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.

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 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...

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

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

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.