Cade made lemonade!

  
When life gives us lemons we make lemonade, right? Well, that is what Cade has done in the past 4 months.  As most of you know, we had to go to battle against the medical field because they didn't believe us when we said that Cade had a hearing loss.  We started noticing it when we was three and his speech just wasn't where it should have been and then we started paying more attention and noticed that he could hear but only when he was facing you.  We went to a doctor recommended by the school district after they performed a hearing test with the results that he had a moderate to moderate severe hearing loss and the lowest he could hear was 45-55 decibels.  Basically that means that a normal voice level was a whisper to him.  The doctor had us do an ABR, which is similar to a newborn screening when they measure the response of the brainwaves.  When we got the results back we were so relieved because it showed that it wasn't as severe as we thought and would do fine without hearing aids.  Of course we had fasted and prayed and were hopeful that this was an answer to our prayers.  He went to an early childhood education preschool and made some improvements but in January of the next year, so 6 months later, I knew that something wasn't right.  He was clearly reading lips.  When he would be talking to me and I was looking somewhere other than at him, he would touch my face and move my head so I was looking at him so that he knew that I was listening to him.  Why else would he do that unless that is how he "hears"?  Then a few weeks after that he got a REALLY bad cold and due to the fluid in his ears, the only way he could hear me was if I literally shouted in his ear.  So we started the process all over again.

This time we went to a private audiologist recommended by some friends of ours.  They came up with the same results as the school the previous year.  They told us that they need a recommendation from a doctor to get hearing aids so we went to the doctor that they recommended.  We went to this appointment with high hopes and I have never met a doctor that knew less about what he was talking about.  He obviously deals with people who have trouble breathing because he was asking if he wet the bed at night and snored because that could be sleep apnea.  He was trying to rule everything out but some doctors don't like to be told what to do.  We knew the problem and the solution and after all of that he said, well why don't we do the test again.  After that, we knew we needed to find a different route.  We decided to get some direction from our pediatrician.  He recommended an ENT that I had gone to for my sinus surgery a few years back.  We felt so much better with him and even though he suggested the ABR again and a CT scan we were more confidant in him than anyone we had been to.  We hated to put Cade through the ABR again because in order to measure his brainstem responses they have to put him under which means an IV.  Doing that to a 4 and 5 year old is no easy task and he remembered it.  The CT scan was going to be a pain too because if anyone knows Cade, they know that no amount of bribery will make him sit still long enough to get a clear and concise picture which meant sedating him for that as well.  Dr. Sikand wanted to get a picture of his inner ear to see if there was any physical damage or abnormality to see if maybe that was the cause.  We thought that we were in the home stretch at this point.  We were on the right track and ready for some answers.  We tried to do the CT scan in the office so we wouldn't have to go somewhere else, he sat as well as we could have asked him to but when you are 5 years old and a big machine is moving around your head with lights the chances that he won't keep his head facing forward and not look at it are slim to none.  The picture wasn't clear enough so we had to be outsourced.  The technician said that it sometimes takes a few months to get into a radiology center that does sedations but that she would give his file to the person in charge of scheduling his ABR in the mean time and then she would make the appointment for a scan after.  We got the appointment set up for the ABR which happened to be the second to last day of school and he ends up sick.  When there is fluid in his ears he can't hear as well which would have effected the test results so we had to cancel.  I was so upset because now we had to wait another month because they only do those tests on one day a month.  We hadn't heard about the CT scan so Casey called and let it be known that we weren't happy, I guess the ABR scheduler never gave Cade's file back so an appointment was never made.  We saw a glimmer of hope because it didn't take as long to get an appointment as we thought.  The morning we went down to the radiologists office, something was going on with the anaesthesiologist and we had to wait over an hour after our scheduled appointment time, which if I recall correctly we had to be there 30 minutes early.  We finally got called back and Cade got his kiddie cocktail and that took 45 minutes to kick in for the less then 2 minute scan.  Now we waited for the ABR.  It turned out that we had the same nurse and doctor as the year before and they were surprised to see us again.  Of course it was a nightmare to get the IV in and were relieved to get the test over and done with.  Now it was answer time!  We couldn't wait to get back to the doctor and have him authorize hearing aids.  

We made the appointment for as soon as we could because the results had to be evaluated and summarized by the neurologist.  We are waiting in the room and Dr. Sikand comes in and says, "Great news!  He can hear normal!"  I know Casey's and my face just dropped.  How could this be?  We know there is a problem and we know that he can't hear very well.  I'm sure the doctor was thinking what is going on with these ungrateful parents?  I just told them their son could hear and they don't seem to happy about it!  This was supposed to be the tell all test that told us everything and instead it told us nothing.  He was going on about how he could put tubes in but that there really wasn't very much pressure in his ears.  Casey finally spoke up first after the shock kind of wore off and said, "There's something wrong.  We know he can't hear.  He reads lips and has to see you looking at him to talk with him."  Then Dr. Sikand did the best thing imaginable for us but we didn't know this at the time.  He sent us to a place called T.A.L.K.Specialists.  It is a speech therapy office that has audiologists there as well that specialize in the deaf and hard of hearing.  That is where we met Jill.  

Jill was the answer to our prayers.  On our first visit we explained what we had been through and showed her all of the test results we had gotten.  She did a few tests and had to agree with us, even though he wasn't fully cooperating, that he did have some type of loss.  We scheduled to come back the following week and found that the results were similair to those of the previous audiologists.  She still had more tests and so Cade went back another week.  She then said that she was going to order the raw data from the ABR to see exactly what was they read and she would get back to us.  She called us the following week when we were in California on our way to Craig and Taylor's wedding to tell us that she could not believe that the results were summarized the way they were l because there was little or no brain response at 40 decibels.  (Normal conversation level is 30-35)  Apparently this happened because the neurologists that summarize the results don't have faith in the technicians performing the test at the hospital we went to so they just rounded up.  We then had the option of going to the neurologist office to do the test again or she would summarize everything that she found along with the raw data and send it to our ENT recommending hearing aids.  We had already waited so long that we didn't want to go through that again only to get the same results so we asked that she send the information to our doctor.  When we met with Dr. Sikand he was blown away by what Jill had found out.  He couldn't believe it and immediately said that based on this information he needs hearing aids.  He looked at us like, are you ok with that?  I think most parents aren't too excited about their child getting them but we just said, yeah!  Ok, how do we get them?  I have to admit that had you asked me a year ago at that point I would have been less enthusiastic about it.  As a parent, I didn't want him to become the object of ridicule on the playground, even though I knew it was best for him and would do anything for him.  We decided instead of going through his office to get the aids we would stick with what worked for us.   

We went and got the molds taken and two weeks later on September 29th Cade got his bright green hearing aids.  We were so nervous that he wouldn't want to keep them in because he has never liked to be restrained, for example, only likes to hold hands on his terms.  The first week, he did great.  We were told that it would probably take a month or two before he really liked them and got used to having them in all day.  That first week, he would take them out every once in a while but when the tv went on he automatically asked for them.  The first day, I told him that I loved him in a normal voice and he looked up and said he loved me too.  I of course started crying because he would never have heard me with out them speaking that softly.  We went back after two weeks and Jill could not believe how well Cade was doing.  She said that it took him only weeks what it takes some kids months.  My biggest fear was that Cade was not going to like them in his ears and just rip them out and chuck them.  Just so you know they have a great warranty and you can purchase insurance on hearing aids.  When he took them to school for the first time I went with him and showed his teachers how to put them in and there was one kid that asked, "What the HECK are those?!"  Mrs Roberts did a great job explaining that they weren't toys and nobody should touch them.  I didn't tell her this but Cade was worried about other kids taking them.  When she was explaining it she said, "You know how I'm always saying 'CADE, CADE' to get his attention?  And all the kids nodded their head and said yes.  It was cute.    

Cade has had the volume turned up 4-5 times and is talking so much better and just enjoying life.  Most kids are curious as to what those green things are in his ears but as soon as you explain that they help him hear better because he can't hear as well as them then they accept it and that's that.  He never complains about them and they truly have blessed his life.  People actually understand what he is saying now and his attention span has greatly increased.  He goes to speech therapy at school twice a week and he also goes to TALKS once a week for one on one time.  He takes such good care of them and when getting in the bath, he is so good about remembering to take them out so they don't stop working.  One thing that was so cute was that first week he had them he recognized how much they helped him that he said, "I can share these with Claire!"  What a great little boy.