Crawling and Silka Wear Bonnets

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?

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

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

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

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

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