Miraculous Team...Eternal Coach

So, Monday was activation day. I talked in my first post about how Thomas was blessed with an amazing hearing and speaking team.

Well, his surgeon did a wonderful job on his implant surgery. The recovery time was quick and the bruises were minor. His doctor of audiology helped us select what we believe is the right device for Thomas and our family. She helped to pave the way to CI surgery and consulted closely with our surgeon. Our certified audio verbal therapist (I know know that she has many other acronyms following her name) truly outlined for us the path to listening and speaking success. Her opinion of the regression that we saw in Thomas' development was the main reason for our surgeon believing that it was time for surgery. So, we had our surgeon, our quarter back, the doctor of audiology, our play caller, and our cert AVT, the trainer that prepared us for the game. Overall a miraculous team...a team that got us where we are today. Our thanks are never ending and our appreciation is bountiful.

So, the star of the team, Thomas, prepared for activation with a 13 hour sleep the night before that gave him the stamina for game day. As you can see from the smile on his face, he was ready to take on the day and make it a success!



We head off to the stadium, Cook's Children Northeast Clinic, at about 9:30 for our 10am activation session. Of course, we don't go onto the field (our audiologist's office) without Thomas roughing up a few kids in the waiting area. We truly need to work on his aggressive behavior, but that is another post topic.

We begin the day with making the star player as comfortable as possible...DVD player, toys and snacks. Initial stimulation begins and Thomas reacts with a few amazing moves...watch this:



He breezed through initial stimulation and moved onto the sounds within the room. I brought out his "wheels on the bus" toy and he got to hear all the sounds...he loved playing the "r" sound and then listened to the song over and over again.

Our cert AVT/trainer was at the northeast clinic and came to see the star player. I so wished that we got her on video...but, alas that will need to be for another day. We were able to catch a picture of our audiologist/play caller before the star departed the stadium. BTW, this picture is in the booth because when we finished Thomas thought that it was time to go to the booth...so, we sat in the booth for this first picture with CI on...this still brings tears to my eyes.



So we get set on his first four maps or programs...not sure exactly what to call them. We leave the field and head back to the locker room (aka the house). He is wide awake...so I do about 30 minutes of therapy with him. Now remember that Thomas has very good residual hearing in his left ear and originally benefited well from the hearing aids...so we did his usual music therapy because there was no way that I was going to get him back in a chair. He didn't miss a beat, no pun intended. He did all the movements to "Wheels on the Bus," "Shake Your Sillies Out," and "Brush Your Teeth." He pointed to all the parts of the face and his belly button. He even did the "clap" for the snap of Mr. Crocodile in Five Little Monkeys. All was great...but, the star player needed to head to bed for a little rest before the second half.

Second half, we played a lot and I simply watched his reaction to sound. We then took our new dog for a walk around the block. As we walked, I heard an airplane overhead. I said to Thomas, "I hear an airplane. Do you hear that? (then pointed to my ear)." He looked up into the air, pointed to the sky (he couldn't find the plane because of the clouds) and said, "Ah!" He then pointed to his ear. I just about cried for the ump-tee-nth time that day. We then heard a helicopter and dogs barking. He doesn't know "woof" or "whopa-whopa" yet. So, he just pointed in the direction of the noise and then to his ear and made noises like as if to say, "I hear that!"

So, now you know how the star player was supported by his miraculous team. However, we cannot end talking about this truly great day without talking about the most important element of all...our Coach...Jesus Christ. Without Him, nothing about game day would have been possible. For so long I was frustrated, angry and confused as to why Thomas was given to Sean and me. So many people would say, "God doesn't give you more than you can handle" (which I still despise this saying to this day)...or God has a plan for you and your family. Well, the joy in our hearts on this very special game day could have only come via our Coach...He motivated us to face game day, and kicks our butts to ensure that we are ready to face the numerous games before us..and gratefully, He holds us in His hands when we need an "off day." Glory be to God! Without Him...we would truly not be where we are today. In a truly hearing world...one that contains all the wonderful sounds that the Coach has put in the big game of life...

We have come so far and have so far to go...

As I mentioned in my first post, Thomas had his CI surgery recently -- on June 29th to be exact. As you can see from the picture to the right, he looked like he had a large tumor removed, not a CI implanted! While I would love to tell you that he immediately bounced back following surgery, that would be a total lie. He had about 4 days that were filled with whining, restless nights and questionable eating patterns. All in all though, it was okay...not great, just okay. Would I do it again? Yes, if it would mean that Thomas could hear even better than having one CI alone...no, if we can keep the one relatively good hearing ear that we have right now with his left ear being moderately severe to mild.

So you might ask yourself right now, why in the heck is this crazy woman writing today about a surgery that happened 3 weeks ago. Well, we will be activated this coming Monday. Like most parents, we are fearful that Thomas "won't accept the CI" and won't learn to truly listen and speak. We have seen such an improvement in his babble, expressive language and understanding since we took the hearing aid off the right ear, following surgery. He is picking up new consonant and vowel combinations, he is saying "hi" and "bye" again, giving word approximations for "up" and "down" again, he even on Friday of last week did the clap for Mr. crocodile in "Five Little Monkeys" and it was the first time that we really worked on the sentences at home.

His audiologist and AVT agree that his right aid was probably providing too much distortion for Thomas to truly understand language -- one of the reasons we moved forward with the CI. So now, I'm scared that he will take huge steps back AGAIN in his auditory verbal skills because his brain will have to learn a new signal or way of listening. Now I fear that his "good hearing ear" will distort the sound being received by the CI. What if his hearing improves again in his left ear to moderate to mild? Does that impact how his brain understands the CI??...so, I worry.

I realize that it is our job as parents to worry about our children -- no matter if our children have special needs or not. Worrying is something that I do best (ask my husband :-) Worry keeps me up at night and wakes me early in the morning.

I worry because Thomas works so hard every single day to listen and speak...he has fought so hard to deal with fluctuations in his hearing, he has come so far with the hearing aid technology we've been able to give him...and yet I worry because he still has so far to go...

So, our story is not different...just personal

Over the past year, I have become somewhat obsessed with reading the blogs written by parents of children with hearing challenges (I cannot say hearing loss because children with Thomas' diagnosis have losses and then gains -- hence my selection of the word "challenges"). I have laughed, cried, raised my fists in the air and felt the strong pangs in my heart of mourning, angst and anger, all after reading your posts. Your stories have inspired me, made me feel anger deep within my bones, and brought me to my knees in prayer...thank you for giving me the strength to face the challenges before our family. Your stories have impacted so many, and I thank you for your gift.

The past year has not been so different for our family than the hundreds of families out there in the world that face the challenges of hearing loss...hence the title of this blog.

Our son, Thomas, is 21 months old and was diagnosed with bilateral enlarged vestibular aqueduct syndrome at 5 months of age. He was born with a severe to profound hearing loss in his right ear and normal hearing in his left ear. My husband and I knew in our heart of hearts that we needed to know whether or not Thomas would lose hearing in his left ear. We were challenged by 2 different ENTs before we finally found Thomas' ENT, and ultimately his surgeon for his CI, which Thomas received two weeks ago...Thank God for Dr. B!!!! If you have ever walked into a doctor's office, met the doctor and said to yourself, "okay, this is the doctor that we can trust to take excellent care of our child." That is what Dr. B is to us...

Well rewind to before his CI... Thomas' hearing fluctuated during his first year and a half of life. Following a fall in the driveway at about 17 months, he became profound to no response in the right ear and moderately severe (lower frequencies) to mild (higher frequencies) and we lost almost 6 months of audio verbal therapy development in expressive language. To say that we were devastated does not really describe our feelings...remember when your family first discovered that your child was hearing challenged?...this was our feeling once more...just almost a year after diagnosis. The warm tears of sorrow were again felt on our flushed cheeks.

We also felt the need to press for a cochlear implant -- even though Thomas didn't fit the "text book" need for a CI. I will go off on somewhat of a tangent here because I will tell you right now...if you think that your child would benefit from a CI, then your gut is the best tool that the Lord has given you. We didn't have to fight because Thomas' team of experts believed that a CI was right for him...but, if your is not as lucky as ours was, fight, fight, fight for what you believe is best for your child. You are your child's best advocate...it is your job to do what you think is right!!!

I will sing the praises of Thomas' team of experts, his audio verbal therapist and audiologist, in coming blogs (because they truly deserve their own post)...just know that these two individuals are amazing people...they truly love Thomas and want what is best for him. Thomas would not be where he is today without these two professionals...who also show love for Thomas while also being empathetic and his advocate every single day. To rave about these individuals does not do them justice...they are truly Thomas' angels here on earth.

So I guess, this is where I'll begin our ongoing posts, hopefully not diatribes, of our challenges...we are not different from you...we're just taking this opportunity to make hearing challenges...personal.

Your child is as amazing as ours...love their tantrums, quirks and little sounds they make...they make them who they are...yours...and make your story...somewhat different!