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.