Loving Lily

Lily's Brother and a New Blog Address

2010-10-21T20:27:00.000-07:00

Lily's baby brother, Alexander was born almost 8 weeks ago so I've been a little busy and my blog has suffered. Lily's hearing loss is caused by a mutation in the Connexin 26 gene which gives us a 25% chance of having a child with hearing loss with each pregnancy. We knew this before we became pregnant with our second baby. I really thought during the whole pregnancy and even when he was born that Alexander could hear. However, he did not pass the newborn hearing screen in the hospital and the follow up ABR confirmed that he too has hearing loss. Alexander's loss isn't as severe as Lily's at this time. He responded to 50 dB whereas Lily responded to 95 dB. This means that Alexander's hearing loss is moderate. He can hear that we are talking to him, but our speech isn't clear. It has been described to me like this: if you were to lose part of your hearing today and you had a 50 dB loss, you would hear that someone is talking to you but you wouldn't be able to make out what they were saying. So right now he only needs hearing aids which he will get next week. However, there is a 30-40% chance that his hearing loss is progressive and he will lose it completely over time. To quote a line from Grey's Anatomy, "biology sucks." I love my babies just the way they are, but I feel like "here we go again." As I've shared with many people, most days I don't even think about Lily's hearing loss anymore. She is hearing and speaking so well. I felt like we were just cruising with most of the hard work behind us. Now we are back at the beginning with Alexander. I know we'll get through this again and that we just have to play the hand we are dealt. Right now I'm thankful for the hearing that he does have. I'm sure Alexander and Lily will be very close because of their shared disability.

So since I will now be writing about the hearing journeys of both my babies I needed a new blog name. The new blog is "That's Just the Way We Hear" and the new URL is www.thewaywehear.blogspot.com. I will no longer be posting to lovingsweetlily.blogsot.com. So update the new address for those of you who follow and join us on this new journey to hearing.

I'll leave you with what is NOW a funny story (not so much when it happened). We all have our stories of where we've found our kids' CIs. A few nights ago Lily and I were downstairs doing laundry. She was out of my sight for a while and when she returned she handed me a clump of dirty cat litter. Gross, right? It gets better. I scold her and tell her it's dirty, etc. She walks away and returns holding her hand out with one of her processors in it saying, "Uh oh mommy, my ear." I take the processor only to find that it is CAKED in cat litter. Apparently she had taken the processor off and covered it with cat litter much like a young child would cover a TOY with SAND. Oh my! I'm going to have to keep a closer eye on her. :)

This post will be repeated on the new blog at www.thewaywehear.blogspot.com

Wearing CI Processors with Wig Tape

2010-09-12T15:39:00.001-07:00

We got the new compact rechargeable batteries for Lily's CI processors so we thought we'd try having her wear them with wig tape instead of always having her wear the headbands (which we still love). The wig tape worked beautifully and stayed on all day. We ran into a problem when it was time to take them off. The tape stuck to her little baby hairs and pulled them out when I took the processor off of her ear. She screamed and cried and hated it. This makes me not want to utilize this option. For those of you who use the wig tape on your toddlers, how do you keep from ripping their hair out?

Here's Lily wearing the processors with the wig tape...no headband.

Lily's First Hearing Birthday

2010-09-02T10:51:00.001-07:00

We celebrated Lily's first hearing birthday on Tuesday. It's hard to believe that Lily heard our voices for the first time one year ago. Time flies. We are so proud of the progress Lily has made over the last year. Our deaf baby girl can hear and speak...we are so blessed! Enjoy the video.

When Lily Realizes She's Different

2010-05-15T07:01:00.000-07:00

It's funny how many days I don't really think about the fact that Lily is deaf that much anymore. Obviously I think about it every morning when I put her CIs on and each evening when I take them off for bath and bed. However, most of everyday she is wearing her CIs and with them on she seems to be hearing and speaking as well as, or better, than other hearing children her age. So it can be easy to forget that she has a disability.

In the past few weeks though, I've been thinking a lot about Lily being deaf. First I read this blog post about a little girl wishing she weren't deaf and it made my heart ache. What will I say when/if Lily tells me she wishes she weren't deaf?

Then yesterday I had an experience with a child who has a different disability, but it made me think of Lily immediately. A little girl in a wheelchair was crying because she couldn't get in one of those big blow-up bouncy obstacle course things. Through her tears, she was telling her dad that she wished her legs were as strong as all the other kids' so she could play with them. It made me think of a time in the future when Lily might wish her ears worked like all the other kids she will know. Will she wish she could hear while going down the plastic slide on the playground? She has to take her CIs off to go down plastic slides because the static electricity could scramble her programs. Will she wish she could hear in the swimming pool and in the bathtub? At slumber parties will she be afraid she'll miss something if she takes off her CIs to go to sleep?

And then today I read this blog post that directed me to a video of some teen CI users. The teens in the video are advocating for themselves and telling the world how they hear. It touched me. I hope that Lily will have as good an attitude about her hearing loss as the teenagers in this video. You should watch it.

Surprise!

2010-03-22T14:35:00.001-07:00

Lily is going to be a big sister in September. Everyone was surprised when we found out. Look at the shock on Lily's face! :) We'll find out next week if the new baby is a boy or a girl.

Soundbooth Check

2010-02-27T08:59:00.000-08:00

A few weeks ago Lily went for a soundbooth check at 6 months post activation. She responded to speech at 20 dB in her left ear and 15 dB in her right ear. She seems to be doing great. Her newest word is "ball." Cochlear implants are truly a miracle.

Here are some pictures of Lily and mommy and Lily and grandmommy with the snow princess Lily's daddy and our friend, Jason built.

The School Baby

2010-02-27T08:52:00.000-08:00

Cute story. . .Lily is with me at the elementary school where I teach quite a bit. Therefore, many of the kindergarteners, first graders, and second graders see her often. A few days ago someone asked who the baby was. One of the second graders responded, "Oh that's Lily, the school baby." My sweet Lily, you are loved by many.

Lily's New Words

2010-02-04T16:33:00.001-08:00

Lily keeps adding new words to her list of spoken vocabulary. Of course the words aren't perfect...probably only those close to her would understand, but she is definitely talking to us. Her new words are baby, thank you, belly, eye, book, duck, kitty cat. Yay Lily!

Lily is Talking

2010-01-12T16:27:00.000-08:00

I can't believe my deaf baby girl is actually talking. Four months after her CI activation, Lily is saying 4 words pretty clearly. She can say meow, more, moo, and ho ho ho. She approximates several other words as well. When we ask her what the bunny does, she says "h h h" for hop hop hop; she says "uh uh uh" for up up up when she wants out of her car seat or out of her highchair or she wants me to pick her up.

Her receptive language is growing also. I think she understands a lot more than we give her credit for (I think hearing babies do too). We know that she understands "all done" because she signs it when we say it or when she sees that something is all gone. She waves when we say "bye bye," she gives us a mean look when we say "no," she gives kisses when we ask for them, she runs in the kitchen when we ask her if she wants to eat.

We got some video of her saying "more" and dancing on Christmas morning. Enjoy! Sorry for the poor quality on the dancing video.

Lily is Babbling!

2009-11-30T05:24:00.000-08:00

Just 3 short months after her CIs were activated, Lily has started babbling. Of course I thought this day would never come, but here it is. So far she is just saying "yah, yah, yah" and "mah, mah, mah." It seems to be just random babbling with no meaning at this point. However, at Thanksgiving dinner my aunt asked if she was talking. I told her that Lily was babbling a little. So my aunt starting saying "mah, mah, mah" to her and Lily looked at me. She did that twice. So maybe that shows comprehension of that sound also. It is so amazing, the little things that make me jump for joy. If Lily had been a hearing baby I'm sure I would have taken for granted the first time she babbled. So much to be thankful for.

We Love Headbands

2009-11-19T18:51:00.000-08:00

We are now using headbands that we found out about here from Taylor's mom. We LOVE these! The headbands hold the CIs behind Lily's ear without bending them. No more velcro dots! I added a little flower alligator clip to the headbands for fun. If anyone else is interested in these headbands, email me for the contact information. The woman who makes these is wonderful. Here are a few pictures of Lily wearing the headbands.

Quick update on Lily's progress:

Lily amazes us everyday. A few of the things she is doing now: dancing to music without seeing anyone else do it, saying "uh uh uh" for up up up, says "uh e" for "uh oh" with the correct inflection when she drops something, says "mmm" for mommy, milk, more and "moo" (when she sees a picture of a cow), says "ahhhhhh" every time she sees a picture of an airplane, gives a kiss when we ask for one (without us puckering our lips), claps her hands when she HEARS us sing "Pat-a-Cake" (no modeling from us), waves bye-bye when she hears the phrase (she even waves when we tell her bye-bye on speaker phone).

She's doing many more things, but I just have time for a quick update tonight. We're so thankful for the miracle of cochlear implants.

So Much to Update

2009-09-22T15:08:00.000-07:00

Lily has been doing wonderfully with her CIs. She hardly ever tries to take them off, which we are sooooo happy about. She leaves them alone much better than she did her hearing aids. The only time she really tries to take them off is when she is trying to get our attention (because she knows she'll get it immediately) or when she is tired. For the first two weeks she wore the CIs with the babyworn option (the BTE controllers clipped to her back). She is wearing the babyworn option in the top picture. We didn't use the snugfits because we didn't like the way it was bending her ear down. So we put a velcro dot on her processors and a velcro dot on her headbands and we just stuck the processors to the headbands. Since none of the weight of the CIs is on her ears she can wear the BTE controller attached to the processor (all one piece) and her ear still doesn't get bent. We love this way because now we don't have to mess with cables hanging everywhere when we need to change her clothes. The next pictures show how Lily is currently wearing her CIs.

We had our first sound booth test since Lily's CIs were activated. She did great! She responded to sound at 20dB across all frequencies. Yay Lily! We think this is awesome for having been activated only 3 weeks ago. It was so cool to watch her localize as the sound switched speakers.

Another big event for Lily this week is taking her first steps. She has taken one or two and a few times, up to four steps. Today she walked a short distance across the room, taking about eight steps. Lily is growing up so fast and so much is changing for her right now. The world is just beginning to open up for her.

Now for bad news. . .insurance. We already knew our insurance was denying her claim for the surgery since she is under 12 months. Now they are also denying our audiology appointments because, in their words, "Cochlear implants for members less than 12 months of age is considered investigational and therefore diagnostic analysis of bilateral cochlear implants is being denied as investigational." . Drew's mom was worried this might happen to us. However, I thought (and still think) it best for Lily to have access to sound as soon as possible. This will just be another battle between the insurance company and me. Insurance won last time. I'm hoping they don't win this time. We're going to appeal the decision and our doctor and audiologist are going to conduct a peer consultation. If we don't get anywhere with that, Cochlear's Insurance Support will help us file a second appeal. Wish us luck!

Lily's First Word

2009-09-12T12:30:00.000-07:00

Lily signed her first word on Tuesday. She signed more when she wanted me to play her gobbling turkey I got her that day. She did it about 5 times and then wouldn't do it anymore that day. I couldn't get her to sign it the rest of the week either so I thought maybe she wasn't signing but just clapping since that is a fairly new thing she has been doing. So today when I was feeding her, I said "Mmmmmore," before giving her another bite (we're working on the mmmm sound). After hearing me say "mmmmore" she signed it! I didn't even sign it. Yay for Lily! I have been saying it and signing it all week though. She continued to sign more as well as say "mmmmm" during the rest of lunch. It figures that just as we're ready to stop signing and focus completely on oral communication, she starts signing. This makes me question our decision to be strictly oral. If she can communicate with us now, I want her to be able to. We may continue using a few signs for basic communication. Signs like more, eat, drink, hurt, milk.

Lily definitely wants to communicate with us. She has been hearing for a little less than 2 weeks and she is already imitating the ahhh sound and the mmmm sound after she hears me say it. Our journey has just begun, and we are so excited for the new things Lily will learn and do each day.

Lily's CI Activation

2009-09-01T19:05:00.000-07:00

Lily's CIs were activated yesterday. Yesterday was really the first time she has heard anything. We have been waiting for this day since December 4th, when we first found out our baby girl is deaf. She didn't respond to my voice so much, but she did seem to respond to her daddy's voice. It was really exciting!

The audiologists said Lily did really well. They told us that most babies cry or are irritated, but not Lily. She sat really still when she was listening to the series of beeps from the computer. When she heard her daddy's voice, she turned to look at him and smiled. It is so precious.

The sounds that Lily is hearing right now are really soft sounds. We will change the program each day so that she will slowly hear more and more. We don't want to overwhelm her by throwing her into this noisy world after she's lived her life in complete silence for 9 months.

Here are a few pictures from Lily's "Hearing Birthday." You can see what the external equipment looks like. She has brown coils (the magnets on her head) and pink processors (the piece she wears behind her ear). The pink things clipped to her back are the controllers that allow us to change the programs and adjust the volume and sensitivity. This will eventually connect to the processors and she will wear it all behind her ear once her ear is big enough.

She has done a pretty good job of leaving everything on. Sometimes she'll grab at the processors so we just put her pilot cap back on and she leaves everything alone. The pilot caps have been the best investment for us. She wears the white Hanna Andersson pilot cap and the white SilkaWear cap. Since the caps are white, we can still see the blinking red lights through the material of the cap. The blinking lights let us know if sound is getting to the microphones on her processors. If the lights blink slowly, she isn't hearing; if they blink quickly, she is hearing.

Lily tolerated Program 2 just fine today, so tomorrow we'll turn her up to Program 3 and she'll be hearing a few more sounds than she could hear today. Her journey into the hearing world has just begun!

Looking Better

2009-08-26T17:59:00.000-07:00

When I got home from work and checked out Lily's incisions on her magnet sites, they looked much better. One side is still just a little more red than the other side. We're going to have her ENT check it out tomorrow just to be on the safe side. He'll probably think I'm crazy, but I just want to make sure she is healing like she should.

The steri-strips finally came all the way off today. We took some pictures of the incisions.

Now that the swelling is completely down, you can really see the magnets under her skin. This is a picture of what is implanted under her skin on both sides of her head.

Can you see the outline of the magnet in these pictures?

Only 5 more days until activation!

Infected Magnet Site?

2009-08-25T18:47:00.000-07:00

The steri-strips are starting to come off and I noticed Lily's left ear magnet site is still looking pretty red. It looks like it could possibly be infected at the end of the incision. Maybe this is normal. . . I don't really know what to expect. Her left ear magnet site is more red than her right side. Any experienced CI mommies see this on your kids? I emailed the doctor to see what he thinks. We appreciate your prayers.

Right Side

Left Side

Left Side Close Up

Feeling Better

2009-08-24T19:29:00.000-07:00

Just a quick post to update on Lily. She is feeling much better. No more dizziness or vomiting. Thanks for your prayers. I went back to school today, so I've been pretty busy. Lily's activation day is in one week! My baby girl will hear her first sounds in seven days. . . so exciting! I want to post some more pictures of the magnets under her skin and her incisions. I'll post again soon.

Head Bandage Off

2009-08-14T15:06:00.000-07:00

Surprisingly, Lily left her head bandage on for 3 days. So today we took the bandage off. She sat so still while I was unwrapping the gauze. It probably felt good to get that big heavy bandage off. As soon as it was all the way off, she started grabbing at her ears so we had to put the pilot cap back on. You can see the bump under her skin where the magnets are. I don't think it's too bad, but Dr. Kang said it is still swollen. Once the swelling goes down, he said the bumps will be more noticeable.

Lily still isn't quite back to herself yet. She is fine during the day, but in the evenings she gets dizzy and sick. The past 2 nights her eyes move back and forth quickly (like she is dizzy) when I lay her down to change her diaper. Then shortly afterward she vomits. Her balance is also much worse than before surgery. When she is sitting and she turns to look at me, she looses her balance and falls over. She is also much more unsteady when crawling and pulling up to stand than before surgery. We took her back to the doctor today to make sure there are no complications. Dr. Kang is a little concerned about the dizzy eye movement. He told us to just watch her to see if it keeps happening. We have another appointment with him next Thursday. Please continue to keep her in your prayers.

First bath after surgery

Taking the bandage off

Unwrapping the gauze

The bandage is finally off! Look how tight it was on there.

One of the incisions (still covered with a steri-strip). Can you see the magnet under her skin?

The pilot cap is back on

Surgery. . . Success!

2009-08-12T08:17:00.000-07:00

Lily's surgery went very well yesterday despite my nerves. I started getting a nervous stomach Monday night and it lasted all day yesterday. It was hard to watch my baby cry and hit my chest because she was hungry and not be able to feed her. She didn't understand. Watching the surgery assistant wheel my baby away from me into the OR was the hardest thing I've ever had to do. That's when the tears really came. Once surgery got started I did pretty well. We had friends and family waiting with us. They really helped distract me from thinking of Lily in surgery all day. We played cards and talked and before I knew it, the audiologist came out to tell us that one ear was done and that all 22 electrodes were working! Yay! A little over an hour later she came back out to tell us the second ear was done and all 22 electrodes were working! It was a 4 hour surgery, but it really seemed to go fast with all the distractions we had around us. I'm so glad they were there; otherwise I would've worried and had an upset stomach for 4 hours. Dr. Kang told us we would see the outline of the magnets in her head because the bone of her skull is thin since she is a baby. We haven't seen it yet since the bandages are still on. If she leaves the bandages alone, we'll leave them on until Friday. I'll probably post more pictures then. There are also more pictures of surgery day here. Thanks to everyone who was thinking and praying for us.

Lily with her surgeron, Dr. Kang

Lily's daddy and I holding Lily's CI koalas while we waited for her to come out of surgery

Lily's IV

Just waking up after surgery

Getting ready to go home, 2 hours after sugery

Our family at home after surgery

Matching bracelets for the girls that waited for Lily to come out of sugery: Me, Lily (hers is on her ankle), my mom, my cousin Courntey, and my girlfriend Laura

Grandmommy getting Lily ready for bed

Morning after surgery, feeling better

Surgery Tomorrow

2009-08-10T15:04:00.000-07:00

Lily's bilateral CI surgery is tomorrow. We have to be at the hospital at 8:00 a.m. and surgery is supposed to start at 10:00. I've been looking forward to this all summer and now, suddenly, I'm feeling scared and nervous. Yes, I want my baby to hear and I'm excited for that, but I wish she didn't have to have surgery. So say a prayer for Lily tonight. I'll post surgery pics as soon as I can. Also, Lily will NOT be able to hear tomorrow. The incisions behind her ears need to heal before she can wear the processors behind her ears. So she won't be able to hear for about 3 more weeks. Her activation day is scheduled for August 31.

Waterpark Fun

2009-07-24T14:50:00.000-07:00

I've been taking Lily swimming at least once a week this summer so she'll get used to the water and, hopefully, not be afraid of it. This week was rainy and cloudy so Lily and I went to an indoor waterpark with Lily's Grandmommy Cindy and friends Jackie, Sam, and Sarah. It was the first time Lily got in a baby pool where she could crawl around in a few inches of water. She loved it! We'll probably try to go swimming a few more times before her surgery. . . just a few weeks away.

Crawling and Silka Wear Bonnets

2009-07-10T13:44:00.000-07:00

Lily is finally crawling and now I can't keep her out of things! She's everywhere! As I'm writing, she crawled over to my stack of magazines and is now crumpling and tearing the pages of all of them. She has hundreds of toys and books, but she wants my magazines.

Today we got what I hope is to be our LAST pair of ear molds. Her surgery date is in about 3 weeks. I'm so very excited! We also know that activation day is August 31. That is the day I'm really looking forward to.

Lily is wearing a SilkaWear bonnet in these last pictures. They are kind of like the Hanna Andersson pilot caps I blogged about here, but much more expensive. The side panels are made of mesh to allow sound and air to circulate. Honestly, I think the Hanna Andersson caps are just as good. We decided to get the SilkaWear bonnet becasue of the elastic around the face. When Lily was scooting on her back all over the place, she would scoot the pilot cap off and then take the hearing aids out. It is a lot harder for her to scoot the SilkaWear bonnet off. Most of the time the elastic keeps the bonnet in place even when she is scooting around on her back.

Quiet?

2009-06-25T13:02:00.000-07:00

Things have settled down a bit around here. A few weeks ago I felt like I was in a whirlwind of appointments, insurance denials, insurance appeals, disagreements with medical professionals, etc. Now that I've written the appeal letter to insurance and the doctor has agreed to implant Lily in August, there isn't much going on. Just waiting. . .waiting to hear back from insurance, waiting for August 11 (surgery day), waiting for activation day.

In the meantime, Lily is as precious as ever. I think she's getting a little rotten with me being home everyday now. I think it's going to be harder to go back to school in the fall than it was to go back after my maternity leave. I just enjoy her so much! I keep waiting for her to crawl. She's been scooting on her back all over the place since March, but she still won't crawl. She gets on her hands and knees from sitting and rocks back and forth, but then she just falls on her belly. Then she flips over on her back and scoots until she gets to what she wants. She'll get there someday soon I hope.

Frustrating But Worth It

2009-06-13T05:05:00.000-07:00

All of Lily's CI candidacy evaluations are complete and the CI team at NCH (Nationwide Children's Hospital) has decided she is a great candidate for cochlear implants. Very exciting! The frustrating part of all this is trying to get a surgery date and figure out how the surgery is going to be paid for.

As I mentioned in my previous post, we have BCMH funds available to us. I recently found out that BCMH has approved Lily for bilateral cochlear implants. So we were told in May that the surgeon would perform simultaneous bilateral (two ears in one surgery) CI surgery when Lily is 8 months old with the BCMH money. A week later we were told that the surgeon will only do one ear with BCMH money at 8 months and do the other ear in November when she is one year old with money from insurance. I was disappointed, but moved on and got excited about having one ear implanted on July 1. My baby would be hearing before the end of July! We had all of our appointments scheduled for pre and post surgery and mapping. Her equipment has been order and we're all set for surgery in a few weeks. Well. . . last week I got a call that our insurance denied Lily's surgery because she is under 12 months AND that BCMH will not pay for any surgery until Lily is 9 months old on August 11. Not a big deal, just one month at 10 days later right? WRONG! It is a big deal. It is so frustrating to be told one thing and get your hopes up only to be told something else later. So I'm told that Lily will get one implant August 11 and the other implant the week of her first birthday.

With all the stress of the end of school last week, being told one thing and then another what seemed like 50 times, and starting the appeal to insurance, I sort of broke down and lost it. I cried, I was angry, I was sad, I was frustrated, I was tired. . .I was hopeless. I thought we would never get through this. So I called and spoke with Lily's surgeon and explained my feelings of frustration and my STRONG feelings that we should have access to the BCMH money for TWO implants since that is what we have qualified for. He said he would discuss it with the appropriate people and get back to me in a week or two.

I was still feeling pretty hopeless, so I started my appeal letter to the insurance. I feel like I'm back in college writing a research paper. I've gathered all of this research demonstrating the benefits of implantation under 12 months of age. I've also gathered some research demonstrating that anesthesia complications in infants 2 to 12 months is no more risky than it is in children aged 1 to 5 years. I've got a rough draft letter finished.

I needed a break from thinking about hearing aids, cochlear implants, surgery, insurance, FDA, etc. so Lily and I joined some family on a trip to the Columbus zoo yesterday. We had a great day and I didn't think too much about all that was upsetting me. I got a call yesterday from Lily's surgeon. He was able to get back to me in 2 days rather than 2 weeks. He explained that he met with the medical ethics board and the head of BCMH and they decided. . . to do SIMULTANEOUS BILATERAL COCHLEAR IMPLANT SURGERY when Lily is 9 months old! I'm SO excited! Now Lily only has to have one surgery and she'll still be hearing before she is one year old. So now her surgery is scheduled for August 11. I'm praying that nothing changes. I'm still going to file the appeal with the insurance in hopes that they'll reverse their decision and the BCMH money can be saved for others who may need it.

This whole CI process has been hard on me. But I know it will all be worth it the first time my sweet baby turns to the sound of my voice. I was reading my devotional and the author wrote something that I really needed to be reminded of. He wrote, "God never said the journey would be easy. . .He just said it would be worth it." That's what I'm holding on to right now. I think there are going to be MANY bumps along the road of raising a deaf child and the journey will be hard sometimes and sometimes not so hard. But at the end, it will all be worth it.

This baby is definitely WORTH it!

Results of CT Scan and CI Surgery

2009-06-02T17:11:00.000-07:00

Lily's CT on Friday went well. Thanks for all the prayers. I'm glad it's finally over. I wasn't sure if she was going to actually go to sleep this time. We tried to get the scan back in January with a rectal sedative and she wouldn't go to and stay asleep so it had to be rescheduled. This time they started off with the smallest dosage and kept increasing it until they gave her all they could give her for her weight. She just kept fighting sleep. She would close her eyes and then open them and stare at all of us. She finally went to sleep and we got the scan. I hated watching them strap her down and stick a needle in her foot for the I.V. After the scan, she woke up just fine and all that's left to remind us of the whole thing is a little bruise on her tiny little foot.

Dr. Kang, her surgeon, called tonight to tell us everything looks normal on the scan. No problems. The CI team reviewed Lily last Thursday and decided she is a great candidate to receive a cochlear implant. So now we're submitting paperwork to the insurance company in the morning. No one was in the ENT clinic on Friday, Dr. Kang isn't in the office on Mondays, and he's in surgery all day on Tuesdays, so tomorrow is the first he'll have the chance to sign the paperwork. Hopefully it will be faxed to our insurance company tomorrow morning. Please keep your fingers crossed for an approval for bilateral implants under 12 months. The CI team isn't very hopeful. They told us that insurance companies are denying surgery under 12 months more and more. If insurance approves it, Lily will be having simultaneous bilateral cochlear implant surgery this summer. However, if we're denied, we've decided to get one implant in July with money from BCMH and one implant in November (Lily's first birthday) with money from insurance. Dr. Kang said there won't be a problem with BCMH paying for one and insurance paying for the other. He told us that if for some reason insurance gives us a problem with the second implant, BCMH will pay for it. So she will get two implants regardless.

We really wanted for Lily to only have to have one surgery, but we also want her to hear as soon as possible. As of right now, we are scheduled for surgery on one ear July 1. At that time, Lily will be one week away from 8 months old. Those of you who have already been through this know how stressed and excited I am all at the same time. Please pray that the insurance will approve both ears under 12 months. I'll update again when I have an answer.

CI Candidacy Stuff

2009-05-23T18:29:00.000-07:00

All of the CI Candidacy appointments are now complete except for the CT scan, scheduled for Friday, May 29th. The CI team is supposed to go ahead and review her on Thursday, May 28th, pending the results of the CT scan. They aren't expecting to find any surprises from the CT scan since Lily has Connexin 26.

The pre-CI audiology appointment was last week. We picked the colors and brand of cochlear implant we want for Lily. We are going with the Nucleus Freedom from Cochlear for Lily. We didn't look very closely at the other brands because the internal part of the implant on the Freedom is smaller than the other brands. Our audiologists explained that the surgeon prefers this brand for babies since it is so small. We definitely want a brand that our surgeon and audiologists are comfortable working with. The audiologists also told us that Cochlear does a good job of making their upgrades backward compatible so that Lily will be able to take advantage of the upgrades without having another surgery. Basically, the newer and better external parts that will come out in the future should be compatible with the internal parts Lily will already have.

In her blog, Aiden's mom wrote a fantastic summary of the 3 different cochlear implant brands and the reasons they chose the Nucleus Freedom from Cochlear. Lily's daddy and I like Cochlear for many of the same reasons that Aiden's mom highlighted. Right now the only decision I'm not sure about is the controller option. Our audiologists highly recommended the bodyworn controller option and the babyworn controller option as a back up. They think we should start with the bodyworn because it beeps if the coil (the external magnet) comes off of Lily's head. This lets us know if Lily is without sound. Although I like that feature, I think I would prefer for her to wear the babyworn controller. The babyworn just clips to her clothes, whereas the bodyworn has to be worn in a harness, in special onesies with pockets, or in pockets that I would have to sew on all of her clothes. I'm thinking I want 2 babyworn controllers, one to wear and one as a back up. We would get one in beige for her to wear now (since she has very little hair) and one is chocolate brown for her to wear when she gets more hair.

Any experienced CI mommies have any thoughts? Which controller option do you use and why do you like it or not like it? Thanks in advance. I don't know what I'd do without the help of those of you who've already been there!

1 Down, 4 to Go

2009-05-16T09:01:00.000-07:00

We had the first of several evaluations for the CI candidacy on Wednesday. The occupational therapist evaluated Lily and told us that she is above average in both gross motor and fine motor skills. She is quite a bit above average with her balance. This is a bit surprising to me because I thought hearing loss would cause some balance issues. So far it hasn't.

The rest of the evaluations have also been scheduled. We see the neuropsychologist and social worker this Wednesday, the CI audiologists this Friday, and radiology for her CT scan next Friday. I'm a little nervous about the CT scan because they have to give her IV sedation. We tried to get the scan back in January, but she wouldn't stay asleep with the rectal sedative. The day of the scan she won't be able to eat for several hours, which is sure to make her nice and grumpy. I know it will all be worth it in the end.

Once the evaluations are complete (May 29th), the CI team will decide if Lily is a candidate on June 4th. We will then schedule the surgery and submit it to insurance. Please pray as we move forward with Lily's journey to the hearing world.

My First Mother's Day with my Sweet Lily

2009-05-11T15:47:00.000-07:00

Cochlear Implant Candidacy Process

2009-05-11T15:11:00.000-07:00

We met with Lily's ENT on Thursday and we all agreed that Lily is not benefiting from her hearing aids. She has NEVER responded to environmental sounds and in the booth she has responded at 80 to 95 dB. Lily's ENT and cochlear implant surgeon is Dr. Kang at Nationwide Children's Hospital in Columbus. We disucussed with him our wishes to have her bilaterally implanted in July when she is 8 months old. He told us he had no problem doing the surgery at 8 months but he wasn't hopeful that insurance would approve it before 12 months. He explained to us that even though some insurance companies have approved it younger than 12 months in the past, many companies are starting to deny claims before 12 months. So I'm afraid we may have a battle ahead of us.

The next step: complete several evaluations to determine if Lily is a candidate for cochlear implants. The following are the evaluations we will be scheduling in the next few weeks.

1. Medical Evaluation: Lily will have a CT scan to make sure there are no malformations of her inner ear that may impact the surgery.
2. Audiological (Hearing) Evaluation: More extensive sound booth testing and education for her daddy and I about cochlear implants.
3. Speech/Language Evaluation: Lily's expressive language (verbal and/or sign) and receptive language (understanding verbal and/or sign) will be assessed with her hearing aids on to determine if cochlear implants will benefit her.
4. Developmental Evaluation: A psychologist will evaluate Lily's visual learning and development/behavior.
5. Social Work Evaluation: A social worker will assess child and family functioning, family strengths and challenges and discuss support resources. Family expectations for cochlear implants and further education will also be discussed. Basically, I think this evaluation is to determine if Lily's daddy and I wil follow through with the therapy and education that is necessary for the implants to be successful.
6. Occupational Therapy Evaluation: The occupational therapist will assess Lily's balance and motor abilities and sensory responsiveness to touch and movement.

When all of these evalutions are complete (end of June) the cochlear implant team will determine if Lily is a candidate for surgery (first of July) and then we try to get approval from insurance. We're praying for immediate approval so we can have surgery at the end of July. We really want Lily to be able to hear as soon as possible.

A Little Peace

2009-04-29T17:39:00.000-07:00

We've finally gotten a little peace, not having to listen to feedback all day. Our audiologist thinks the molds are probably not a good fit, even though the impressions were just made a month ago and the same impressions were triple dipped just last week. So we're heading back to Children's tomorrow for the third time this month for new impressions. Our audi told us that we can leave the hearing aids out if the feedback is making us crazy. Since Lily doesn't seem to be responding to sound with the hearing aids, we're really just putting them on her to stimulate her auditory nerves. Our audi said we can stimulate the nerves by using the hearing aids just a few hours a day. I'm putting them on her more than that, but just a little. I don't feel so bad now. As soon as we can get some good fitting ear molds, we'll be back to wearing the hearing aids 10 hours a day. Thanks to all those who responded!

Feedback Driving Me Crazy

2009-04-25T08:06:00.000-07:00

I think the feedback from the hearing aids has officially beaten me. I hate to admit this, but the feedback is so loud and annoying that I find myself putting the aids in later in the mornings and taking them out earlier in the evenings. When we go to church I don't even take the hearing aids. Then I worry that her auditory nerves aren't being stimulated enough. My emotional state has been pretty good lately, but this week I'm back to feeling sorry for myself. I hate that my baby has to wear hearing aids, I hate the loud feedback, and I hate that the hearing aids aren't even really helping much. Even after completely maxing out the volume on her high powered digital hearing aids, she still doesn't respond to ANY environmental sounds!

To all you experienced D/HOH mommies: Any suggestions on dealing with the feedback? We've tried the Otoferm and we've tried double dipping and triple dipping the ear molds. I read about using Comply Soft Wraps at the end of the sound tubing INSTEAD of ear molds. Anyone tried this option?

Second Sound Booth

2009-04-16T17:42:00.000-07:00

Lily had her second hearing aid check in the sound booth today. There was no gain in the decibels she can hear. She responded at 80 dB like last time. Her audiologist turned her aids up as loud as they will go. No responses to environmental sounds tonight, just REALLY LOUD feedback. *sigh*

Update on Lily's Stinky Ear

2009-04-13T19:49:00.000-07:00

I blogged before about Lily's ear smelling stinky after I take the hearing aids out. Thank you to those who responded. I took her to the doctor to make sure she didn't have a fungus infection in her ear. The doctor said her ears look good, no infection. We also got to see the audiologist that day to make some new ear mold impressions. I discussed the stinky ear with her and we came to the conclusion that her ears do have a little smell because sweat is trapped in there all day, but that I also probably have a sensitive nose. I guess her ears smell "normal" for babies who wear hearing aids. She suggested I take them out at nap time to give her ears some more time to air out. I was only taking the hearing aids out for bath time and bed time, not nap time. The smell isn't as bad since I've been taking the aids out at nap time, but there is still a faint smell. I guess it's just something we have to get used to.

Connexin 26

2009-04-13T19:12:00.000-07:00

We finally got a call back from Lily's ENT (ear, nose, and throat doctor) informing us that her daddy and I are both carriers of a recessive Connexin 26 gene mutation. This means that we have a 25% chance of having deaf children. Her daddy and I each passed Lily a flawed copy of the Connexin 26 gene (CX26), which is why she is deaf.

Possible scenarios:

1. Lily receives an unflawed copy of CX26 from her daddy and an unflawed copy from me--Result: hearing.

2. Lily receives an unflawed copy of CX26 from her daddy and a mutated (flawed) copy from me--Result: hearing.

3. Lily receives a mutated copy of CX26 from her daddy and an unflawed copy from me--Result: hearing.

4. Lily receives a mutated copy of CX26 from her daddy and a mutated copy from me--Result: deaf or hard of hearing.

This is true for any children we will have in the future as well.

It is nice to finally know WHY she is deaf. It is comforting to know that it was nothing that I did wrong while I was carrying her. When we first found out she was deaf I wondered what I did wrong. I tried to be so careful and do everything right. It also makes me a little sad though to think that she has NEVER heard anything, not even in the womb. She's never heard her mommy's voice. I'm so looking forward to the day when she will be able to hear our voices.

Meeting Drew and Lily's Stinky Ear

2009-03-30T16:01:00.000-07:00

Last weekend we met Drew and his family. Drew is also profoundly deaf in both ears and he received his cochlear implants when he was 8 1/2 months old. He is now 2 1/2 years old and he hears and speaks beautifully. It was so encouraging to see Drew interact with us, his parents, and his older sister. It made me so anxious for the day when Lily will be able to hear. I can't wait for the day that she will hear me tell her I love her and sing lullabies to her. As I research cochlear implants, I wonder how Lily will hear music. What will it sound like to her? I'll probably never know the answer to my question, but I did get to hear Drew sing a fabulous rendition of "Twinkle Twinkle Little Star" last Saturday. That was something I thought Lily would never be able to do...sing. Drew is definitely a shining star. It was so nice to be able to talk with another family that knows exactly what we're going through during Lily's diagnosis and now waiting until she is eligible for CIs. Waiting is one of the hardest parts of all this. We know Lily is deaf and we know how we can help her to hear, but we have to wait. Reading the blogs of families who have children with hearing loss and emailing/talking with these families has truly been my therapy. These families who have "been there" and now have children who can hear, have put a peace and hope in my heart that I may never have known. Thank God for the Internet! I most likely would have never "met" these families without it.

On a different subject...Lily's ears have recently started to smell pretty bad in the evening when I take out her hearing aids. Even after her bath, during which time I use a damp cloth to wipe behind her ears and inside her ears to keep dead skin from building up. I know the smell is coming from inside her ears because the ear molds smell really terrible also. The molds and her ears smell kind of like a sweaty foot. I wonder if the smell is caused by sweat that gets trapped in her ears while her hearing aids are in all day. If anyone else has experienced this, please comment. Her ears have just started to stink in the last few weeks. I'm hoping it will get better.

Pilot Caps

2009-03-24T18:35:00.000-07:00

Lily has reached the age where everything she gets a hold of goes in her mouth, including her hearing aids. She pulls her hats off and her hearing aids out. At the suggestion of two moms who have experienced hearing aids on a baby (thanks Jenny and Tammy!) we are trying Hanna Andersson pilot caps. These hats are made of thin organic cotton and tie under the chin. They have been wonderful! The hearing aids stay in Lily's ears and out of her mouth!

Here are some pictures of hats that don't tie under the chin. They didn't work as well.

Here are some pictures of the Hanna Andersson pilot caps. Love them!

Lily's First Sound Booth

2009-03-13T16:27:00.000-07:00

Yesterday Lily had her first sound booth check to find out if she is hearing anything with her hearing aids. It's hard to tell with babies as young as Lily is, but we think she responded to sound at 80 dB. Not really great, but it's something. When we found out she was deaf, she was responding at 95 dB...so that's a 15 dB gain. Still no where near the speech banana (40 to 60 dB). Her audiologist turned her hearing aids up in hopes that we might see some more responses to environmental sounds (sounds in her everyday life). After her appointment we went to eat at Genji's Japanese Steakhouse. They bang a drum really loudly when it is someone's birthday. There was a birthday at the table next to us and the staff walked RIGHT by Lily, banging on that drum. No response. She didn't turn to the sound or even stop sucking her bottle. She did, however, notice the fire on the grill every time. She is still very much getting her information about this world visually.

We're Having a Baby!

2009-02-27T04:48:00.000-08:00

No, not another baby. Yesterday was the anniversary of the day we found out we were expecting Lily. We were sooo excited and there was so much we didn't know. We didn't know that our first child would change us so much. I had NO IDEA how much she would change me. Before Lily, I didn't know the kind of love that a mother has for her child. She has put in me a love that is so great and so deep that I could've never imagined. I loved her as she was growing inside me and I loved her when she was born, but somehow I love her more with every passing moment. When we found out we were expecting Lily we didn't know that we would have to help her to be able to hear. Her hearing loss has made me appreciate so much more in life. There is a lot I take for granted. So much has changed in a year, and I'm thankful that those changes have made me the mommy of a beautiful baby girl.

OtoFerm Acoustic Seal Creme

2009-02-15T10:24:00.000-08:00

The feedback from the hearing aids is driving me crazy! Lily's hearing aids were buzzing all through church this morning. I kept going to the nursery so we wouldn't distract anyone. We've had these molds for 6 days. Has anyone every heard of OtoFerm Acoustic Seal Creme? I've read that it helps cut down on the feedback. If anyone has used it or heard of it I would love to hear from you. Here are a couple of cute pictures from this morning. Somehow she managed to get her foot stuck in the toy on her bouncy seat. I love her so much!

Growing So Fast

2009-02-13T06:34:00.000-08:00

It seems like as soon as Lily gets new ear molds for her hearing aids, they're too small and we need new ones. When the molds get too small it's easy for Lily to take them out. Here she is with her right hearing aid in her hand. She had just taken it out.
We just got new molds on Monday and I'm calling the audiologist today to schedule an appointment to have new molds made. How can she grow so much in just 5 days? It's amazing! I can tell when they're getting too small because they squeal and buzz more. I can also hear my voice in her hearing aids when I'm close to her. I don't hear any of that when the molds are brand new.

I still don't notice a change in behavior when Lily has her hearing aids on. However, Lily's daddy says she gets quiet for a few minutes right after he puts her hearing aids on in the morning. So maybe...? She doesn't react to loud clapping, banging, or shouting right behind her ears. It'll be interesting to find out what she is hearing or not hearing at her next sound booth appointment in March.

God Gave Us You

2009-02-08T14:16:00.000-08:00

I was reading a story to Lily the other day and got a little tearful. The book is God Gave Us You by Lisa Tawn Bergren. The story is about a bear cub asking his Mama where he came from. At one point Mama bear tells her baby "your papa talked to you and sang to you...he wanted you to be born knowing his voice." I felt sad that Lily has never heard her Daddy talk to her or sing to her. As the story continues the baby asks, "Umm, Mama? I was wondering...Did you ever want a different baby? One like Samuel the seal or Fredrika the fox?"

"Never," Mama said. "Never, ever, ever. Your papa and I wouldn't trade you for the world."

"Why?" Little Cub asked.

"Why? Because God gave us you."

As I was reading this part to her tears started streaming down my face. I never expected my baby to have any problems. I most certainly never dreamed she would be deaf. But as I read this part of the story, I realized that I would never want a different baby. Her daddy and I love her just the was she is, and we wouldn't trade her for the world. We are blessed that God has given her to us.

Hearing Aids

2009-02-07T19:46:00.000-08:00

Lily started wearing hearing aids on Monday (2/2/08). I wasn't really expecting her to respond to any sound, but a part of me was still hoping she would hearing SOMETHING. It's been almost a week, and she doesn't seem to hear a thing. Two of our cats got in a fight this morning and I yelled quite loudly at them. Lily was asleep on my chest with both hearing aids in. . . she didn't even blink. It's going to be a long 3 to 6 months of hearing aid trial, knowing they don't seem to be helping her to hear. She's had her hearing aids for less than a week and her ear molds are already too small. This causes LOTS of annoying buzzing coming from the hearing aids. It doesn't bother Lily though.