Thing may not ever be the same

I've got a lot to say and absolutely no pictures.  This is just a journal entry and for anyone wanting to know what's going on with Matthew because I'm kind of not in the mood to describe it to everyone individually right now, if you know what I mean.

Matthew was born with Congenital Cytomegalovirus (CMV) meaning he contracted cmv while in the womb.  When he was born his left ear failed the newborn hearing screening.  They said it could be a fluke because he also had severe bacterial infections (that's why we went to Primary Children's Hospital for 2 weeks).  They said he would fail the test if he had fluid in his ears.  When we got out of PCH we saw an audiologist.  She ran a bunch of tests and determined that he was profoundly deaf in his left ear permanently and that it was sensorineural, meaning his inner ear was perfect but his brain wasn't getting the message.  It was deemed unaidable at the time.  He had it tested other times after that, always the same results.  Above average hearing in his "good ear" and profound hearing loss in the left.

I started teaching Matthew (and learning myself) sign language right away because I had no idea how it would effect his speech to have unilateral hearing loss.  By the time he was 15 months he was speaking sentences and he completely dropped all signing.  I didn't resist because he was talking so good and had a huge vocabulary.  He was talking sentences before he could walk, which made for some funny looks sometimes.  His balance has always been the most effected thing from his hearing loss.  He walked around 17 months finally and I thought life was heaven!

January 2012 , when he was 4, we finally learned details about a BAHA hearing device and how it could transmit sound waves coming at his left side through his skull to his good ear.  We immediately got one and he has been wearing it on a headband for preschool, now kindergarten, and church ever since.  It was wonderful how he was more aware of sounds all around him.  He would become eligible when he turned 5  for a surgery to permanently implant a titanium stud to attach the BAHA directly so he would no longer need the headband and the BAHA would function even better.  I asked him repeatedly if he wanted the surgery.  Sometimes he would say he did but  usually he said "Maybe when I'm 6 I will be ready mom.  not yet"  So we didn't push it after he turned 5 and I thought we would wait until next summer, since that would be the easiest time to do it to give downtime and recovery.

Labor Day, September 3 2012:  that night he wakes up vomiting around 4am.  We had just had a big day with my parents floating the Buffalo Creek and catching fish and bugs all day.  When we got home kind of late he scarfed a whole bunch of general tsao's chicken.  I thought maybe he ate too much spicey chicken along with too much sun and made him nautious.  He didn't have a fever.  He acted really spacey and wouldn't do anything I asked when I tried to get him to brush his teeth, go potty, get back in bed, ask if he needed medicine....I thought he was just dazed in the middle of the night and out of it because he didn't feel well.  The next day he had THE HARDEST time listening to me!  Or so I thought.  It was like he wouldn't do anything I asked until the 3rd time I asked it really loud and threatened him that he would "lose a privilege."  He went to school but seemed to have a hard time at first according to the teacher.  Then he came home off the bus normal and happy and seemed alright all evening.  But I had my suspicions about his hearing.  The next day, Wednesday, he woke up completely unable to hear.  By this time I knew I needed to get him to an audiologist ASAP.  Curt had to work that day so I needed to be able to stay in Rexburg so I could take Curt to work and still have the car to get Matthew where he needed to go.  I called his pediatrician and had them refer us to the audiologist here since we usually go to one in Idaho Falls.  They couldn't get us in until 2:30.

First tests were done to rule out fluid or wax in the ear blocking the sound or making it hard for the ear drum to work.  Nothing was amiss that way so then he put him in a sound room and tried to find out how severe it was.  I mentioned that Matthew was born with CMV and he immediately said this was probably viral as well and he sent us upstairs to the Ear Nose and Throat surgeon.  The ENT checked him further and prescribed a steroid to try to reduce damage done by a virus and hopefully give a chance for reversal.  Also he scheduled us for an MRI at the Madison Hospital to be done on Friday (today).

This morning we go to the MRI and they told us that they couldn't do it there because they only do conscious sedation there (meaning relaxed but awake).  They don't have the equipment for a fully sedated MRI, and they only do conscious sedation on children 12+  because they need to be able to trust that they will hold perfectly still.  And they said since he can't hear they can't communicate with him while he is in the machine to tell him to hold still if they need to.  The worst part about that was after telling the anesthetist that Matthew couldn't hear he started talking to Curt and I like we were the ones that couldn't hear.  Talking really slow, repeating things over and over and saying "do you understand what I am saying?"  It was so annoying.  So they sent us away.  We went straight from there back to the ENT hoping they were already open since it was early in the morning.  Luckily they were.  I told them what the nurse anesthetist told us.  The nurse that set it up rolled her eyes and said it would have been nice if they had mentioned the age restriction when she set up the MRI in the first place.  As they had his date of birth and everything.  So she called EIRMC in Idaho Falls, who does have the better equipment to get us scheduled there.  But they can't "fit us in" until monday @ 6am.

So we still don't know exactly what is going on for sure with Matthew.  The ENT mentioned that if it is viral there could be some inflammation of the brain causing the hearing loss.  If they discover that there is swelling or fluid in the brain they would need to treat that immediately.  This is all very time sensitive and I'm really frustrated that nobody seems to feel the urgency that I do.  But he's not their son.  The longer his condition remains the more likely it is to remain for life. The BAHA no longer helps because there is no good ear to pick up the vibrations of the skull.

The good news is that Matthew is taking everything SO WELL.  He is the best kid in the world.  He communicates just fine with us.  It's only frustrating for Curt and I when we have something complex to tell him that we normally could just say.  Luckily I was prepared a little bit by learning some signs and teaching them to him when he was a baby.  They are slowly coming back to us.  It makes body language easier to have some familiar signs to work with.  And he is pretty good at reading lips.  And if you talk REALLY LOUD and slow he can normally get what you are saying.  Sometimes.  It's hard to remember to talk so slow for me though, because I have always talked really fast and not enunciated very well.  I guess we all have some things to learn from this experience to not only change our way of life, but improve it.

Although no doctor has verified it, I am pretty convinced that it is his old CMV.  I researched it a lot and it's the only thing that makes sense.  And I can't just disregard motherly intuition.  Hopefully he will be among those that have their hearing fluctuate and he may not always be this profoundly deaf.

I have cried and cried over it though.  So much grief when you think about the details of the loss.  Just don't ever take for granted what your baby can hear.

Hopefully it's not permanent, but I don't know.  So I'm just preparing myself to move forward and do what I can to give him the best opportunities possible.  Like with school.  No matter what things will be fine and Matthew will always be an incredibly smart, like-able, friendly, successful person.  We will take it a day at a time.

If you're someone that we see often with kids, or family, I'd just ask that you let your kids know that Matthew can't hear them and try to tell them to tap his shoulder or something to get him to look at them before they try to talk to him.  He'll catch on to really good lip reading before we know it.  Obviously he still loves to play with his friends and his sister.  The world can't all of a sudden learn sign language to communicate with my son (although I wish it were that easy), so he'll have to adjust a lot to fit in.  Right now the hearing loss is too profound for hearing aids.  Hopefully that improves and we can get him aided at least in this right ear and have things almost back to normal.

If you want more detailed information about CMV and what happened to his hearing I found this article very informative.  http://www.medicalhomeinfo.org/downloads/pdfs/cmv.pdf

This was just kind of meant to be a journal entry for me so I don't forget all of the details, but also to let friends and family know what's going on.  we're fine, just adjusting.  Thanks for all of your thoughts and prayers.