Mapping Appointment

Ben had a mapping appointment at Johns Hopkins today.  It had been three months since we had been there!  We began with a booth test and Ben was hearing at 25-30 dbs, but when tested individually his right ear was much lower (like in the 40-50 range) than his left.  During the mapping his audi figured out that the microphone on the right processor wasn't working properly!  I felt awful!  I don't know how long it had been like that.  I know he was hearing the lings (the 6 speech sounds that we check regularly) with his right only as we have tested each ear individually in therapy, so I think he was hearing with the right ear, just not as well as he should have been.  Thank goodness we caught it. He is using his back-up processor until the new one arrives.

I guess I am going to get out the mic-checking piece of equipment that came with the CIs and start using it!  

Even with this issue, Ben has been doing so well!  He says a few words perfectly now, including "Mama, "Dada", "Abby, "Baby" and "Open".  I will try to post a list on the sidebar, as I know those have helped me when other people have posted theirs on blogs.  His receptive language is taking off - he responds with the correct animal sounds for several animals when asked - with no visual cues.  He loves doing puzzles and will spontaneously say the sound of each vehicle and animal while he is busy putting the puzzle pieces in their spaces.  We are going back to Johns Hopkins in a little over a week to have an 8-month post activation evaluation and we will be eager to hear what the SLP says.  

Ben at 18 months

Time has flown these past few months! We celebrated Easter and a First Communion, spent every spring weekend (and many weeknights) at kids' games, attended a ballet recital, a band concert, a tae-kwon-do tournament, a preschool graduation, several Scouting ceremonies, and many, many end-of-school-year parties. Summer arrived and with it came trips to the pool, swim team meets, family outings, and adjustments to new routines. Last week we spent a wonderful week at the beach, returning on the Fourth of July. I have finally had a chance to catch my breath, and am hoping to share more about all of the above soon. For now, I want to share where Ben is in his hearing journey.

After much discussion, Nathan and I decided to apply for Ben to attend the River School in the fall. Started nine years ago by a mother of a deaf child, the River School is a private school that serves mostly hearing children, but has as its mission the inclusion of oral deaf students in every classroom. There are usually two deaf children in each class, with cochlear implants or hearing aids, and there is a full-time speech-language pathologist dedicated to assisting these children in every classroom, essentially providing therapy the entire time. There is an audiology suite staffed with a full-time audiologist, who can troubleshoot and even program cochlear implants. The school has a unique relationship with our CI Center, Johns Hopkins, and can communicate with them if necessary about any concerns, and our CI surgeon sits on the school's Board of Directors. We visited the school shortly after Ben was diagnosed last year, and were amazed at the nurturing, creative environment. This was where I had my first experience talking to children with cochlear implants and I was so impressed and grateful for the chance to see what was possible for Ben. As a parent, the school provided the best of both worlds: a mainstream environment with typical language models, yet the total support Ben will need with speech and auditory development with the SLP in the classroom, the individualized therapy once a week, and the audiologist to provide equipment support and assistance if necessary - and all of the hearing kids are familiar with other kids wearing cochlear implants! Although the tuition (yikes!) and commute (probably 30-45 minutes each way, maybe more) were both causes of concern, we decided that this was too important an opportunity for Ben, and decided to apply. Even with the financial aid we have received, this is going to be a huge sacrifice. I am nervous, too, about sending him to school at such a young age, but he will just be there two mornings a week. It will give me time to run errands and volunteer at the other kids' school - and hey, maybe even exercise! Ella will be joining her older siblings at school full-day, so this fall will really be a turning point in our family.

Ben will continue with AVT therapy once a week, as well as the EI visits with his county teacher. We hope that these next few years will give Ben the foundation he needs to successfully mainstream by kindergarten. We are going to take it year by year and make our decisions for Ben's education based on his progress at each stage. Tonight as I watched Ben dance around the room to music as the older kids watched a movie, I found myself fighting back tears. He has come so far in the past seven months. Both his receptive and expressive language have started to increase dramatically. He has a long way to go, but we feel that he will be in wonderful hands next year, and I can't wait to get to know (and finally meet :-) other CI families through Ben's new school.

Spring Is Here

You find out your baby is deaf and you put all your energy into researching deafness and cochlear implants. You visit CI centers, make contacts with other parents of deaf children and work towards the goal of simultaneous bilateral cochlear implants. You get through the surgery and before you know it activation day arrives!

You think that everything will be easier now that the surgery is behind you and his ears have sound. He starts by resisting them and fighting you about wearing them. You can't believe how often you have to put them back on, it is more frustration than you have ever experienced. Doesn't he know what these things are doing for him? You attend therapy twice a week and make the sounds of the airplane, the car, the train, the cow, the horse and the sheep and think - will these sounds ever translate into words - when will he talk? Then one or another of your children is sick every day for week after never-ending week. You are fielding calls from the school nurse and sitting in the doctor's office day after day. You have to skip therapy because you have many sick children at home and then you realize you also haven't worked with Ben all day because you have been so busy caring for sick children and you are getting no sleep. You are worried that he will never learn to talk and it will be all your fault. You worry because he isn't progressing the same way as other kids and you are sure that you are doing something wrong or not trying hard enough. You feel guilty that you aren't giving your other kids enough attention. You alternate between scouring other blogs for helpful information, and not looking any more for fear of comparing and coming up short. You are sick of calling the insurance company over the same old claims. You feel guilty because you know that you and your son are blessed to have this technology and that it could all be much worse, but yet you resent having to deal with all the equipment and the stress and just once you wish you could communicate with your child like everyone else. You are exhausted and overwhelmed and you wonder if these dark, winter days will ever end.

Then you go to CI Circle and, with tears of happiness streaming down your face, you read about the older CI kids who are receiving academic scholarships to college and studying foreign languages abroad and playing baseball and soccer and testing above their age for language abilities and attending mainstream schools with no support, except for mappings twice a year and you think, "I can do this! I will do this!" and you thank God for the incredible opportunity to hear about these success stories and you pray for the strength to overcome your doubts and your worries.

And then you drive through a torrential rainstorm in horrible traffic to a therapy session with a therapist you haven't seen since before CI surgery and activation. And she evaluates your son for a four-month post-activation report and she asks you different questions than you had thought about before and you find yourself answering yes, my child consistently turns to the source of sounds and yes, my child always turns when I call his name, and yes, my son runs to the phone, the doorbell, the microwave when they ring, and he will bring his shoe to me when I say where is your shoe and actually he will do this for ball and cup as well, and yes, my son says "aah" for airplane, and "ee-ee-ee" for the beep of a car without prompting, and he does seem to search for me when his dad asks him "where is Mommy" and well, actually, now that you mention it he says "uhh" with his arms raised when he wants to be picked up and he says "oh" for "on" with a perfect round mouth when he wants the water turned on in the sink, or for "open" when he wants something opened. And that therapist tells you that your son has 8-10 receptive words and two expressive words even if he doesn't say them perfectly. And you feel as if your heart will break with happiness and gratitude.

Five months ago, he wouldn't have heard a jet airplane's engine if it was right next to him, and today he can do all of these things. And you think, yes, he has made so much progress right here under my nose - I was just too busy worrying to see the forest for the trees. And you pick up that baby and you hug him and kiss him and say, "What a good job! We are doing this!" And then, he says his first consonant sound right there in the therapist's office, "Mmmm."

On your very long drive home, you notice that the sun is out and the buds on the trees are blooming. Your heart is lighter, the clouds have lifted. So, you put down the window to feel the warm breeze on your face and you know in your heart that everything will be OK. Spring is here.

One Year Ago Today

We found out one year ago today that our baby Ben was deaf. I have felt some old feelings rising to the surface as this day approached, but today I feel happy and blessed that Ben has come so far in one year. It was one year ago that, in the midst of an ice storm, Nathan and I drove Ben to his ABR and I sat with him asleep in my arms for 2 1/2 hours without moving a muscle while the audiologist taped monitors to his head and tested his hearing. We knew that there was something wrong since Ben had failed the universal newborn screening in the hospital 6 weeks earlier, and then the one-month follow-up OAE and automated ABR, but still we figured it was probably just a mild hearing loss. After all, it seemed that he heard loud noises and we had no hearing loss in our family on either side, right? We were completely unprepared when the audiologist returned to the room and informed us that Ben had showed no response during the entire testing time - his hearing loss was profound.

Our world became confusing and felt lopsided. We told our four older children about Ben's hearing loss in an upbeat manner, while inside we felt despair. The darkest part was when I thought about how I would never be able to fully communicate with my son. We spent the next two days researching deafness in children, and came across information on cochlear implants. Unlike the negative impression I had from some media sources, I came to understand that cochlear implants could provide deaf children access to sound and that this device gave them the chance to learn to listen and speak. It was as if a light was lit in the middle of a dark tunnel. Children implanted early were given the best chance of success. We made contact with other parents through the Internet and began calling CI Centers. We visited oral deaf schools and talked with children with cochlear implants. Our every step was to try to get Ben implanted as early as possible and bilaterally. Ben was implanted bilaterally at the age of nine months and activated at ten months. It has now been three months since Ben's activation and it has been a challenging, yet amazing journey. We have tried many wearing options to keep the CIs on our stubborn boy's head. We have continued with AVT therapy twice a week, while trying to expose Ben to language around the clock.

Ben now repeats several different vowel sounds and associates the different sounds with a variety of listening toys. He localizes the source of the sound and always turns to it. It has been amazing to watch this transformation. He is beginning to understand that sound has meaning and he is vocalizing appropriate responses. At thirteen months, he walks so well and plays and delights in his family and his routine. Nathan and I could never have predicted the incredible place we would be at just one year later. There is much work ahead of us, and sometimes we feel overwhelmed, but we also feel closer as a family because of all that has happened. Ben is a wonderful boy, full of love and laughter. I wouldn't change a thing about him, even his deafness, because that would change him and he is perfect and has taught us so much this past year and changed us all for the better. If asked to describe him, his hearing loss wouldn't even be one of the first things I would mention. He is so much more - so playful and sweet and loving. We are blessed to have him in our family. This day and really this whole month has reminded me of the events of one year ago, the suspicions and doubts, and the worry and the frustrations and the fear. But now all we feel is hope and a sense of accomplishment and peace. The decisions are behind us. Ben has his CIs and we have wonderful therapists, teachers, audiologists, and a trusted team in place. We just need to move forward with faith and perseverance and much, much love. We are grateful to all the family and friends, other CI parents and professionals who have helped us along on Ben's journey to hearing so far, and to all those who will help us during this next phase of our journey. We anxiously look forward to what this next year holds for Ben and for us.

A Poem from Ben

As I mentioned in the previous post, my birthday and those of my two youngest children fall within a few days of each other, in the first few days of the new year. It was a busy time here in December and January! Ben is still nursing and wakes up during the night - my other kids were never this hard to get to sleep through the night. I have been overwhelmed at times with being tired and keeping up with all of Ben's appointments and the other kids' activities. My mom just recently gave me a belated birthday present - a beautiful small statue of a mother and her son embracing - it's called Child's Touch. I love it, but the best part was the card that came with it. Apparently, the gift was from Ben - and included in the card was a poem that my mom wrote for me - "from Ben." It was one of the most touching and thoughtful gifts I've ever received and I wanted to share it. Thank you, Mom!

Dear Mommy,

This birthday present comes to you late,

But to get the right gift, I just had to wait.

Together we shared a most wonderful year

Filled with wonder and joy and you always near.

Always together, almost never apart

Nursing and sleeping close to your heart.

Days and nights you had little rest,

(But Mom, sleeping with you is really the best)!

In silence I grew, no sounds did I hear

But in your loving arms, I never felt fear.

Instead every day I learned something new

From you and Dad, and all the kids, too.

You and Dad, Abby, Sam, Grace and Ella

What a great family for this little fella!

While you struggled with work that never got done

You filled my days with laughter and fun.

And after months of research to learn what was new

You decided on therapy .... and implants, too.

So thank you mom for all you have done

And for helping me hear before I was one.

Your loving son,

Ben

We're still here!

Does that ticker say over 2 months since Ben's activation? I can't believe I haven't posted in so long. It is has been so crazy around here. Ben's first activation appointment was right before Thanksgiving. It was followed by 6 additional mapping appointments over the next few weeks since they programmed Ben's ears separately (it takes at least 1 1/2 hours each way to get to Hopkins). Add in Christmas, the many kids' Christmas concerts and parties, and all of my shopping which I had saved for December. Good friends of ours stayed with us over the New Year's weekend. Then two of the kids' birthdays (Ben's first birthday was January 10 and Ella's 5th birthday was January 12), each requiring a party to commemorate such important milestones (my own birthday fell during that same week, but was much less exciting). Then we had the Presidential Inauguration in our DC area, and our final mapping appointment of our initial phase (we were able to map both ears together finally - yeah!) When our audiologist said we didn't have to come back for three months I almost fell off my chair. Ben has also continued with twice weekly therapy appointments (one privately at an AVT center and the other with our county EI teacher). I have been running around driving the four older kids to all of their activities and volunteering at their school, and of course, we have been doing the musical chairs routine of cough, fever, stomach bugs, and flu that is the winter season with small children.

Ben is doing well. We had a very hard time keeping the CIs on his ears (he would fight us but it also fell off once we had it on), so he has been wearing the whole BTE pinned to his shoulders. This has allowed him access to sound and given his incisions a chance to fully heal and us a break from the battle. I felt disappointed at first that we couldn't get him to wear it the way most kids seemed to or the way he was "supposed" to, and I am determined to introduce the babyworn behind the ear again very soon because that is the way we want him to wear it eventually, but this is working for now (well he still pulls them off a lot, but not constantly). Every time I would go to sit down to post, I would get called away until eventually it seemed that there was just too much to say that I couldn't even start, or that I should wait to post until we had video or at least a good photo. I had hoped to do a beautiful birthday video montage like others I'd seen, and post photos from Christmas, etc. When Ben was first diagnosed, it was the parent blogs I turned to that gave me information and hope. I feel strongly that recording Ben's journey is not only important to us, but to other parents who are going down the CI path, and I want to do a much better job of it. I know this will be meaningful to Ben years from now, as well.

Ben's progress has been a little slower than I had expected and at first I felt conflicted and upset about it. His therapists think he is doing great and so I am trusting them and going forward rather than comparing him to anyone else. Ben can distinguish between long and short sounds and can repeat the up, up, up and ahhh (airplane) and oooo (train) sounds. He turns to the source of the sounds. We are working on him selecting the correct toy that makes the sound from a choice of two. No consonants yet. In other news, Ben began walking a few days before his first birthday and he now has 16 teeth! He shows an understanding of where things go, like cups and plates in the cupboard and collecting puzzle pieces or similar toys and putting them together (it's not understanding verbal directions yet but just doing it on his own). We are working on our names and trying to make them each sound a little different. We are enjoying every little advancement. The whole family went to Grace's class yesterday as her student of the week special guests and we talked about Ben's implants and I gave each child a copy of Cochlear's coloring book. Ben was a big hit! To think that it was almost a year ago that we found out Ben was deaf and now the surgery and activation are behind us and he can hear sound!

Activation Day!

Here is video from Ben's first activation. Watch how he turns when he hears his name! After that, his responses were more subtle. But he did respond to a drum and noisy toys. We returned the following day for a second mapping appointment, and will go back after Thanksgiving for a third. Then we will start the mapping appointments for the right ear a few days later. We have been changing his maps each day and he is tolerating that well. At home, he seems to be taking everything in and not showing too many obvious responses, but we were told that this is common. The hardest challenge has been keeping the ear piece and magnet on his head! We have been using the pilot caps and we bought the Topstick toupee tape which has been helping. But he really resists when we put the ear piece on. I know we will get better at putting it on and that he will get used to wearing it, but it has been frustrating. But, when I look at this video I am reminded why we are doing all this and it makes it all worth it. The CI is nothing short of a miracle device.