Gideon’s hearing has gotten worse.

Please forgive me in advance, because what you are about to read is my very very very limited understanding of how all this works…

So a week ago, we took our son for another ABR; he gets one every six months because of his genetic disorder. ABR stands for Auditory Brain Repsonse and to put it simply, it is a hearing test where Gideon has to be sedated. The last time he had this test done was back in November and we were excited because his hearing results showed then to be stable- meaning that he had not lost any more hearing.

But that wasn’t the case this time around. Unfortunately, you can see from the results below, that Gideon’s hearing has gotten worse.

The picture on the left shows the results from November and next to it are his results from last week. The “O” represents his right ear and the “X” represents his left ear. So according to the this, he has lost some hearing in his left ear, but more significantly in his right.

Before the ABR, the audiologist always does a Tympanometry to make sure there is no fluid behind the ear drums, as this can effect the results. Because Gideon had been sick in April, the tympanometry showed that he did in fact have fluid in both ears. So going into the ABR, we knew that it would possibly show a loss, but the audiologist explained they have a way to account for that and if need be, to go around it.

Because the ABR results showed such a great amount of loss, they did what is called a Bone Conduction ABR. And here’s how I understood that test to work…. A vibrating device was placed behind Gideon’s ear. That piece vibrates the bones in the ear and by doing so it stimulates the cochlea, while bypassing the outer and middle ear (where the fluid is).

From my understanding, and the sympathy expressed by the doctors in the room, the BC ABR verified the results of the first ABR. Meaning that Gideon’s hearing has gotten worse.  🙁

So what’s next?

Well, we go back in 3 weeks to see if the fluid is gone. If not, the ENT wants to do tubes. In the meantime, they turned Gideon’s hearing aids WAY up and he seems to be loving them! He’s actually wearing them for hours at a time, which is unlike him.

Hopefully, at our next appointment we can discuss our options regarding a cochlear implant. If his right ear is as bad as the results show, Gideon should qualify (especially because of his diagnosis).

Until then, we appreciate your prayers that Gideon would not need tubes. We want a healthy boy especially going into the Summer. Gideon LOVES the pool and would be in the water every day if we let him.

So yesterday was kind of crazy. Gideon was pretty sick 2 weekends ago and we felt fortunate because it did not land us in the hospital like last October. Thanks to his prescribed solu-cortef, he seemed to get over what ever virus caused him a 104 fever; and within 2 days he perked up and was back to his usual self-stemming, like nothing had ever happened.

We did notice around Tuesday of last week he was struggling with some congestion, but it was clear and I figured it was probably just allergies (poor kids take after their mom in this regard). Unfortunately, the congestion seemed only to get worse and by yesterday morning, I was concerned by his cough. I sought counsel from a friend who is a nurse and after talking with her, I decided to page Gideon’s pediatrician and his endocrinologist. They suggested we visit the ER. And so we did.

We were down one vehicle because Kevin’s (ahem..old) car was still at the auto repair shop. So while I was waiting for him to get home in my car, I decided to go ahead and pack some overnight essentials complete with pillows… just in case.

After an IV, blood work, and a chest x-ray, they determined that he has an upper respiratory infection as well as an ear infection. Thankfully none of this required an overnight stay in the hospital! We were more than happy to come home.

The funny part about all this is that Kevin and I were scheduled to give our testimony at a church in Allen yesterday at 4 pm. We left Medical City Dallas at 3:30 pm, met my parents in the parking lot of Home Depot off Hwy 75, exchanged our car for theirs (so they could take the kids back to our house), and we pulled into that church parking lot on two wheels with 1 minute to spare.

Thankfully they had worship before we went on, so we had time to catch our breath and praise the Lord that Gideon’s 2nd visit to the ER was not near as bad as his first.

Earlier this week, I was rocking Gideon in preparation for his afternoon nap. It had been a stressful day and my mind had begun to wander off into future events. When this happens, it’s never a good thing.

If it’s about my daughter, the future events are always positive- sports, school, marriage… but with Gideon, there is this impending doom that takes over and all I can think about is the suffering that is to come- more doctors appointments, hospital stays, painful tests,  challenges, hospice and the slow painful death that comes with his diagnosis.

As I laid him down and stood over his crib, I read the verse we placed above it before he was ever born..

“The Lord is with you Mighty Warrior.” Judges 6:12

Normally I read that verse as if it’s only for Gideon.  But that day I read it as if God was speaking to me. And in that moment my heart was convicted that lately I’ve been more of a mighty worrier than a mighty warrior.

How does this happen???

I’m certain it’s by no coincidence that my devotionals this week have all been in 1 Peter, where the key theme is suffering. This morning as I sat down to read chapter 5, these familiar passages came with fresh reassurance.

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7

I couldn’t help but shake my head in frustration. I wait soooooooo long to bring my cares before the Lord. I’m sure I’m not the only one. But why do we do this? The commentary in my Bible shed some new light for me. Regarding these verses it says, “Worry is a form of pride because it involves taking concerns upon oneself instead of entrusting them to God.” 

Ummm…Ouch.

I would like to think I have conquered this area of my life, but apparently I struggle with pride. But after all these years, it makes sense now why that verse begins with humble yourself. Humility is the opposite of pride. And if there’s a commanded in the Bible to do something, then that’s a pretty good indicator that it doesn’t come natural to us.

It’s tough to swallow that I’m being prideful when I worry, but that’s just what it is. My pride says, I can do this, I can handle this, I am strong enough… But when we try and “handle” things on our own it eventually turns us into worriers, not warriors. And when we worry, we are choosing to forgo the grace, peace, and freedom that comes with knowing Jesus.

If I said I was not prepared to have a son with a terminal genetic disorder, I’d by lying. The truth is, when I look back on my life I can see all the ways that God has been preparing my heart for Gideon, as well as the suffering that is to come. Scripture is clear, it’s not a matter of if but when we will suffer.  But no matter how long or intense our suffering is, in light of eternity, it’s short. And God has proven time and time again that He is faithful to restore, confirm, strengthen, and establish us (vs 10) when we experience suffering for His sake.

That’s why in all circumstances, we can give thanks. (1 Thessalonians 5:18)

But we will never reach that place of thanksgiving… until we humble ourselves.