The Sound of Laughter

I love the sound of a child's laugh. Especially the sound of my own children laughing. Because Ella is different/special, I haven't been able to hear her laugh that often and when I do, it's magical. I wanted to share it with you so that maybe you will get some joy out of it too.

Our Life Now

Things have been hectic lately. Life has changed for us and I am not sure that I like it, but that's the way it has to be. I feel like I am constantly going and there's no time to sit. There are so many appointments to get to, not only with Ella but now with Shaun. Ella has her Demo Home on Fridays and her audiology appointments on Wednesdays or Fridays. So at the very least we are going to LA once a week. Now Shaun is going to be going as well because his ophthalmologist has referred us to the Stein Institute at UCLA for his eyes. Hopefully he won't have to go that long and we can get it resolved.

Ella had her CT scan this morning for her cochlear implants. They have to check on her cochlea and see if it developed right. Hopefully the next step is getting out the fluid that is in her ear. Nothing can progress until that is resolved. Which means it will be probably longer than 3 months before she can get her implants. Since the hearing aid trial has to be longer than 3 months, we were hoping for the shortest time. 

We were suppose to get there at 11am and then the scan would begin at 12pm, but when we got there no one was there so we got in quick. They put an IV in to give her the sedative and we took her back to the room. I held her on the scanning table and then they injected the propofol. And wow did that work fast. They put it in and in less than a minute she was out. No wonder Michael Jackson loved it. I had to leave the room, but they said the scan wouldn't take more than a couple of minutes, and it didn't. They brought her back out in about 5 minutes. I took a picture because she was doing the creepy baby eye-thing that she does when she sleeps. She likes to sleep with her eyes partially open. It's weird. About 30 minutes after this was taken she woke up and was playing. She was fine and wanted her bottle. I don't know when we will get the results because we don't as of now have an appointment scheduled with the ENT that ordered the CT scan. I guess they will call me and set something up. 

I am glad that this is over. I know it's not that big of a deal, but I am still glad it's over. Now on to the next thing. But I don't know what that is yet. She has been seeing the Early Start Deaf and HOH teacher from the school district once a week along with the JTC classes and Home Demo. I feel confident (now that we have the help) that she will be fine. Before we found the help, I didn't know how we were going to get through this. We are taking it day by day with God's help.

Sorry I haven't been on here. There has been a lot going on around here lately. Ella's First Birthday, my parents coming into town, my friend Ang coming here as well. Then it was Dakota's spring break from school. Next week we are going to take everyone to Disneyland and then up north to Lompoc, then San Francisco.Will be busy but hopefully before we leave I can get some pictures up of Ella's party and fill you in on what's been going on.

A little girl and her hearing aids

Friday started out pretty early. Since our first appointment was at 8:00am at UCLA we had to get up and out of the house by 5:30am. We wanted to avoid the traffic. We got to the appointment and Dr. Kim started fitting Ella's hearing aids for her. Then next was the programming(?). The appointment lasted longer than we expected, but it was worth it. We don't know yet if she can hearing anything. She is not responding yet but she said that we needed to give it some time and since we have to come back in two weeks, it might need some adjusting. So far Ella isn't messing with them too much. But I can't seem to get them in right all of the time. Sometimes when she moves around I hear that awful whistling sound. I know she's little and it will happen alot but I hate the sound. lol After the audiologist we had to rush over to the JTC for the infant preschool and parent support group. It was really nice talking to the other parents about this whole process. One of the main things we talked about it the services offered by the school districts. They gave advice on what to ask for. It helped a lot since our meeting with them is going to be on March 10th and 17th. Then it was time to squeeze in a quick lunch at Boston Market (ew, Nathan's choice) before heading off to the ENT. Dr. Ishiyama was running about an hour behind so we had some time to kill.

When we finally got to see him we explained everything that has happened. He had Ella's tests and info from the audiologist and Children's so he said that we are going to have to schedule a CT scan to see if, where and how much fluid is in her ears. They are also going to look at her ear structure and the cochlea and see if they are good enough to have a cochlear implant put in later. They said she had a lot of wax in her ear so they gave us a prescription for ear drops to dissolve the wax. They are going to call us to schedule the CT scan. We were out of there and on the road by 3:00pm. We missed a lot of the rush hour traffic. Ella slept on the way home since she didn't get a nap all day. Since we left so early in the morning I let her take her blankie with her and as soon as we got in the car she took her blankie and went to sleep. I love watching her sleep. I know she has no clue what's gong on and sometimes I am very thankful for that. I know God has a plan for our family and he will help us through this.

The Journey Begins

This is the story of a precious little girl named Ella. She was born on March 16, 2010. The delivery was normal and so was the recovery. What was not was her newborn hearing screening. She failed. I wasn't too worried because the screener didn't sound worried. She said we would have to come back to the hospital in a couple of days to have another test. We went back and the tympanogram was flat (fluid in ear) and she failed again. Again I wasn't worried. Why? I don't know. Maybe I thought it was just the fluid that was making her fail. We went to see an audiologist and the tympanogram was still flat so they could not do the (ABR) test. We went then to see an ENT. She did another tympanogram and saw that it was flat and gave Ella a low-dose antibiotic to take for a month. We came back in a month and she said the tympanogram was fine and there was no fluid. About a week or two later we went back to see the audiologist and again the tympanogram was flat. She was too old to run another ABR so we started in the booth. It came back that she did have a possible hearing problem. We were referred to Children's Hospital for a sedated ABR. She showed up to Children's Hospital on January 27th and Ella was sedated. They did the ABR and a bone conduction test. The results were that she has a profound bilateral sensorineural hearing loss. In layman's terms she is deaf. It was a shock to me. A few months before the booth test I started noticing that Ella wouldn't look up when I called and wouldn't respond when I made noise to get her after her nap. But I wasn't  ready for this. I haven't made my peace with it yet. It is still a struggle for me to really think about. It has been about a month since we have found out and a lot has changed since then. My relationship with my daughter has changed. My expectations and concerns for her future have changed. I am really hopeful and confident that she will have a great and relatively normal life.

We were referred to UCLA because they were only one of two places in Southern California that do cochlear implants. With her hearing loss being so profound she will have to have implants. We went to see the audiologist, Dr. Kim, on the 11th. She first did a test of Ella's hearing and she concurred with Children's that she had such a profound hearing loss. Next step she said was to get hearing aids. When they do cochlear implants, there has to be at least a 3 month hearing aid trial before the implants are put in. So we made molds of her ear and part of her canal for the hearing aids. Tomorrow she will be getting them. They said we could pick out the colors and we got her purple ones. They are going to mostly rely on what I tell them about her hearing aids as far as her hearing with them. 

We were also referred to the John Tracy Clinic. This place is wonderful. The made me feel not as overwhelmed with everything. They are a place for parents of children that are deaf or hard of hearing. They have parent classes, preschool classes and one-on-one classes. Tuesday night we went to one of the parent classes. It was very eye-opening and informative. They had a panel of kids that go to the JTC and their ages ranged from 5 to 12 years old. I was amazed at how well they spoke and interacted with other people. If I didn't know better I would have thought that they could hear and were "normal" kids. During the class we got to ask the kids and their parents questions. All the kids except one had cochlear implants. I really enjoyed hearing their experiences. It is making me change my outlook on this whole process and now I can see that there is a light at the end of the tunnel. I know it will be a struggle some times but it will all be okay. Ella will be okay.