I’m so sorry for leaving you with such a weary post as was the last one. I never intended to go so long without posting. And that post really made it sound like we are far worse off than we really are. We are okay. We are good. We are blessed. That post was however a very honest representation of just how tired I was and get and why there haven’t been anymore since then (they would have looked much same).
The truth is that we have gotten very good at living a normal life and taking the doctor’s appointments as they come. Part of the reason we have been able to do that is because there are fewer appointments and more time between them. The other reason is that God has been gracious to us.
Now I am going to attempt to answer some questions that I’ve received. I will answer some in story form and others in Q and A form.
Kanon was born on 09.09.09 (fun, right!?)
He weighed 8 lbs 9 oz (by far my biggest baby)
He was full term coming into this world a day before his due date. (the longest I had carried a baby)
At birth he failed his left ear hearing screening. We were told we would receive mail on when/where/how to have it retested. Honestly we thought nothing of this. Karston (our first child) had failed many of the newborn screenings only to be retested and pass. False results are quite common.
He also had a heart murmur at birth. With one hole in his heart that is pretty common in newborns, and another hole in a different part of his heart that’s not so common.
I never felt a soft spot on his head.
He smiled all the time.
At 5 1/2 weeks old he was hospitalized for meningitis for 3 days.
What is wrong with Kanon?
Good question! So far the only thing we know for sure is that he has mild to severe hearing loss in his left ear. Some bright spots were found in the deep white matter of his brain on an MRI. We’re not sure what it is/means.
Is his hearing loss permanent?
Yes. It is called unilateral neurosensory hearing loss. He was born with it, and there is no surgery to correct it. There is nothing wrong with the anatomy of his ear. The problem lies in getting the sound waves transferred to the brain. A hearing aid is our only solution.
Does he have a hearing aid?
Not yet. We were fitted for it at the beginning of January. We were supposed to get in the beginning of February. They had to cancel on us. We rescheduled for the next week, but then we had to cancel that appointment because of a big snowstorm. We have an appointment in the morning in which we should be getting his hearing aid.
How did you find out about the spots in his brain in the first place?
While in the hospital with meningitis, the doctor felt the lack of a soft spot and was worried the bones of his skull had fused together too quickly. He ordered an x-ray which came back showing no fusion. Praise God. But he wanted a little better look so he ordered a CT scan. The CT scan confirmed that there was no fusion among the skull bones (he has an extra bone though) however they noticed some spots in his brain that were abnormal. So they ordered an MRI to get a better look at the brain. The MRI showed the same spots.
What doctors do you see?
We of course see our pediatrician. We talk even more as that office has to be the one to coordinate all of our other appointments. So far we have seen an Ear/Nose/Throat doctor, an pediatric Neurologist, an Audiologist, and a Cardiologist. We have been awaiting Genetic testing since October. During our hospital stay the doctor thought that these might all be connected by one genetic condition. We keep holding off on genetic testing while we run other tests/labs.
Is his heart okay?
Yes!!! We just went to the cardiologist today. His heart murmur is gone, and both of the holes have completely healed and are no longer there! Praise God! I really cannot express how overjoyed I am. I have been singing hymns and praises all day. This is our first thing/doctor to be able to mark off our list. Our God is good. We pray that He will continue to heal Kanon’s body.
What is the next step?
We are awaiting test results that the neurologist ordered.
We are going to do another MRI at the end of April.
We are supposed to return to the neurologist in June.
It makes me feel very weary to type that ….June…..really? We will still be doing all of this in June? But I thought the same thing back in November looking forward to our appointments in February. And we made it here. And we are okay. We are so very blessed. Truly we are not suffering (even if at times I think I am). There are many people out there suffering. We don’t even compare.
I tried to answer as many questions as I could remember. If I didn’t answer one of yours just leave it in the comments, and I’ll try to answer. We thank you for your prayers. We covet them. Our God is good and does good. We take comfort in Him and the truth that this is for our good. We rejoice because we have a problem so much greater than all the things just listed – our sin – that has been taken care of by Christ’s death. We get His righteousness!
Any moments of prayer said for our Kanon would be much appreciated. We believe that our good God, who allowed all these things to happen in Kanon’s life in the first place, can take them away and heal him – even his permanent hearing loss – if He so desires.
I should be back in blogging order now.