The Rori Story...

or maybe Tale, Journey, Battle, Adventure....

This post is a long time coming, but I kept thinking maybe we were getting to a conclusion along the way and thus I would wait and post when we had an ending to the story. Well, I'm now posting as the story is probably just starting. I've decided to write this now in such detail because part of the reason I keep this blog is to have a record or journal of our family. We've printed out a few blog books now and they really are such an amazing thing to have. So this is a record for Rori for someday in the future when she wants more details about this time in her life. The other main purpose of the blog to keep our families and friends updated. But occasionally I read friends' blogs or get passed on to friends of friends' blogs that address something we can relate to and it provides information, guidance, etc. So, if any part of our Rori Story can do that for another family so they can more smoothly navigate this path it is just an added bonus. So excuse the long story but it has been just that - LONG.

Back when we were leaving Salt Lake I opted to take the kids in for their annual check-ups a month early so we could get it done before the chaos of moving and get Kai all the shots he needed to register him for school in Las Vegas. At that appointment I told the pediatrician that I was a little concerned that Rori didn't have a very large vocabulary. She reassured me that she was in the normal speech range for an almost 2-year old, but said to follow-up with it later in Las Vegas if I still had concerns. I really liked that pediatrician by the way.

After a month or two of living in Las Vegas (around September) we found a pediatrician and I decided to take the kids in so we could meet him in person and establish ourselves as patients, get the kids flu shots, and check to see if Rori had any fluid in her ears. At that point I had convinced myself though the help of the Internet that Rori might have fluid in her ears that was affecting her hearing and thus affecting her speech. We met with the pediatrician and he did a test on Rori's ears (It looked like an ear thermometer) that determined that there was no fluid in her ears. We spent about 5 minutes with him and I think Rori said about 5 words the entire time. He told me her speech seemed fine for her age and to just give her time. I wasn't particularly impressed with this pediatrician and have since established another one, for the record.

I left not feeling very reassured since I wasn't sure how someone could determine that her speech was fine after just meeting her and not hearing her say very much. But I had now had 2 pediatricians tell me she was fine and to just relax about it for awhile. So that is what I tried to do for a time...

Right before Christmas I got paired with another girl from Church to work on a service assignment of sorts (she was my new Visiting Teacher companion). In our first phone conversation it came out that she is in school studying speech therapy. I told her about Rori and what the doctors had said. She told me about the Early Intervention Program here where I could take Rori to be evaluated for free by Child Development specialists including a Speech Therapist. I thought this was brilliant because if nothing else she would be seen by someone who would really know about speech that could tell me if I was being a crazy Mom or get us on the right path if there was an issue.

So after the holidays I took Rori to the Early Intervention screening. A speech therapist and a child development specialist played with her and asked me a ton of questions. After quite awhile we all sat down together and discussed what they had observed. Both agreed that Rori was on the lower end of speech for her age, but the issue was that she was still considered to be in the "normal" range. They also said that it is common for children with older siblings to be a bit slower with language because the older sibling often does most of the talking for both of them- especially if the older sibling is very verbal. Well, Kai was super verbal super early. After much discussion (and perhaps a little diplomatic persuasion on my part) it was agreed that they would qualify Rori for Early Intervention with the idea that perhaps some more aggressive speech therapy now would allow Rori to move forward faster with her language.

So starting in February Rori has been having a Speech Therapist come to our home 2 times a month and a Child Development Specialist come to our home an additional 2 times a month. They bring toys and games to play with that help Rori work on her speech and we all think it is great. They also teach me ways to make Rori use more language. Most of them are things we could think of on our own, but how often in the busy routine of life do you actually stop to think of the way you are wording your questions to your kids?

Basic Example-
Adult: Do you want a drink?
Kid: Yes

Adult: Do you want milk or water?
Kid: I want milk please.

At that early intervention evaluation I asked if it might be a good idea to have Rori's hearing evaluated again by an audiologist as well. Some may remember the story of Rori's birth where she failed the initial newborn hearing screenings a number of times. At about a month old we had taken her to an audiologist that had done a more in-depth ABR hearing test which Rori had passed. They told us that she had failed the initial newborn OAE tests due to fluid in her ears. So when we took her to the 1st pediatrician here in Las Vegas I had begun to wonder if Rori was having chronic fluid in her ears thus affecting her hearing and in return her speech. But when he determined that she didn't have fluid that went out the window. The people at early intervention said it was probably a good idea for no other reason than her history as an infant paired with the speech concerns now.

A few weeks later Rori and I visited the audiologist. She was super nice and I liked her at once. The first routine test she did was the same test the 1st Las Vegas pediatrician had done to test for fluid in Rori's ears- only with a bit higher level machine. The results came back that Rori's ears were full of fluid. Rori had had a cold a few weeks before which could cause fluid, but I wondered if we had missed the boat on the fluid back in the fall. So, at that point she didn't even want to do any further hearing testing because the fluid would alter any results. She then sent us on to see an ENT to get to the bottom of the fluid.

So about a month later we visited the ENT. We wanted to give the fluid plenty of time to go away since the cold from now almost 2 months before. The ENT looked in Rori's ears and said that not only were her ears full of fluid but that it was thick syrup like fluid that he referred to as glue ear. Because it was that consistency he believed that it had probably been there for some time and it was likely that Rori might have been having glue ear on and off much of her life. He explained that that would make it sound like she was underwater most of the time which would explain her speech being affected. The plan was to come back in another month and if it was still there at that point she would have tubes put in (which we've now learned is one of the most common and quick and easy childhood surgeries). The strange part was kids that need tubes usually have lots of ear infections and Rori has only ever had 1ear infection that we have know about.

I hated to wait a whole month more at this point but we agreed and actually set up her surgery date for the same week as her next appointment so as to not waste any more time. So a month later we went back and there was NO fluid in Rori's ears. I wanted to cry and I may have. No fluid = No surgery. Quickly we called back the original audiologist and told her that there was no longer fluid and begged to get an appointment ASAP to have Rori's hearing tested before there might be fluid again. She got us in that week and we started back at step 1.

So at that appointment she verified that the fluid was now gone. Then she gave Rori an OAE hearing test (also looks like an ear thermometer but Rori had to sit relatively still for a good few minutes). Rori was a trooper and cooperated better than I could have ever hoped for a 2-year old. Rori failed the OAE test is both ears just as she had done repeatedly as an infant. She then was taken to a hearing booth for some behavioral hearing tests. She responded well to some random sounds they played in the booth and repeated words the audiologist asked her to over a microphone spoken in to the booth. The audiologist said that due to failing the OAE she suspected Rori may have some hearing loss, but due to how well she did in the booth and just in general conversation she suspected that it was probably a slight to moderate loss. She told us that Rori needed to have another ABR test (same thing she passed as an infant). The ABR test would be able to give the most reliable reading on Rori's exact hearing. The problem is you have to be perfectly still for the ABR test with your eyes closed for quite a while. Since young kids can't do that she would have to be sedated for it at a local Children's hospital.

So, on April 6 (which happened to be my birthday) Lance and I took Rori to the hospital for the ABR test. Grandma Whitney was on Spring Break so they came up and helped get Kai to and from school which was great. Rori was once again a trooper. We stood waiting for over an hour at the check-in desk with 2 year old Rori who hadn't been allowed to eat or drink anything and an 8 month pregnant me. The first time they tried to put an IV in Rori she screamed and cried. But the 2-4th tries she just laid there as though she were accepting her fate. It was Lance and I who were highly agitated that it was taking them that many tries. Somewhere in the middle of the attempts they tried some sleepy medicine to see if they could get her to be still without an IV. It only made her a happy drunk. They finally succeeded in getting the IV in a vein in her little foot hours later. She was really a fabulous patient. They administered the test and then sent us home. It was a long day for us all and we were glad to have it done.

A few days went by and we heard nothing. I finally call the ENT's office (we had to go through them to schedule the test) to try and get the results. Finally the ENT (the same one who had seen Rori for the multiple fluid visits) called with the results. He said that the test showed that Rori had “significant hearing loss in both ears” and was “not talking” as a result. He seemed surprised when I reminded him that Rori is in fact talking and that these results seem very confusing to us because we know that there is a lot that she does hear. I was very frustrated that we had met the man twice and he obviously couldn't remember Rori. We discussed how she passed an ABR test at 6 weeks old which he had no answer for. He also went on to say that her results indicated that she might be a candidate for a cochlear implant. Thus, if Rori had been an infant we would have believed that she was deaf due to these results. He wanted us to now meet with someone in his practice who works on the other end of Las Vegas whom specializes in significant hearing loss and cochlear implants.

Fortunately I was able to get an appointment with the specialist at the end of that same week. In the first 40 seconds of the appointment he spoke with Rori asking her a few basic questions which she promptly answered. He then studied his paperwork and then looked at me and announced that the test results did not correlate at all with his observation of her. He has since sent us a letter that documents all of this. We were of course relieved but also highly frustrated that we had put Rori through all of that for nothing that provided us any new information. We were again back at step 1.

I spent the next few weeks battling the hospital where Rori had the test. I wanted a copy of the test data (not just a conclusion summary) which proved to be nearly impossible to obtain for no good reason. I wanted to see if there was anything that was accurate and helpful for our audiologist, to understand where things had gone so wrong, and to make sure that another family wasn't incorrectly told their child was deaf due to the same error. At this point we still don't have acceptable answers. The doctors can't seem to agree on the the reading of the test which doesn't help us at all. The hours of phone calls on this have been many and eventually my energy had to be placed on moving forward with Rori as this seemed to be getting us no where.

So after consulting various resources it was decided that the next step with Rori would be to go back to the audiologist and attempt a behavioral hearing test. They don't usually like to do these with kids under 3 years old because it is often difficult to get younger kids to consistently cooperate for accurate results. But Rori would be 3 at the end of the summer so we were all hopeful. She's now done the behavioral hearing testing 2 times with 2 different audiologist. They put her (and a parent for comfort) in a little sound booth and played games with her to see how she responded to sounds at different levels. They also had her repeat words that they said through a microphone.

Due to the fact that she consistently fails the OAE tests they feel that she does have hearing loss. But due to her good responses with the behavioral hearing tests they continue to believe that the loss is in the slight to moderate range. As she gets older (and more willing to cooperate) they will continue to test her and try to better determine her hearing levels. At this point we guess that she might be struggling with the higher frequency sounds. For example, it might often be hard for her to distinguish between sounds like "fun" and "sun". As a result when Rori says a word like "swim" it might sound more like "wim" because she hasn't been hearing the "S" sound.

The audiologist suggested that we try hearing aids on Rori this summer to see if that helps her with hearing those sorts of things more clearly and thus pronouncing them more clearly. She guessed that the aids would be about $2,000 to $3,000 for each ear. We have now learned that very few insurance companies (including ours which is a major one) cover hearing aids- even for kids where it may be key to their language development which has life long affects, and who will need new ones about every 3 years. We were all about trying hearing aids to see if it made a difference for Rori but that seemed like an awful lot of money for something that might help and she might or might not even be willing to wear (she is 2 after all), or could easily break. It's the kind of thing that can make you a little sick if you think about for too long.

I immediately went back to researching to see if there were any programs out there for kids that might be able to help us. I eventually had the thought to write to a Mom in our area who is part of a support group for kids with hearing issues to see what other families have done- why reinvent the wheel? She connected us with this loaner hearing aid program. We were ecstatic to be on track to get Rori a free loaner pair that we could try for the summer.

Then, I got a phone call from someone else I had spoken to earlier in my quest. She told me that a hearing aid company was coming to Las Vegas and wanted to give away 100 hearing aids to kids through their foundation- the Starkey Foundation. She asked if we might be interested in being one of them- Ummmm..............YES!!!!! So we filled out paperwork, had another evaluation done, and had ear molds taken as quickly as possible in the 2 weeks before Zuri was born. They told us that the hearing aids would be available on June 18 and they would be in contact for the details. It was a huge relief to have that all taken care of in time to focus on having a baby. So we took a break from it all for a few weeks which was wonderful.

The week before June 18 we hadn't heard anything yet about where or when to go for the hearing aids, so I ended up calling and following up with a message. A day later I got a call with instructions. We were to be at the Las Vegas Hilton at 9am and should expect to be there until mid afternoon which was a bit surprising. There would be lunch served and a special program. Not what we were expecting but ok.

The big day finally came and the whole family took off for the Hilton. Zuri was just almost 4 weeks old so I couldn't really be away from her for most of the day. As we walked in the hotel there were 2 directional signs. One was for the Starkey Foundation and the other was for the Daytime Emmy's. We laughed at how Vegas we were at the Hilton on the Strip with the Daytime Emmy people. We ended up waiting in a fairly long line to check Rori in with lots of other families. Then we were sent to a huge ballroom where, due to Rori's paperwork, we were directed to sit in the second row from the front. I think they may have had the kids who were getting hearing aids for the first time sit up there. The room was decked out with balloons and huge photos from other places they have done such donation trips all around the world. So there we sat and waited...and waited...and waited. Did I mention that we had a 4 week old, a 2 year old, and a 5 year old. The kids were actually troopers but it was a long hour + of sitting there waiting. Thank goodness for the IPhone movies once again.

So finally what appears to be news crew and other various media type people start appearing in the room. Not just a few, but quite a large crowd. Then the room starts to buzz as a group of people was brought in on the other section of the front row seats. Apparently, some of the big names from the Daytime Emmy's (maybe 20 people) had come to be part of the Starkey event. A large portion were Soap Opera stars, but there were a few faces from other shows that I even recognized like Marlee Matlin, Wayne Brady, Sherri Shephard (the View), Susan Lucci, Ace Young (American Idol)and Kyle and Chris Massey (Disney/ Dancing with the Stars). Here is a link to the Press Release: http://www.starkeyhearingfoundation.org/content/files/June2011/phpFQwEoU.PDF

There were some speakers who shared things like:
-Hearing loss affects 1 in 10 Americans, and 70 million children worldwide, yet many do not have access to the hearing devices that can help.

-The Starkey Foundation now delivers approximately 100,000 hearing aids annually through hearing missions in countries stretching from the U.S. to Vietnam.

-Since 2000, the Foundation has supplied more than 500,000 hearing aids to people in
need and is striving to achieve its goal of distributing over one million free hearing aids in this decade.

Then they started calling the kids up by the numbers they had been assigned. On Rori's turn she was directed to sit in this leather barstool and we as a family gathered around as they put the hearing aids they had made for her on her. While doing this each of the families were greeted by some of the "famous" people who would come over and meet us and ask questions about Rori. While this was going on the mass of media people were calling out instructions about where to look, stand etc. as 5,000 flashes went off. Rori seemed to be a popular target as she was one of the youngest kids recieving aids that day. So we got to meet Marlee Matlin, Sherri Sheppard, and Christian LeBlanc (The Young and the Restless). I had a nice talk with Sherri Sheppard who seemed genuinely interested in Rori. She even left the flashing cameras to take a peek at Zuri in her stroller and tell me about how she is currenlty undergoing infertility treatments. I'm still trying to track down a better picture of Rori with her, but here is a really bad one from Lance's dying camera phone. The other pictures are from the Starkey website and are from right after they first put the hearing aids on her. Kai is such a cheeseball in these but the media people were encouraging him. :)







We went to two more staions after that where they fine tuned the hearing aids and taught us about how to put them in and care for them. At the second station Christian LeBlanc (The Young and the Restless) was assigned to us.



He was chatting it up with Lance as I was attempting to focus on what the foundation people were teaching us about the hearing aids. All of the sudden I hear Lance say to him "So..I guess you are one of the famous people then?" And I hear him laugh and respond "I'm on the Young and the Restless". I had to look the other way and try not to laugh out loud. Later we learned that he's been on that show for many years and has apparently won a bunch of daytime emmy's. Sorry Mr. LeBlanc - you were very nice and we are grateful that you are using your fame to promote a good cause.

Rori did start to complain about the hearing aids at one point but the lady with us at the time said that it was a horrible environment to get hearing aids with the huge loud room. Plus we learned that sometimes their little ears have to get used to the molds being in there. Fortunately, shortly after Rori started to complain we were directed to the final table which was full of build-a-bears. Rori got to pick which one she wanted and was once again happy from that point on. The cutest part about the bears were they each came with their own hearing aid. Here are 2 pictures of Rori happy as can be with the cheerleader bear she chose. She is wearing the hearing aids in these and her bear is wearing its aid in the second picture as well.





Rori has had the hearing aids for 3 weeks now and so far so good. She hasn't really complained about them again and goes around showing everyone her "pretty ears". Truthfully you can barely see them when they are in because they are mostly clear which from a vanity standpoint is kind of nice.






She does seem to be saying some things more clearly as time goes on which is super exciting but we expect that it is going to take some time. We suspect that she will need to hear things better for awhile and then learn how to say some sounds that are new to her. It will also probably mean breaking some habits that she has formed. We're excited to keep pushing forward with speech therapy and see if the aids really do make a difference. Mostly we are very grateful to the Starkey Foundation for giving us this opportunity to try out hearing aids on Rori. Really what an amazing gift to give kids the opportunity to have sound and thus language opened up to them. So now we finally move on to the next chapter of the Rori Story and we're excited to see where it goes from here.