CI Activation

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...