April 19, 2013


Today we had Jaylen's ABR test (audio brainstem response) which is a natural sleep test that took about 3 hours to complete. We were not surprised to discover that Jaylen is, in fact, hearing impaired. The bottom line is that Jaylen has mild/moderate hearing loss in both ears and will be fitted for his first pair of hearing aids in June.

We were very surprised to learn that his hearing loss was not considered more profound, since he rarely (if ever) responds to any sound, even very loud noises close to his ears. What is difficult about this is that he SHOULD technically be able to hear conversational speech, but is not responding to it. At this point, this means that the concern is less about his ears now and more about the brain. Basically hearing aids should make the full spectrum of sound available to him, but that won't necessarily mean he can process/receive sound properly. The audiologist confirmed that the hearing loss was likely caused by gentamicin poisoning (toxic levels of the antibiotics he was given at birth.)

We are still processing this new information since, as I already said, we can clap or shout right next to Jaylen's ears, and he usually won't even blink. We are also trying to wrap our minds around what it means to receive sound, but not be able to respond to it. This new discovery puts significantly more stock into the brain MRI. We were originally undecided about whether or not we were going to do pursue that test,the but after today, I would have them to the MRI tomorrow if they would let us.

Without a good look at his brain, there is no way of knowing what is causing the disconnect between receiving some sound and his ability to startle when appropriate, or turn toward a loud sound or voice.

I am exhausted and confused. I had prepared myself for the "worst case scenario" and was feeling excited about
moving forward with some answers and a plan, no matter what the diagnosis was. I felt confident that we would be able to work with any challenges that we faced, and that there were going to be awesome and exciting things that we wouldn't get to experience with a hearing child. I felt prepared to tackle the challenges and move in a clear direction. The only thing I was really unwilling to tolerate was more unknowns... Surprise! We know less now than when we started. Well, it feels that way at least.

The good news is that none of this surprises the One who created Jaylen. Each of Jay's days has been written out since the beginning of time, so I am praising the Lord that He is neither shocked by this (nor as irritated) as I am. For anyone willing to fall on your faces in prayer, we would ask that you pray specifically for quick answers. I don't think there is anything wrong with asking God to do a miracle... I'll take one for sure! More than anything though, I am asking God for provision no matter what his health situation is. I don't ever want anyone to think that God failed if He doesn't choose to make Jaylen hear or process sound the way you and I do. Perhaps the true miracle would be loving him just the way he is and enjoying all that he will teach us through the way HE hears and processes.

That being said, I am praying for sheer speed in receiving answers. I can take whatever they tell us. God will provide all the Jaylen (and we) need. I can let God stretch me, and I can trust that He loves Jay even more than we do. But Mama needs some fast answers, because I can do a lot of things, but waitin' ain't one.

April 7, 2013

It's Been a Long Time Coming

My apologies to those of you who have been begging me for an update on Jaylen's health.  I have ignored almost all of you, and for that I really am sorry.  I am tired.  I am parenting so many people.  I am swamped with doctor's appointments, housework, normal parenting issues, adjusting to life with five, backed up work from my business, major life changes in more areas than I could even share, and just a pinch of clinical depression.

Don't get me wrong, I am loving life with my sweet baby #5, and everyone is adjusting beautifully... but, it has been such a hard season for us.  Tom's grandfather was diagnosed with pancreatic cancer just days after we brought Jaylen home, so all things normal have been flipped upside down as we process both this new baby person entering our family, at the same time a beloved elder is preparing to leave it.  It has been so sad, and so hard to watch the family grieve and cope and care for him.  I am proud to have married into such a remarkable family, though, and the love and joy they show to one another is rare to say the least.  We have been treasuring any time we have with Papa, and the kids in particular are slowly processing what this all means.

I am more than overdue for an update on Jaylen's health, so I will briefly tell you what I know... which isn't much.  At this point, the neurologist and audiologist believe that the type and amount of antibiotics that Jaylen was given in the NICU are what caused Jaylen's hearing loss.  They also suspect that the level was toxic enough to also cause enough damage to his brain to cause developmental delays.  We do not know how extensive his hearing loss is, or the neurological concerns for that matter.  The next steps for the hearing will be at the end of this month, and the results of that will determine if/when the neurologist will put Jaylen under anesthesia for a full brain MRI.

So, it's not awesome.

This week, we have the cardiologist, a speech therapist and a physical therapist appointment.  The two latter are early intervention evaluations provided through the county.  I am thankful that we have so many free resources available to us through the county, especially since our insurance is committed to a staunch denial of payment for any and all services that cost more than a buck fifty.  (Okay, it's not that bad, but, if everyone who worked for that insurance company was moderately tortured, I wouldn't speak up for the first few days or so... I'm just saying.)

Apart from that, I am trying to adjust to all the major changes in my life.  Friendships, family dynamics, support network, etc... everything is under construction, and my neurons have responded by trying to convince me that the answer lies somewhere at the bottom of a can of sweetened condensed milk and an episode of Grey's Anatomy.  I can tell you  from  personal experience  an ancient Chinese proverb, that that is a lie from the pit of hell and neither ridiculously sweet milk, nor really bad TV will make you less depressed.

Jaylen has been sleeping through the night regularly, so I am getting back on my early morning routine, which is much more conducive to glorifying God and anti-depression than the aforementioned game plan.  These early mornings consist of a 4:45am wake up time, going to Planet Fitness to work out and get back home in time to shower and do my Bible study before the kids get up at 7:00am for school.  By the time the kids are starting school, I have been awake for five hours.  It's total insanity, but it makes me way less insane in the long run.  And if all goes well with my workouts, my butt will move back up to where it used to be.  I figure an inch a month is a reasonable goal... so, I am looking forward to a normally placed fanny by Christmas of 2014.  If I am successful, I am going to send detailed results in one of those Christmas newsletters that highlights family accomplishments.  So, we can all be looking forward to that.

This season has, obviously, been very challenging and apart from Christ, I would be hopeless and unable to get out of bed every day. Apart from my faith in Christ, I would be overwhelmed with suffering and I would probably be a bitter, hunchbacked lady swearing at people in the grocery store.  Apart from Christ, seasons like this would simply do me in.  But, the reality is that I never have to live or breathe one breath apart from Christ... which is such good news indeed.  I know I have a loooooong way to go in maturing and understanding who this Jesus person was and is, and what his life and death and (most importantly) his rising mean to me, but I know one thing for sure... I am helpless to do my story apart from His.

Can I get a witness.