Surgery

A quick update to let everyone know that Audrena has made it through the first surgery without any major complications.  Dr. L. told us he had to pack some extra tissue around her auditory canal opening and because of this two of the electrodes on the implant may not function properly.  He ensured us this is not an issue and they can program the processor to adjust for this without a problem.  We are staying the night with her in the hospital because she is exhausted and she has not eaten and she threw up when she drank fluids.  Dr. L. and Mommy and Daddy want her to be observed overnight to ensure she is going to be alright.  Other than this Dr. L. told us the surgery went well.

Less than 24 hours to go.

Audrena slept with us last night. I think Daddy and I both needed to snuggle her. This morning as I held her, I couldn't help but think about what tomorrow might bring. To say that we are nervous and scared is probably an understatement. When I think about handing my baby off to any surgeon, I get sick to my stomach. Still, I know we are making the right decision, and I know that she will be in good hands with Dr. L. We are trying to focus on the positive. In 9 days, our baby girl should be able to hear. That's not very long in the big picture. It still amazes me that they can do the activation that soon, providing that she heals well of course.

We have filled out our Advanced Bionics Neptune order form, except for selecting the cable length, so we will have fewer decisions to make at a time when we would rather focus our attention on Audrena. I am so excited to have the option of a waterproof CI for Audrena, and I'm ready to move on from the hearing aids to something that will actually allow her to hear at hopefully a normal-hearing level.

We have also been assembling a bag of "Learning to Listen" toys. (The link goes to a great pdf from listen-up.org and Ellen A. Rhodes of auditoryverbaltraining.com that explains the concept well, along with printable flash cards.) This would be a special bag of toys that we would only bring out during one-on-one time. They will be things like: airplane, bus, boat, car, bunny, monkey, snake, cow, horse, etc. Each of these helps with sound-object association. For example, airplane goes "aaaaahhhhhh" (varying your voice as you make the sound), bus goes "buhbuhbuh," bunny goes "hop hop hop," and snake goes "ssssss." These are going to be good tools for Audrena's speech and language development. We have tried throughout this process to think ahead, and it won't be long before we can use these items!

In the meantime, please keep Audrena in your thoughts and prayers. And please pray that the surgeon is able to perform the surgery without complications, considering Audrena's abnormalities.

Pre-Op Appointment Went Great!

Yesterday we took the kids and Grandma with us for Audrena's pre-op appointment. We left early and went to the Omaha Children's Museum first. What a fun place! They had a special Wizard of Oz exhibit, so we checked that out. Reyana made a beaded necklace. Kelton sifted through the sand for "gemstones." Audrena played with wind chimes. We moved back downstairs to the main floor where Audrena played in the Wiggle Room, and Reyana and Kelton explored. Then we found an area where there was a climbing "ladder" made of woven straps so that there were square areas for hands and feet to grab on. Audrena climbed up and down that like she was a pro! I had the camcorder along, so I was able to record it. She constantly amazes us!

At the downtown Boys Town hospital, there is a "Kids Waiting Room" where they have a large slide, books, and other things for kids to do. Parents can check their kids into the room and check them out when it's time to leave. Reyana and Kelton played in there while we waited. We all had the opportunity to chat with a couple of families. One was a man about my age who was there with his mom and his children. He has meningitis-related hearing loss, and with some luck where insurance is concerned, he will be getting a cochlear implant. The other family has a 14 month old daughter who just received her first CI. She was there for her post-op appointment. All went well. They showed us her x-ray of the internal implant and also her incision site. The incision had healed well and was already pretty discreet. They were off to the activation appointment! I thought of them all afternoon and how great they must be feeling!

We met with Dr. L., and he answered the few remaining questions we had before surgery. Audrena's ears were clear of infection, and she is all set for surgery! He pulled up her CT scan again to take another look. Yes, he said she will definitely be a challenge for him. He discussed the abnormalities with her anatomy again. Then he said he would get this done "without complications." He prepared us for a longer-than-average surgery, but he said the nurses would keep us updated throughout. I have to say we just love his personality. He is so soft-spoken. He clearly knows what he's doing, but he's not boastful. Even as he said he was used to dealing with abnormalities like Audrena's and would get through the surgery without complications, it was in a quiet, reassuring manner, not a self-promoting one.

We did have a funny moment. As he was telling us that they treat pain with a high dose of Tylenol, Audrena looked at him and nodded her head. We all laughed as he said, "Yes please. I don't like pain!" It was just the right comic relief.

And now we just hope the next two weeks pass quickly!

Two Weeks to Go!

Two weeks from today we will be heading to Omaha and losing sleep in anticipation of Audrena's first CI surgery! We're already nervous, scared, and yet very excited. It's hard to describe this feeling, but I'm sure those of you out there who have been through it know exactly what I'm talking about.

We've been doing what we can to prepare. I had no luck shopping around here for button-up clothing. This is a must since it won't be possible to pull clothing over top of the bandage. So my sister went shopping over the weekend and found some outfits that will work. She is mailing them to us. I also bought some pillowcases and ribbon. I will be making pillowcase dresses, since they tie at the shoulders and can be pulled up from the feet instead of over the head. We have some sleepers that zip or snap, so Audrena should be all set in that department.

I got a phone call last week from the CI Team Manager with our activation schedule. It includes an appointment with the surgeon and an x-ray. If he clears her for activation, then we go to our audiology appointment for the activation. We have listening therapy following the activation. Then the next morning we have another audiology appointment.

I also spoke with our Boys Town Speech-Language Pathologist last week. I am so glad we will work with the same lady we had for our CI evaluation appointment. She seems like such a perfect fit for us. We discussed speech therapy options and tossed around some scheduling ideas. Maybe things won't be quite as hectic as we had anticipated with this new plan, and yet Audrena should still get the amount of therapy we had hoped for.

So for now, we continue to count down the days!

Deaf Girl Regains Hearing

 My friend, Jess, just sent me the link to this video from ABC News, entitled "Deaf Girl Regains Hearing." What a wonderful testament to what a cochlear implant can do!

http://abcnews.go.com/Health/video/deaf-girl-sammie-hicks-regains-hearing-and-cries-16420446

First Steps--So Exciting!

We found out yesterday that Audrena took her first independent steps last week at daycare, and did it way more than once! She took 2-3 steps between a ride-on toy and the couch repeatedly. We were SO excited to hear that!

So we decided to try it at home. Randy picked just the right moment when she wanted me. He let go, and she took 2 steps to me. We tried to repeat it, but we had both been so excited that Audrena collapsed into a puddle of giggles at our reactions. She did also try to stand up in the middle of the floor from a sitting down position. She didn't get all the way up. It was more like if she had been standing but bending over, and it didn't last long, maybe a second, but she was clearly trying to stand!

Another bit of good news.

Today the occupational therapist came to evaluate Audrena. There were concerns that she would need regular occupational therapy, especially in the areas of visual/perceptual things in order to help her compensate for her lack of vestibular function. We were very surprised to hear that she is doing just fine in those areas. As of now, the occupational therapist was impressed with Audrena and feels that a once-a-month evaluation is appropriate, rather than weekly therapy visits. She just wants to monitor Audrena to make sure she doesn't eventually fall behind, but right now our little small and mighty girl is doing just fine.

We have a surgery date.

It's not what we were hoping for, but we'll take it. Apparently something was not quite as we thought, and the doctor will be out the first couple of weeks in July. He also wants to see Audrena in the clinic before surgery. So, even after asking if there was any possibility of going earlier, we are scheduled for July 31.

It's disappointing to wait that much longer, but in the meantime we will pray for a cancellation. Even a week earlier would be wonderful. We know that God has a plan, and everything will work out as it's meant to be. At least we have insurance approval and a surgery date. That's more than we had 24 hours ago, and it's progress!

A video from Boys Town.

This video is from Boys Town about what to expect on your child's surgery day. I'm mainly posting it here so that our family and friends from other areas of the country can see what Boys Town looks like. It's kind of like putting a face to a name.

The first building shown in the video is the Downtown Campus, where we had our pre-op appointments and vestibular testing. The skywalk shown in the foreground connects to the Lied Center, where we also had some appointments, and (from what I understand) where Audrena's activations will take place.

The second building is the West Campus, where we went for our consultation and Audrena's sedated ABR, MRI, and CT scan.

The hospital room shown at 22 seconds is just like the one we had when Audrena had her MRI and CT scan, except ours had a crib instead of a bed. Audrena played in the toy room shown at 2:06.

And the people? Yes, they really are that happy and smiley. Every single person we have encountered thus far has been nothing short of wonderful.

http://www.youtube.com/watch?v=Ohw3GCU63Aw&feature=plcp

A little about hearing and balance...

I'm trying to include research and educational materials in our blog as I find them. This video explains how we hear. At about 36 seconds, it talks about the hair cells. Those hair cells are what do not work in Audrena's ears, and it's called sensorineural hearing loss. Cochlear implants bypass those damaged hair cells by threading electrodes through that snail-shell shaped cochlea, delivering signals to the auditory nerve.

http://www.youtube.com/watch?v=vTiGskc1o48&feature=related

This video shows the ear structure, including the cochlea and the vestibular system. Audrena is missing the Posterior and the Lateral Semicircular Canals. She only has the Anterior Semicircular Canal, the one that sticks up on the top. This is the reason for her lack of balance and why she is late to walk.

http://www.youtube.com/watch?NR=1&feature=endscreen&v=WDfynsIk0PI&noredirect=1

Thank you to the posters of these Youtube videos!