IFSP Meeting

We had our IFSP meeting yesterday.

Audrena showed off a little for her team. She walked between me and Daddy, holding our fingers, many times. The physical therapist was happy to see that! We decided that Audrena should have physical therapy once a week for 30 minutes. Her 6 month goal is to play while standing and to walk 10 steps independently. I know the point of the goal is to be realistic, but it seemed a tad silly to me. I feel like she'll reach them much sooner than 6 months. But I do know that her balance will cause challenges. In the meantime, we can adjust the schedule as needed, so if we feel like she needs more sessions we can work that in. I had not met our physical therapist at the initial evaluation, so I didn't know what to expect. I'm happy to report that I think he'll be good to work with.

The early childhood education teacher recommended evaluating Audrena once a month using the HELP method and set some goals for her as well. We feel confident with those things as well.

The speech therapist from the hospital was able to be there as well. We felt like speech therapy once a week until she has her first implant activated was a good approach to take. Then from there we can increase to twice a week. I'm thinking more like 3 times a week would be good, but we'll cross that bridge after we speak with the professionals at Boys Town next week. Our team was open to us consulting with Boys Town and switching things up as necessary. We were glad to hear that, although we don't have a certified Auditory Verbal therapist in our area, our speech therapist is educated in it. That was one thing I was not sure about since I admittedly don't know a whole lot about speech therapists' educational training.

We did tell the team that, although it may be a bit out of the norm, we want AV therapy and possibly down the road when Audrena's language is caught up to her peers we would work in sign language. I'm not sure that really fits any therapy model we've seen yet. I think that usually a family would pick just one method, which is essentially what we're doing with AV therapy, but I'm not sure that other families work in sign language at a completely different point in time. The fact is, we don't know if we will even need sign language. With bilateral implants, the chances of both implants failing at the same time are probably pretty slim, and there are waterproof implants now, so she can wear them while swimming. We do know absolutely, however, that our main focus over the next few years will be developing Audrena's ability to speak normally and to really learn to listen with her implants.

Yesterday was also the first time we met our SD School for the Deaf outreach person. I had talked to her on the phone a few weeks ago, and I had a good impression then. She stayed after the meeting for quite awhile, just talking with us about the implants and different things. She doesn't get many clients who use Boys Town. A lot of them go to the Mayo Clinic (which was one of our options, too) or just use one of the two surgeons in Sioux Falls. We shared our experiences with her, and we can truly say that we do not have one bad thing to say about Boys Town up to this point. Every single person there has been nothing short of amazing. When she finally did leave our house, we had a great feeling about her. We think she will be really good to work with!

So overall, we feel like we're on the right track. While we're at Boys Town, we hope to be able to go over things with them a bit to determine if there is anything we need to change. Next week is truly the beginning of an intensive journey for us. We began this journey several months ago, but it's about to get more crazy with many, many therapy appointments, pre-op appointments, the surgeries themselves, activations, mapping appointments, etc. The next 3-4 years will be hard, but this is one time shot. We cannot afford to screw up. These coming years will be a sacrifice in some ways for us, but they will affect Audrena's entire life. Yes, this is the beginning of building the foundation for her whole life. We are dedicated to giving her the best foundation that we possibly can.

Deaf Baseball Player Aims for Major Leagues

http://dailynightly.msnbc.msn.com/_news/2012/05/22/11813169-deaf-baseball-player-aims-for-major-leagues

A friend pointed this news piece out to me. You really need to watch the video and read the article, I think. First of all, I think this kid is awesome. A star student who has set his sights on the major leagues, Austin has ambition for sure!

Now here is my critique. The video piece does a great job of showing off the implant. What it doesn't do is explain anything about it. It doesn't even call it what it is--a cochlear implant. And the written article? Don't get me started. The written article refers to it as an "external hearing device" and then a "hearing aid." While both descriptions are probably technically accurate, they're not exactly the correct terms. A hearing aid is different than a cochlear implant. Why not call it what it is, a cochlear implant? I was a mass communication major for awhile in college. I know that broadcast media has time limits, and printed media has length limits of its own. However, I think they could have still squeezed in a brief sentence describing what a cochlear implant is, and they certainly could have called it by its name. How would it have taken away from the focus of the article to just educate the public a tiny bit about the cochlear implant that helps Austin hear?

A musical improvement is coming for CI users!

I am nowhere near musically inclined. Actually, I couldn't carry a tune if my life depended on it, but I do enjoy music and was sad when I first read that cochlear implant users don't have the ability to hear music like we do. Since then I've read stories from so many CI users that DO enjoy music, both those who lost their hearing at some point and those who were born deaf. But I read something today that made me so happy! There is a new program currently in testing stages that will change the musical world for CI users. Granted, it takes awhile for things to be approved by the FDA, especially for pediatric use. Someone correct me if I'm wrong, but I don't think that HiRes 120 is even approved yet for pediatrics. Someday, though, there will be potential for Audrena to hear music the way we hear it. Randy and I are constantly amazed at the technology that is packed into such a little device!

Check out this link for the story. http://cochlearimplanthelp.com/2012/05/16/a-musical-odyssey/

For now we will just continue to pray that everything goes well at our pre-op appointments and during the surgeries. I cannot wait for our baby girl to hear Daddy tell her, "I love you."

One Step Closer

Although the cochlear implant team did not get a chance to review Audrena's case last Wednesday, we received the dates for our battery of pre-op appointments and the go-ahead to order hearing aids. Our appointments will happen over the course of two half-days at the end of the month. We have been given the approval to have Dr. M. at USD handle our hearing aid trials, so we can also get moving on that, too. VERY tentatively, we could possibly be looking at mid-June for Audrena's first surgery. We are both excited and scared. Let me tell you, we will be so happy to be past this point in our lives. We can handle the tons and tons of therapy sessions. It's the surgery that makes us nervous, even though many people have told us it's not really all that major. It's major to us because she is our baby girl! But we both agree that we need to give Audrena the chance to hear.

Mothers Lie.

A friend re-posted this on Facebook in light of Mother's Day coming up this weekend. It brought tears to my eyes. A child with a disability was certainly not what I imagined when I found out I was pregnant with Audrena. God has handed me and Randy a challenge, but we know that He gave her to us for a reason. We will make sure she is loved and that she has what she needs to reach the stars. To my friends out there who are also mothers of a child with a disability, you are amazing mothers, and from you I have learned a little about who I need to be for my baby girl.

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what
sex the baby is. They just want to have ten fingers and ten toes.
Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button
nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being
flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps
right on schedule (according to the baby development chart on page 57,
column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by
the billions.
She wants a kid that can smack the ball out of the park and do toe points
that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a
spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see
the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even
years later, took him in for a routine visit, or scheduled him for a checkup
and crashed head first into a brick wall as you bore the brunt of
devastating news.

It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?

There’s no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be
unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it.
Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a
hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well-intentioned
souls explaining how God is at work when you’ve occasionally questioned if
God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you,
painting you as hero and saint, when you know you’re ordinary.

You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood
line yelling,
“Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in
perspective, so let me do it for you. From where I sit, you’re way ahead of
the pack.
You’ve developed the strength of the draft horse while holding onto the
delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No
Place To Go

Feeling Overwhelmed Today

I just talked with Dr. L. awhile ago. He was calling me back to answer some questions we had. Since he was at a conference and then trying to get caught up, it took awhile for him to get back to us.

First we discussed Audrena's risk factors for meningitis and the risk of facial nerve paralysis with the surgery. I'm relieved to hear that it is as we thought--those are not things that should keep us from going forward with the implants. The risk is still relatively small, especially because we do vaccinate on schedule. He has done at least 800 cochlear implant surgeries, and he has never had an issue with the facial nerve. Yes, these things are still risks, but even though they're low he still has to inform us.

We discussed Audrena's vestibular issues. He explained to me that a normal person has 3 semicircular canals, and she is missing 2 of them. The only one that formed is the superior semicircular canal. As a result, she'll be unsteady, and she'll have to use visual cues to be able to walk. He had explained that before, but now that I know exactly what the problem is, I'm a little more worried. I haven't had a whole lot of luck with finding information on how the absence of the other 2 canals will affect her. What I have found is that those canals control things like vertigo and posture, so I'm worried that her little world has been spinning and we don't know it. It's amazing what we take for granted. As part of the cochlear implant team's evaluations, she will undergo vestibular testing. I'm scared of what we'll find out, but I'm also looking forward to knowing more so that we know how to help her. I've said it before. Knowledge is power. In cases like this, when I don't know anything about what I'm facing, I feel weak and scared. I would just like to curl up in a ball and cry. So instead, I gather as much information as I can. I educate myself. If I know what I'm facing, if I have a game plan, then I deal much better with the situation. The problem right now is that I don't know, and I can't seem to find the information I need. So if anyone out there has experience with what happens when a person just doesn't have all 3 semicircular canals, please share it with me! Educate me.

As part of the discussion, I asked whether we would just treat any ear infections the same, using the Ciprodex drops. He explained that during the surgery, he would take Audrena's tubes out and patch the holes. That's when I essentially went, "Wait. I have big concerns with that." Audrena was very wobbly before her tube surgery. She had so much fluid built up that she was late to sit or crawl. She would steady herself with one hand while she sat. She army crawled to get around. After the tubes were put in, she stopped using her hands to steady herself, she crawled, and she began to cruise around the furniture. It was a HUGE improvement. Given that she has these vestibular abnormalities, I feel like she needs the tubes to keep the fluid at bay. He said what I already knew, that the tubes are an access point for bacteria. But he did say that he would consult with other surgeons around the country via e-mail to see what they would recommend in this situation.

He did reiterate that Audrena has other issues that will make surgery more challenging for him. She has small mastoids, which is where the implants are attached and where they drill to gain access for the electrode array. The auditory nerve canal opening is larger than normal, causing the potential for a spinal fluid leak which would have to be packed with tissue, and the auditory nerve canal narrows to a narrower-than-normal size. He did say that these are things he can deal with, but it does make things a challenge.

Now to the hearing aid trials. The cochlear implant team will meet today to review Audrena's case. They will discuss when to start the hearing aid trials and how long we will need them. That may determine whether we will be able to get them from USD, or whether we will need to get them from Boys Town.

I am just feeling a bit overwhelmed today. Some days are good. Some days I wonder how we will ever tackle all of this and get past it. Today is just an overwhelming day. But in the midst of this, I'm extremely thankful that we have a doctor (and a nurse) who is willing to take extra time to talk with us. He had patients waiting for him, yet he made sure my questions were answered. I'm SO grateful for that, and I do remember that when we are the waiting patients.

God Continues to Work Magic

Let me start by explaining that our church of choice is roughly 40 miles from home. We attend when we can, although it's not nearly often enough. It had been a couple of months, and Randy insisted that we needed to go to tonight's Saturday service. So I rounded up Reyana and Kelton from the dirt pile in the back yard, properly soaked our muddy children in the bath, and had them ready for church when Randy got home from work.

When it came time in the service, Pastor made her rounds, jotting down prayer requests as she went. We asked the congregation to pray for Audrena as we navigate our way through the next few months of doctor appointments and surgeries. She explained to the congregation that Audrena has profound hearing loss and will be getting cochlear implants. Someone piped up that Boys Town really is a wonderful place.

After the service, a family approached us to introduce themselves. The lady's nephew is 3 months old, profoundly deaf as well, and will be a candidate for cochlear implants when he is old enough. We had a wonderful conversation, and I wrote down our e-mail address and the blog address to share with her sister and brother-in-law. It's amazing how God just continues to put people in our path who are in the same situation.

And for the record, I still maintain that He is working through Facebook as well. We had yet another Facebook friend put us in contact with a family whose daughter received a cochlear implant in March. It's so great to hear from other families!

Auditory-Verbal Therapy Explained

Here is a link that explains in detail what Auditory-Verbal Therapy is all about. This is the approach that we would like to take for Audrena once she has her implants activated. I'm not sure at this point that we have any "certified" AV therapists in our area, but I'm confident that if not, the people we will be working with can easily model her sessions with these principles in mind. We'll do whatever it takes to maximize Audrena's potential with her implants.

http://www.listeningforlife.com/AVTprogram.html

Cochlear Implant HELP

I checked out one of my favorite blogs today and found a new post with a link to the website http://cochlearimplanthelp.com/. It's full of great information!

Parents Magazine Article About Cochlear Implants

Here is a good, informative 3 page article from Parents Magazine about cochlear implants. (You might have to click to continue past a subscription offer to get from page to page.) It explains how they work and touches on the decision that parents must make whether to raise their deaf child with or without cochlear implants.

http://www.parents.com/toddlers-preschoolers/health/ears/toddler-gets-cochlear-implants/

The Audiogram and the Speech Banana

This is an audiogram chart showing the speech banana. I obtained this chart from firstyears.org.

From the New Paltz Central School District, here is an explanation of the speech banana.

The sounds we use to produce speech in conversation have frequencies and decibels. The most typical frequency and decibel for each speech sound has been graphed on an audiogram to provide information about what sounds can be heard at specific degrees of hearing loss. A child that can hear the sounds of speech will have a much easier time imitating, understanding and learning spoken language.

When all the sounds necessary for speech were initially graphed and a line was drawn around them, the shape looked like a banana. The term "speech banana" was coined. This area is the target hearing area for children with hearing loss. If they are able to hear  sounds within the speech banana when they are aided with hearing aids [or cochlear implants], there is a better chance they will understand that sound and be able to reproduce it in their speech.