This summer has been kind of a weird one worrying about this boy. I think I have mentioned a time or two he had some stuff going on that had Eric and I pretty alarmed and anxious for a good chunk of the summer. He has always been really stable in his hearing loss, his audio gram not budging really much at all since his initial diagnosis at twelve months old. Right near the end of the school year in a routine hearing evaluation he scored significantly lower than what was typical for him. Not to concerned at this point we thought it was probably just an off day and his audiologist just recommended retesting in a few weeks once summer session started up again at Sound Beginnings.
Sounded good to us and we put it in the back of our minds for a few weeks.
Fast forward to 2 days after we get back from our Island Park trip and Eric gets back from Korea, he is retested and scores the exact same thing. Again much lower than normal for Luke. By this time we begin to panic a bit, his audiologist and therapists are both concerned and also noticing a difference in his attention and hearing in class and therapy. We set up a plan with them to start checking things off the list of what could be causing this sudden drop in hearing.
Step one is it his hearing aids? No we order him a new trial pair wait a few weeks and retest.
Again same score significantly lower.
We take him to an ENT at Primary Children's who does blood work and schedules an MRI.
In the meantime while we are waiting to check off a clear MRI Eric and I are trying to wrap the idea around our brains that Luke has reached a point where hearing aids just are not able to give him what he needs to hear and function anymore and perhaps the time has come for a Cochlear Implant.
His audiologist and most others involved seemed to think this would be the case and have always tried to prepare us that where Luke has been borderline hearing aids/ cochlear implant since birth this has always been a good possibility.
My mind is so unsettled by this.
While there is no doubt in my mind how amazing technology is and how grateful I am that that option exists it hurt my heart a great deal to think of him getting a cochlear implant.
For lots of reasons really the main being it's a whole new way of hearing and much less natural sounding than hearing aids which are just amplifying normal sounds.
If you have a profoundly deaf child of course this is ideal any sound is better than no sound.
But Luke has hearing still available to him, he has always thrived with hearing aids and my heart was happy at knowing that he was hearing the same thing I was in the same tones just with the help of hearing aids.
At the same time I was drastically worried with a new school year approaching quickly.
We have worked so hard, Luke has worked so hard to be where he is at today.
Kindergarten was an amazing experience and I can't tell you how proud I was to know my little severely hearing impaired guy was at the top of his class at the end of the year.
It may seem like no big thing but for him this was so huge.
I was terrified at the idea of starting into 1st grade with all that was going on and watching him struggle to keep up with his peers.....because we couldn't figure out what was going on with his hearing.
And then around the same time we get two new pieces of information.
One he retests again but now the score has raised not to where he was before but much higher than what he had been scoring these last few weeks.
Which leaves us hopeful for like a day.....thinking maybe it was just a fluke thing and whatever was going on is working itself out.
Then the ENT informs us his blood work comes back as showing positive for having fought CMV in his antibodies.
Meaning at some point in his life he has fought this.
Now my knowledge is still very limited but from what I understand CMV is very common but only affects those with very low immune systems.
We think we may have an answer as to why he is hearing impaired in the first place.
His doctor says it is very common in premature infants because of their incredibly low immune systems. And is also one of the leading causes to hearing loss in preemies. The problem is it creates damage to the cochlea and structures of the surrounding area and can be a degenerative condition. Meaning his hearing is likely to get worse over the years.
Suddenly the MRI becomes a much needed key to figuring this all out.
It will show damage done to his cochlea and whether it is likely to keep getting worse.
At this point we have no idea really what to think.
On one hand he seems to be doing better, his hearing evaluations are going much better and scoring much higher and in general just more Luke like.
On the other hand we are very concerned with what this positive CMV results could mean.
We had his ENT and two audiologists strongly suggesting to us to go ahead with the MRI we had scheduled for last week.
Just yuck I was dreading this day, because it involves a six year old having to hold still for almost an hour while the scan is done they recommend sedating for it.
First off can I just say how grateful I was for little George the monkey this day.
It's no secret my boy loves his monkey and it meant the world to my heart knowing that little monkey was bringing him comfort on a scary day.
We arrived at Primary Children's at 12:30 and didn't end up leaving until close to 6:00.
It was a long, traumatic, exhausting day and so hard on Luke.
He was a trooper but man there were moments that were hard to watch as his parents and left me feeling heartsick for those parents who have to watch their children suffer so much more than I had to this day.
Oh bless those children and their families, I can't begin to comprehend what they go through.
The moments that stood out to me the very most was one getting his IV.
Oh boy it was not fun at all, they missed the first time and had to try again.
And my little Luke was clinging to Eric for all he was worth his little cries of "they are hurting my skin", was breaking my heat.
And then waiting for the sleepy medicine to kick in was excruciating he was terrified and did not want to go to sleep.
He fought it for all he was worth but it was in that moment I found myself so grateful to be a mother.
And not just any mother but his mother.
He wouldn't lay down so he just leaned against me while I talked to him.
He was a little loopy and not making much sense but the only thing that seemed to help calm him down was the sound of my voice.
So I talked of everything I could think of....Halloween, where we would go for dinner, what he would pick as a prize when this stupid day was over, how proud I was of him.
Eventually those little eyes shut and we could lay him down.
We had an hour to kill before he would be done and taken to the recovery room where Eric and I could wait for him to awaken..
He came out of it just fine, starving but fine he hadn't eaten since 10 the night before so he scarfed down all the snacks I had brought him as we waited for the all clear to head out to our next appointment. We were meeting the ENT to go over the results.
Bless his little heart he could not keep his eyes open for the life of him while we waited in the ENT's office. He slept through trying to weigh him, taking his temperature and by the time they wanted to look in his ears he was good and grumpy at everybody and refused to leave Eric's arms even for something so minor.
And by this point my mama bear was out and I got a little snippy with the poor nurse who kept trying to wake him up to weigh him when can't she just go check down the hall with what the imaging people had got not a few hours before. Just leave my poor boy alone! At this point in the game I was so not in the mood for stupid things.
Thankfully by the time the doctor came in and agreed with me to just let the exhausted overwhelmed little guy sleep, I was in a much better mood to hear what he had to say with my sleeping Luke in my arms.
Could not have gone better.
His scan was absolutely clear of any structural damage and he had no reason to think it should get any worse as the years go on.
Combined with his most recent scoring in hearing evaluations he considered this very good news and the best possible outcome we could have received.
We still don't really know why the crazy results earlier on in the summer.
And of course we never know what may lie ahead but I think through all of this it allowed me to truly become okay with the fact that one day if he does need an implant I can more easily be ready to accept it.
I am just so grateful that day is not today.
We made good on our promise of a prize and it was amazing to see how a trip to Toys R' Us and the Spaghetti Factory cheered up our little Loubird and he was back to his usual bouncy happy little self within a matter of minutes.
Mikey the Ninja Turtle is happy as a clam and considers that day to be "so much fun"......hmmm....I guess he forgot a few moments of it:) But hey if all he remembers is his Ninja Turtle Prize, spaghetti dinner and his mom and dads undivided attention all day long...... well then yes it was a good day.
My Loubird how I love you little boy.
You have this amazing ability to weasel your way into everybody's heart.
In the scheme of things this experience was small, especially considering all that you have already overcome in life.
But man I love you, I worry about you, but above all I know that whatever life throws at you, you always come out on the winning side......stomping on everything that ever tries to get in your way.
Your smile shines, your big blue eyes twinkle and your infectious little personality radiates out of you.
Thanks for being mine little one.
