Erin Toes and her Cochlear Implant Journey

It's Not Fair.

2011-08-17T13:59:00.015-04:00

I've been such a slacker CI Mom. I've been keeping up with other CI Mom Blogs, but when it comes to updating Erin's blog I've really dropped the ball! I want to write more. I will write more. It seems the beginning of the school year always inspires me...

So, this summer Erin attended a Summer Camp program and had a blast. As a working mom, I worry that she will miss out on having a "typical" summer of running, playing, socializing... or: Being A Kid. But, I have to say, I never had a summer like she has this year! Two field trips a week, art classes, Taekwondo, library time... Not to mention pony lessons on the weekends and endless hours of running back and forth between houses with her friends. Phew! It's been great!

A couple days ago, I picked her up, excited to hear about her field trip to a local Go Cart/Batting Cage/Bumper Boat facility. I thought it would be one of her favorite trips. Instead I heard the dreaded... Mom, it's not fair. :(   When I asked her to elaborate, she hid her face in her hands and refused. Those who know Erin personally know that enthusiasm is one of her biggest traits. To see her drawn into herself had me concerned. What was it? She wasn't tall enough for the go karts? Someone beat her at putt-putt? So-and-so got to wear flip flops and she didn't? (oh, the horror)

I pushed and finally discovered that her camp counselors had (quite correctly) chosen not to allow her on the bumper boats because they had water guns attached. Really, more like water bazookas on steroids. It was fairly likely she'd get hit.

We hadn't prepared for the scenario - I hadn't discussed it with the teachers, hadn't made alternative plans, sent a bathing cap, etc. And since Erin has become completely averse to going without her processors in any situation other than bed and bath, she was stuck standing with a teacher, watching her friends have a blast on the boats.

My sweet girl burst into sobs once she told me. Doubled over, wracked with grief. It's not fair I have to have processors! she wailed. What is there to say?  I bit my lower lip (keep it together, mom), reached back and rubbed her knee. Another mile or two down the road, she was done. Moved on. Can I play with Shelly when we get home? Puh-leeeassse! My sweet girl. Tougher than I ever was.

It wasn't the first time she was on the sidelines because of her equipment and its restrictions. I'm confident in saying it won't be the last. We won't plan for every scenario in every situation - no matter how hard we try. Unexpected problems will arise.

Mom, it's not fair.

No, Love... it isn't fair.   But I couldn't be prouder of how you face it.

Kindergarten!

2010-08-24T22:02:00.002-04:00

Awhile back, (quite awhile, if you base it on how often I've been updating the blog lately...) I talked about our dilemma regarding whether Erin would be ready to start Kindergarten on time. With her summer birthday, she only barely makes the cut off for our district.

Fast forward to now... After exhaustive discussions and evaluations throughout the spring with her pre-school teachers, her TOD, the District Intervention Specialists, etc., we determined she is ready for Kindergarten. Not only is our girl mainstreamed - she is ahead enough of the game to start Kindergarten with children who may be as much as 11 months older than her.

To say we are proud would be an understatement. Saying we are grateful would be descriptive. But to say we're suprised? Notsomuch.

Once the decision was made, we had other factors to consider. The daycare/preschool she has attended throughout her infancy and preschool years has a fantastic full day Kindergarten option with a very low teacher/student ratio. The district has sent services to this school for the past two years. But we knew we'd head into a fight to continue these services out-of-district into her elementary school years. We needed to be prepared to give up services if she were to stay in place.

After a lot of soul searching and a tour of the district building that left us pleasantly surprised, we ultimately decided not to head into that fight. I had many legal arguments prepared. But in the end, we did not want to set up an adversarial relationship with the district. And we were happy with what we saw in-district.

The final results of the IEP:

Personal Bi-Lateral FM System (newly purchased solely for her)
One Hour Per Week pull out with a TOD
One Hour Per Week in class with Intervention Specialist
Quarterly Assessment from the school SLP to monitor her articulation
Lesson plans sent home for pre-teaching

So, here we goooooo!

Today was her Orientation.

It was a great experience. She is going to love her teacher. And her room (it is super organized). We visited the library and she was so excited to realize she would get to visit once a week all on her own (well, with the class... but still...). As we left, we ran into the District Audiologist coming into the building to show Erin's FM equipment to the teacher. She invited us to tag along and we spent an hour as she gave a brief overview to her teacher, the SLP and the Intervention Specialist.

Erin was pretty overwhelmed by all the adult attention and the concept of having the teacher's voice piped directly into her processor was disconcerting to her. I'll jump on in another day or two and give details of the impromptu Personal FM System session because I would hate for the details to be lost in this very long post. There are many things I would have done differently that I'd like to share. In the end, a pack of stickers and free reign to decorate her equipment at-will calmed her apprehension. I'm hopeful that will carry into the school year.

So, Thursday is her first bus ride and first regular day of K. We don't plan to make a big production about her "situation" to the driver. Instead we'll hand him/her a note explaining that she is deaf and cannot hear when her equipment is not functioning. Or is snatched from her head. (Eek! Busses! Who plans for that chaos???)

Signing off for now... and feeling thankful for piles of curly hair that hides electronic equipment from the view of 3rd graders.

Music-ick

2009-10-02T08:00:00.005-04:00

I started my college career intending to train to become a Music Therapist. I eventually changed career paths, but did end up squeaking a Music Minor onto my degree. Naturally, I've maintained my love of music and continue to find my own form of therapy in my appreciation.

As with most parents who find out their child is deaf, one of my first heartbreaks was realizing that she would never hear music or learn to appreciate music. When I started researching Cochlear Implants and reading the blogs of adult CI users, I discovered this fear was unfounded. As I've written in previous posts, Toes is very fond of music (or, "Music-ick" as she prefers to call it) and has her favorites. Lately, a favorite has been Life is a Highway from the Cars movie (Rascal Flatts) and *anything* from The Little Mermaid.

Since we are in a phase where Erin has caught up to her peers in communication, yet hasn't started to tackle the issues of elementary school, I've decided I'd like to spend some of our free time expounding on Erin's fondness for music by encouraging her to sing, play her little keyboard, etc. My understanding from CI Adults I've spoken to is that often listening to a symphony can sound like 100s of voice all talking at once - it can be a bit much to even tolerate much less appreciate. So, I'll introduce other kid-friendly instruments into the equation over time. My hope is that as she learns to understand how each instruments sounds, she will begin to be able to appreciate more complex music and in time enjoy classical music in a live setting.

I'm obviously not a Music Therapist and am really just flying by the seat of my pants. But as long as she's enjoying the process, I'll keep it going.

Here is some video we captured earlier this week... it's short, so have a listen!

Transitions and Decisions

2009-08-14T22:22:00.004-04:00

I cannot believe I haven't updated since March! There have been so many times I thought "This would make a great blog post..." since then. Yet, here I am... August. And no blog posts.

A quick update:

Erin turned 4 last month. Like so may CI Kiddos, she is doing amazingly well. She had an independent speech eval in March and tested at age level. We noted some issues on her receptive language, which was a surprise, since that was her strength in the beginning. Conversely, she tested at a 5 year old level in vocabulary. It was a bit of a lesson for us. We realized we had been spending far too much time focusing on expressive language and needed to pay more attention to her overall needs. We focused on the areas of concern and she quickly corrected the issues.

Transitions......

Erin starts her new school year in two weeks. She will be staying at the daycare center/school she has been at since she was 4 months old. The Itinerant Teacher of the Deaf that she worked with last year will be back and she is really looking forward to it, as am I.

Decisions...

Very early on, Dad to Toes and I made the decision to mainstream Erin. In fact, she was already in a mainstream daycare setting when she was diagnosed. Although we researched other options, we never saw a compelling reason to move her from where she was. And since she was doing so well, we planned (and plan) to continue on that path. We thought the decision to mainstream would be the biggest decision we would make outside of our communication methodology decision.

Well, the timing of her birthday has given us pause. Erin's birthday is in mid July... the cutoff for Kindergarten in our district is August 1. So, if we start Erin in Kindergarten at 5, she will be one of (if not *the*) youngest person in her class.

If not for her hearing impairment, I would likely be doing a "Phew!" move and would be thrilled that she made the cutoff. The concept of redshirting is a controversial one and I have done enough research to agree that it is not necessarily the best way to go. For "normal" kids.

But, as normal as Erin is, she will go into each academic year with larger challenges than her peers. As miraculous as CIs are, the reality is that she doesn't hear as clearly as her peers. The successful speech evals don't address the hearing deficit she will experience in the classrom. Mixing that with being on the young end of the class hits her with a double whammy. So, Dad to Toes and I are watching closely and evaluating how to proceed.

I am biased toward holding her back a year. I also have a mid July birthday. I never struggled academically, but I was definitely behind my peers socially. I can't help but think Erin will experience that same thing - but two-fold. The thought of her feeling socially out of place and adding in the complication of not being able to keep up with lunchroom chatter is heartbreaking.

Dad to Toes is biased toward starting her on time. He has a fall birthday. And he always felt awkwardly older than his peers from a social standpoint. He doesn't think we should sell her short and hold her back when we don't know yet how she will do.

We're both right.

We consulted Erin's TOD on the issue this past spring. She feels that it is far too early to make a decision. She said she often sees a huge leap in her students during the Pre-K year. So, we made the decision to send her into the preschool room with the kids who are scheduled to start Kindergarten in 2010. We realized that should we find she isn't keeping up with her peers and intervention doesn't correct the issue, it will be easier to hold her back a year than to convince the school to advance her a year.

So, here we are. Heading into Erin's final preschool year. We're currently in a transition period. Erin has caught up to her peers. She is a normal 4 year old. Yet, the challenges of the classroom and school setting looms. We're enjoying this period and feel so blessed to have the chance to deal with all the typical trials of caring for a 4 year old child.

Well, maybe "blessed" is too strong of a word... Because, Man! So far 4 has been a lot tougher than 3. There is nothing quite like dealing with bed-time pop outs with a child who can't hear you say "GET BACK TO BED!" ;-)

Postnote: To those who have emailed asking what our "ASL or Not to ASL" decision was... We are continuing with Erin's ASL education. She enjoys learning new signs as much as she enjoys learning new spoken words. We aren't making learning ASL the primary focus right now, but we are slowly incorporating it into our lives.

To ASL or not to ASL

2009-03-26T22:05:00.013-04:00

(or, Another Reason Everyone Should Have an Apple iPhone)

Dad to Toes and I always planned to introduce Erin to a broader American Sign Language vocabulary than the typical half dozen "Baby Signs" that are so popular with parents these days. But, since she developed spoken language so quickly, we kept putting off learning ASL and broadening Erin's ASL vocabulary. It wasn't really intentional. Time just flew by and the urgency waned.

ASL is often a controversial subject. Strict AVT proponents don't encourage even lip reading in fear that it might detract from the child's ability to develop spoken language. On the opposite side, strict ASL Proponents argue that ASL is a deaf child's "native language" and should be the primary (if not only) form of communication utilized - regardless of what form of communication the child's family uses.

We have always taken a middle-of-the road view on the issue. We have never been the types to buy into any one path - we never felt there was a right or wrong way to teach Erin the skills she needs to succeed in life. So, we are always re-evaluating what Erin's needs are.

We have chosen to encourage lip reading - and as a result, we are able to have basic conversations with her even when she is not in sound. But there are times that Erin misses words and becomes frustrated that she cannot understand what we are saying. When it's an hour past bedtime and she's called us back in for the third time and her processors are in the drying unit... the last thing we want to do is pull out a processor so she can catch the missing word when we are trying to tell her she needs to go to sleep so we'll be ready to visit the *zoo* tomorrow. So, we've realized we need to re-start our ASL introduction.

What I've found really fascinating is that recently Erin has really been showing an interest in learning more signs beyond the baby signs. I don't know that she even understands that this is another language or that she could communicate completely with just her hands, but it's made us really thrilled about learning along with her.

I've been planning to check Signing Time videos out of the library to get things rolling. They are basic and child friendly and I have heard nothing but positive things about them. But I've been concerned that I may have a hard time convincing Erin to replace Blue's Clues with new videos during her TV time.

Then tonight I was checking out new Apps on iTunes and stumbled on the Best App Ever - Signing Time for the iPhone! It demonstrates the same signs that are available on Volumes 1 and 2 of the Signing Time Videos, complete with videos by Rachel Coleman. And all for $4.99. How awesome is that??

Erin loves playing preschool games on my phone when we're in the car or anywhere else she needs a distraction. She is going to flip out when she's checking my phone out the next time and finds a "game" that shows her new signs.

I am so excited that we found a great first step into ASL. Obviously, 48 signs is only a start. I just hope "zoo" is one of them.

You know that saying...

2009-03-24T12:45:00.003-04:00

... "Never repeat anything you wouldn't want your child to say back to you"?

Well, Erin recently started turning the tables on us during some of our "therapy sessions" (Read: reading stories before bedtime).

Priddy Books are still a huge favorite. Once she was able to verbally label every picture with ease, we moved on to asking her more broad questions when we worked on receptive language skills. We'd ask: "Can you show me a boy?" or "Can you show me which animal is biggest?" At each phase, we would switch gears to working on expressive language... For example "Can you tell me how this boy is feeling?" or "Where would you use this toy?"

Recently, we've moved to identifying groups "Show me some things you would wear on your feet." or "Show me which animals you would see at the zoo."

The other night, while reading one of her favorite Priddy books, Erin announced she was going to read to me instead.

I was open to a night off, so I gave her the book. I assumed she would point to a picture and ask me to label it, an activity we did daily her first year post-activation. But, instead, she very proudly took the book onto her lap and said:

OK, Mommy. Show me something that you'd wear to the beach. Good job! OK, now show me something you use to make dinner. Good job! You're so smart! OK, show me something...

It was so much fun! What I found most amazing was that she was truly coming up with her own questions. I don't think she repeated a single question I had ever posed to her - they were all original.

I'm starting to wonder if maybe I can sit her at the table with a book and tell her to do her own listening games now.

(kidding)

Sequential Bilateral Cochlear Implant Surgery

2009-02-25T22:53:00.008-05:00

I know, I know... I am really behind in my posts. I have so much to tell you all about how Erin is doing. I want to share how her first 2/3 of the year of her first IEP is going. Where she falls within relation to her peers. What our recent struggles have been.

(Look for my upcoming post about what happens when you put a defiant three year old who happens to have $14,000 (est) worth of electronics within her reach into a time out alone). And I also need to get some new video up. (I'm really wishing I had video of the timeout... or maybe not. Cochlear might not have been so understanding had they actually seen the circumstances.)

But, first... I really want to share an amazing video of a Sequential Bilateral Surgery that was performed a couple days ago by Erin's surgeon, Dr. Clifford Megerian. Her amazing audiologist, Dr. Gail Murray, was also there and offered excellent information beyond what the surgery demonstrates.

Before you click the link, I want to offer a warning. Particularly to "new" parents.

Much of this surgery is filmed through a microscope. So it looks much more terrifying than it really is. I intentionally avoided all surgery pics and video before Erin's surgery, and I am glad I did.

So, if you are new to the process...please, please don't click this link. I am only able to watch it comfortably because Erin is more than a year post-surgery. As parents, one of the most important things at this stage of the game is to not overthink the details. Leave that to your child's surgeon.

On that note...

Sequential Bilateral Cochlear Implant Surgery - 2/24/2009

I've mentioned before how amazed I am by Erin's small incision. After seeing the surgery, I am even more amazed.

Thanks, Dr. Megerian! As if we weren't grateful before. Now we have the video proof of how much is involved.

FM Soundfield and an Update

2008-12-17T20:46:00.006-05:00

I thought it might be beneficial to write a bit about the FM Soundfield System that the school "installed" at Erin's preschool.

I always envisioned soundfields to be huge, cumbersome systems that require wiring and speakers mounted around the room. But I discovered it really doesn't need to be that involved.

The system that the school recommended is very basic. It is a single speaker, about the size of a loaf of bread. It has a microphone that hangs from a lanyard around the teacher's neck.

It is a 705iR Lightspeed Portable Infrared Audio System.

The teacher uses it any time there are group activities. Generally, the only true group activities at Erin's preschool are Morning Meeting (Circle Time) and Afternoon Meeting. Each "Meeting" is about 20 minutes long. So, she is really only using the system about 40 minutes per day on a regular basis. But it is a very critical 40 minutes. Most of the day's instruction is built into the organized meeting.

The group sings a welcome song, then the teacher discusses the day of the week, the month and the season. "Jobs" are distributed by pulling name sticks from a jar. The teacher holds up a name stick, the children read the name and the child whose name appears on the stick spells his or her name outloud, then chooses a "job."

The teacher then goes over what activities are available for free play and what craft the children will be doing that day. The group then sings a song or has another group activity. After this is done, the teacher removes the microphone, turns off the FM System and the children run off to whatever activity they are most interested in at that moment.

And that's it!

It doesn't seem like much, but it is building a foundation. A foundation of how she will learn to interact with teachers in a school setting.

It has been a hit. The teacher mentioned that she doesn't have to strain her voice as much to be heard... and she has also noticed improved attention from all the kids during "meetings." We couldn't be more thrilled to have the system in place.

It is hard to definitively measure at this point how much the system is helping her. But, I feel very confident that it is having a positive impact. Not only for Erin, but for all the kids. Erin will always have to work a little harder than others to hear what her teachers are saying. Having the FM system helps to bridge that gap. And if in the meantime it helps her schoolmates focus, then all the better.

*******************************************************************************

You're probably wondering why I finally jumped on and posted an update after so long. Well...

Today was one of those days when I realized just how far we have come. I had two defining moments and wanted to share.

The first was this morning at school drop off. After we went to the alphabet posted on the wall and spelled "Erin", "Mom" and "Dad", and gave big hugs, little hugs, big kisses and little kisses, I settled her into her second breakfast of the day with her friend, "Janie".

It was one of those days where she was almost shooing me out the door. So, I was able to hang out at the window in the hallway and watch her with her friend.

While the two of them enjoyed their breakfast, Erin pointed to a large dollhouse that is new to the room and said "Janie, look at that big house! I'm going to play with that big house after I'm all done. Do you want to play with that big house?" "Janie" said "Yeah, sure!"

It seems like such a small thing. But, I was so moved to watch her interacting with a friend and planning out a play strategy for the morning. She was having a conversation with a friend over fruit loops and milk. It was one of those moments where I realized just how truly mainstreamed she is now.

All parents love to watch their kids enjoy time with a friend. But, for me today the moment was especially sweet. I left the building with tears welling in my eyes. Another mother was coming in the door and gave me a knowing smile, laden with sympathy. But, what she didn't realize was that my tears were tears of joy. It made me chuckle to think of the days when Toes was an infant when I walked out of the building with my heart breaking to leave her behind. Think of all the emotions that parking lot has seen!

Then, tonight at dinner, Erin grabbed a Highlights magazine and started looking it over. (Yeah, I know... not the greatest habit to encourage, but when Dad to Toes is out of town, there's a whole lotta multitasking going on.)

Anyway... she pointed to the picture of the magazine's editor at the front of the mag and said "She is the author."

Wait... did I hear that right?

"Erin, she is the what?"

"She is the author. She put all the words in the magazine. See? All these words. She's the author."

She picked this up from a single conversation we had *months ago* about Margaret Wise Brown's photo at the back of Goodnight Moon.

I go days and sometimes weeks now without even thinking about Erin's disability. And then I have a day where I remember. And these small moments - these ordinary miracles - pop up and remind me.

She makes me so proud.

Broken

2008-10-31T08:15:00.001-04:00

Once again, I have no words.

Ben's cancer has spread aggressively since July, when his intensive treatment ended.

Please keep this family in your thoughts and prayers. No parent or child should ever have to endure what they have been through.

IEP - Round Two

2008-10-10T19:47:00.004-04:00

We had Erin's follow up IEP today.

It was an entirely different experience this time.

The Teacher of the Deaf/HH drafted three very aggressive goals, with strong benchmarks attached. She was able to get a much better take on where Erin is in her development by spending an hour a week with her over the last month.

She recommended she increase her visits to 60 minutes, once per week. Her first IEP only allowed for one visit per month, after the initial month of weekly visits.

She recommended quartlerly evaluations by the school's SLP, mainly to monitor her articulation.

She recommended we try out an FM Soundfield in the classroom.

So, we've agreed to go ahead and try out the Soundfield System. We are still a little skeptical of how beneficial it will be in the preschool setting, but it obviously doesn't hurt to give it a shot. The school seems to be even more unsure about it's usefulness, but I trust the TOD will help convince them of the value.

We discussed the possibility of increasing her SLP visits if we see her progress slow down. At this point, we feel she will get more out of the classroom and social setting than she would with an SLP for an hour a week. Also, the time her TOD spends with her will largely be focused on therapy activities, so it would be somewhat overkill.

We are very pleased with the services that have been offered. There isn't anything missing from our wish list. (Well, except for maybe offering to pay part of her preschool costs, but I'm not going to be unreasonable. ;)

I am also so excited about her TOD. She is just great! One thing I have noticed is that she gets a full 60 minutes of solid interaction with Erin during her visits. When we go to private therapy, Erin tends to cling to me for much of the session and I don't feel she gets as much from it. She is a much more confident little girl when she is in the school setting and I am not around to hover.

It is kind of funny, actually. When we're home, she won't go into another room unless I come along. But at school drop off in the morning, I have to remind her not to run off into other rooms without me. Sometimes I thinks she feels she owns the place. Haha!

So we feel very fortunate that the TOD is able to visit her in that setting. We know she is benefitting from it so much.

Bilateral Again and an IEP Update

2008-09-29T21:11:00.005-04:00

I've been very remiss in not updating!

It turned out my concerns about Erin adjusting to her left processor again were unnecessary. The next morning, she accepted her processor without complaint. I still opted to keep her on the lowest setting for that first day, but she did fine. She even popped the coil back on when it fell off.

Her TOD was scheduled for a class visit that day, so I left her a note letting her know what had been going on with the processor. Erin apparently ran right over to her when she arrived and told her all about her left side being broken but explained that it was fixed now.

She then went willingly into an empty classroom with her and worked for 45 minutes without complaint. So proud of her!

We are working to get our IEP meeting set up, since Erin's current IEP runs out on October 20. It looks like it will probably be scheduled for October 10. I'm eager to hear what the the TOD has to say about what she has seen in Erin's classroom. I am very comfortable with Erin's language development to this point. But I am concerned about her ability to follow along in the classroom.

Stay tuned!

Teaching Right from Left and yet another reason to go bilateral

2008-09-23T21:12:00.004-04:00

How *do* you teach a child the difference between Right and Left?

There's this way:

Step 1: Draw an "L" on the child's left hand and an "R" on his right. If you're at home, do the same with his bare feet. Make sure the letters are legible and facing the right way.

Step 2: Stand next to your child and demonstrate this while she follows along: Put both hands in front of you with palms facing away. Point both thumbs toward each other. The hand that makes the "L" is left.

Step 3: Some kids find it easier to learn just one--right or left. If he has already shown a preference for, say, writing with the right hand, he can learn "right" this way. By default he will learn that the hand he doesn't write with is left.

Step 4: Play the hokey-pokey to reinforce the concepts as they are being learned. However, have everyone playing stand in a line rather than a circle so that they do not get confused trying to mirror the people across the room.

Step 5: Throughout the day, ask your child to state which hand she is using, which direction the car is turning, which side of the plate the fork is on and so on. Ask these questions with a sense of fun, not in a testing manner.

Or, if your child is bilaterally implanted, you can verbally label each processor "right" or "left" and make sure to use the words consistently when speaking of individual processors. CI Kids are so in tune with their equipment, it is a very effective way to help them understand this somewhat difficult concept.

We called Erin's processors "This side" and "Other side" for the longest time. But recently we started calling them "right processor" and "left processor".

For example, in the morning, we put on one side and say "Good morning! I just put on your right processor. Now I will put on your left processor."

She picked up on it almost immediately and now she has her right and left side pretty much down pat. Bonus!

One processor arrived today.

2008-09-23T21:03:00.003-04:00

For some bizarre reason, the replacement for Erin's second fried processor arrived today. But the first one (which is a different color) won't be here until tomorrow. Apparently they canceled the first order and placed a single order for both, thus delaying the whole process by several days. Lovely.

Erin went 6 full days without sound on her left side. That is a long time for a 3 year old.

Long enough to decide she doesn't need to have two processors.

We had screams, we had tears, we had "No left processor, Mommy! It's still broken!" I actually got to the point where I was concerned that maybe there was something wrong with the map.

So, I put it aside, waited a bit, then used the time honored tradition of bribery to get her to allow me to put the processor on. (Amazing what a Princess Gummy Vitamin means to a little girl.)

I set the program on P1, her softest setting, and put the coil on. She was not happy, but she tolerated it the rest of the evening.

I almost feel like we're starting from scratch! I am not looking forward to the morning routine. I think we'll leave her on P1 for at least another day to let her ease back into it.

Unilateral Sucks

2008-09-21T22:04:00.004-04:00

Early last week, Erin's left processor died.

No big deal. I grabbed her other left processor, put that one on, and called Cochlear.

After assuring them I already confirmed it was the processor that was malfunctioning, they said a replacement processor would be shipped after getting the map from Erin's audi. We were told the replacement would be shipped within 48 hours.

Normally, replacement parts are shipped right way. But processors are a different story. The processor portion of the CI is what holds the program (map) that deciphers the sound and sends it in to Erin's auditory nerve. (How's *that* for a layman's explanation, haha!) And programs not only vary from person to person, but from ear to ear.

When Erin was first implanted, a fried processor would mean a trip to the audi after receiving the replacement processor so the audi could download the map to the new processor. But now audis are able to upload the map to Cochlear via the internet, so the processors can be sent out already programmed. This is especially helpful in areas far away from the nearest CI Center. But I love it because as a working mom, it is one less errand to run. ;)

Anyway, I was expecting the replacement processor Thursday or Friday.

Then Thursday morning Erin's backup processor wouldn't turn on. I went through the swap out process and confirmed we had another fried processor! Two in one week!

I called Cochlear as soon as they opened and they agreed to send out the replacement. They confirmed they had received the map from Erin's audi and said they were hopeful they could get the second replacement sent out with the first.

Well, I think this may have held things up. Because on Friday we still did not receive a Fed Ex from Cochlear. *sigh*

So, Erin has now been without sound on her left side since Thursday morning. 4 full days. And I have to say, I have noticed a huge difference. Beyond the normal 3-year old tendency to not listen, I am finding Erin not following direction unless I really make sure I am speaking to her on her right side. It has been a trying 4 days and she very much misses hearing on that side. She repeatedly says "Left side broken!" and pats her left implant site.

I have also noticed she is extra cautious and unsure of herself in new situations. We went to a Spoken English/ASL story time event at our local library on Saturday AM and I couldn't get her to leave my lap. At the zoo today, unless I kneeled to her level and spoke directly to her, she didn't even know I was speaking to her. I honestly can't get over just what a different little girl she is with one CI versus two. It makes me so glad to know that bilateral CIs are becoming the norm instead of the exception. The value is immeasurable.

I really, really hope to see a Fed Ex box on the porch when we get home tomorrow evening.

FM Systems

2008-09-07T20:59:00.004-04:00

I've been getting quite a few questions and comments regarding FM Systems and I thought I would elaborate a bit on our logic for wanting to avoid one if possible right now - as well as give some very basic information on FM systems.

I try not to offer too much technical information on my blog because, let's face it - I'm not an ENT, Audiologist or SLP. I know most of my readers are parents of CI Users or CI users themselves and I am quite confident the readers have excellent professional resources to get the information needed to make decisions for their children.

That being said, here is some basic information on FM systems and our thoughts on the matter. :)

FM Systems

The American Speech and Language association (ASHA) has a great page that talks about FM systems. The information is pretty basic, but gives a good overview, with a base of understanding to be more equipped to talk to their professionals.

We looked at three different options when first investigating FM systems: Personal FM System, Tabletop System, and Soundfields.

First: Personal FM Systems are just that: an FM system that communicates directly to the user through the hearing device (be it a CI or a Hearing Aid.) The teacher wears a microphone and his/her voice is fed directly to the user, thus helping to bypass acoustical problems or background classroom noise.

Generally, Personal Systems can be set up in one of two ways: Either the user gets only the FM feed, or a combination of both the feed and the background sound. Most users choose to go with the open option - where the background sound is still coming through.

Pros of Personal System: It is fairly discrete. It does not require very much in the way of additional equipment, thus hopefully reducing the additional stigma associated with being "different."

Cons of the Personal System: They are Personal. Meaning, only the user can tell if the system is working. This is especially of concern with toddlers and preschoolers because they cannot necessarily communicate problems. And there can be problems: radio interference, truck interference, static, etc.

Second: Table Top FM System: Like the Personal FM system, the teacher wears a microphone. But instead of the signal being fed directly to the HA or CI, the signal is fed to a small speaker placed on the child's desk.

Pros of the Tabletop System: The teacher can easily troubleshoot and confirm the sound quality from the unit.

Cons of The Tabletop System: I have yet to see a preschool where the children sit at a desk for any longer than 10 seconds (other than lunch, snack and craft time). Another con IMO is the "That Kid" stigma. We don't want Erin carting a little speaker around with her all day, further differentiating herself from the other kids. I know this may seem shallow and shortsighted, but we really hoped for a better option.

Third: FM Soundfield: "Soundfield" is a very fancy term for "speakers set around the room." The teacher wears a microphone and the sound is sent to speakers strategically placed around the room to amplify the teacher's voice for the entire class.

Pros of the Soundfield System: The system is very easy to troubleshoot and the teacher can quickly determine if there is feedback or interference. But, probably the very best Pro is that the system improves the listening environment for the entire class. There are so many studies that show classroom noise is an issue for hearing children as well as those that are hard of hearing. This is a great article on the subject, but doing a quick Google will give you quite a few more.

I have several friends who are teachers who first used Soundfields when having a HOH child in their classrooms, but they all found they quickly opted to keep the system on even with the HOH child was not in class. They are that helpful to the learning environment.

Cons of the Soundfield System: They are not as direct as a Personal FM System or Table Top Model. It is still critical that the HOH child is near a speaker to gain the most benefit from the system.

So... that's FM Systems 101 from my viewpoint. As with everything involving Toes, I did a ton of research, talked to her Audiologist and her SLP.

We basically came down to ranking our FM System wants to this order:

Soundfield
Personal
Tabletop

Then, after further discussions with Erin's professional support groups, it was ultimately decided that an FM system at this point in her education would probably do more harm than good. We would have to rely on a teacher (a busy teacher with many children in her charge) to know when and when not to use the microphone. If the teacher became distracted and forgot to turn off her mic after working with Toes, she would be subjected to very confusing inputs. She would end up spending time trying to sort this strange input rather than staying on task with what she was doing.

As much as I adore Erin's teachers, I have to be realistic about the ability to focus on her FM system needs while taking care of so many children. This was a decision we made when we opted to keep her in a private setting versus sending her to the local school system's preschool environment, where we would have some ability to hold the teachers' feet to the fire.

Of course, Erin's educational needs are in flux and always will be. If we find that she is missing significant portions of the teachers' instruction, we will need to re-evaluate and take different action if necessary. We're still awfully early in this process.

And, like Cloggy said... "The future's so bright... we've got to wear shades."

Reality Check

2008-09-05T21:00:00.002-04:00

Erin's Teacher of the Deaf visited her classroom for the first time on Wednesday. We were so eager to hear what she thought of how Erin is doing.

She has set up a notebook to keep in Erin's cubby for us to communicate back and forth. I couldn't wait to read what she wrote on the first day. We were very sure that she would rave about how amazingly well Erin is doing. After all, she is pretty much completely caught up on language. She is able to answer age appropriate questions. She loves to tell us goofy stories. She loves to sing nursery rhymes. She can imitate any word we throw at her - even when she doesn't understand it's meaning.

Well.... We were a little shocked to find that the TOD spotted some areas of concern.

During circle time, Erin bobbed her head and smiled during a familiar song, but she didn't sing along. Check -

When circle time broke up and it was time for lunch, Erin quickly followed familiar commands from the teacher. She got her lunch, found her seat, etc. Check +

When the teacher gave commands that were not familiar to Erin, she looked confused for a moment, and then watched her peers for guidance before following the direction. Big Check -

I know it seems minor, but it really stunned us. Even the teacher and the school director (who has followed her since she was an infant) had never picked up on the fact that Erin wasn't following the teachers' directions - she was following her peers. She's our smart cookie and totally fooled us.

So, we've had a reality check. This isn't going to be as easy as we thought it would!

I am very confident that Erin isn't hearing the teacher clearly. I don't feel it is a comprehension issue. She is able to follow new directions at home with no problem at all. The problem is being in the classroom setting. We've done so much in the AVT area, but now she needs to learn to listen in an entirely new way. Unless we plan to hire a private tutor to get her through the K - 12 years (not gonna happen), she needs to adapt to a classroom setting.

The TOD will make three more visits and then we'll meet to talk about what we need to do to help Erin in this area. I am not 100% sold on an FM system just yet. It is a play based curriculum and I have a concern that Erin's teacher will be in one activity area working with a group of children and Erin will be in another activity area, picking up that conversation on the FM system. Not a good situation.

In her current school, the FM system may not be useful until the Pre-K level.

Another reason we have been wanting to hold off is that we've heard that Cochlear is getting ready to launch new FM Hardware for the Freedom system. I would much rather she get a new system for her specific CI than get an older model she might have to use through high school. It is tough to get upgrades once a system is in place.

But, we're keeping an open mind on the matter and will see what the TOD recommends.

We're thrilled to have such a competent set of eyes on Erin's progress in school. She is growing up so fast! She loves her new classroom and is so proud of herself. I can't wait to see what else this year brings.

Preschool Rocks!!!

2008-08-28T21:19:00.008-04:00

After dinner tonight, Toes, Dad to Toes and I were playing with playdough. I wanted the red playdough. But, Erin said it was hers.

I said "No, it's my playdough."

She took it from me, pointed to the label and said "No, Mommy. It's mine. See? It says Erin. E - R - I - N."

Dad to Toes and I just looked at each other in amazement!

She spelled her name!!!

We've spent time showing her the letter "E" and telling her "E is for Erin." But we never dreamed she'd be able to grasp the concept enough to get all the letters of her name, so we've never even made the attempt.

So, this is yet another instance of us underestimating her capabilities.

When will she stop pointing out just how far behind we are?

Her classrooms have always had assigned seats, with each child's name printed on the back of the chair. Before this room, the name would be printed on a color or shape. Erin was the Gray Moon for the longest time. Now her chair just says "Erin."

And in one week, she learned to recognize all four letters, and put them into the correct sequence to recognize her own name.

Granted, her name was nowhere on that playdough container. But, we'll save that step for Pre-K. ;)

Then there's the fact that we gave her a basic 4-letter name. Dad to Toes said tonight "Wow, I'm really glad we didn't name her Natasha or something like that." haha

Is there a stronger word than "proud?" Because the word just doesn't seem to do justice for how we feel whenever Toes takes another one of these amazing leaps.

********************************************************************************

Erin's TOD made contact with us today. She'll start visiting Erin's school next week and will be starting a communication notebook so we can communicate back and forth. I am so excited! I really love this teacher. I have heard wonderful things from Erin's SLP about her. Apparently her SLP has another patient that has the same TOD for his education and she couldn't say enough about how impressed she is with the level of communication this TOD makes happen between the parents, the school and the SLP. I am very eager to hear her assessment of how Erin is doing in her classroom and what suggestions she has for her preschool education.

This is exactly what we've been looking for. Someone to observe and assess how things are going. Because, it appears to us things are going just fine. We just want to make sure our assessment is correct, and to make sure her progress continues at the level appropriate to ensure that Erin succeeds to the very highest level of her abilities.

Preschool Update

2008-08-23T23:09:00.006-04:00

I finally received a response from the school system today regarding Erin's Teacher of the Deaf.

They aren't sure why, but the TOD I was expecting to work with Erin is no longer showing up on the staff listing on the website. But, she is, in fact, still on staff and will be contacting Erin's preschool next week to get her visits scheduled.

We were beyond thrilled to hear the news! We really like this TOD and hope to develop a good relationship with her to carry us through Erin's educational years.

*********************************************************************

I met Erin's current preschool teachers for the first time on Friday, while dropping her off after therapy. One of the many downsides to working fulltime, I generally drop Erin off in a centralized room where the other "early kids" get dropped off. Then, when the individual teachers arrive at around 8:30, they gather their children up and take them to their rooms for the day. Since Dad generally handles pick ups, I had not yet met her teachers.

I have to say, after meeting them, I am even more sad to know that they will be leaving soon. They were perfect!

The post-therapy drop off is always tough, because it is a change in routine. And Erin thrives on her routine. Having to drop her off in her new room out of her normal routine was very difficult. But the teachers did a great job helping her ease into it without coddling her too much.

After a temper tantrum and some clinginess, a teacher finally talked Erin into going to the exit door so she could wave to me as I pulled out of the parking lot. The teacher didn't pick her up or try to physically comfort her. But, she was gentle and loving and (most of all) encouraging as she coaxed her to the door. She was showing her how to be a big girl.

I pulled out of my parking spot, stopped and waved. I rolled down the window and yelled "Bye Monkey Monk! Have a great day!."

Erin waved, turned on her heel and walked back into the room as if she owned the place. Her teacher looked relieved and walked behind her back into the classroom. I imagine Erin went to her seat to happily join in on the morning snack and the teachers were able to put their focus back on the kids who are in school for the first time. The ones who are still learning the ropes.

I hope Erin finished her snack, then invited one of her new friends over to play before Morning Meeting (ie, Circle Time).

*********************************************************************

Dad to Toes and I promised Erin we would take her to the store to buy a new backpack and lunch box this weekend to celebrate her big move to Preschool.

So after nap we went to Target (which Toes inexplicably calls "Yow!").

We found the area with the smaller backpacks and let Erin pick out what she wanted. She was pretty sold on a Princess backpack (much to Mom's chagrin) but after some discussion on the benefits of a more Toes-sized backpack, she ultimately chose a Dora backpack with wheels.

We went to the lunchbox section and again, after much discussion and trying to fit various large Princess lunch boxes in her smaller Dora backpack, she choose a Dora lunch box.

Once we got home, we cut the tags off the new supplies. We pulled a nap blanket out of a drawer and added it to the backpack so it was ready for Monday morning.

While I was helping her into her jammies, she told me all about her plan to show her new backpack to all her friends at school. She would show it to "Anna, Kathy, Eddie, Charles, Miss Janie, Miss Abby..." etc. (names have been changed for anonymity).

She sat and stared into space, obviously envisioning how her friends would be so impressed (read: jealous) with her new backpack and lunchbox. And Mom sat there realizing (yet again) that she was in deep, deep trouble on the fashionista front.

Then we spent (literally) a half hour debating the perfect location in her bedroom for her new backpack.

It took some time, and much analysis, but it was finally decided that the Dora Backpack should be placed by Erin's bedroom door. It is strategic in that she can see it from her bed... yet it is handy to grab in the morning when it is time to leave for school.

Something tells me that tomorrow morning we will be faced with an argument when we tell her it is Sunday and there is no school.

So she'll have another day to wait before she can wheel her new backpack up to her new cubby. In her new room.

In Preschool.

:D

sigh

2008-08-22T13:35:00.003-04:00

So, in good news, Toes has been doing really well in her transition to the Preschool side of her daycare. She is so excited to be with the big kids, in a new room, with lots of new activities and (most importantly) recess access to the side of the playground with two slides!

I was eager to get the ball rolling with the Itinerant Teacher of the Deaf, so I went to the school district's website to pull up her e-mail address and phone number so I could call and see when her first visit to the school would be.

Lo and behold, I discovered her name was missing from the staff list. That is definitely not a good sign! I sent an email to the school psychologist, who is responsible for her IEP, asking what happened to Mrs. L and asking if there would be a replacement assigned. It was the first day of school, so I thought an email would be best. Two days later - still no response. So I called and left a voicemail this AM.

Hopefully, they have already identified a replacement and they are just getting him/her on board.

To further compound matters, we found out yesterday that *both* of Erin's preschool teachers are moving on to new positions with other schools. It is pretty common for the school to lose teachers in August. Since they require their teachers to have degrees and teaching certificates, they often lose them to school districts (you know... with pensions and summers off and all the perqs) at the end of the summer. Unfortunately, it looks like the Preschool room was hit the hardest this year.

So, *sigh* it looks like we are in a state of limbo at the moment. Erin is still in preschool and is doing well. That is what matters most. Hopefully her new teachers will be in place soon and we can get this school year off and running!

Toes the Teach

2008-08-16T22:43:00.017-04:00

Beech Grove School in Cataloochee, North Carolina greets the new teacher...

...Miss Toes

She is formidable with that switch, but Dad and Grandpa held their own.

Erin starts her transition to the preschool side of her daycare center Monday. She is so excited! And is ready to go.

I hope her teachers are ready.

Adding another "Simply Amazing" to the list

2008-07-24T13:58:00.005-04:00

We continue to be amazed at how well Erin pronounces many of her words.

We realized recently that she even picks up different accents and inflections.

For example, one of her Elmo videos has a little girl that says the phrase "It's my turn now." The girl pronounces the words correctly, but uses an unusual inflection on the word "now." Erin uses that exact same inflection when she says "now."

Last weekend, we had visitors in from China. One of them noticed Erin eating a cookie and asked her "Do you like your cookie?"

With his accent, the word came out as "cook-kay."

Erin said "No! Cook-eeee!" She repeated the correct pronunciation over and over until he was able to repeat it back. At one point, she even pointed to her mouth to show how to form your lips when saying "eeee."

Our guest thought it was hysterical. I thought it was simply amazing.

Toes Turns Three

2008-07-24T13:40:00.007-04:00

It's official! We have moved from Toddler to Pre-schooler.

Toes thoroughly enjoyed herself at her birthday party. This is the first year she really understood what was happening. She had a blast being the center of attention. (Not that she isn't normally the center of attention, anyway, but having an excuse made it more fun.)

Waiting for Guests to Arrive

I just have to say.... WTF?

2008-07-15T21:33:00.003-04:00

I don't use this phrase lightly, but WTF???

Three Year Old Has Processor Stolen - Mistaken for a Bluetooth Device

Laurie from Dance with Sound posted this on Facebook and I just had to share.

I have so much to update. Erin's 3rd BDay party, language developments, arguments with United Health Care over providing us with more than 20 therapy visits this year, etc.

I'll try to get some posts up soon, but I didn't want to let this news item go by without comment.

What bothers me the most about this story is that the thieves probably chucked the processor into a sewer grate as soon as they discovered it was useless with their cell phones. This infuriates me.

Summer Time... and the Living is Easy

2008-06-22T21:27:00.004-04:00

Nothing much new to report these days! Erin continues to develop her language skills at a rapid rate. Every day it seems like she has developed new words and clearer pronunciations. Sometimes she seems to say some words much more clearly than many adults do. It amazes us!

I am thriled to announce that Erin is also potty trained! Finally! I was starting to get a little stressed about it, as her 3rd birthday approaches. I didn't want her held back from preschool in the fall because of something like this. In typical Toes style, she decided one day she was done with diapers and was accident free after two days. :) I am so happy I didn't push the issue earlier.

Between that and just a change in attitude, it is as though Toes has changed from a Toddler to a Preschooler overnight. *sniff, sniff*

Erin is also starting to become much more aware of her processors and the fact that her ears don't work like other people's ears. She doesn't seem bothered by it. Kids are so matter-of-fact about these things.

Tonight, after her bath, we were curled up on a chair in her room reading stories when she said "Tomorrow I go to the doctor." I asked her why she needed to go to the doctor. She said (and pointed to) "My ears." I told her we wouldn't be going to the doctor again for her ears for a long time. (Her next ENT appointment isn't until December) She said "Oh. I hear here?" and pointed to her processors. I said "Yes." She nodded and seemed to think about if for a minute and then said, "Not in the bath."

She was grinning when she said this. If you had witnessed the bath she just had, you would know why. Bath time is a challenge. And it is very easy for her to take charge of the situation. As a result, I am often totally soaked from head to toe by the time we are done. What child wouldn't love *that* scenario?

I am not sure how to take that whole exchange. I don't think it is something she is sad about. She seems to finally be noticing these things on her shoulders are not something everyone has. I get the impression she sees it as a plus. As though she has a nifty toy no one else does.

I imagine as time goes on, she will continue to have these "a ha" moments as she begins to understand what it is that makes her different. Dad to Toes and I want to help her understand without making it a big deal.

The things that differentiate her from her peers are so minimal compared to the things that are similar.

The Response from the School

2008-06-04T20:09:00.002-04:00

I received a response to my email almost immediately.

The school has agreed to modify the dates of the IEP to 8/20 - 10/20/2008. This is the scenario I wanted the most. I was concerned that if we met in July to draft goals for Erin, she would likely meet them before the school year started - or very soon thereafter.

Also, this will give the Teacher of the Deaf that has been assigned to Erin the chance to see Erin's school and get a better feel for what she may or may not need there in the way of services.

My only remaining concern is the frequent advice I have received that it is harder to get new services added to subsequent IEPs after signing the initial. But it is a gamble I am willing to take at this point.

I think this is the best scenario for all parties - and most importantly, the best scenario for Erin.

What a relief to have this resolved - at least for now.

Our Response to the IEP

2008-06-04T17:03:00.004-04:00

Mrs. XXXXX,

I wanted to thank you for pulling together Erin's IEP.

(Dad to Toes) and I have reviewed the IEP. After extensive discussions between the two of us, we are still not comfortable with the single goal that has been identified. We feel strongly that Erin should have additional goals listed to be used as a means of monitoring her continued progress through the year.

I was under the impression, based on my understanding of the IDEA regulations, that we would be involved in developing Erin's goals. I am not prepared to accept the IEP as written, as we were not afforded the opportunity to develop the goals as equal members of the IEP Team.

I would like to meet again to discuss further, hopefully at a time when you and the rest of the team are not working under schedule restrictions.

We would be available to meet any time after July 4.

I understand that this is mid-summer and you may not be available at that time. If you are unable to meet at that time, (Dad to Toes) and I would be willing to sign the IEP with the draft goal you have suggested, provided the timeframe of the IEP is changed to 08/20/08 - 10/20/08, rather than 08/20/08 - 06/04/09. We could then meet again in the fall to finalize her IEP for the balance of the school year.

I look forward to your response, and I appreciate your understanding on the matter. We value Erin's education and are proud to have her in the xxxxxxx School District. We look forward to developing a positive relationship with everyone involved in her education.

Thank you,

(Mom to Toes)

Tears.

2008-06-03T21:37:00.005-04:00

I realized tonight that I have cried more tears of joy over Erin's hearing than I have tears of grief.

How astounding is that?

Today, Erin had her 6 month appointment with the ENT. Everything looks great. Her scars are healing well, the skin over the magnet site shows no irritation.

Toes generally does not respond well to the ENT. He is a nice guy and an amazingly skilled surgeon, but he is a little abrupt and not the type of person kids respond to well.

We really wanted him to see how well Erin is doing, so we asked her to sing her ABCs. She refused at first, so Dad to Toes started on his own. By the time he got to "G", she jumped in. Her head in his chest, she sang the rest of the song with him, the ENT repeating the letters in amazement.

I tried to sing along, but got choked up and had to stop. Then the tears came.

My baby girl was singing her ABCs with Daddy. :)

Later in the evening, Dad to Toes was putting Erin to bed. I heard her singing "Twinkle Twinkle Little Star". I couldn't resist, so I stuck my head in the door, expecting to find her sitting on his lap, post stories.

But she was already in bed. No processors. Singing for Daddy. And she was even sort of on key!

What a gift she is.

*********************************************************************

We are still unsettled on the IEP. We have received so much great advice from people in the CI World and we are working to digest it all.

Today the ENT surprised me. I told him about our struggle with the school, hoping he'd jump on it and write a letter to the school. Instead he said "What services are you not getting that you need? It seems to me like she may not need any."

*sigh*

I don't necessarily disagree with him... I just want her to be monitored to make sure she continues to make headway.

Why does this have to be so complicated?

Looks like its gonna be a long fight...

2008-05-27T21:44:00.003-04:00

So, I presented the goals and was told they are nice personal goals for Toes and they would be more than willing to add them to the evaluation portion of the IEP, but that "Is not how IEP goals are done."

Huh?

Basically, the school feels that since Toes is currently being assessed at "solidly" age appropriate levels in her language skills, there does not need to be any goals more aggressive than the one already listed.

I am disappointed and angry. I had hoped I wouldn't need to fight.

Mostly I am frustrated to have what feels like Erin's fate in some one else's hands. Someone who is much better equipped to fight the battle I see ahead.

Again... I am not asking for much. The goals were basic and were to be guides to make sure that Erin stays on track for the following year. I wasn't even all that concerned about the lack of SLP services. I just want to make sure there are objective milestones in place rather than solely relying on a single person's subjective assessment of Erin's progress throughout the year.

*sigh*

We ended things with a plan for them to revise a few minor items in the IEP and send it to us for review and signature. Beginning next fall, the Itinerant Teacher of the Deaf will visit Erin's school once a week for a month. We will then sit down and review the IEP and set a more formal one.

I am waffling on whether to sign now and fight in the fall, or push now. On one hand, Erin very well could meet the goals I suggested before the school year begins. So, leaving things a little open until October might not be such a bad thing.

I need to take a step back and evaluate how I am feeling about all of this.

Valerie, thanks for the link to your blog post. I'll take a look and probably send you an email in the next few days. ;)

Draft Eval and IEP

2008-05-27T12:58:00.003-04:00

I received a copy of the school's evaluation of Erin and a draft of the IEP on Friday.

Suffice to say I was underwhelmed. The eval showed her at an age-appropriate level for receptive and expressive language. Which didn't surprise me in the least. We've worked hard to get there. What did surprise me is that in the Draft IEP, there was no mention of SLP services. None. How they expect her to stay on track without further work, or at the very least, some monitoring, is beyond me.

It is also kind of comical to note that they suggested only 1 goal - and it was a receptive language goal. I actually laughed out loud when I read it. The goal itself is lovely, but where are the rest of them???

Right now I am taking the word "Draft" as the operative term in the equation and not getting too worked up.

We meet at 3 PM today.

************************************************************************

Today is Christian's Activation Day! I'm excited for video!

And it is also Grandpa to Toes Birthday! Happy Birthday, Grandpa!

Deaf Couple Wants Deaf Baby

2008-05-20T08:25:00.005-04:00

Interesting video...

A Deaf couple wants to use IVF to guarantee a Deaf baby.

I can totally understand wanting your child to be like you - but using embryo screening seems a little extreme to me.

Thoughts?

Next step in the Transition from Early Intervention

2008-05-18T22:09:00.005-04:00

We are scheduled to meet with the school on May 27th to discuss the results of Erin's evaluation.

We will be getting a report on the eval prior to the meeting for our review. I can't wait to see it.

The school would like to have the IEP meeting on the same day. I have heard from a few people on the "inside" that they already plan to offer us all the services we want. I am not against discussing the IEP services on the 27th, but we intend to take the draft IEP home with us to review prior to agreeing with anything.

We are fortunate in that there are a couple other kids in our district with hearing loss who are a little older than Toes and have paved the way. It is definitely working to our advantage.

I spent some time in the preschool room of Erin's school on Friday. I just love the curriculum. It is so language, social skills and self help based. She is scheduled to move up to the preschool room in September, provided she is potty trained. (A whole other issue I won't get into right now.)

Erin's first teacher is now the Assistant Director. She gave me the preschool tour. We talked a bit about the early days when Erin was first diagnosed. And how we both wondered what her life would be like. We both choked up as we talked about the Toes we know now. How she fits right in with her peers - how she talks up a storm whenever the asst director walks in the room. We both agreed we have no idea where she would be without her CIs.

I will detail what services we are looking for and what the school is offering after things are a little more settled. I don't want to put all the cards out on the table just yet. ;)

**********************************************************************************

I feel like I need to post new video, because Toes is already so much further ahead than she was when I posted the cupcake video.

When I went to pick her up at daycare on Friday, I found a note on her cubby that read:

Today Erin said "I want to play with the shopping cart." Yesterday, Erin said "I want to go home with Audrey, too!".

Maybe it was the emotional meeting earlier in the day, but tears streamed down my face. I stood and looked at that note and was so amazed at how far we have come. It isn't just that she blurted out 8 word sentences spontaneously. It is also that she is in a place where her teachers understand just what that means. And how important it is to encourage her to say even more.

I took the note down, grabbed a pen, and added the date and the names of her teachers. Someday she will look at that note - and know just what it meant to me.

I hope she laughs at my sappiness.

Video - 1 1/2 Years Post Initial Activation, 6 months Post Bilateral Activation

2008-05-07T21:41:00.004-04:00

Toes's language has really taken off lately. In the last few days she has started rattling off 5 word, spontaneous sentences. It is so amazing how fast her language has exploded since getting her second implant.

We gave Toes a special treat of a cupcake after dinner tonight. She had a lot to say about it (including a little tantrum when she heard the soft clink of the plate Daddy was putting her cupcake on "No plate!".... yeah, we need to work on that. We are still so amazed that she even hears this stuff, so we cut her a little too much slack.) She calls her cupcake a "birthday cake". You can catch me repeatedly trying to get her to say "cupcake" instead.

Toward the end of the video, she answers a couple age appropriate "Who and How" questions - our biggest therapy focus right now.

ASL and Name Signs

2008-05-06T21:52:00.003-04:00

So, as most readers of this blog know, we have introduced a little ASL to Toes. We mainly use "useful" signs, like: More, Please, Thank You, No, Yes, Bath, Listen, Mom, Dad, 1, 2, 3 and the very useful and universal "Time Out".

The last few have come in quite handy lately. During times Toes isn't wearing her equipment, like in the bath or while dressing, "Listen (to) Mommy" and "1, 2, 3 Time out!" have pretty much saved us all. And have helped us to continue enforcing discipline even when she can't hear us try to reason with her.

But, of course, there are times when our limited signing is used in less disciplinarian ways. Like tonight.

After going to bed, Toes usually calls for us about 15 minutes later. She just wants to make sure we're here. We go in, kiss her and tuck her back in for the night and that is the last we usually hear until the morning.

Tonight when I went in, Toes said and signed "Mommy!" I signed "Mommy" back to her and nodded. She signed "Daddy?" And I signed back that Daddy was sleeping. She signed "mommy" then "daddy" then said out loud "Erin??" and shrugged.

Hmm. Erin doesn't have a sign! Why haven't I come up with a name sign yet???

So, I am asking the blog readers to help me. What name sign would you give to Erin Toes? An "e" and "toes"? Something combined?

I would love some input. :D Post in comments or email me.

Oh, and I have to share what Dad to Toes suggested...

He thought maybe a combination of "Mom" and "Dad" would be fitting.

So, he used the same hand motion for Mom or Dad, but met in the middle... at the nose.

Try it. hahahahah

Um, no. I don't think so.

No Words - an update on Ben

2008-04-29T08:13:00.003-04:00

I don't even have words right now.

After 8 months of chemo, radiation, infections, intensive procedures, surgeries and heartbreaking pain the cancer is still there in Ben.

Today they find out what their options are. It is likely 6 months of a relatively new, but unproven treatment that will send them into even darker places.

Please, please keep the Towne family in your thoughts.

Erin's Evaluation at the school

2008-04-25T21:54:00.007-04:00

Erin had so much fun at her evaluation today.

As I was getting her dressed this AM, I told her we were going to "Another School" where she was going to play with some new friends. She was so excited.

We got to the school early, so we hung out in the lobby to wait. She was so thrilled to watch the bigger kids walk up and down the hallway to their classrooms. The schools' Teacher of the Deaf came to sit with us and we talked while we waited. Toes really took to her! Toes generally loves everyone she meets, but I could tell that the TOD was one of those people that Toes put on a whole different level. I love when she meets people that she makes a deeper connection with.

We spent the first hour with the Speech Language Pathologist doing some testing. Toes did great - and did her best to listen. Towards the end, she got feisty and started answering questions I know she has down pat intentionally wrong (calling a car a doggy, etc). So, we ended the session and went to the preschool room so they could evaluate her in the other functional areas in a play based setting.

While she was playing, I met with the school psychologist to go over the written questionnaire I filled out a couple months ago. The questionnaire covered all functional areas. I blogged about it here.

Amazingly (or maybe not), Toes fell within an acceptable level on language based on our answers. She was in the caution area - but not below the level that would qualify for services. But, this parental questionnaire is just a piece of the eval process.

Surprisingly, (or maybe not) the only area Toes fell under acceptable level was in Gross Motor. And, even with that, she was on the border. That didn't surprise me, remember I blogged about it here. We plan to discuss the issue at Erin's 3 year visit with her pediatrician.

As the psychologist and I talked, she told me about the preschool options available at the school. They have a great program. She told me that the school offers itinerant services and that if I was happy with Erin's current program, I could potentially keep her there and have services sent there - if she is eligible for services. YAY!

She then told me that she is fairly certain she will qualify based on her hearing loss alone (as Zoe's mom, who is in the same district, told me) but that she can't promise anything at this point. She asked what services I am thinking of asking for and I told her I really want to wait for the results of the eval before deciding that.

SO, overall I am extremely pleased with how things are going so far. This may be one of those situations where my overzealous research has raised unwarranted concerns. I guess it never hurts to be over prepared... but sometimes a parent really needs to step away from the Google. ;)

The school should have the eval results ready for me in a few weeks. We'll schedule a meeting for the eval, and the school hopes we can settle the IEP (if warranted) at that time. I will more than likely request another meeting, because I really want to review the eval results before signing the IEP and moving forward.

From Erin's point of view, it was a fun day. She got to go to a new school, watch the big kids go to class, listen with a new therapist, and play with new friends. She makes us so happy!

I stopped and talked to the Director and Assistant Director of Erin's current school/daycare when I dropped her off after the eval. They were so happy to hear that it looks like Erin can stay with them. The Assistant Director was an Infant Room teacher when I went back to work after my maternity leave. She has been with us through the entire journey. We didn't tell the daycare about Erin's failed newborn screenings when she enrolled, because she had passed the ABRs at 2 months old. But, they, like me, saw the signs that Erin was not hearing. They were there when Dad to Toes finally saw the same thing we were all seeing. When he called "Toes!" right behind her and she didn't turn around. They were there for the hearing aids and for both cochlear implants. They learned right along with us how to help Erin "Learn to Listen". This place is special to us and it means a lot to us to keep Erin there for Preschool.

They have done so much for her so far... I know it is the right place for the next step in her educational journey. :D

An Invitation to an Online Panel Discussion with Cochlear Americas

2008-04-21T20:44:00.002-04:00

I received an e-mail today from an outside representative of Cochlear Americas inviting me to attend an Online Panel Discussion. She encouraged me to share the invitation with those who have an interest. The information is below... just click on the link to register.

Any questions can be directed directly to Gina Spatafore at gina.spatafore@webershandwick.com. I'm looking forward to logging in and seeing what it is all about. Please join me!

Cochlear Americas will be hosting its first-ever online panel discussion around the subject of hearing loss on May 1st. This event coincides with the kick-off of Better Hearing and Speech Month (BHSM) - May 2008. The month provides a great opportunity to educate and inform the general public about the importance of good hearing, the social and emotional implications of hearing loss, and the available solutions. Hearing loss affects people of all ages - from toddlers to seniors - and can greatly impact the lives of families and caregivers. Cochlear will be bringing together patients, healthcare providers, and experts in the field to share personal stories and discuss the latest developments in treating hearing loss. They'll also be available to answer your questions via live chat during the session. The panelists include:

- Amy Popp, Audiologist and Clinical Educator, Cochlear Americas
- Linda Day, Cochlear recipient and Awareness Manager, Cochlear Awareness Network
- Brenda Batatt, Executive Director, Hearing Loss Association of America

Additionally, Emmy award nominee and actress-singer, Kassie DePaiva of “One Life to Live” whose son, J.Q. DePaiva, was born deaf but can now hear with the help of a cochlear implant, will also share her inspirational story. Cochlear will also be announcing the results of a national survey that focuses on the social and emotional implications of advanced hearing loss. It has been administered to adults who have a relationship with someone who is profoundly deaf, as a friend, family member or colleague, as well as those who are themselves profoundly deaf. The online panel discussion on May 1st will be a unique opportunity to discuss the findings of this survey with the leading minds on hearing loss, and we would be very happy to have you attend this event.

The event logistics are as follows:
May 1st, 10:00 a.m. PT/ 1:00 p.m. ET
Registration: https://meetings.webex.com/meetings/j.php?ED=5287797&RG=1&UID=483330092
Dial-in: 866-469-3239 or 650-429-3300, closed caption will be available

I'm not usually one for cheesy made-for-TV movies...

2008-04-20T21:21:00.006-04:00

But, I'm watching Sweet Nothing in My Ear tonight.

It stars Marlee Matlin and Jeff Daniels. It is a story about a couple struggling to decide whether to provide a cochlear implant for their 8 year old child who was deafened post-lingually. One parent is Deaf - one is not.

Some of the scenes are in a courtroom setting. A very easy way for the writers to show the very conflicting sides of this argument.

I wouldn't call the program a documentary by any stretch... and anyone who watches should not view it as such. But from what I have seen so far, it seems to be giving a fairly accurate depiction of the CI Conflict and why it is such a volatile subject.

I respect the Deaf Culture and at some level can understand why they feel as they do about CIs. I hope this movie helps others see that as well. As a hearing person, I always found it so difficult to understand why anyone would not want their child to hear. But after having Toes, I took the time to learn more. And I am glad I did.

Watch the movie.

It's MFE Time!

2008-04-19T23:12:00.002-04:00

It's Multi-Functional Evaluation Time!

Erin's MFE is scheduled for next Friday morning. We will report to the primary school at 8:30 for a play based assessment that should last about 2 hours.

I am eager to have this past us.

I am not one to want to take more than what Erin truly needs. But, it is very important to me that we ensure she qualifies for an IEP (Individual Education Program).

It isn't so much that I want her to get all sorts of services, but that I want her to stay high on the radar screen of the administrators at the school.

I mean, yeah... I want services. But ultimately I want to make sure a channel of communication is made that will stay open through her entire K - 12 educational period. A positive channel of communication.

Erin is deaf... so she should automatically qualify, right? There are laws on the books that state a child with a hearing deficit of X db is automatically eligible for an IEP.

This seems pretty cut and dried. But, recent ADA rulings may lend enough credence to the concept that people like Erin do not "technically" have a hearing deficit, because the deficit can be corrected through mitigating measures - ie, her Cochlear Implants.

This is good and bad. I am thrilled that these "mitigating measures" are available to her - to allow her to lead the extraordinarily normal life she is leading. But, the gains she has made in her language are not solely credited to her CIs. Her gains are the result of hard work on her part and on our part, and she will need to continue to work just a little bit harder than the other students to meet her educational goals.

Because of that, I want to ensure that she has some basic services available to her.

So, wish us luck next Friday!

Tagged

2008-04-15T21:04:00.004-04:00

It seems I have been tagged - twice.

So, here goes:

A Blogger Tagging Game

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

I have to answer questions and people I tag have to answer the same questions, so here I go.

What was I doing 10 years ago:
10 years ago, I was mired in my career, enjoying my late 20s. Boring, huh?

Five Snacks I enjoy:
- Chocolate Cake with Chocolate Icing
- Hershey’s Miniatures - Special Dark
- Chips and Salsa
- Twizzlers
- Dove chocolate ice cream bars

In the real world:
- Melon
- Strawberries
- Nabisco 100 Cal Packs
- Cucumbers
- Bananas

Things I would do if I were a billionaire:
Take a loooooong vacation, buy a new home on a gorgeous piece of land, invest enough to ensure that no one in the country would ever spend a night hungry - ever. I am sure I will think of more. :-D

Five jobs that I have had:
- Cashier at a backpacking / outdoor store
- Art Gallery Monitor
- Gourmet Coffee Street Vendor in NYC - before gourmet coffee was cool (If I had a dollar for every time someone walked up to me and said “$1.25 for a cup of coffee?!?!” I’d be that billionaire mentioned in the previous question)
- Deli Manager
- Human Resource Manager

Three of my habits:
- Overuse of the internet
- Rough housing with Toes too close to bedtime
- Gardening

Five place I have lived:
- Small Ohio City #1
- Smaller Ohio City #2 (college)
- New York City
- Small Ohio City #3
- Small Ohio Town #4

Add one new part:
I am going to steal Drew’s Mom’s - sort of:

What are the first three pieces of advice you offer parents of children newly diagnosed with a hearing loss:

1. It *will be OK* - it will.

2. Take in every piece of advice you receive, but make the decisions that are right for *your* child and *your* family. Never let anyone make you question those decisions. No one has all the answers, no matter how hard they try to convince themselves (or you) that they do.

and, most importantly...

3. Do not let your child’s hearing loss define him/her.... or *you*.

Five People I Want to Get to Know Better: (a nice way of saying TAG!)
But don't feel obligated! Just do it if you want to.

Melissa (Thomas’s Mom)
Jennifer
Loudest Mom
Jason (Tom’s Dad)
Courtney (Rhyan’s Mom)

Mimicking

2008-04-04T22:13:00.014-04:00

Toes is to a point now where she can mimic just about every word or short phrase we utter. Often with alarmingly accurate tonal skill.

It means her processor is mapped extraordinarily well. And it means Toes is learning how to use what she hears to create accurate speech. This is good stuff.

But, it also means it is *really* time to start watching what we say.

Toes's favorite downtime activity right now is watching Dora the Explorer videos. The Map character is not a favorite of Dad to Toes and mine. Whenever he comes on, we sing along, exaggerating the whiney and loud tone he uses when he says "The Map!"

Now, whenever Toes sees The Map, she doesn't just say "the map!" She says "THE MAAAAAAAP!" with an annoyed tone to her voice.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lesson #1. Don't verbally satirize toddler TV show characters, no matter how annoying they may be.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This morning, Dad to Toes was trying to get Toes ready for daycare. She was in a typical toddler mood and was pointing out everything he was doing out of whack from her normal routine.

After a long list of complaints, Toes launched into a tirade that was incomprehensible.

Dad to Toes, trying to identify his latest infraction, said "Now what did I do wrong?!" in an annoyed (and, quite frankly, annoying) tone.

This is a phrase Toes had never heard before.

But, right on cue, she said "What did I do wrong?!" In the exact same annoyed (and, quite frankly, annoying) tone that Dad to Toes used.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lesson #2. Don't say anything - or use any tone - you would not want to hear thrown back to you by a toddler. Even if said toddler is deaf.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

and, for safe measure....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lesson #3. No matter how funny you find your deaf toddler sassing your spouse with the same words and tone he or she uses, do not.... DO NOT.... laugh uncontrollably from the next room.

At least not while said toddler still has his/her processor on.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Because, that is just *not* the kind of message you want to send.

Hmmm.... or is it? ;)

Home Therapy and yet another reason to love Target

2008-03-20T12:30:00.008-04:00

I often get questions about what therapy techniques we use at home.

It is a question that is hard to answer. Mainly because we really don't feel that we use "therapy techniques". I used to be very intimidated by the phrase "In Home Audio-Verbal Therapy" and I know a lot of other parents feel the same way, especially in the early days of the journey.

If Erin's RIHP Rep reads this, she'll laugh and roll her eyes. Because she tells us at every home visit that we are a "Classic AVT Home Setting".

What does that mean?

We don't sit Erin at a table an hour a day with flash cards or games or listening tools... hands over our mouths... in sessions that I envisioned would be necessary when I first researched AVT. We don't narrate every action in our daily lives. We don't say "Look, Erin, we are chop, chop, chopping the hot dog!"

So, if we're not doing that, how can we be a "Classic AVT Home Setting"?

I've come to learn that AVT does not have to be taken to an extreme degree to be effective. And it need not be structured to the point where we have to chain Erin to a chair an hour a day. We have learned to incorporate conversation into our day to day activities, without feeling like we are just narrating our lives away.

We talk about what Erin did in daycare that day. We talk about what toys she would like to play with after dinner. We talk about what we did at work. We talk to her directly and we talk to each other. We just talk. And, if we don't have anything to say, we don't talk.

We talk when we play. And for this I give a lot of credit to Target.

Yes, you heard me. Target.

You know how toddlers get bored very easily? How it is impossible to keep them interested in anything longer than a few minutes? How they attach to a new toy like it is the long lost, best friend they've been searching for?

Well, that is where the Target Dollar Bins come in. We are at Target almost weekly. And right inside the doors are the Target Dollar Bins. We have never walked past the Target Dollar Bins without spotting at least a few items that we can use for language building exercises.

In the early days, we found little wooden toys: cars, airplanes, boats, trains, animals, etc. that we could use for the Learning to Listen sounds.

Later, I found a puzzle made of cardboard with pieces in standard shapes. She quickly learned to identify them all by sound - square, rectangle, circle, etc. And before I knew it, she was saying each word herself.

Right now, her favorite is a basic Memory Game that came in a cute wooden box. "Erin's turn! You found a frog! Where is the other frog? There it is! Mommy's turn. What did Mommy find? A butterfly! Where is the other butterfly?"

There are also generally a few Dollar Board Books available in the bins. We love these. They are usually very short - no more than a few pages. But they are chock full of things to talk about. Right now our favorites are a counting book with dinosaurs "Dinuhsar Book!" and a book of bugs in different colors "Bug Book!"

It is nice to be able to grab a few new toys every week to keep language based play interesting... without breaking the bank.

We also use a lot of normally priced toys in ways to encourage language building. For example, she loves to take turns stacking blocks. For each one, we talk about what color the block is. How many blocks are stacked so far? I ask her what would happen if she put a little block under a big block. Will the stack fall down?

Books with a lot of photographs are also a favorite. Priddy Books are some of our favorites, but you can find similar options anywhere, including the discount tables at local bookstores. There are so many out there to choose from. They are staples in our "therapy sessions".

My best advice is to just talk. Talk about whatever comes to mind. But don't stress too much if you aren't talking to your child 24/7.

It is also important to work with your child's therapist to identify missing links... sounds that he or she may be missing. Be cognizant of words that use those sounds and try to work them into your everyday language. For example, Erin drops consonant sounds in the middle of words. So, we are sure to put an emphasis on words that fit that bill. Da-DEE, Mo-MEE, etc.

That is what we're doing for Home Therapy. I don't think it is all that different from families with hearing children. We just kick it up a notch and are more aware of language building opportunities. And we take those opportunities when we see them.

And, of course, we hit the Target Bins for ideas.

A Clarification on "hearing" without processors.

2008-03-18T20:05:00.002-04:00

Based on a couple comments I've received off blog, I wanted to post a clarification on my post regarding Erin "hearing" without her processors.

Erin by no means hears sound without her processors. What she "hears" (I believe) is an internal form of sound, based on lip reading common phrases she is familiar with. She "hears" the words in her head.

She has become a fantastic lip reader. When she is given familiar phrases used in the proper context, we are able to communicate with her extremely well without her processors on.

However, if we were to try to use a phrase she is not very familiar with or one that would not make sense in the context, she would not be as successful in understanding us.

I hope that helps clarify the post. Like many parents of CI Kids, I tend to emphasize successes. But I didn't want anyone to think I had convinced myself Erin could now "hear". ;)

Sprinkler Proof? Why bother.

2008-03-17T21:12:00.017-04:00

We just got back from vacation at Disney. Toes had a great time. Of course, at this age, she had more fun at the pool than anywhere else. But that was fine with us. It was so much fun to watch her play in the sprinklers.Cochlear Americas promotes their processors as "sprinkler proof" but we have never felt brave enough to test that theory. So, Toes goes without her processors when she is near water.

It is amazing how well we are able to communicate with limited signs and lip reading. There was never a moment where I felt she didn't understand what we were saying. "Eat lunch?" "Don't drink the water!" "Go on the slide?"

A month ago, a friend e-mailed me a link to a video of a family that came up with an ingenious way of wearing a processor in the pool. (Drew's Dad posted it as well) We look forward to offering this to her as an option when she is older. But at this point, we are pretty successful communicating at the pool. Other than the need to tap her on her shoulder instead of calling her name when we want to get her attention, there wasn't a glitch.

I imagined that as she got older and our communication became more developed, the limited conversation in un-aided situations would become frustrating. But after reading the latest entry on Lotte's blog, I think I may be underestimating what these kids are capable of. Toes is already showing signs that she "hears" without her processors. In another few years, I imagine she will be much like Lotte in her ability to "hear" - even without sound.

I don't think there will ever be a point where I stop being amazed at what CIs can do.

Post note:

Based on a couple comments I've received off blog, I wanted to post a clarification regarding Erin "hearing" without her processors.

Erin by no means hears sound without her processors. What she "hears" (I believe) is an internal form of sound, based on lip reading common phrases she is familiar with. She "hears" the words in her head.

She has become a fantastic lip reader. When she is given familiar phrases used in the proper context, we are able to communicate with her extremely well without her processors on.

However, if we were to try to use a phrase she is not very familiar with or one that would not make sense in the context, she would not be as successful in understanding us.

I hope that helps clarify the post. Like many parents of CI Kids, I tend to emphasize successes. But I didn't want anyone to think I had convinced myself Erin could now "hear". ;)

What does a cochlear implant sound like?

2008-02-29T20:54:00.018-05:00

What does Erin hear?

Does she hear 100%?

She talks just fine! You worry too much. Why does she still go to speech therapy?

She isn't deaf anymore, right?

These are questions I hear from people all the time. It is very difficult to explain that while Erin can "hear" down to 10 - 20 db, she does not hear as clearly as you and I. It is actually very hard to say exactly what she does hear. She has never known sound in any other form so isn't able to describe how it differs from what we hear.

I came across an excellent set of Cochlear Implant Simulation Demos today that do a great job of explaining just what Erin may hear. The demos give examples of what CI users hear on 1, 2, 4, 8, 16 and 32 Channel Implants.

There are 4 Demos:

The following text is taken directly from the House Ear Institute's website. I offer the text and links for the convenience of our readers and in no way imply ownership of this information.

Decrease_Channels contains the original sentence first and then progressively degrades the spectral resolution. The order is: original, 32 channels, 16, 8, 4, 2, and 1 channel. Since the content of the sentence is known, it is possible to understand the sentences down to 4 and even 2 spectral channels. Most cochlear implant listeners are in the 4 to 8 channel range.

Increase_Channels presents the demonstration in the reverse order - starting from poor quality, so that the content of the sentence is not understood at first. As the number of channels is increased from 1 to 2 to 4 you will start to understand the words in the sentence at 4 channels. From 4 to 8 to 32 channels the words are clearer and the sound has better quality. Finally, the original sentence is played.

Music1 presents a clip of a very familiar popular song, with a single male singer. First you will hear the song with 4 channels, then 8, 16, and 32 channels. Finally you will hear the original music clip. Notice that you may understand the words of the song at 4 or 8 channels, even though you may not recognize the melody. Even at 16 and 32 channels the melody is not very good quality.

Music2 presents the opening lines of a very popular and familiar piece of instrumental music. As with previous demo, the number of channels increases from 4 to 8 to 16 to 32. The original music clip is played at the end. Note that you will probably not recognize it even with 32 channels. However if you listen to the sequence repeatedly you will notice that some melodic information is available with 16 and 32 channels, although the quality is still poor compared to the original.

Erin's Nucleus Freedom Implant has 22 channels. I am not an electronics engineer or an audiologist... but I believe this means Erin hears slightly less clearly than the 32 Channel simulation.

I noticed as I listened to the demos second, third and fourth times, that the speech and music became more apparent to me on the lower channels. I imagine this is very similar to what adult users of CIs describe when they say that at first sound is very strange... but eventually starts to become more clear. I'd love to hear what the CI adults think of these demos. I wonder what you hear when they are played?

I found these links on this page this page of the House Ear Institute's website.

Their website is an excellent source of information.

I'd like to thank Logan's mom for posting the link to the demos on her blog.

We made a snowman!

2008-02-27T22:30:00.004-05:00

Snowman!

We even gave him implants.

Teeter Toes

2008-02-27T12:51:00.009-05:00

Toes has never been the most coordinated kid as far as gross motor skills are concerned. She really didn't walk until she was 14 months old. She is very skittish about climbing on things and can't climb a ladder on a slide without assistance.

To compound matters, I'm a nervous mom and tend to hover too much in these situations.

I never thought much of it. It isn't as though she is way behind the other kids, so it was never a concern.

But then a friend of mine (Hi, Paula!) mentioned that deaf people often have issues with balance. I knew that fact... but I hadn't connected it to Toes's lag in gross motor skills. (OK, so yeah... I had a "Duh!" moment)

She suggested that as part of our transition to the IEP phase, that we have the school evaluate her gross motor skills.

While I was completing the evaluation the school gave me as the first step in the IEP process, I was amazed to see that I answered "No" to a vast majority of questions in the Gross Motor section.

Stands on one foot for a few seconds without support.
No.

Hops on one foot, at least two times, without support.
Um, No. Is she supposed to??

Climbs up ladder and slides down slide without help.
Um... No.

Runs smoothly, turning corners and making sudden stops.
Huh?

Walks up stairs unassisted.
Yes! (Yay! We got one!)

Walks down stairs unassisted.
(darn it) Yes... but not without a spotter because she usually slips once or twice.

And on and on.

I am not very concerned - I am not even sure this has anything to do with her deafness. I have friends with children the same age that aren't very much ahead of her on these things. But I am going to have the school evaluate her on Gross Motor Skills and I will keep on eye on it going forward. I am sure if she does have a delay, it will be easliy remedied with a little PT.

Every day, something new.

2008-02-27T12:03:00.005-05:00

Explosion!

We have been going through what can only be called a Language Explosion lately. Every day Toes is using new words that she is overhearing in normal conversation. She is using her words in new ways and in sentences that she has developed on her own, instead of the phrases that we work on.

Last week on the way to therapy, she started spontaneously singing along to "Row Your Boat". I've never sang this song with her. Granted, she was only really singing the last word of each phrase "Stream!" "Dream!", but I'm giving it to her.

She is very close to counting from 1 - 10. She definitely understands the concept of "how many". She has her colors and shapes down. She is working on her alphabet.

Dad to Toes and I had a moment of amazement this past weekend. She was doodling on a restaurant placemat while we were out to dinner, pretending to write letters. "Ayyy!" "Ceeee!" "Beee!" It was all scribbles, as would be expected at 2.5.

To give her some practice (and to help keep her entertained while we waited for dinner), I wrote an "A" for her, explaining that you go "Up, then down, then across... Ayy!". She took her little crayon, held it in her hand like Mommy did, said "Up, Dow, A Toss... Ayyy!"

And sure enough... there was a perfect little "A" on the paper.

It is a good thing we were at TGIFriday's where the noise level tends to be high... otherwise we would have disturbed everyone in the place when we highfived and made a production out of her first letter.

Then she went back to happily scribbling while saying "Ayy! Ceee! Beee!..."

Whose IDEA is it Anyway?

2008-02-22T15:25:00.001-05:00

OK, so I stole that line from the state's booklet. Real original, isn't it? ;)

If you are looking for information on IDEA and transitioning from Early Intervention to an IEP look here! This is an excellent resource I have only just begun to tap.

Thank you BCshared for sharing your link with me. Wow!

Transition from Early Intervention

2008-02-21T21:56:00.007-05:00

So, Toes will be 3 in July.

3.

Three.

3?????

OMG, Toes is going to be 3!

3 is such a big age. I remember 3. I remember being one of those kids that talked nonstop. After barraging my mother with question upon question I can her remember her saying...

"Wendy! I can't hear myself think!"

I remember asking my mother....

"Why can't you hear yourself think, Mommy? Why? How do you hear yourself think? How? Why, Mommy? How?"

So. Toes will be 3 in July.

Will she be at that same point in 5 months? Will she be asking me "Why?" and "How?"

Probably not.

But will she be close?

Probably.

Tonight we had our first meeting in the transition phase from the Early Intervention Team to the School District. It went very well. The Vice Principal of the Primary School came to see us at home, along with our Help Me Grow Coordinator and our RIHP Rep. We discussed what is to come over the next couple months.

Dad to Toes and I will fill out a form reporting what developmental milestones Toes has met or has not met. The school will evaluate the report and schedule an evaluation. The evaluation will be reviewed. Intervention eligibility will be determined.

An Individual Education Plan (IEP) will be drafted.

If warranted.

*If warranted*

So, this is what it comes down to. Toes is measuring only slightly behind what is considered "acceptable" in language development for a child of her age. It is very possible that the school district will find that she is within "acceptable" range for her age.

How is this possible? She is profoundly deaf. She wears Cochlear Implants to hear. Yes, she hears down to 20 db... but it isn't a *clear* 20 db. It is a manufactured 20 db. How can she not qualify for an IEP?

That is our challenge at this point. A challenge to help our school district (one of the best in the state) understand that Toes will need some help...an FM system, an itinerant Teacher of the Deaf, an extra speech therapist... whatever it takes to make sure she is in the mid-range of her age group by the time she is ready for kindergarten.

We are so excited and so anxious. The next few months will be interesting. It is another step. Like our step from new parents of a healthy baby girl to parents thrown into the Help Me Grow and Regional Infant Hearing Program.

We're ready for it. We have so many resources backing us. But it is still so surreal to be here. To be at this phase in the process.

How did it all come so quickly?

Music Appreciation

2008-02-02T20:09:00.000-05:00

When we found out that Erin had a profound hearing loss, one of the hardest things for me to face was that she would never be able to enjoy music. The concept devastated me, because music has always been a huge part of my life. In fact, I minored in it in college.

I am thrilled to say that that fear was completely unsubstantiated.

Toes not only enjoys music, she LOVES music. She insists on having the Wiggles on in the car at all times. As much as I love the Wiggles (really, I do) I do miss hearing the news on NPR in the mornings. Especially now when there are so many critical things going on the world.

So, we have started a new thing on the way to daycare every morning...

As soon as we pull out of the driveway, I say "Erin, Mommy is going to listen to the news." She says "OK, Mommy!" (really, it is "OK, Mah-hee!")

I listen to the news and get caught up.

When we are half way to daycare, she says "Erin's turn! Wiggles!!!!" (really, it's "Er-ahs turn! Wiggles!")

So I turn on the Wiggles.

She listens to the intro, then usually asks for a specific song. "Chicken!" or "Ducks!" or what have you. She sits in the backseat, swaying back and forth (mostly in rhythm) thoroughly enjoying the music.

My first thought was that she liked the music because of the silly lyrics and themes. But, the particular CD she likes most has Music Box Dancer, which is fully instrumental. It is one of her favorite songs. She bops her head back and forth while it plays and always yells out "Pretty!" when it is done.

This tells me she is "getting it". And it makes me SO happy!

Dad to Toes, on the other hand, is not so enarmored with the Wiggles. He would prefer Toes enjoy the classic rock stations he generally has on... but Toes just doesn't seem to get into Led Zeppelin.

Yet. :)

Equipment, equipment, equipment.

2008-01-20T21:17:00.000-05:00

We've really gotten to know the Hear Always team quite well recently.

At Erin's last mapping appointment in December, we told Erin's Audiologist that we have noticed that her new left side processors (top part of the unit pictured below) have a very loose connection with the controllers (bottom part of the unit pictured below).

She e-mailed Cochlear Americas requesting replacement processors.

This launched us on quite a journey.

The day I was scheduled to bring the replacement to the audiology department for programming, Erin's right side processor mysteriously died.

We ended up taking the processor from Erin's BTE Mini setup to use with her Standard BTE controller. She now has a beige processor attached to her silver controller. They don't compliment each other well, but I don't think anyone else notices.

We received the replacement for the dead processor, and found it also had a bad connection.

Our audiologist kicked it up a level at Cochlear and we will now receive a brand new processor *and* controller for Erin's right side. It should be here Tuesday. We are then to send everything back to Cochlear, with a special attn: line so they can take everything to the lab and have a good look.

It has been a confusing mess. But, Cochlear has been incredibly receptive and quick to react the entire time.

And the most important part is that Toes has not been without sound on either side at any point in the process.

I can't say enough about how pleased I am with the support we are receiving on this - from the audiologists and Cochlear. Defects happen. And we have been told that this defect is related to what they call the "bayonet" connections between the two units. They are quickly working to correct the issue. I am very confident that they will.

It is such a comfort to know that if we do run into issues, we are dealing with a company that is receptive to our concerns. Cochlear rocks.

A New Room

2008-01-11T22:52:00.000-05:00

So, our journey continues.

We have been busy getting back into the swing of things with the new year.

Toes moved up to a new room at daycare. The "Get Set" room. So, she is now "getting set" to move to preschool. Eek! She moved up along with her friend, Audrey, who is three days younger than Toes. It was a huge help to have her move with one of her little BFFs.

We love the new room. The kids are older. Their language is very advanced. The teachers are fantastic. Very engaged and on board with Erin's special needs.

I liked the teachers in her last room very much. But the teachers in this room are showing a much stronger interest in Erin's special situation and a desire to understand everything about her and her equipment. They are amazed by the technology and by Toes. So, we know she will be well taken care of.

**********************************************************************************

In this room, every Thursday is Show and Share Day. Thursday morning I told Erin it was a special day. I told her she could bring something special to school to share with her friends.

I wasn't sure if she would get the concept. So, I suggested she bring her new Dora book to school to share. I explained that she could bring her book to school and show it to her friends. I further explained that she would need to share and let everyone look at her book.

She looked at me a bit blankly, and I assumed I was expecting her to understand a concept that was a bit beyond her language capabilities.

Then, she said... "Show Audrey Dora Book!" (rather unintelligibly)

I said "What?"

She said "Show Audrey Dora Book!" (very clearly)

Her first self-developed four word sentence.

She didn't quite understand why I got so excited about the whole thing. She knew it would be fun to show Audrey her new Dora book. But why Mom was so worked up about it was a mystery to her.

I think I need to adjust my expectations a bit. ;)

Some video

2007-12-29T21:47:00.001-05:00

Toes loves her new Dora book.

Here she is "Reading" the book to Daddy. She is mostly just rambling nonsense, but she is trying to follow the rhythm of reading aloud and ends every page with a "Dora" or "Boots".

This is not the best demonstration of her current language skills, but it says a lot about her imagination. ;)

Her language amazes us. She is almost always able to get her point across with words. She knows most of her colors, can tell us what word goes with what shape we point out and is making huge progress on her numbers. We can't wait for pre-school. We know she'll do even better once that is rolling this summer.

Speaking of shapes... we found the greatest shape puzzle in the $1 bin at Target. You can see it on the left side of the screen in the video. It has been one of our most useful home therapy tools. I highly recommend finding a basic shape puzzle to use with your kids - hearing or hearing impaired. We have worn the thing out!

*****************************************************************

Erin had a mapping appointment on Friday. We spent some time in the booth and discovered her response on the left side is still only in the 35 - 40 db range. We were expecting more.

It is hard to tell if she is actually not hearing below that level, or if she is just not listening below that level.

Either way, we need to do some more work.

The audi told us to turn off the right processor at least 1/2 hour per day. She suggested that we try some of the softer Ling sounds (ss, sh) from varying distances to see exactly what she is picking up on. So, we've been working on it.

We know she understands us when we speak to her when she only has her left side on. But, we need to do more to make sure she is picking up on other sounds, other than normal speech level.

So, we aren't quite already there. But we are getting close!

Ho, ho!

2007-12-26T21:40:00.000-05:00

The entire Toes Family had a great holiday.

Toes is amazing us with her language skills lately. The second implant has done wonders in regard to her pronunciation.

She always struggled with two very important words: Milk and Mommy.

Milk always came out "Kah!"

Mommy always came out "Mah-hee!"

She is really coming around on forming the word "milk".

And, when reminded, she throws out a very clear "Mommy!"

But, I can't help but prefer "Mah-hee". It almost feels like her special name for me. :D

********************************************************************

Check out this new CI resource! http://www.cochlearworld.com/

Mark, a CI Father started the website to provide CI information. It is an excellent resource.

Mark has also started a new CI Forum. Cochlear World Forum.

Since Erin's diagnosis, I have been looking for a good Chat Board or Forum to share ideas, concerns, etc. with.

I have a Mom's Board with kids of a similar age to Toes that I am involved in. They are invaluable to me. And I love them all dearly. If it weren't for them and their sharing of the trials and joys of raising a two year old, I would be convinced Toes was possessed. ;) I am so very fortunate to be a part of this group.

But, I have longed to find a similar board or forum with moms and dads of Deaf and HOH kids. Yahoo has a couple of them, but a private forum would be so much easier to navigate.

I hope some of the other parents out there will join the forum so we can all start speaking openly.

So, check it out. Register and say Hi. Let's get the dialogue rolling.

~Happy Holidays~

2007-12-21T17:21:00.000-05:00

Dad to Toes, Toes and I would like to wish everyone a joyous and peaceful holiday.

It has been an amazing year in our family. I am amazed when I stop and think where we were a year ago, to where we are now.

At this time last year, Toes had no words. She gleefully waved as she strutted by with her new babydoll stroller and handbag, waving "Hi" and "Bye". But she had no words to express her joy.

This year, I can't count the number of words she is saying regularly.

We are so excited to see what this next year brings.

Thank you all for your support this year. And thank you for joining us on this journey!

Thoughts and Prayers

2007-12-18T20:47:00.000-05:00

Some of you may remember a post from August asking for thoughts and prayers for my friend, Carin, and her son, Ben.

Ben is mid-way through treatment for a particularly horrendous form of childhood cancer, called Neuroblastoma.

Ben will be having surgery tomorrow at 2:00 PST to remove the tumor in his abdomen.

Please keep Ben, his mother and father and his brand new baby brother in your thoughts. These are very special people.

Are we already there already?

2007-12-07T14:09:00.000-05:00

Yesterday evening I picked Toes up at daycare, put her in her coat, wrestled her into her carseat and headed home.

Along the way, we talked about the Christmas lights. We talked about how "Green means go!" and "Red means stop!" She told me to "Go that way!" whenever we came to a corner. We looked for garbage trucks. She asked for music. She told me "No!" when she realized it was Mommy's music, not hers. (I can never seem to fool her.) She bopped her head to the Wiggles. She sang "la la la" to Princess of the Sea.

When we arrived home, Toes and I walked to the mailbox to get the mail, we went inside the house, then to her room to wake up her bear from where he had been napping since morning and to put her coat away. We talked the whole time. About how we were going upstairs to wake up her bear and how she would hang her coat up. I asked what she wanted for dinner and she said "Chicken! Applesauce!"

When I took her coat off, I realized her right coil was trapped deep inside the sleeve of her coat. That only could have happened when I put her coat on at daycare.

For the previous half hour, she was listening and responding based on only her left implant. Even to music.

And I hadn't noticed a thing.

I never in a million years expected her to learn to listen and respond so well on her left side in only one month. It felt like we had only just begun our journey into teaching her to listen on that side. Yet it looks like we just might already be there. Already.

At therapy this morning, Toes's therapist told us that now that she is responding so well on the left side, we don't need to work with her right side off any longer. What a relief!

It was so difficult to work formal left-sided therapy into our schedule, given that she really disliked having only one implant on. Whether it was her left or right side. As soon as we would turn one off, she would start complaining. So, on weekdays, we were often only able to work in 15 minutes - and it had to be focused therapy where we kept her constantly interested in what we were doing. Otherwise she would remember she only had one implant on and start with the arguing.

Now we can go back to our usual process where we incorporate therapy into our every day routine - instead of concentrated sessions. We're back to our form of "normal" again.

Go Toes!

Waiting on the World to Change

2007-12-01T22:00:00.000-05:00

I have shied away from talking about the whole Deaf Culture vs. CI issue. Mainly because I have very mixed feelings on the subject.

I truly do understand what drives those immersed in the Deaf Culture to dislike CIs so much. I don't necessarily agree... but I do understand.

PBS's documentary, Through Deaf Eyes, really opened my eyes to so many things.

I am very interested in Deaf Culture. I don't believe that by making the choice of a CI for Toes, that I have robbed her of her chance to be a member of the Deaf community.

However, it has been very difficult for me to determine just what "Deaf Culture" means now. And what it will mean to Erin as she grows.

Digital Hearing Aids and Cochlear Implants have changed the picture. For good, bad, or otherwise. Technology is here. So, what will that do to the traditional definition of "Deaf Culture"?

I really don't know.

That, and very limited alternative options in my area, have almost forced me to place Erin in a totally mainstream world. She is happy. And doing well. She is well liked in her classroom. She has two very close girlfriends in her class, and the other children love her as well. Yet, I wonder what will change as she gets older.

I just don't know what the future holds. For her, or her deaf and hard of hearing peers.

Christian's Mom posted a very powerful video on her blog this week.

Waiting on the World to Change

I haven't stopped thinking of it since I saw it.

"Waiting on the World to Change"

What an interesting choice of songs.

I'd love to hear comments from my blog visitors on this piece. Speak up! Or email me. I really would love to hear thoughts.

(Oh, and don't miss the other new post below this one)

Is it December already?

2007-12-01T21:49:00.000-05:00

How did we already get to December???

Toes had her third mapping of her left implant yesterday. Dad to Toes took her this time. She did incredibly well! She now has basically identical maps on her right and left side.

The audiologist didn't put her in the booth. But, she reacted to all the Ling Sounds as well as voice commands and environmental noises with just her left implant on. She followed basic voice commands - "Where is Daddy's nose?" "Do you want an M&M?" with just the left implant.

Amazing what a difference in two weeks!

I have to admit that we didn't work as hard as I planned over the last two weeks to get her to this point. We tried to turn her right implant off for a little while every evening, during the week. But often, it only amounted to 1/2 hour or so. We did make the most of the 1/2 hour, though. We did a lot of "Do you hear that? I hear that!!!" exercises with phones, door bells, microwave beeps, etc. But, mostly, we just gave her time to get used to listening with her left side and it all fell together pretty quickly.

We still have work to do. She doesn't understand as much with her left side as she does with her right. And she still misses a lot of environmental sounds. But, the results she has had over the last 4 weeks are so encouraging. We are very confident that in another two or three months, she will barely notice a difference between sides.

She also now hates to only have her right side on. As soon as we put her right implant on, she immediately starts saying "Other side! Other side!" If Dad to Toes tries to cheat and only put the right processor on during pre-bed story time, she lets him know. ;)

We're very pleased with how things are going. This was definitely the right decision.

Learning to Listen on the Other Side

2007-11-18T20:38:00.000-05:00

Toes had a mapping appointment with the audiologist on Friday.

The mapping went really well. She was pleased with the progress Erin has made in tolerating the new programs.

After the mapping, we spent some time in the booth with just her left processor on to get a feel for what she is hearing on that side.

It was rather like our first visit to the booth in March 2006. Toes had no reaction to sounds while sitting there on my lap. :( I know she is hearing through the left implant, she just isn't listening.

So, I think my statement on an earlier post, "This is not a race", needs to be revised a bit. We need to spend a little more time with just her left processor on so that she learns to listen on that side.

I was pretty concerned about how we were going to accomplish this, seeing as she really does prefer to have both implants on and does not like to have her right processor turned off.

But, this morning we decided to give it a try while we were playing with puzzles - one of the more prime opportunties we get with Erin to work on therapy techniques.

She did great! She was able to follow very basic direction and responded to simple questions. I wouldn't say she is completely understanding what we are saying, but she gets enough to get by.

Ultimately, we had two 1/2 hour stretches this AM where she went with just her left processor and another 1/2 hour stretch tonight. We plan to work up to longer stretches over the next week and the long weekend. Then we'll ask daycare to do the same during story time and other times when Erin is expected to listen.

Our hope is to have her back in the booth for her next mapping on November 30 with responses closer to 20db.

So, we have some work to do! But, we're up to the challenge.

A little Flashback

2007-11-07T21:53:00.000-05:00

I found some old posts from a mom's board I was on when Erin was given her hearing aids.

Let's see how it looks on the blog:

****************************************************************************

May 6, 2006

This is the before shot:

This is the first aid going in:

This is her reaction. The audiologist was saying “Peek-a-Boo!”. Erin thought it was funny.

Front shot of both aids in:

Close up shot of her stylin’ aid!

It is kind of strange. It's almost like she has always had them. They are very "Toes".

And now the fun beings!!!

*******************************************************************

I have a lot of posts from that era - her pre-diagnosis, to her diagnosis, to intervention, etc., that I want to post on the blog. I will begin adding those posts here over the next week or so.

It is very touching to look back at this phase in our journey. I had quite a bit of support from so many people. And at the time, I had no idea how much of an impact that support would make.

Thanks to my SDs and J05ers who were there then... and are still here now.

You know who you are. ;)

Well, tonight wasn't as successful.

2007-11-05T19:53:00.000-05:00

*sigh*

When Toes's left coil falls off, she always says "uh, oh!" and tries to put it on herself. Then generally hands it to one of us to put back on if she can't quite get it.

While eating dinner tonight, the coil fell off. Toes said "uh, oh!" then pulled the processor out of the baby worn clip and wanted nothing to do with it the rest of the night.

Not during Elmo Time. Not during story time.

I think I may bring it back down a level back to the 2nd program in the morning. Maybe she isn't ready for the 3rd program just yet.

She goes back for her next mapping in two weeks. Our goal was to move into the second processor which holds four other mappings for her to try before that visit. But we don't want to rush her.

Hopefully tomorrow will be a better day! I think the time change has messed with her sleep and made her a little cranky. I know it always does that to me. ;-)

We had an “A-ha” Moment today

2007-11-05T08:49:00.000-05:00

This morning while getting Erin dressed, she asked to have her left processor put on first. “Other side! Other side!” Once I put it on, I asked if she was ready for milk and toast. I said it several times as I pinned her right side processor on. I faced her to me again and said it one last time with her watching my lips before I placed the right coil on.

She said “I hear mommy” and tapped her left cheek.

But she had a very confused and unsettled look on her face, so I quickly put her right coil on and told her “Good job!” We high fived and made a big production out of it. It was obvious that the sounds were not “normal” for her. I want to make sure that she doesn’t become afraid of the strange sounds, but she seems to be picking this up pretty quickly.

I think tonight we’ll try to leave the right side off for some of her pre-bed story time.

2007-11-03T22:22:00.001-04:00

Our mornings now consist of this:

- Toes wakes up.
- One of us goes into her room to greet her.
- She yells "HI!!!"
- We set her on the changing table, right side facing out, to put her equipment on.

- We pin the Right Side Processor to her jammies, then place the coil on her right side.
- We say "Good morning, Erin! I love you! OK, Other side"
- She says "Other side, other side, other side..." over and over as she turns around to give us easy access to her left shoulder.
- We pin the Left Side Processor to her jammies, then place the coil on her left side.
- We say "Breakfast? Milk? Cheerios?"
- She says "Milk. Cin'min Toast"

So. From Erin's viewpoint, her new implant is just the "other side".

I have to wonder if she isn't thinking "Why didn't they give me the other side before?" For her, it seems to be totally natural. Very much a "whatever" kind of thing.

We have transitioned to the 2nd and 3rd Programs on the processor and she is tolerating it all quite well. She still does not seem to understand very much while wearing just her left implant, but I know she will in time. We are not pushing too much.

We have not tried to read to her, or do any therapy activities, with just her new implant. I'd rather get a week under her belt with both implants before pushing things. As I told Dad to Toes today: This is not a race. There is nothing that says we have to rush this.

*************************************************************************

Toes had a playdate today with Zoe. Zoe is 3 and lives near us. Zoe wears hearing aids and is the most adorable, well adjusted, age appropriate little girl you could ever meet! We are fortunate to have a peer for Toes that faces so many similar struggles. And in the same school district!

I almost feel guilty, because it feels like Zoe is blazing a trail for Toes. I hope somehow we are able to give Zoe something in return.

*************************************************************************

I realized recently that I have been focusing this blog on CI viewpoints - and have mainly added blog links from other CI Kids.

But, all Hearing Impaired kids are in the same boat. Our fears and our needs are the same. Regardless of the assistance devices that our children are using, we are all facing the same struggles and triumphs.

I believe our children are the new faces of the "Deaf Culture".

The technology that is available to hearing impaired kids these days is simply amazing. Be it Hearing Aids or CIs.

I am a little annoyed with myself that I have focused this blog on CIs. I intend to redirect things now to a more unified approach.

I don't know how I can claim to want to provide unbiased information while focusing solely on the CI Option. So, I invite others with differing viewpoints to respond, either on this blog or via email. Like a famous sitcom psychologist once said....

I'm Listening.

Toes has gone Stereo!

2007-11-01T20:34:00.001-04:00

The activation went great!

It was almost like any other mapping session. Toes handled the equipment very well and the audiologist was able to get a great map. Toes was handling things so well, the audi set up her spare processor with 4 additional maps for us to use after we have gone through the maps on her "normal" processor. So, we have a total of 8 steps to get used to between today and her next mapping on November 16.

Of course, her left ear now has to learn to listen, as her right ear did. Right now, the sounds coming into that side do not make much sense to her. Tonight, Dad to Toes tried to read her bedtime stories with just the left implant and Toes acted as though she had no implant on. So, he opted to put her right implant back on.

She is obviously getting something out of her left ear, though... because she is already popping the left coil back on when it falls off. She says "Uh, oh!" and back on it goes. She is doing a much better job finding the new spot than the Parents to Toes are. ;)

I'll try to get some pictures of her with both processors and post them over the next couple days. Today was a long day.

******************************************************************************

After activation, we visited the Millridge Center. It was a really great visit! We met with the Intervention Specialist for ages 0 - 3 and took a tour of the building.

We are really glad we visited. We are still absorbing what we learned. There are so many pros and cons to trying to make a Millridge Preschool option work. And we have some other mainstream options to look into before we make a decision on what direction we'd like to go.

While I was pregnant with Toes, I never dreamed I'd be one of "those" parents stressing about pre-school when my child was this young. ;)

Halloween

2007-10-31T22:00:00.001-04:00

Trick or Treat went well! Erin had a great time getting candy from the neighbors. Our Little Red Riding Hood in the 'hood. ;)

She also enjoyed putting candy in the other kids' bags when they came by. Invariably, the parents would remind their little trick or treaters: "Say Thank you!"

And every time, Toes would say "Thank you!"

Such a goofy girl!

Even though she was full of sugar, Dad to Toes managed to get her to sit down and have some cheese and chicken sitting on the front step. (Picture above). He even got her down to bed less than 1/2 hour later than she normally goes to sleep.

Big day tomorrow!

Looking at Education Options

2007-10-30T16:49:00.001-04:00

After Toes's Activation on Thursday, we are going to head over to the Millridge Center to see what education options they are able to provide Toes.

We are less than a year away from pre-school (eek!) and we really need to start putting some thought into what services we want for Toes for the next two years, before she goes into kindergarten.

Millridge Center is 45 minutes away. And is the closest school for the deaf and hard of hearing in our area. We have not looked into their services in the past because of the distance. But, we realized that we need to look at all of our options now so that we have some idea of what is available prior to going into our IEP meeting with the school district when Toes approaches the age of 3.

I am excited about meeting with the school to see what they offer!

Great Resource for Parents New to the Journey

2007-10-29T22:54:00.000-04:00

Paula at Hearing Exchange was kind enough to share this link to a wonderful article she placed on her website to help parents in the first steps of this journey.

I referred to this article frequently in my early days and she has kept it updated with the latest information.

Check it out!

My Child Has a Hearing Loss... What Next?

There are a couple other new posts below this one. Don't miss them.

New Links

2007-10-29T21:46:00.000-04:00

I have added a ton of links to other CI Blogs over to the right side of the page. Both kid blogs and adult blogs.

Be sure to check them out!

If you don't see your blog here and would like it added, please let me know. I tried not to miss anyone, but I may have inadvertently done so.

In turn, if you see your blog here and would prefer it removed, please let me know. I didn't take the time to get permission from everyone... I hope that is OK. ;)

I also want to send an invite out to anyone who has been visiting the blog but not commenting to give us a "Hi!" Comment here, or drop me an e-mail at:

momtotoes@gmail.com

I look forward to hearing from all of our visitors. :-D

Great activation video!

2007-10-29T21:16:00.000-04:00

Be sure to check out Landon's (Buzz's) activation video from today. It is really exceptional.

We'll need to keep an eye on this one. Something tells me he is going to be a super star.

AG Bell Conference - Our First Foray into the IRL CI World

2007-10-27T21:50:00.000-04:00

Today, Dad to Toes and I attended a conference for the Ohio Chapter of the Alexander Graham Bell Association.

It was a great conference. Donald M. Goldberg was the main speaker. There was also a panel of experts to answer conference attendee questions. This included Audiologists, an ENT, SLPs and Teachers of the Deaf. It was very informative.

The conference closed with three teenagers who were all implanted at age three and younger. The kids did a great job of sharing their experiences in school with the audience. I don't know that I would have been able to sit in front of 120 people at that age and keep my cool enough to answer questions from a group of parents that were asking what probably seemed like ridiculous questions. ;)

I was pleased to finally get the chance to meet Drew's Mom and Dad. We also ran into a local family that I met prior to the implantation of their son, Thomas.

The Ohio Chapter put on an excellent conference. It was great to see familiar faces and finally introduce Dad to Toes to some of the people I have made connections with over the last year or so.

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We are glad we went. As we set off on the planning process for when Toes enters the public school system, we are finding it more and more important to talk to other familes to see how they handled the transition.

It may seem odd that this was the first "In Real Life" event that we attended that was geared toward kids with CIs and/or deaf children. Actually, it is odd. And I wouldn't recommend waiting so long.

Early in our journey, we made contact with several parents, who were well meaning, but very strong in their convictions and opinions on the path that hearing impaired children should take.

I found it rather overwhelming and somewhat off putting. Those familiar with my political leanings will be rather shocked to learn that I find strong, one sided opinions very irritating. (Well... strong, one sided opinions that are not related to one specific individual who will remain nameless, since this blog is not the place for that discussion.) I just tend to tune out any discussion that does not ackowledge the gray areas that inevitably exist.

It was important to us to do our own research and come to our own conclusions and decisions without a lot of opinions from outside sources.

I found that the more IRL people I talked to, the more I felt that people were trying to tell me the "right" thing to do. A concept I found bizarre, considering how many choices are available.

So, we opted to step out of the community to avoid the influences. And I did my own research into some of the various options:

- Audio Verbal Therapy (AVT)
- Audio Oral Therapy (A/O)
- Total Communication (TC)
- American Sign Language (ASL)

And, of course, the ever present battle between

- Hearing Aids

and

- Cochlear Implant(s)

(and, of course, the Single vs. Bilateral CI arguments)

This led us to investigate the concerns that the Deaf Culture holds towards CIs.

- We watched Sound and Fury.
- And later, Through Deaf Eyes.

And ultimately we came up with our own decisions.

First, the single CI. And a modified AVT approach.

By "modified" I mean that we do not restrict Erin's view of our mouths as we speak. We want to encourage her ability to lip read. And we are considering adding ASL classes to introduce Erin's "second" language to her now - when she is most able to absorb language.

Second, we decided to get her second implant. The reasons for this were many.

But, ultimately, we felt:

- She will gain an advantage in loud situations
- She will better localize sounds
- She will better process sounds in general.

Our hope is that with these enhanced abilities, she will do better academically and socially than she would with one implant.

We opted to do the surgery now because:

- She is young enough not to remember the surgery.
- Her auditory nerve is still intact and has not begun to atrophy.
- Because at this age, she may more quickly adapt to the new implant in regard to learning to process sound.

Today we learned another reason to add to our list... the concept of a "Dominant Ear".

We all have dominant handedness... and dominant eyes. It had never occured to us until we heard the term today that we also have dominant ears.

What if Erin's right ear is not her dominant ear?

So...

Ultimately we avoided IRL meetings because we did not want our decisions to be influenced by others.

And, in turn, I have been very cautious on this blog not to share our decisions with others in the fear that we would appear to be trying to influence others.

But, now that we are pretty well set on our path and are comfortable with it, we have decided to move forward with meeting people IRL. It went well today.

The best advice I can give parents new to this journey is to get out there and talk to a lot of people. But don't let the strong opinions you may run into keep you from trying to meet more people.

Take it all in with a grain of salt and come to your own conclusions.

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I hope to be able to provide help to others in the same situtation... without throwing out too much of the "this is the way you *have* to do it" thing.

Let me know if I am not on the right track with that goal. ;)

One Year Anniversary of Sound

2007-10-25T10:20:00.000-04:00

So, I took a look at the ticker under the title of this blog earlier and saw that it said "12 Months Since Erin's CI Was Activated"... and I thought to myself "That's right! October 25! Her Anniversary!"

Well, it must have been a brainfog moment, because her Anniversary was actually October 20. So I missed it.

Oops.

Anyway, let's celebrate a bit late.

Happy Anniversary, Toes!!!!

One year and 5 days ago, you "heard" for the first time.

In One Year you have almost caught up to your peers. Pretty impressive, considering you have only heard spoken language half as long. And every day you have a new word.

Today you said "blanket" for the first time, and formed a new sentence - "No music, Mommy!"

I can't wait to hear what you have to say tomorrow.

Can you believe it has only been a year???

Photo Sharing - Upload Video - Video Sharing - Share Photos

A Different Kind of Hero

2007-10-22T15:04:00.001-04:00

I just received an essay via e-mail that really touched my heart.

When Jenna was 8, she was asked to write an essay on a different kind of hero. She chose to write about her friend, Hallie. Jenna and Hallie are now 10.

It is obvious that Jenna and Hallie have a very special friendship... and are two very special young ladies.

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A DIFFERENT KIND OF HERO

My different kind of hero is my friend Hallie. She is my hero because she has a cochlear implant and she taught me that being different doesn't matter. Hallie has a cochlear implant because she was born deaf. She had surgery to put the implant in her ear and she has a special box that connects to her earpiece so she can hear. Hallie and I are friends because even though we are different we are alike. We both like soccer and school. We like dogs. We like to go to Build A Bear. Last year we went to Build A Bear for our birthdays. I got a monkey. I named it Hugs. Hallie got a dog and she named it Kisses. We went together because our birthdays are three days apart. That is another way we are alike. We are almost the exact same age.

Sometimes at soccer Hallie gets lost because she cannot hear well. I help her. Even when she is lost Hallie always smiles. It makes me happy that she does not get sad and that she likes for me to help her.

Hallie is not a hero like a fireman or a policeman. She is different kind of hero. She is a hero to me because she never gives up and she does not let her cochlear implant stop her from being a kid like I am. She hears differently and she speaks a little differently but she is like me. That is what Hallie taught me. I should not judge people. I should get to know them. Hallie is my different kind of hero. She is special. She is my friend.

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Here is to BFFs! :-D

A big thank you to Jenna's mom for sharing this with me.

Toes Talking

2007-10-18T13:06:00.000-04:00

Toes was chatty this AM, so I shot some video.

If you wait until the end, you can catch an "Al Gore". But it is sounding more and more like "All Gone" these days.

And yes... I know... 2 year olds should not be taking a bottle anymore. She takes one a day and we're working on getting rid of it. Same with the binky. So, no judging! ;)

Toes made four grown women cry tonight.

2007-10-16T20:54:00.001-04:00

Well, sort of.

We had our monthly visit with Erin's Regional Infant Hearing Program (RIHP) Rep. She brought along her Help Me Grow Coordinator as well as the Project Director for the RIHP Progam.

Dad to Toes wasn't home at the time and Toes wanted to call him. So, we dialed the number and put the phone on speaker. Dad to Toes answered and Toes said "Hi, Daddy!" and waved at the phone.

Daddy said "Hi Erin! I love you!"

She then pretty much clammed up, so I told her it was time to say Goodbye. She said "Bye Bye Daddy! Bye Bye Daddy!" over and over as she waved at the phone and then put the phone in the cradle to hang up.

Such a silly, simple thing any two year old would do. :-D

Any two year old.

So, we all cried.

Dad to Toes didn't have it so easy, though. He was in the car with three male co-workers. No room for getting misty in that situation. ;)

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The visit tonight was great. Toes was in rare form and showed off like crazy. Even running out after a diaper change to announce to the group "All clean!".

Toes has so many people that work with her on her language. Her teachers at daycare, her Speech Language Pathologist, who she sees once a week, her RIHP Rep, her Help Me Grow Coordinator... and so on.

They all tell me how well she is doing, but I can't help but have so many concerns that I just am not doing enough. Or that she is not developing at an acceptable pace. It is so hard to know if I am pushing too hard, or not hard enough. I know every parent worries about these things. And I am fortunate to have so many experts to offer us feedback. But the concerns are always there.

Tonight having someone who has never met her, a fresh set of expert eyes (well... ears, really) tell me that she is doing great made all the difference.

Not to minimize what credit I should give Toes's SLP, RIHP Rep, Teachers, etc. when they tell me she is on track, of course. Thanks, you guys! For helping Dad to Toes and I learn to help Toes learn to listen and so to talk. She just keeps amazing us every day.

And forgive me if in another couple weeks I am back to the "Are we doing enough?" thing. :-P

Incision

2007-10-13T22:54:00.001-04:00

I feel the need to share some pictures of Erin's incision. They are not too graphic. But, the very faint of heart may want to avoid.

Erin's surgeon is quite good at keeping the incision and hair shaving to a minimum.

OK, maybe "quite good" is a major understatement. Because I have to say, I have not seen any other CI Incision pictures that compare to Erin's.

Erin's surgeon opts to make one incision along the crease behind the ear. The incision is 2" - 2.5" long. In Erin's case, her incision is entirely hidden by the fold behind her ear, except for a small section that appears 1 cm above the crease of her ear. Still very hidden.

It just amazes me what her surgeon was able to do... yet leave such small evidence behind.

Thank you, Dr. Megerian.

Picture taken right after gauze was removed.
Picture taken after first bath post Steri Strip removal, 10 days post-op.
I have to post a correction to one of my earlier posts. Dr. M did shave a small area of Erin's scalp. You can see the area in the picture above. I didn't notice it, because it is such a small area. But, you can see the small patch of bare skin where hair should be.

I can't complain. She still has a mop head of hair even with the shaved area. Poor girl inherited my wildly wavy and unruly hair.

It is so wonderful to find that to be the worst genetic trait to date. Because Dad to Toes and I have realized that the Connexin 26 gene that "robbed" Erin of her hearing was not a bad thing. It was just a "thing". Like her funky toe nails, her steel blue eyes, her long torso and short legs.

We wouldn't change anything about our Toes. If someone offered us the chance to go back in time and change anything about her there is not a thing we would change.

Except, maybe, the stubborn "Terrible Twos" phase she is so fully immersed in. But, even that is so much fun to go through.

At least that is what I keep telling myself. ;)

Activation is scheduled

2007-10-05T12:56:00.001-04:00

Activation Day will be November 1. It seems so far away! But, time does fly these days so I am sure it will be here before we know it.

Toes is doing great. She is pretty much back to normal, other than being bored without her little friends from daycare. I am sure that come Monday she will be very excited to go back to school.

We took off her bandages on Wednesday. She looked at the pile of gauze afterward and said "Owie, all gone!" ( it still sounds a lot like "al gore"). She was very relieved! I am just impressed we made it that long without her ripping it off.

Her incision looks exactly like the first. Right in the crease behind her ear. They didn't even shave any hair. It just amazes me. She has been totally ignoring the steri-strips. So we haven't had to worry about her pulling them off.

I haven't felt around to see how well the magnet site aligns with the right side site. But, I imagine that it is right on the money.

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Using the Phone

Toes has started figuring out what a telephone does. She loves to "Call Daddy" when he is at work or out of town.

We use the speaker phone option, since her processor does not sit on her ear. Sometimes she will take the phone and put it to her ear the way she sees Mom and Dad do it. But with the speaker on, it doesn't really matter that it is nowhere near her processor.

Normally, it is tough to get much out of her once we do make the call, she usually waves at the phone or just smiles. But it is so fun to have her start to make that connection.

This morning, since I am back at work, she asked Daddy to call Mommy. So today I got my first Toes Phone Call. :D

Day Two - Bilateral

2007-10-02T20:58:00.000-04:00

Toes had a good day. Not a great day, but a good day. I was able to tell that she still has a pretty good headache. Every now and then she would point at the big ball of gauze on the side of her head and say "Owie!"

I went ahead and gave her the prescribed pain meds when I was able to. I think by tomorrow we'll be able to switch to plain Tylenol.

I think she was also bored at home. She is such an active kid! One of Grandmas to Toes came to visit and brought her a real fun puzzle that has sound effects. It kept her entertained for a little while, but it is apparent she is getting cabin fever.

The doc told us that the incision is the same length as her first, and that he was able to put the second implant in a spot that is perfectly symmetrical to her right implant. This was good news. It seems like such a minor concern, but I'd hate if her coils were on radically different areas on each side.

He also told us we could take the bandages off tonight, but we went ahead and left them on. They don't seem to be bothering her and this way we don't have to worry about her pulling at the Steri Strips that cover her incision. I will probably take them off in the morning, because I think tomorrow I will have to get her out and about.

Here is a picture from her nap today in her big girl bed. What a difference from the picture from Day Two of her last surgery, where I went into her room to find a crib full of gauze!

Sequential Bilateral Surgery

2007-10-01T20:58:00.000-04:00

Success!

Toes did amazingly well today. She was a total trooper.

Surgery seemed to take longer than the first. I actually had an anxious 1/2 hour where all sorts of thoughts ran through my mind while we were waiting for word. But all went well!

The audiologist came out to tell us that the "Impedences" (don't ask me to explain what this means) tested really well - and even at "excellent" in some ranges. She said the doctor was bragging about the results to the other doctors in the room.

Erin's auditory nerve is 100% intact. We were so right in having this done now before her nerve started to atrophy. She will get full use out of this implant.

I have to admit that overall this surgery was much more difficult than the first. For the last surgery, we were on our way home within an hour or two after we got to see her in post-op. This time, it was closer to 4 hours.

Toes woke up immediately when we got into post-op. I scooped her right up and settled into a rocking chair with her. And there I sat for 3 1/2 hours. She would wake for very brief periods, shake her head and say "No!" to offers of juice, and would dose back off.

At one point, she pointed to her Crocs and said "Shoes!". We thought it was a sign she was ready to go. But, she slept for another 1/2 hour after that.

We finally had to force the issue and laid her down to change her diaper. That woke her up enough to get some juice in her and finally a clear discharge note from the nursing staff.

When we got home, all Toes wanted to do was cuddle on the couch and watch Noggin. I think she absorbed more TV this afternoon than she cumulatively has in her entire life. . Any sudden movement elicited cries of annoyance in the Toes. It is obvious she is being hit with a monstrous headache. We both dozed in and out

Dinner was a banana, apple sauce and some mac n cheese.

We had some more play time and Toes even sat on the potty at one point. This ended with her running out into the living room sans diaper. Typical Toes.

The whole running thing proved a bit much and she was quickly ready for bed afterward.

She is still blissfully sleeping.

We got Toes's Back Up Bear. Thank goodness! Now we can swap them out and launder the little t-shirts she so loves to cling to.

We are so thrilled to have the surgery over with. And we both feel so fortunate for this gift of Our Toes. She was an angel today.

How did we get so lucky?

More tomorrow. I am wiped out tonight. :p

It is going to be a big week!

2007-09-30T20:39:00.000-04:00

Toes chose last night as the perfect time to escape from her crib.

It was unintentional. She was standing in her crib and bent over the side laughing. She managed to do a gymnastic move and somersaulted out, landing solidly, yet safely, on her bottom. She was under the care of one of her grandmothers, who was understandably quite shaken up. But Toes was fine. Toddlers are invincible that way. ;)

My hope was that this would be a one time thing and I'd still be able to stick with my plan to keep her in the crib until highschool. But she made an attempt to duplicate the event this morning so it became apparent that it was time for the toddler bed.

So, we got it all set up today and loaded it up with her stuffed animals and a brand new pillow.

Amazingly, she went down like a dream tonight and has been sleeping soundly since. I hope she is a fast learner and this is not a First Night Fluke. But, it seems like it may be perfect timing to make this transition, since we'll be home all week.

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While Dad to Toes was putting together Toes's toddler bed, I ran the vacuum in her room. This is something I normally do while she is napping. (Ah, the wonder of being able to run a vacuum within inches of your napping child and not wake her :)

She was rather annoyed to see this contraption in her room and even more annoyed to hear it start up.

I quickly vacuumed, then turned to see how she was holding up.

I found her standing there, with her hand on her processor, blocking the microphones.

The CI User's equivalent of plugging her ears! How amazing is that????

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We are all set for tomorrow. I am honestly trying not to think too much about it. For some reason it is harder this time, since she is older and will be so much more aware of everything.

But, that also gives me comfort. Because waiting another year or more would only intensify that awareness.

This is the right time to do this. And Toes is going to LOVE bilateral hearing.

I'll post an update tomorrow when we get home.

Thanks to everyone for your prayers and well wishes!

Surgery Time is 7:15 AM

2007-09-29T11:05:00.000-04:00

Surgery is all set for 7:15 AM! We got the first slot.

We may be home by naptime!

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One of the Granpas to Toes stopped by for a visit this morning. When she saw him coming up the driveway she yelled " 'andpa!!!!" clear as a bell.

It was the first time he got to hear her say his name. Do you think maybe she made his day? ;-)

We're almost there!

2007-09-26T11:39:00.001-04:00

I was just looking over my last two posts and realized I have come across as incredibly depressed.

That is *really* not the case.

While I am a little concerned about the surgery, I am mostly quite calm. Thinking back to how I felt before her first surgery I am a calm as a cucumber now.

I am looking forward to her activation and am so excited to see how she reacts to being able to hear so much more. She loves to hear so much.

I have to wonder if she won't be looking at us on activation day as though she is asking "Now, why didn't you put this ear on before???" Because I am sure she will be thinking we were just holding out on her. ;-)

Maybe to some degree, we were. :-p

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So, yesterday was the 1 year anniversary of Erin's first surgery. A year! It still feels like yesterday in so many ways. Yet, I can't recall with any clarity her life before she had her CI.

It amazes me how far the CI World has come in the last year. When she was implanted, bilateral Implants were still fairly uncommon in general and downright rare in infants.

Now it is almost the norm!

There is now so much more data to support the value of bilateral implants. I really have to thank the parents before me who have tested the bilateral waters and provided that data to the medical world.

And we're on our way!

A week away!

2007-09-23T20:57:00.000-04:00

How did this happen??? A week away!

Eek!

I think maybe reality hasn't set in yet.

Dad to Toes said he is even more sure about this surgery than the first, so he is doing just fine.

Funny how that works. I was SO sure about the first surgery, and he was nervous and uncertain. Now he is so sure and I am nervous.

I know this is the right thing to do. But I can't help but worry. It *is* surgery, after all. No matter how minor.

I have had so many people tell me that the timing on this is perfect because she won't even remember the surgery. She'll grow up knowing that we did this for her now so that she would never have to deal with the anticipation that older kids have to go through pre-surgery.

That does bring comfort. So, I will focus on that.

Towards the end of this week, we'll start talking to Erin about what is going to happen. We aren't sure how much she will understand. But, I want her to at least be prepared that we're going to be heading into a week that won't follow our normal schedule. I imagine she'll give me a "Yeah, Mommy. Whatever." look and go about her business.

That's our Toes.

Some Hard Aspects of Being the Parent of a CI Kid

2007-09-18T16:26:00.000-04:00

I read recently a comment from someone who feels that CI blogs put out by parents don’t come across as believable because we tend to only post the positive aspects of what we are experiencing.

This is largely true.

I have chosen not to post about the times I worry we aren’t doing enough. The times I feel inadequate because we are not fully immersed in AVT, as many families are.

On the opposite end of the spectrum, I also feel inadequate because we have opted to hold off on ASL for now to focus on oral language.

I still get bogged down worrying about the “what is to come” in this journey.

I still question every decision at times.

I feel isolated every time a friend with a child of similar age talks about a communication milestone, or even something as simple as the ability to use Time Outs. Because Toes doesn’t have enough receptive language to begin to understand the concept of Time Outs.

I don’t share when I feel the frustration of trying to explain to people that, while this CI is a miracle and a blessing, it did not “cure” her any more than a prosthetic leg “cures” an amputee.

It has made her life immeasurably better and opened doors that would have been difficult to open at best – and impossible to open at worst. But there will always be a level of impairment. It is so maddening trying to get that point across to someone without sounding like I am whining. Or looking for attention.

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Why have I chosen not to post these things before? Because they are not significant to her story. These are my stories, not Erin’s. My “bad days” right now are mine. Down the road I am sure there will be bad days in Erin’s life and I will share what seems pertinent to this journey she is on.

But right now, from what limited perspective I have of her point of view, it seems to be all good.

So, I’m sticking with it.

Priceless

2007-09-14T22:31:00.000-04:00

Cochlear Implant: $75,000
Speech therapy: $100/session
Batteries: $8/package

Hearing your deaf child's voice...... Priceless

From CI Circle

Marny from CI Circle posted this recently. She said she can't be sure she didn't read it elsewhere originally, but it so perfectly describes our journey.

We have official approval for the Sequential Bilateral Surgery

2007-09-10T20:08:00.001-04:00

The letter was waiting for me when I got home from work.

United Healthcare has offically approved Erin's surgery.

It was almost too easy. ;-)

It looks like Erin's CI Center knows how to get their point across. Great job!!!

Phew. Now I can start officially counting the days.

Bilateral Approval? Maybe?

2007-09-10T14:47:00.000-04:00

So, I *think* we have insurance approval.

I just spoke to a rep at United Healthcare who told me:

“A letter was sent out on September 4th, stating that Cochlear Implants are allowable provided they are not specifically excluded from your plan.”

Huh?

So, I asked, politely: “*Are* Cochlear Implants excluded from our plan?”

She spent a little time reading, then said:

“Hearing Aids are excluded from your plan. But Cochlear Implants are not. So, this would be an allowable benefit.”

The “would be” concerned me a bit, so I asked for clarification.

She said she does not have access to the actual text of the letter, but assured me the letter should make it pretty clear that the surgery has been approved.

We went from "would be" to "should". That made me feel better. ;-)

Plus, I am confused that she didn't seem to have information regarding the fact that this was a sequential bilateral implant.

She was very nice, though.

I hope to see the letter in the next day or so. I certainly hope the letter is clearer than my conversation of today. haha!

Air Show

2007-09-05T20:21:00.000-04:00

Over the Labor Day Weekend, we took Toes to the Air Show.

Toes loves airplanes. We live relatively close to an airport, so Toes is able to see planes fly above her fairly closely on a regular basis. But never this close.

Before we went, people kept telling us to be careful because the noise usually disturbs young children. I just smiled and reminded them that the noise probably would not bother Toes.

As a precaution, we planned to turn her processor off when loud planes came near. I was interested in seeing how she would react to hearing ambient sound naturally. Since she does hear at a 90 db level on the non-implanted side, I was hopeful she would hear the planes on her left side.

So, when the announcer informed the audience that the Air Force Thunderbirds were staging nearby and would be flying overhead any minute, we got ready and turned off her processor.

The crowd starting pointing, then we heard the beginnings of the roar...

Toes was mesmerized!

She was so excited to see the planes so close... and even more excited to feel/hear the sound as they rushed overhead. She tapped her ear in her typical "I heard it!!" way.

But this time it was her left ear. Not the implanted ear.

She immediately asked us to turn her processor back on. So, we obliged, turning her down to a softer program that included an auto-sensitivity setting to shut down extremely loud noises.

We quickly discovered that the softer program wasn't necessary.

The next time the planes started coming by, she pulled her coil off her head, squealed with joy, then popped it back on in time to hear the sound fade off in the distance.

It is so amazing that she has already realized that she has control over what she hears and does not hear. She is only 2! I can't be sure if she pulled the coil off to keep from being blasted in her right ear, or if she pulled it off so she could experience the ambient sound in her left ear. But it just made me so happy to see her take charge of her surroundings that way.

She was sure to let us know when they started coming around again. Generally, she heard them before we did:

It was so much fun to watch how she reacted. All the other children in the area were covering their ears and cowering near their parents. Toes just kept pointing and squealing with joy.

Something tells me the Continental 747s flying overhead in the backyard just aren't going to mean the same ever again. ;)

I have to admit that I have some remorse that it will likely be the last time she hears natural sound. Once her second surgery is complete she will likely lose what little bit of hearing she does have in her left ear.

I know the benefits far outweigh the one negative that she will never again hear the sound of Thunderbirds roaring overhead. But it still makes me a little sad.

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Still no news on the insurance front. Toes's audiologist called today to go over the equipment list so she could get everything ordered. We are all set... except for that dreaded insurance approval. *sigh*

Still, we wait.

2007-08-28T14:44:00.001-04:00

No news yet on the Insurance Approval. I spent another hour being bounced around today only to be told it is in review. This is at least a step in the right direction... given that last week they could identify that the request was submitted, but they could not see if it was in review.

So, we wait.

Toes's language skills are improving more and more every day. She has quite a few new words each week and some surprise us.

When playing a game with Dad to Toes last night, Toes yelled "Again!" when she wanted to play the game again. :-D It just amazes us when she throws out a word that we haven't been drilling into her.

Of course, her diction still needs some work. But that is not our utmost concern right now. We want to build the vocabulary, then we'll work on how well she is forming the words.

My personal favorite right now is hearing her say "All Gone!"

Because I realized recently that it sounds much more like Al Gore!"

Apparently, she would like to see a change.

Thoughts and Prayers - Again

2007-08-22T13:18:00.000-04:00

A dear friend found out last week that her son has Stage 4 Neuroblastoma – a form of cancer. He is considered high risk and just finished round 1 of chemotherapy last night.

This is a very special family. I cannot think of anyone that deserves this nightmare less than my friend and her husband.

Please keep them in your thoughts and prayers as they face this trial.

Ben's Story

Insurance Approval Process Update

2007-08-08T21:23:00.000-04:00

The surgeon's secretary called this morning to confirm that the paperwork was sent to UHC for approval today.

She feels confident that we will have approval before October 1. She processes 5 - 10 of these a week. So I am feeling confident right now that October 1 is the date.

:D

She suggested I wait two weeks before calling UHC to check the status. So, two weeks from today I will call. She told me that she thinks we will see approval by three weeks.

I am cautiously optimistic.

We're on our way!

Insurance and waiting

2007-08-08T08:42:00.000-04:00

I called the surgeon's secretary yesterday to find out the status of our insurance claim and discovered the claim has not yet been sent to the insurance company.

*sigh*

So... we wait. Again.

I was assured that everything would be sent over today and that she would call me to confirm that it was sent. I will call again this afternoon if I don't hear anything.

The audiologist told us that United Healthcare does approve sequential bilaterals. They just like to take their sweet time doing it. Generally, they take a full 90 days to process approvals.

So, I am only cautiously counting on the October 1 surgery date at this point.

I don't feel as concerned as with Erin's first about getting this one ASAP. We have the time. But it is frustrating to have to wait while the insurance company basically lets the file ride because they "can".

Just how much power can we continue to let these companies have over our lives?

But that is a topic for another day... and probably another blog. ;)

Ow-Sigh and All The Wonders

2007-08-03T10:16:00.001-04:00

Toes loves being outside. We spend a fair amount of time outside, particularly on the weekends. We play in the sandbox, slide on the slide, push her toys around the yard, chase the ball, or just run around.

As part of AVT “Learning to Listen” concepts, Erin has been conditioned to “listen” when we tap our ear and say “Do you *hear* that? *I* hear that!”

In the beginning, she tapped her ear when she would hear something unusual. But more recently, tapping her ear means that her implant isn't functioning properly. She taps her ear to let us know she doesn’t hear anything and needs us to investigate the reason.

Sometimes when we are outside, she will start frantically tapping her ear. I look and look, trying to see if her implant is working. I check the processor for an error code and when I find none I look at her perplexed as she continues frantically tapping her ear.

Then it will hit me: There is a symphony of crickets or birds or whatever going on that I have totally missed.

And she is telling me she hears it.

:D

Apparently, she is trying to tell me that *I* need to “Learn to Listen” just a little bit more.

We have a surgery date.

2007-07-31T21:05:00.000-04:00

October 1, 2007.

We got the first surgery slot, so we won't have another 3 hour wait in pre-op like last time. Thank goodness!

We are still waiting for insurance approval, but I am confident it will go smoothly. Tomorrow I'll start my weekly calls to the insurance company and to the surgeon's secretary to check on the status.

I am nervous now. This surgery seems so much more "elective" than the first one. Is this the right thing to do?

Ugh.

This parenting thing never gets easier, does it?

Pictures

2007-07-28T10:17:00.000-04:00

Lately, I have become a tad paranoid about having Toes's pictures so prominently and openly displayed on the internet.

Last night, after laying sleepless for an hour stewing over it, I decided to get up and remove the pictures from the first few pages. It seemed like the only way I would get any sleep.

I am going back and forth on whether I want to put them back. I miss them. The blog seems empty and characterless without them.

So, I posted a poll. Share your thoughts in Comments.

What would you do? How do you feel about the blog without them? What are your thoughts on the safety of the internet in regard to posting pictures of children?

Audiological Evaluation

2007-07-27T14:53:00.000-04:00

On June 26, we had Toes’s Audiological Evaluation. The purpose of this eval was to provide the CI Team with the data needed to put together the insurance justification for her Sequential Bilateral Implant Surgery.

It is such a grueling process with a two year old! It takes a lot of effort to keep her attention focused enough for the audiologist to read her cues. It took about 45 minutes to run the tests that had to be run. Dad to Toes and her original audiologist both ended up in the booth with Toes, trying to tag team keeping her attention on the tests so the CI Audiologist could perform the testing.

First, she tested her hearing with her implant on. She clearly tested down to 20 db, with some evidence that she is hearing at an even lower level. Yay, Toes!

Then, her hearing was tested on the left side, with no implant. As expected, she is testing at 90 – 100 db in her left ear. Which is on the “Profound” side of a “Severe to Profound” hearing loss.

Her hearing on the right side was tested without her processor on to see what, if any, residual hearing is left. She tested at 115 db on her right side, which is a level that could indicate she is actually picking up vibration… not sound. This indicates that she did lose her residual hearing due to the implant surgery. Even though this is typical and totally expected, I couldn’t help but be a little sad that she had lost the 15 – 25 db post implant.

Next, we pulled out her hearing aid to test her left ear aided. With her hearing aid in, she tested at 40 – 60 db for most speech tones. Still well outside of the range needed to develop language. It was clear that a second implant is warranted.

By this point in the process, Toes was “all done!” with her testing. It was so sweet to look in the sound booth and see her frantically signing “all done” to Dad to Toes and her first audi. She was covered in chocolate from the incentives that are given to reward her for reacting to the tones. I wish I had brought the camera to document the visit.

Whoever said M&Ms “Melt in your mouth, not in your hands” never met Our Toes. :-P

They had wanted to get one final test completed, an OAE. But given Toes’s state of mind we opted to skip it. The audi said she had more than enough data to write her report for insurance approval.

We received a copy of the report and her “Speech Banana” this past week. I will scan and post the graph next week. Like most Parents of a CI Kid, that bananagram is burned in my brain and probably will be the rest of my life. It is almost like a fingerprint. It is Uniquely Toes.

Next step is a visit to the Surgical ENT to finalize things and hopefully get a surgery date. That appointment is July 31. We think the surgery date will likely be in September or October. We want to allow plenty of time for this to go through the insurance process, so that we don’t end up with a heartbreaking last minute approval like last time.

We do not expect too much trouble from our insurance company on the approval. But, we have heard they do like to drag the approval process out as long as 90 days. We are prepared to wait!

Milestones

2007-07-27T14:23:00.002-04:00

I haven’t updated for awhile because things have sort of become pretty routine lately. I recently realized that I still need to be celebrating all of these small milestones in Toes’s hearing development! So, here we go…

Toes is starting to really appreciate music. I keep a Laurie Berkner CD in one of the slots in my car stereo. When she wants to hear the CD, she says “ick!” and taps on her ear.

I have developed hand gestures to some of the songs that I can perform while driving one handed. (Shh! Don’t tell my high school driving instructor!) We have been doing this for about a week, and already Toes anticipates the upcoming gestures and performs them based on the cues in the music. I don’t even need to demonstrate them anymore. Our little Rock Star!

She still does not speak any words 100% clearly. Even her favorites are a tad off.

For example…

Airplane = Ahh-peen
Outside = Ow-sigh
Applesauce = Appuh-sss
All gone = Ah guh
All done = Ah duh

Her therapist said our main focus right now is on developing language, not perfect forms of the words. So we are working on getting her to use two and three words sentences, and to get those hard consonants out at the beginnings of words.

I think “buh-buh-buh-buh-ubbles” will start being used pretty frequently around the house. ;-)

I’ll update about the status of her Sequential Bilateral surgery in a separate post.

Moved and Amazed

2007-07-25T20:59:00.000-04:00

Like many moms out in Blog Land, I have begun checking RachD's blog for Hannah and Lily several times a day.

I am so moved by the comments by other people. And amazed at the number of brand new blogs I have seen created by those inspired by Rachael and Hannah.

Rach's sister, Jess, first inspired me to start a blog to document Erin's CI Journey. So I can relate to the contagious effects of a good blog. But the reaction to this blog seems unprecedented

I can spend hours just looking at the blogs of all the people who have commented on the blog. It is such a wonderful and endless web! All built on people who have been touched by Hannah's life and Rachael's depiction of it.

If you haven't been to Rachael's blog yet, I encourage you to visit and take a look around. I am sure you will be moved as well.

Thoughts and Prayers for an Internet Friend

2007-07-20T13:09:00.000-04:00

Flowers for Hannah

I made a new internet friend last month when RachD commented on "The Bear" post.

She is the sister of a friend (Jess) from an internet mothers' group I once belonged to.

Since she commented, I have been checking her blog periodically to read about her beautiful daughters. Particularly her daughter, Hannah, who really stole my heart.

I found out that Rachael and her family lost beautiful Hannah yesterday in a tragic drowning accident. I haven't been able to think of anything else since.

The outpouring on both her blog and on Jess's has been so touching. It is obvious this family has touched many both "In Real Life" and on the internet.

Please keep the family in your thoughts as they try to come to terms with one of the most horrific events imagineable.

http://hannahandlily.blogspot.com/

A Small Reward

2007-07-15T22:14:00.000-04:00

One of the words Toes has been working on in therapy since the very beginning is the word "Bubbles". This goes back to her Hearing Aid days. Yet, stubborn as she is, she has never rewarded us with the word.

Even though her list of words is probably near 100 at this point, "bubbles" was one she refused to use.

This weekend we had a birthday party for her and she received a Bubble Mower from her Grandpa. It was a hit.

And... for the first time in over a year of trying, we have the word "Bubbles!"

It is not a perfect form of the word. Toes seems to drop hard consonant sounds off the beginning of her words. But we are working on it. She definitely prefers words that start with soft sounds.

She has "outside" and "airplane" down pat. ;)

For now, I'll take "ubbles". It melted the hearts of all of us.