Eleanor has been scheduled for her implants. This was a big milestone for us. It took a lot of work from all of us to get to this point. We’re very excited to have a date to look forward to on the calendar. Now our lives revolve around the date, July 31st. And then, if recovery goes well, a week later they’ll turn her on! It’s insane to think that in two months time, our daughter will finally hear our voices.
Warm weather and sunshine! Yippee! My favorite time of the year is here and Eleanor is loving it as well. Laura bought a sandbox with the intention of filling it with sand. We have yet to find a good place for it, but it works great as a pool! Eleanor is enjoying splashing around in her water table, too. She’s always been happy in the water and loves bath time. She’s gotten to where we’ll do the sign for bath and she’ll run for the stairs, ready to get in the water! You can see from some of the pictures that I let the yard get away from me, but it’s back under control.
We had our last round of hearing tests last week. They did a conscious ABR where they hooked electrodes to her head and we sat quietly and played while they played a “bop bop” sound over and over for 45 minutes. It was intended to invoke a response in her frontal cortex, but as we’ve come to expect, they got nothing. We decided to go with the Med El device and let Callier and the surgeon know. The implant is smaller, as is the processor unit. We liked the available features and Med El seems to be ahead of the curve technologically. We had a hard time getting anyone at Callier to recommend one or the other, but our surgeon stepped up to the plate and said that if he were to get one today, he’d get Med El for the same reasons as we liked them. He said he implanted the CA devices more often, but the Med El just had more going for them. He’s a really nice guy and answered our questions readily. He’s done nearly 1000 implants in the 20 years he’s been doing it.
Laura called to see how insurance was coming. Evidently our insurance is bad about dragging their feet, so someone at the surgeon’s office is trying to light a fire under them. It’s been about 3 weeks and no word on a surgery date yet. We’re still thinking early August. The hearing aids haven’t been working, but we’ve had her wear them to get used to having something around her ears. They were on loan from the manufacturer (Thank you!), so we have to give them back next week. I’m sure she’ll be happy to see them go.
So, for the next few months, it’s shorts, t-shirts, swimsuits, water, and outside play (as long as her allergies don’t flare up again). She’s walking much better, signing like a champ, and is just fully of energy. She’s such a happy little girl and we’re so thankful for her.
I’ve been digging around a little (thank heavens for Google!) for information about Cochlear Implants as well as Med El and Cochlear Americas (aka Cochlear Ltd.), our two choices for the Cochlear Implant (CI). So far, I’ve been concentrating on Med El, since that’s the one we are leaning towards.
The Opus-2 was just approved by the FDA in April. It’s compact and fairly resilient, from the demo unit we’ve seen. It also doesn’t have any external controls. You use the remote to change programs, volume, etc. Good for children and for adjusting things easily without having to remove the processor. The actual implant is also thinner than the Cochlear Americas implant that we saw and only uses a single wire with the ground built into the receiver coil, whereas the CA one has the electrode wire and a separate ground wire. We were told that we will probably get the Opus-1 and a spot on the waiting list and a voucher for an Opus-2 upgrade when they’re available. Here are other Opus-2 wearable options.
Here’s the FDA info for the Cochlear Americas Nucleus Freedom. The Nucleus was bulkier, but seemed a little more resilient. Plus, it is water resistant (small splashes and sweat) and has a rechargeable battery pack already available. The Opus-2’s rechargeable pack isn’t out yet. They also had a few different clips and configurations. I doubt we’ll have to worry much about moisture, but durability is pretty important (especially at 18 months old, and especially at $8k-a-pop!). Another upside to CA is that they have been an established company for longer than Med El (first trial in 1982, commercially in 1985 vs. 1989/1994 for Med El…that info is a bit outdated, though). They also have more implantees, from what I hear. Here are a few other Nucleus Freedom wearable options. It looks like CA also has more options for their processor and you can buy things like batteries, coils, and accessories online (I wonder if we could get a discount through Drs, though?).
I came across this demo page. The 8-channel demo gives a good idea of what speech may sound like through the implant. The demos look like they are from 1997-1999, so it is extremely likely that modern implants sound much better, seeing as how they were released within the past few years and technology has advanced significantly since then (I bought a top-of-the-line 350MHz desktop computer around 1998, current desktops are up to 3+GHz, and current thin notebooks are over 2.6GHz).
I also came across this weblog of a young lady who had a CI done a little while back. I haven’t read through it all, but it looks interesting and has a few pictures (for us visual people).
The play day I mentioned was part of the HearSay group of the Dallas Cochlear Implant Program. I am still very impressed with that little 6-year-old’s abilities.
Please leave comments with more resources and/or opinions. This process isn’t quite like buying a car, TV, or cell phone, so the more information we have, the better.
The play day yesterday was very fun for Eleanor and ourselves. We met several families that have worked through Callier. Everyone had lots of information and experiences to share. I was amazed at how well the implants worked on these children. One girl’s mother called her from across the park and she came over to meet us. Her mother said she had profound hearing loss, like Eleanor, and was implanted in one ear at 12 months and a day, then the other at 2 years old. She’s now 6, in kindergarten, and you could not tell that she had any hearing problems. She spoke clearly, and her mom said she was even in the choir and wanting to take piano lessons! She’s using the Med-El implants, which is one of our choices, too. She let us look at the implant and the implant scar, which was nearly invisible along her hairline behind her ears. Shortly after we arrived, Eleanor walked over to the playground and I saw one of her therapists. We spoke for a bit, met her husband and children, then met two of the ladies who work for Callier that we’ll be meeting with tomorrow. The atmosphere was very relaxed and fun and helped to ease a few of my worries, especially seeing and talking with the 6-year-old. Things are looking like we’ll get the implants around the first couple of weeks in August, or maybe even late July (after our family reunion) if all goes well.
I uploaded a few new pictures from around the house and our trip to the park yesterday. Eleanor really enjoyed the hula hoop, the slide, and the balls. Laura showed off her hula skills, too.
Eleanor is doing so well at school and with her therapists. She enjoys playing with the other children in her classroom and loves her teachers. She gets to play outside every day. They work with her on her signing during lessons and the school has also hired a sign language instructor for all classes. This month Eleanor’s class is learning about the beach. The following are signs that she will be using at school this month during lessons: fish, water, smile, beach, sand, sun, & bucket. We already know fish and have been working on water recently, so this should be a good use of those signs. We are going to a playgroup tomorrow for other deaf children, so that should be lots of fun. On Tuesday Eleanor has Dr’s appts all day and will finally get the sign off for her implants. Then it’s only a matter of scheduling a consultation with the surgeon and getting insurance to sign off! More to come…
My parents sent a few pictures they had taken at Easter this year, so I finally got around to uploading them. She was a wiz at finding eggs and figured out that you put them in the basket. One of the plastic eggs had an orange Tootsie Roll inside. She enjoyed gnawing on it, despite Laura’s huffing and puffing.
You can see her hearing aids in a few of these pictures. They bit the dust soon after. She tugs at them and pulls them out and the ear molds could take the beating. The hardware is fine, though (thank goodness, since they’re loaners from the manufacturer). We should get the new molds in next week when we go for the first implant evaluation. She’ll continue to wear the aids until we get the implant. They don’t “aid” much, but if she gets even a little stimulation out of them, it’s better than nothing. Plus, having the things in and around her ear will get her used to the feeling so that the implant hardware won’t bother her.
I uploaded a few pictures from March and April.
Eleanor is doing very well in her new school. We’re amazed at how much more she’s learning with the added socialization and interaction. She will now stand up on her own after falling down and is even starting to run! It’s a challenge to keep her off the tiled kitchen floor, though. It’d be a shame to lose those front teeth to a face-plant! She’s also eating more grown-up food, although we still feed her some baby food now and then. She especially likes cinnamon toast, chow mein, spaghetti, pizza crust, green beans, and corn. Her nose is less orange now that she’s eating less carrot-based things 
With the warmer weather, we’ve been going outside a bit more. Eleanor loves to run around in the grass. We bought her a little watering can to help me water the herbs that I’m growing, but she’s more interested in dipping her hand in the water. Soon enough, she’ll be able to don a swimsuit and play with her water table and swimming pool.
So, Eleanor started at a new school on Tuesday. As this is her first real taste of socialization, it has been a bit of a rough go, but she’s settling in to a routine and should be used to it within the next week or so. It will be good for her to be around her peers so that she can learn from them. Already the teachers are telling us that she walks all around the classroom with the other children, which is a big difference, as most of the time at home she will just crawl or hold on to things to walk around them.
Eleanor also went to Callier for a meeting with her Audiologist on Monday. She is wrapping up the hearing aid assessment program in the next month and then at the end of April and beginning of May she will complete the cochlear implant evaluation program and they will give us the final determination on her candidacy for implants. They told me to go ahead and make an appointment with the surgeon so that she can see him right after this assessment. If everything goes well, she could have her implants by the end of the summer! (fingers crossed)
I’ve uploaded a few pictures we took in the last month or so. They include some from the snow we had this morning. At first, she was curious, but once she stuck her hand in, she wanted nothing to do with it.
Eleanor is walking more and more. She’ll pull herself up on something, walk around it, then let go and walk over to something else. She’s definitely getting more confident.
Her signing is coming right along, too. Laura took her to the zoo this weekend and realized that we know most of the signs for the animals: lion, tiger, bear, elephant, monkey, snake, and bird. The birds were her favorite. There was one that she really liked and kept looking for it. We got a family pass, so we’ll have to go back more and bring grandparents.
She’s leaving her hearing aids alone as long as she’s busy playing. They aren’t working very well at all, but they’re training her for wearing the cochlear implant’s speech processor unit. We’re on the road for that as well. Laura spoke with one of the implant team at the last hearing aid checkup and we got some information about two different manufacturers. Everything is looking good so far.
I switched web hosts the other day, so it took a while for everything to get moved over. Everything should be back up and running. Let me know if things look weird.
There’s not much news to report. We’ve been meeting with the communication skills teacher, Bunny, after work on Mondays. We play with a few different toys and get a few new signs to work on. Laura’s supposed to be putting some things together for us to share with everyone. I’ve also been meeting with the speech therapist, Kristin, at the nanny’s during my lunch hour once a week. Eleanor is a little sponge. She’s always taking everything in. Every once in a while, she’ll try to sign something on her own, but she’s pretty good at just mimicking us. Repetition is key.
She’s learned how to deftly remove her hearing aids. She can literally have them out before you can blink. If you keep her busy and distracted, she doesn’t mind them too much, though. We finally put the tether on them so that we can keep them clipped to her in case she tries to pull them out and fling them. I sure wouldn’t want to have to replace them, since they’re on loan from the manufacturer. Those little things must be made of gold inside because they aren’t cheap.
Next week, Laura’s going in to file for social security benefits. If she qualifies, we’ll be able to use them to cover medical expenses, childcare, and start saving for college. After seeing what I paid to social security last year and hearing rumors that I may not be able to take advantage of it when I’m older, you better believe we’re going to take every advantage of it now! We’ve also got a series of shots next week. She’s been on Zyrtec for a couple of weeks and it’s really been helping her allergies. She’s had a runny nose and a slight cough this week, but her eyes aren’t watery, red, and puffy and she’s not sneezing up a storm. We know she’s allergic to cats (as am I), but there’s also some airborne stuff that gets her. It seems like whenever we get a nice, warm, sunny day, then it gets cold and damp (as is often the case in Texas), they fire up again and we start going through the tissues. She’s definitely a trooper, though.
