years later, I can tell you that Thomas is happy and most definitely healthy. Over the years, he last lost more hearing; and today uses a cochlear implant and a hearing aid. Every day we endure and manage the unexpected challenges that Thomas and our family face. However, we are able to do this because of information, knowledge and a strong group of families that are walking this path with us while firmly holding our hands.

Here is a picture of Thomas when he was first born. Gosh, this seems like so long ago, but the sting of a failed newborn hearing screening is still felt in our family today. We will always remember when...

Not the Typical Textbook CI Case

2010-03-09T02:50:00.000-08:00

Over the last two weeks, Thomas has been in the booth to test his left (non-CI ear) ear three different times. The first time we tested we learned that the left ear had gotten worse, changing from a reverse slope moderately-severe-mild to moderately-severe across all the frequencies. The second time we tested we learned that Thomas had unaided speech recognition at about 45dB, better than what we had the first time. Then, he was too tired to continue. So, we went back the next day to complete the test. This time, the left ear tested at a moderate loss across the frequencies with a slight dip in the mid frequencies. His audiologist explained that this was called a cookie bite audiogram.

I knew that his hearing was fluctuating because of his reaction to songs and talking while in the bathtub, without his technology on. At the beginning of the two weeks, he wasn't responding as usual to songs like "Five Little Ducks" and "Wheels on the Bus." By the end of the two weeks, he was giving me the sounds to these songs as well as pointing to his different body parts when asked to show them. He was even able to differentiate between toes and nose.

So at the end of our last audiology appointment, we changed the setting on his aid & he was also given a "bad hearing day" program that I can use if I see that he isn't responding to the songs in the bathtub. If we move to the "bad day" program for more than two days, I'll contact his audiologist and we will go back to the booth to test him again.

Thomas' audiologist also reviewed with me all of the previous audiogram results to show me the changes that have happened to his left ear over the last two years. His audiogram file was more like a book than a file. It was amazing to see how we have gone from a typical hearing loss slope with more loss in the high frequencies to a reverse slope with more loss in the low frequencies to now a cookie bite with slightly more loss in the mid-frequencies.

As I reviewed these audiograms, I was so thankful that our amazing team of experts went ahead and implanted Thomas' other ear. By not waiting for a severe to profound loss bilaterally, we are now able to manage changes in his left ear without losing language because his CI ear is giving us consistency and stability. This wonderful team of experts didn't wait for Thomas to become the "typical CI textbook case." They are managing him as an individual, which is really a blessing to us.

Even with all the changes in his left ear over the last two weeks, Thomas has actually gained both receptive and expressive language and even said his first three word sentence. He now knows his primary colors and is saying "buu" for blue and "mewow" for yellow. He has added banana, peek-a-boo, me, and other words to his repertoire. And, his teachers at school are reporting more spontaneous language during class. At school, they are working on a transportation unit. See the picture of Thomas below dressed up as an airplane, too cute!

All of this language development makes me again feel so blessed. We are blessed with a wonderful team working with Thomas! And, I'm blessed with a little boy that isn't the typical textbook case.

Sometimes You Just Gotta Plow the Corn

2010-02-25T15:30:00.000-08:00

I have to admit that I've been in a rut lately. Not a huge, you need to be put on medication kind of rut but, a rut nonetheless. I think that it might be due to the extremely cold weather here in Texas this year. We've had several snow days and a couple of days with almost a foot of snow. Wait a minute! We live in Fort Worth, it doesn't snow like this in Fort Worth. Well, below is a picture to prove it.

Maybe I've been in a funk because I sprained my back or maybe because we have all just been a little under-the-weather in our house or maybe it is because I'm turning 39 tomorrow. I don't truly know the root cause or causes. I can just tell you that I've been a little melancholy for the past few weeks.

Every time that I've thought about sitting down to write a blog post, I've simply found an excuse not to do it...the dishes need to be done, the clothes need to be washed, I need to take a shower, I need to make a list of all the sh*t that I need to do, etc. So as I proceed to do all the other things in my life and ignore my blog, I've been thinking of a phrase that a relatively new friend said a couple of weeks ago...'sometimes you just gotta plow the corn.' She is obviously from Nebraska and that kind of phrase is part of her normal language. As for me, I had to think about it a little bit. Heck, I'm from Arkansas and we don't plant corn -- we marry our cousins but, don't plow corn (sorry if I just offended anyone from Arkansas with this comment).

So, I've been thinking about it and the entire concept of planting a field for harvest. It made me think of our little man. While I sometimes struggle with all the appointments, school trips, and therapy here at home, I must realize that I'm preparing his field for harvest. His harvest is listening and speaking. So, I plant my corn...my corn for Thomas.

Thomas has put on his planting boots, is digging and placing his seeds, and is ready for his field to grow (I'm calling these crazy green boots his planting boots).

Now all I have to do is suck it up, put on my overalls and my planting boots, and get to back to work on his corn field because...sometimes you just gotta plow the corn.

Give Him Some Credit

2010-02-02T15:00:00.000-08:00

So, I wonder sometimes if I'm too tough on Thomas. Do I not give him enough credit for the things that he's doing, choosing only to focus on what he isn't doing? Always comparing him to the mythical normal child or to superhero CI child that goes for initial stimulation, only to start talking in multiple word utterances within months. Needless to say, Thomas has taught me two things in the past couple of days.

First, he taught me that he can say more than I give him credit for. As a part of our agreement to participate in a Med-El study of newly activated babies/toddlers, I had to complete a receptive and expressive diary listing all the words, approximations, and learning to listen sounds that Thomas knows and/or says. I won't take you through all the statistics, because it would probably bore anyone that isn't his parent. However I will say that, I was shocked by the results. No, shocked doesn't do it justice...I was you've got to be freakin' kidding me, pick my jaw up off the floor, get me a doctor to restart my heart...kind of shocked. He knows and says WAY more than I was giving him credit for. While he isn't a "normal" child nor is he a CI superhero, he is making some really great progress. We wouldn't be where we are today without his A-FREAKIN'-MAZING cert AVT, Ms. Becky, his wonderful teachers at the Hearing School of the Southwest and his 7-year old sister, Sidney. Can I get a "yahoo" or "maa-woo" (as Thomas says it) for these women -- they are the rock stars in Thomas' life.

The second thing that I learned from Thomas in the past couple of days is that he's not a mama's boy anymore. Gone are the days of tearful good-byes, well on Thomas' part at least. On Thursday of last week, I walked Thomas to his class at the Hearing School. Previously, this activity meant that Thomas would be clutching my leg and whining for me not to leave him. However, this time was different. He walked into the classroom and sat down with the other children. He took the play dough out, waved to me, blew me kisses and said, "bye-bye." So, I started to tear up a little and stopped to talk with his teacher by the door. Thomas heard me talking and got up out of his chair. He walked over to the door, waved to me again and proceeded to shut it on my face. That little stinker!

He showed me again that he's much more comfortable with leaving his mama when we went for our first swimming lesson. Okay, I have got to stop hear and give a BIG THANK YOU to Lucas' mom, Jennifer, for posting about their swimming lessons -- Lucas has LVAS just like Thomas and swimming lessons can help with balance challenges and for Thomas swimming will help to build his core muscles. Jennifer lit a fire under my rear and I signed Thomas up for lessons, too.

So, I take Thomas to lessons, get him changed into his swim suit, and we wait for Ms. Katherine to come and get us. As you can see from the picture below, Thomas really wanted to open the door to the pool and jump right in...alas, we talked a lot about waiting our turn...my talking to him really didn't help -- he wanted in that swimming pool!

When Ms. Katherine came to get Thomas, he waved good-bye to me (no words this time because I'm not brave enough yet to let him swim with his CI on) and off he went with a complete and total stranger. Yes, I cried as I watched him get into the water and not give me a second thought. He swam for 30 minutes, jumping in the water, going under while holding Ms. Katherine's hands, learning to kick, etc. He had a complete blast as you can see from the pictures below.

Ms. Katherine was awesome. She is a certified swim instructor for special needs children and has taught many deaf and HoH kids and adults to swim. She will use the tied noodle under his arms for a portion of each lesson until Thomas understands what to do without visual cues. Thanks to Alyssa for finding this teacher for me!

So, Thomas is definitely teaching me some lessons...I'm not the only teacher in this relationship. He is doing well in life, not the mythical normal child, no. And I wonder, who really wants the normal child anyway? I'm happy with what I've got...a child that is deaf in one ear, HoH in the other, who has sensory integration issues, a child that is completely crazy, a child that is amazing to me and one that I should give more credit.

The Dawn of a New Day

2010-01-26T16:52:00.000-08:00

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:

Car

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!

The Kindness of Strangers

2010-01-18T10:00:00.000-08:00

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 myself...you 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.

The Gift of Subtle Touches

2010-01-12T18:20:00.000-08:00

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!

Christmas Vacation

2010-01-02T14:35:00.000-08:00

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
More
Cracker
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.

The Christmas Guest

2009-12-22T17:54:00.001-08:00

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

2009-12-12T15:31:00.000-08:00

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

2009-12-10T17:34:00.000-08:00

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

2009-12-07T19:35:00.000-08:00

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

2009-12-03T15:55:00.000-08:00

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...

2009-11-24T17:38:00.000-08:00

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!

2009-11-17T16:05:00.000-08:00

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

2009-11-10T15:33:00.000-08:00

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...

2009-10-27T16:22:00.000-07:00

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

2009-10-15T16:44:00.000-07:00

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

2009-10-11T14:21:00.000-07:00

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!

2009-10-09T11:54:00.000-07:00

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!

2009-10-01T17:03:00.000-07:00

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?

2009-09-29T11:29:00.000-07:00

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

2009-08-27T17:04:00.000-07:00

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

2009-07-29T18:56:00.000-07:00

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...

2009-07-21T13:41:00.000-07:00

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

2009-07-02T17:21:00.000-07:00

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!