Friday, June 22, 2012

Video of Please.

This is the video I took of her saying "Please."

Moving on to bigger and better things.

Since the last time I updated you guys, Ella was going under again to put back the implant that was infected. This happened very smoothly and healed up great. She is now hearing with both ears again and very happy about it. She has made slow progress in listening and talking. She has imitated one word, "Please" but nothing else. She is understanding a lot more though. Since the JTC is having their international program for the summer, I had to find some another way to get Ella the AV therapy that she needed. I have been in contact with our insurance and after jumping through a couple of hoops, they will cover her therapy. The closest AV therapist to us is in Burbank which is a little over an hour away, but it is better than 2 (with traffic). We will start seeing the therapist on July 13th, once a week. The insurance company only allows for a certain amount of sessions a year, which is a lot less than one a week. We will not have to deal with this until next year though since the year is half over anyway. I can't wait until the end of the year and see her progress. I am excited about this next chapter of her life and how much she will grow and learn.

Wednesday, March 28, 2012

Another surgery..

I keep forgetting to update this thing. Sorry. :/ On January 3rd Ella had surgery to originally take out the stitch and the skin around it that wasn't accepting it. But when Dr. I got in there he found that the infection had spread all the way up to the implant itself so they had to take everything out but the electrodes. We ended up spending Friday through Monday in the hospital so that she could get IV antibiotics to fight the infection. In the hospital while she was still in the OR room, they put in a picc line so that they didn't have to stick her over and over for the antibiotics. The original plan was to stay in the hospital until atleast Sunday then go home with the picc line and get antibiotics at home through the picc line for 6 weeks afterwards. Since she was responding so well to the antibiotics they said she didn't need the picc line at home. They took it out on Monday before we went home. I was relieved because I was a little nervous about cleaning and caring for the picc line. They showed me exactly what to do, but I was still nervous. This just affirmed my decision to not be a nurse or anything in the medical profession. Since I faint at the sight of blood or anything like that, it's already out, but this is another reason.
Since she has gotten out of the hospital, she has been doing great. The incision has been healing beautifully. There is still the red scar there, but that won't fade until later. The other side that still has the implant has healed and the red scar is gone. We had follow up appointments afterwards with the ID (infectious disease) doctors to make sure the infection is gone this time. She was on oral antibiotics for about 2-3 weeks afterwards and it seems the infection is gone. They are going to put the implant back in so we have another surgery scheduled. It's going to be on April 6th. Since we have been through this we know what is going to go on and aren't nervous. I am nervous about the healing though. I am just hoping the healing process will go smoothly and we won't have to deal with this again.
Since being initially implanted and activated Ella has been making more and more sounds. Her teacher and I are concerned though because she hasn't been imitating any words or anything close to words. She said she should be doing this by now. We are a little concerned, but not a lot since it is still early and she has been through a lot with her CIs. I am hoping that she will start after her second one is activated (again).
Shaun has been doing great in school. He had one good day, which I knew was all he needed, to get back on track. He has been great in school since. We are still going to have him evaluated by the psychologist. It is scheduled for Monday. I am a little nervous but I know if anything comes from it that it will only help him.

Tuesday, January 31, 2012

Big updates

I know it has been over a month since I last posted. There was some travel for the Holidays and then getting back to life afterwards. Nothing has really changed with Ella's incision since last time. It's still infected. I'm not sure if she still has a staph infection or if that has cleared up and it's a new infection, but it's still looking bad. Her ENT gave us a months worth of oral antibiotics to take over the Holidays. The incisions did look like they were healing and then they stopped and reversed. I don't know what happened but one day Ella woke up and they had started becoming puffy and red again. Now it is almost the end of January and I have had it. No more antibiotics and no more waiting. We have an appointment with her ENT this Friday. I am taking Nathan with me to make sure that something gets done. I am not taking home anymore antibiotics. I am okay if they have to admit her back into the hospital or if they have to go back into surgery and flush it out. I just want something done that will fix this. I am tired of putting her left processor on her shoulder. She should be able to have both of them on her ears. I am also disappointed with our ENT. Everyone that I have talked to that knows him has said how he is a great ENT and one of the best CI surgeons. And I thought how wonderful that is going to be. But now I don't want to see him anymore. I am just to frustrated and disappointed in how he has handled this.

In other news, Ella is doing great with her CIs. She doesn't mind wearing them in fact I think she actually enjoys wearing them. I know she's hearing more because she has been making sounds that she has never made before. I caught her the other day making a "th" sound. I was amazed. She wouldn't let me get it on video though. :( Every time I take my phone out to video her, she wants to play with it.

Shaun hasn't been doing so great though. Ever since we came back from Va he has had a rough time in school. He is not listening to the teacher and she says he just shuts down and won't listen. For the last two weeks I have been called to come pick him up. This last week he was only in school for 2 and a half hours. I don't know what to do anymore. I have tried disciplining him and nothing is working. I have taken toys and games away and I have sent him to his room for the rest of the night. He doesn't like it and it seems to work at the time, but then when he gets in school, it all goes out the window.  My brother-in-law keeps telling me he is just stubborn and that I am going to have to "break" him, but I have a feeling it is more than that. There are some little things that are (for lack of a better word) weird about Shaun. He doesn't act like a normal kid. I am not sure if there is anything there or if I am just thinking there is. I called the school district to see if they will do a full assessment on him. When he had speech problems when he was 2, they did one. The lady said that they needed it in writing and then they would proceed. So I just have to email them with some basic information and then we would start. A part of me wants there to be something "wrong" so that I will know how to deal with it and also so that I can say it's not me. I don't want it to be because I have not done my best. I have been working with him on what kind of behavior is not okay in school and I am hoping it helps. I have also started praying with him before school. I don't know why I hadn't done that earlier. It seems like such an obvious thing to do.

We went to Ella's ENT appointment and he said that she has been on enough antibiotics and he has go to in now and take out the skin on that area of the original incision and then close it back up and hopefully it will heal right. He sounded pretty urgent so he said it will be done Friday. She will have to be put out, but it is outpatient. I am hoping this will be the end of it. Thank you everyone for your prayers.

Friday, December 9, 2011

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

Thursday, October 27, 2011

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

Friday, October 7, 2011

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.

Tuesday, August 23, 2011

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.

Monday, August 22, 2011

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.