CI Activation

Tuesday, December 14, 2010

Who the heck swims in December?

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.

Sunday, November 21, 2010

Fall Fun

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.

Tuesday, October 19, 2010

The Preschool Difference, an Amazing Difference!

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 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!

Thursday, October 14, 2010

Yes, We Are Still Alive...

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.

Friday, May 28, 2010

Results of the PSL-4

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!

Thursday, April 22, 2010

Spring Is in the Air

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.'

Thursday, April 8, 2010

Remember When...

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...

Tuesday, March 9, 2010

Not the Typical Textbook CI Case

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.

Thursday, February 25, 2010

Sometimes You Just Gotta Plow the Corn

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 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.

Tuesday, February 2, 2010

Give Him Some Credit

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 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.

Tuesday, January 26, 2010

The Dawn of a New Day

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

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

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


Puh-Puh, Boat

Whee-Whee, Slide

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

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

Monday, January 18, 2010

The Kindness of Strangers

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

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

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

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

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

I said, "That's great."

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

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

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

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

Tuesday, January 12, 2010

The Gift of Subtle Touches

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

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

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

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

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

Jennifer M
Greg M
Jennifer G
Liz K

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

Saturday, January 2, 2010

Christmas Vacation

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

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

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

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

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

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

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

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

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

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