Back to the Hospital

After her first round of IV antibiotics.

Ella has had it rough since her surgery almost 2 months ago. She was activated in November and what we didn't know until two weeks after that is that she had a staph infection. Her incisions were healing very slowly and then stop healing completely and started getting worse. We went to see her ENT and was sent home with antibiotics. A week later it was not getting any better and seemed to be getting worse. I called her ENT (who was out of the country) and came in to see the Resident. He immediately said she had a bad infection and that she would have to be admitted to the hospital right away for IV antibiotics. I couldn't believe it. I thought we would go in and they would just give her stronger ones. Well I guess they did do that, but I didn't think it was quite that bad. I was wrong. She spent the next 4 days at the Ronald Reagan UCLA Medical Center getting IV antibiotics every 6 hours. At first Ella didn't mind staying in the hospital but by the second day she was getting antsy and wanted out. Since Mom and Dad were still in town Mom stayed at the hospital with me and Ella. Ella actually loved all the nurses and doctors and they certainly thought she was the cutest. They kept telling us that she was the best patient cause she didn't mind when they came in to put her IV in or take her blood pressure and pulse. On the third day I got a call from the doctor saying the culture they had taken from the incision had grown and it was a staph infection which meant she got it in the hospital when she had the surgery. She has been home from the hospital for about 2 weeks and while the incision hasn't healed on either side 100%, it has gotten a lot better. We are almost fully healed and when she is, she will be able to wear the headbands with the processors by her ears. Right now they are pinned to her shirt at the shoulders so that she can still hear. She was not phased at all by the infection and was smiley in the hospital for most of the time. We have a follow up appointment with the ENT this Tuesday and an appointment with the Audiologist on Wednesday to turn her ears up more. 

I am amazed by Ella everyday. She loves her ears and knows exactly what to do when I get them out in the morning. She actually wants them on. Today I caught her paying attention and watching the tv. Before she would ignore the tv because she couldn't hear it. But now that she can, she stops and listens to the music on the kid's shows.

I can hear!

We all had been waiting for this day for a while. I am was nervous/excited for this day to come. We were about half an hour late to the Audiology appointment because of the traffic on the 405. We went in and immediately the Audiologist went to work. She started setting up her processor and the majority of the appointment was waiting. I will let the videos do the talking. It wasn't a major reaction from Ella but there definitely was one. It still melts my heart when I watch it and see her looking up at her Daddy when she hears him talk. <3

It has finally arrived: Surgery Day.

It has been a week since Ella's surgery and I have found the time to post this. Her surgery was scheduled at 8:30 in the morning and we were to be there at 7:30. Well since we had to go down below (LA) and there is a lot of traffic, we didn't make it til almost 8am. They were very nice and understanding since a lot of their coworkers were late as well due to the traffic. We got to the back and immediately got changed into the hospital gown and doctors, nurses and anesthesiologists showed up to fill us in on what was going to go on and had us sign a bunch of papers. Then it was time to wait for our turn. For not being able to eat that morning she was extremely happy. When it was time we both hugged and kissed her and they took her into the surgery room. They said it would be about 3-4 hours long so since we left at 6am and hadn't eaten since the night before we decided to walk to Jerry's Deli which was a block away from UCLA. We ate and then came back to and waited about an hour for her to come out. She was still sleeping when we came in to see her. As soon as I touched her she woke up and started crying. She sat up and wanted me to hold her and so I did. I thought she would handle the anesthesia well, but she didn't want threw up on me twice. I had to ask them for some scrub pants. She was eventually cleared to go home later that day at about 4:30. Dakota stayed the night at Nathan's parent's house and Shaun was over there when we got home. We picked up Shaun but left Dakota there so that Ella could have some peace that night. For the rest of the day she snuggled with me on the couch. She didn't eat much that day and I am sure it was from the anesthesia making her tummy upset. She got sick on me one more time that night.
The next morning she was definitely feeling better. She kept down some toast and juice/water for breakfast and had some cheerios for lunch. The "helmet" as Dr. Ishiyama called it was starting to bother her and she made several attempt to take it off. She finally got the hint that I didn't want her messing with it. Again the whole day she cuddled with me on the couch. By the third day she was back to her smiley self and wanted to get down off the couch and play. The helmet on her head was so heavy that is made her wobbly when she walked so we sectioned off a part of the living room so that she didn't get to the tile in the kitchen. I didn't want to her slip on it and hit her head. She didn't like that her playing area was so small.

On Saturday we got to take the helmet off of her head. She was glad to get it off. Her hair was stuck to her head and sweaty. My MIL took a wet cloth and unmatted the hair from her head and it made Ella feel better. Her head itched for the rest of the day and she would rub the back of her head on the couch to scratch it. On Tuesday we went back to see Dr. Ishiyama to check her incision and make sure everything was healing okay. He said that on Thursday we could give her a bath and wash her hair and that the steri-strips that were on the incisions would come off by themselves. Thank goodness she hasn't messed with the incisions. I was nervous that she would try to take the strips off, but she hasn't bothered with them. Our next date is November 16th which is the activation day. It's the day that they turn on her CIs and she will hear. My parents are flying in the week before to be here for the appointment. I cannot wait. I am nervous yet excited for that day. I know it will be a day that I will never forget. We are almost there.

Sorry these are all cell pics. I (again) forgot to charge my  camera battery even after talking to my Mom about it. lol

Almost here.

We are less than 2 weeks away from Ella's surgery. I am starting to get a little anxious and nervous. I know she will be alright. A lot has happened in our family in the last month so that is why I haven't been on here. Ella has been doing great. She has learned more signs and I am so proud of her. I am taking an ASL class at the local college here and had to go to a Deaf Pizza Night last night. There were so many Deaf/HOH/Hearing people signing. It was truly amazing. Some of my classmates and I jumped right in and starting "talking" with people. They were very nice and understanding that we were students and just learning. They went slow for us so that we could understand. There were some people from church there and I got to know them better. I can't wait to go to church and talk to them again. I will leave you with a video of Ella and her new signs.

A Date!!

I am so happy to say that today we got a call from UCLA and we have scheduled Ella's surgery for October 19th!! I am so happy. Now I feel like I can relax a bit until it's time. I have been waiting for this to come for a while and now it feels even more real. I am not nervous yet, but I am sure I will be when the day gets closer.

So close we can almost taste it

So Friday we got a letter from United Healthcare saying that they had approved everything and it's all covered for Ella's bilateral cochlear implants. As soon as we read it we called UCLA to see if they had gotten the letter too. They hadn't but the lady said that she would call them and get it within the hour. We tried to schedule the surgery then, but the lady that schedules was on vacation and wouldn't be back til Monday. They also had to ask the ENT how long it would take so that they had a big enough block of time to fit her in on the schedule.
Now it's Monday and Nathan has been trying to get a hold of the scheduling lady. I know she is probably busy, but it's still a little frustrating when they don't pick up the phone or call back. We will just have to wait.. again.

It's a waiting game

And the waiting game continues. Yesterday Ella had an audiology appointment at UCLA. We did aided hearing tests for each individual ear and another tympanogram. The Audiologist wanted to get this test before she officially talked to the implant team so that she could go in there confident about asking for simultaneous bilateral implants. As far as she can see if Ella has any residual hearing, it's not much. So now we wait on the insurance which I am guessing will take about 3 weeks, and we wait on the Audiologist to present Ella to the team next Wednesday. We don't have another appointment to see her unless this process takes too long and then she wants to see Ella and check up on her. I am hoping we won't have another appointment with her until after Ella is implanted. We have also picked out which implant Ella is getting. She is going to be getting the Nucleus 5 from Cochlear.

Signing

I have been working with Ella for a while now on some simple signs. I think she is really starting to get it. Every time she signs it amazes me. I am hoping to get into a sign language class at our community college but I will have to crash it. I am hoping if I get there early and speak to the teacher about my situation, she will help me out. I will leave you with some videos of Ella's signing.

Good News!

As you can tell by the title, we received good news yesterday. I talked to our Audiologist and she said that we are going to start the process for bilateral implantation for Ella. We don't have a date yet because the insurance has to approve it before we get that. So now we are getting all the necessary stuff together to submit to the insurance company. I am not worried about them approving her because we have already talked to them and it will be 100% covered. :) I know it seems like it hasn't been that long since we found about about her hearing loss but it feels like this process has taken forever. And it's still not over. There has just been so much time that she has not been able to hear. I know it's not a cure or anything like that but these implants are the best thing for her right now. We are thinking that she will get the surgery done in September or October. We are hoping no later than November. Thank you everyone for praying for Ella and our family.

The last Month

A lot has happened in the last month. We did get a loaner pair of hearing aids from JTC. They aren't as great as the ones we have. They are older and don't have the feedback management like the others. But they are fine and strong enough for her. We also got more molds made so that is helping out with the feedback. We talked to our AVT at JTC and her and the Audiologist there are going to coordinate with our Audiologist at UCLA to get the testing done. Apparently we needed more unaided testing. We have had 2 other tests done and it's still the same conclusion, as far as they have been telling me. She needs the CIs. Now whether she needs two is what Nathan and I are waiting on. I am hoping that if she does, then we won't have to wait a year for the other one. I am hoping that they will approve both at the same time.

We have another Audiology appointment this Wednesday and Carlen said that she is meeting with the implant team that morning and that she is going to bring up Ella at the meeting. We are hoping for good news. We are hoping that they are going to say that the tests are sufficient enough to approve her for the surgery. We all know she needs it, it's just getting the team to agree with us. I am very anxious for Wednesday to come. I just hate sitting her knowing that there is something out there that can help her hear and we have to wait for it. It's right there and there is nothing we can do to get it. 

In other news, we are leaving this Thursday night for Florida with my parents. I can't wait! I know the kids are going to love it and Ella has never been to the beach so I am curious to see how she reacts. We are also planning to go to Disney World while we are there. We went here in Ca to Disneyland but it was a bust because it rained most of the day so we left early. I know Shaun and Dakota are going to love it. Also Dakota and Shaun are going to go back to Va with my parents for the summer. I am looking forward to it. :) But I know that I will miss them. It's going to be quiet around here, but I think I will get a lot done. I also won't have to worry about finding someone to watch them during Ella's appointments. Thanks Mom and Dad. I love you :)

Almost there? ..maybe not.

Well we are almost done with the hearing aid phase of the CI (cochlear implant) process. Maybe. We saw the ENT yesterday and he said that the CT scan looked great and as far as he is concerned she is ready to have the surgery. The thing that is holding us up is the hearing aid tests. We don't have enough right now to show that the hearing aids aren't helping enough. I don't know that their is a certain number of tests that need to be done. I do know that our Audiologist needs to have enough tests to present to the Cochlear Implant Board (?) so that they can approve her to have one. We are seeing the Audiologist on Friday so hopefully I can get a better hold of what exactly we need to do to get this done. The only hiccup that we might run across is that we have to give the hearing aids back in a month. Since they are ridiculously expensive we didn't buy them and have them on a trial basis from the company. So I am hoping we can get all the testing done within this next month to satisfy everyone. I know that JTC has hearing aids that they loan to people, but I don't know if that will affect our progress. I don't know if we will have to start all over with the testing if we have different hearing aids. I am just trying to be hopeful that all of this will work out in the time that it needs to.


Edit:
Okay just got a call and found out that we have to give back the hearing aids on Friday. After the call, I thought about it, and started crying. I don't know why. I know that's it's not over and we can ultimately always buy them (even though they are expensive) or probably get another loaner pair from JTC. I know it was silly to cry, but I did anyways. So now we have to find another pair for her.

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.