We have our activation date....

Got a letter in the mail. It has all the upcoming dates for Molly's activation and mapping sessions. In addition to these sessions, all in Birmingham, we will also be traveling there for speech therapy...so our once a week trips will now be as many as three a week to twice a week for awhile. While I dont look forward to all the driving, I am thrilled to know the day that Molly will truly hear for the first time. Her first activation session is July 29 and the second activation session is July 30. We plan on video taping the entire thing and will post it so that everyone can see this transformation...good, bad or otherwise!!

Had a great day today. Molly has learned to accept the ball park as an acceptable second home. Both boys played great today, then off the the pool and then a friends house to watch Detroit kill the Penguins in Game one of the Stanley cup.

Off to bed.

Summer is here... let the CI countdown begin...

Well, Summer has finally arrived and even though we have just as hectic a schedule as we did when school was in session, at least it is a different kind of hectic and different is good!

We are all set for Molly's CI surgery in July and have a pre-op appointment coming up in a few weeks. Until then we continue with our weekly speech appointments in Huntsville and will continue with them all the way through the surgery date and after. We also will continue with speech therapy in Birmingham weekly ( we love our therapist there as well) and will be making multiple trips for mapping. I am already getting ahead of myself and getting all excited about the CI activation date...which will occur around three weeks after surgery. People have asked me about how Molly will deal with this incredible new sensation of hearing and all I have to do is remind them of what she has already been through in her short little life. I think being able to hear doesn't even compare with losing a parent or parents, foster parents, and moving to the states with funny looking, funny smelling people. She has come such a long way in a short time. I think being able to hear wont even register on her scale as a traumatic event.

We are knee deep in baseball camp and finishing up the regular season...then we will gear up for a big family visit and we are all very excited about seeing Robs side of the family. Robs brother and sister in law have never met Molly and so they have been gracious enough to travel to Huntsville from Montana with their three kids for a visit. Immediately after the trip, the kids head into VBS and then we are looking at the prep for Molly's surgery and all of that. Soccer camp starts will begin in August and then things get really crazy with fall baseball and soccer for both boys...oh yeah...and school. Robby heads into second grade and Jack finally starts Kindergarten. Molly will have hearing prior to preschool beginning and both her teachers are looking forward to having her in class!

Thanks again for all the kind words and comments!

We got our approval and surgery date

Well, talk about getting all wrapped around the axle for nothing! Tricare didnt even blink before they approved a bilateral implant for Molly. The hospital blew it again...not surprisingly. I asked them to just give me a call or email once they filed the insurance so I could stay on top of them....of course, they filed...and I didnt know about it. The sad part is that they had the approval on May 12 and didnt bother to call me either. The only reason I found out about it was because I happened to call them today just to check up on things. Of course, they didnt understand the authorization so I had to call TRICARE who was kind enough to fax the approval again. Tricare has been amazing so far. I know, Im shocked too....but they have been the bright point in this long process. So after the hospital decided to acknowledge that we have approval they went ahead and set up the surgery date as July 13. Molly will get both implants at the same time and we decided to go with Cochler brand implants over Advanced Bionics.

I would love to post more but I have been running around like nuts and have an exceptionally crazy day tomorrow.

One step closer.... she should be able to hear by the time school starts in the fall!

 

Another update

Okay...so it has been a week since we got back from our trip to see the Cochlear Implant surgeon. It was an extremely long day. Up early to shower and get the boys off to school so that we could be on the road by 7:45am and in Birmingham in time for our last speech appointment. We wrapped up with our speech therapist in time to just make it across town for the CT scan. They obviously have to make sure that Molly's Cochlea can house the implant and so we were really anxious to get that news back. The bad news is that they have to put her in this huge MRI machine and so they were all scheduled to sedate her. Because of the high probability of sedation, we were not allowed to feed her anything but jello and clear liquids until 9am and nothing at all after that after that. For a little girl who likes to eat constantly, I knew this was going to be painful for all of us. We got to the Radiology department and we had the best experience. The guy running the show, while I could tell he thought I was nuts, was willing to let Molly try to take the scan without sedation. She just had to lay perfectly still and I could tell that he thought we were just wasting time but was willing to give it a shot. Can you believe we put her in that machine and she did exactly what we asked her to do. She didnt move a muscle and it saved her all the time and pain of an IV and sedation. It was so great and Rob and I were really relieved. Following that appointment we had time to grab lunch ( something else we couldn't have done if they had sedated her) and drove back across town to meet with the surgeon. We walked in, filled out the new patient paperwork ( felt like I was taking the SAT) and waited to meet this man. What we were told is that we would have an hour to sit and talk to him about this procedure...what we got was completely different. He came in and sat for about 5 minutes, examined Molly's ears ( and we found out that she has another ear infection) and then he dropped this huge bombshell. He said Tricare would only approve one implant. I sat there dazed and confused. I knew I had called them ...even before Molly came to live with us and asked them the policy about bilateral implants and this was not their policy. I tried to respectfully relay this information to the man dressed in scrubs but he held to his guns. I finally said "Look, I know I have asked them this question before, and that is not their policy". He took a card out, wrote down his business managers phone number and told me to call her. In the meantime I called Tricare and confirmed their policy. No where in their policy do they state that they will only approve one implant and when I told this information to the business manager she immediately began back peddling. It was then that Rob and I figured out what was really going on. CI surgery is expensive...really expensive. Tricare insurance is not very good and if you are going to accept Tricare, you have to be willing to accept what they are willing to pay. The hospital, in an attempt to get off with as little loss of money as possible thought they would just do one implant and make it about the insurance company and not that they would potentially be losing a lot of money by doing a bilateral surgery. I can only assume that they thought Rob and I would just say"Oh, Tricare onoly approves one implant...well, okay". Anyone that knows us... okay, me anyway, knows that is not the case. We are getting two implants... if I have to wait tables at night or sell a kidney, we are getting her two implants. Yes Regis, that is my final answer. We were quickly rushed from the exam room and out of the office and told to wait about a week to ten days for the write up to be submitted to insurance. So here we are...waiting again...waiting to hear that the paperwork has been submitted so I can start harassing Tricare to get bilateral implants approved. He did agree to do both the implants at once and surgery will occur between June and August.

I will post more when I hear back about the insurance company. Thanks for all the great comments and support!

An update....late as it is...

Massive apologies for those of you still patiently awaiting updates all over the world. I think I admitted in one of my last posts that I couldn't keep up with this thing...so I thank the few of you left who have continued to check in.

Where are we in the implant process. Well, we have done our obligatory speech therapy...wrapped it up in about 5 weeks and have an appointment with the surgeon doing the implant this Thursday. They will do a CT scan of her ears to make sure that the cochlea is able to house the implant and then we will sit down for an hour with the surgeon and talk about what is next. He will write up his recommendations and submit it to the insurance company. Once that is done, we will schedule the surgery date. From what we have been told we can expect to get her a date in July/ August. But honestly, I have heard our insurance company is really good about approving this procedure faster than others...so it really could be June. We just have to wait and see. From that point, we get a surgery date. Three weeks after surgery, we activate the implants and that is when the hard work starts. Teaching Molly all the sounds that she knows and starting up with speech therapy again. She has proved to be just about the smartest little girl I have run across and the doctors and therapists who have had the opportunity to interact with her think she is going to do really well.

Pre-Implant Therapy has begun

So we are back from our first week of Pre-Implant Therapy. I spent the week studying the ear and rattled off how the ear works when we hear..to include the names of the bones that conduct sound as it passes through to the cochlea.....blah, blah, blah. Anything to get on with this process! We covered the ear, the types of hearing aids and implants, the types of communication, different kinds of hearing loss...audiograms.., what the parents roles are for therapy...standard stuff. I knew about 95% of what she told me and picked up some new information as well which I found really interesting. If you have never studied what the ear/ brain does to understand sounds and speech you should check it out. IT is really amazing and something I know that I take for granted.

It looks like the hold up on our end will be Insurance approval which can take up to 30 days... I will start calling them as soon as they submit the paperwork. My plan is to become Tim Robbins from Shawshank Redemption and call them constantly until they move us along. If everything goes as planned we could have at least one ear done by July and hopefully both.

We will be heading back next week for more parent education. I do love her therapist. Molly is in good hands. As soon as I graduate from Cochlear Implant Therapy class we will be heading back into therapy with her original local therapist who is also really good...and we will stay with her until they force us back to Birmingham.

Day Two - Speech Eval in Birminham.

Well, what a crazy day. I had to get all the kids up, fed, dressed and out the door by 6:45 so that I could jump on the road to Birmingham by 9am. Those who have ever seen Jack, my five year old, in the morning know that is is not an easy task. However, we managed to get it done and I arrived for our speech evaluation 5 minutes before our appointment. I wont even mention the number of laws I broke in order to get there on time.

The speech eval was mostly questions about her development in all areas...speech included. Both Speech Therapists thought that Molly was exceptionally bright and cognitively right on track. Any delays she had in other areas were solely due to her not being able to hear. They hold out great hope for what the implant will do for her and while they cant assure me of the level of success she will have, they feel that shooting for mainstream kindergarten is not something that is too far fetched.

So we left knowing that the next step was a few months ( three to four ) of pre implant therapy. That means we have to agree to bring Molly to Birmingham once a week until the parents know everything that the therapists and doctors want them to know. This process usually takes three or four months. However, due to the number of hurdles and struggles we faced in trying to get her in and tested I had already studied the different types of hearing loss, am well versed in reading an audiogram... ( at least good enough for someone who isnt a speech therapist or audiologist), know the type of hearing loss Molly has and how to describe how a person hears complete with drawing a diagram of the outer, middle and inner ear. I guess I figure if I had to know enough to do eye surgery in order to fly nights in flight school I may as well become an expert on the anatomy and function of the ear. All of this information is what they are looking for the parents to know prior to surgery and I think I proved that today. I've also reasearched the two different types of implants that Childrens South offers and what makes an implant different than a hearing aide. So after throwing all of that out there, the therapist I spoke to said that she thought I would probably be able to go through their checklist in 6 weeks. I am determined to do it faster than that!

Once I got home, the therapist called to let me know that all the slots for therapists were full and that they thought that based on the information I already had that I would be able to wrap up pre implant therapy in about three weeks. So we went from three to four months to three weeks and I couldn't be happier. Finally the system is working for us...not against us. Im thrilled. But I will be studying like crazy for the next three weeks in order to learn and commit to memory everything I need to know in order to speed this process along. Once the therapy is complete, we will get a CT scan of Molly's ears, and then meet with the Doctor doing the surgery. We are attempting to get the insurance to approve a bilateral implantation... basically meaning an implant on both sides. Because our doctor doesn't like doing both at the same time, we will have to actually have TWO surgeries to get this done.

Im hoping that we will spend the next month in pre- implant therapy, than another two or three weeks getting CT scans and meeting with the doctor, than another two or three weeks for the insurance approval....so three months before her first surgery. In the meantime we will travel to Birmingham for therapy and continue our therapy here with our local AV therapist as well. If things go as planned, Molly should have both implants in, turned on, and mapped before school starts in August!

Our first therapy session is next Thursday. Here we go! Another step closer to the Implant process.