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.'

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...

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.

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...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

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

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

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.