"I Know You Can Hear Me!"

I've found myself telling Elijah "I know you can hear me!" several times in the last week when he's seemingly ignoring me. It's a relief in so many ways - to know that he is indeed getting all the sounds he should be, that he doesn't have yet another thing stacked against him. He doesn't always respond, but it doesn't mean he isn't hearing me.

Hearing, listening, and understanding are all different things, of course.

The ABR told us that the information is getting to Elijah's brain stem. What he does with that information once it gets there is any one's guess. And of course, like any two-year-old, Elijah sometimes seems to have selective listening. Can he understand us? Yes-most definitely. What and how much, though, we're not really sure.

In hindsight, I'm glad we did the ABR. It really wasn't as bad as I thought it might be (thanks for the prayers!), but sedation is still not something we take lightly (especially when the anesthesiologist mentioned that kids with 'developmental differences' sometimes have a harder time waking up). Dealing with a 'drunk' two-year-old isn't exactly my idea of fun. Elijah was wobbly and grumpy for that entire day. But, he can hear and that knowledge is priceless.

P.S. Don't the pictures of him during his ABR look like he's just listening to an ipod? Pretty amazing what they can learn with technology these days.

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ABR Results - Good News

Thanks for the prayers and well-wishes everybody!

As I write this, Elijah is trying to 'help' me type. That's probably a good indication that he's doing well. I don't have much time, so this'll be quick.

Elijah did well with the sedation. He's been pretty irritable and sleepy today, but that's to be expected. The poor guy is pretty wobbly on his feet and requires extra vigilance in keeping my eyes on him.

The best news of all - Elijah does not have auditory neuropathy, nor does he seem to have any hearing impairment whatsoever. In the audiologist's words, "I couldn't ask for a better ABR."

So good news all around. I'll probably write more later, just wanted to let you all know the little dude is doing well and the test was good news. Thanks. Okay, I think it's time for Elijah's third nap for the day...

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We Could Use Some Prayers

Tomorrow morning we will be taking Elijah in to have an ABR hearing test, also known as a BAER. ABR stands for Auditory Brainstem Response and BAER stands for Brainstem Auditory Evoked Response, because I know you were totally wondering and are completely riveted with this information. ;)

In order to perform this test, Elijah will need to be sedated. SEDATED. Okay, so sedation completely freaks us out. You see, the one time Elijah was sedated he had some issues with it. I know Elijah was really young at the time and it should be easier this time around, but it's still scary. It's not something we take lightly. And, if I'm going to be completely open and honest with you all, in a lot of ways I know it's going to be psychologically trying for us. It'll bring us back (emotionally) to Eli's NICU days and I don't want to go there. I can hardly even think about watching him passed out tomorrow morning. It makes my heart hurt.

Andy and I have gone back and forth several times as to if we were even going to do this test. We've spent a lot of time weighing the pros and cons, discussing it, praying about it. We certainly don't want to put Elijah through a procedure unless it's absolutely necessary.

And here's where it gets confusing - we know Elijah can hear. So why, then, would we be doing a hearing test? The thing we're trying to rule out is something called auditory neuropathy. Supposedly, with auditory neuropathy, hearing can come and go, it can be mild to severe, and it could cause a person to have a hard time understanding speech. Basically, it would mean that the brain isn't receiving all of the messages it should be. Considering Elijah's history, it's quite possible that he might have some sort of hearing problems.

So, that's how we came to decide to do the test. There are possibly things we could do to help Elijah if he indeed had some hearing loss (such as hearing aids or cochlear implants). With that in mind, we are going ahead with the test. We really think it needs to be done to make sure we're doing everything we possibly can be doing for him.

We could certainly use some prayers. Prayers for a safe and uneventful sedation experience and for the test to show that Elijah doesn't have auditory neuropathy. Thank you to each and every one of you who care about our little Elijah. It means so much to us.

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Another Day – Another Doctor - Another Diagnosis

I think I'm becoming numb to doctors at this point. We've seen so many of them that we definitely know what to expect. Elijah knows what to expect. I'm sad to think that this is Elijah's normal. He doesn't know a different life - a life without clinics and nurses and height and weight checks.

Elijah met a new doctor today – a developmental pediatrician. We wanted to talk to a guy who specifically works with kids who have developmental disabilities. We also wanted to know if this doctor had any more advice for us in terms of what we can do for our little guy. We're happy we went to see this doctor. He was really nice, he knows his stuff, and I think the visit proved to be beneficial.

The doctor went over Elijah's history with us and showed us charts correlating to his development (based on worksheets we'd filled out ahead of time). The doc told us what he was going to write in his report – that Elijah has cerebral palsy, that he has global developmental delays (meaning he's delayed in every single area of his development), and that if he were to give Elijah a median age it would be about 14 months...Some areas of his development (gross motor – walking, running) are much higher and closer to his actual age of 26 months and some areas (such as his speech) are severely delayed. Yes, these are things we mostly already knew, but it's still hard to hear it from an expert. It's still hard to see your child's development charted so far below his peers.

The doctor also mentioned that he thought Elijah is exhibiting signs of Pervasive Developmental Disorder – Not Otherwise Specified (or PPD-NOS), which means that Elijah exhibits some of the behaviors of autism, but not all of them. Honestly, this one took me a little by surprise. We weren't expecting to walk away from this appointment with another suggested diagnosis. Does that mean Elijah has autism? Nope. Does Elijah officially have this PDD-NOS diagnosis? Not yet, but the doctor recommended filling out some pretty extensive paperwork to determine if PDD-NOS fits Elijah's behaviors. Am I shocked? Nope. When you've already been told that your child has brain damage and that the damage is severe, well, not much can sound as bad as that. The doctor also mentioned that about 3/4 of the kiddos he sees - that have a history like Elijah's - show signs of PDD-NOS.

Other recommendations:

The doctor mentioned re-doing an MRI. Elijah's last MRI was performed when he was 8 days old. An MRI at two years would look much different and might give us some more insight into how Elijah's injury has affected his brain and how his brain has developed. Would it change Elijah's therapies and interventions? Probably not. Might it help us understand him better? Maybe. We'd have to sedate Elijah for this study, so we don't take this decision lightly. It's something we're definitely going to think seriously about before having it performed.

The doctor also mentioned testing Elijah's hearing. Elijah's hearing was tested when he was still in the NICU (and he passed), but this doc wants to know if Elijah's brain is receiving and interpreting the sounds. Just as Elijah has an issue processing what he sees (and has been diagnosed with CVI), it could be possible that he has an issue processing what he hears. We'll definitely be performing a test called Auditory Brainstem evoked Response (ABR) (also known as a BAER), which tests both the ear and the brain. We know that Elijah hears as he's very sensitive to sound. But, is he able to understand what he is hearing? Is his brain receiving the information? That's a hard one. We don't know and hopefully this test will give us some answers.

I know it may not seem like it, but overall it was a really good appointment. We liked the doctor and feel like he's already giving us some answers and help instead of just saying, "You're doing great!" or "Just keep up what you're already doing." While those things are nice to hear, it's helpful to get the most information we can about our little dude. And while we certainly don't want any more diagnoses, they simply are labels that explain what our child is experiening based on the injury that's already happened. It's never anything new. The doctor was sweet to Elijah and he mentioned more than once how well Elijah is doing. He just stopped at one point and said, "Wow, he is doing really well." And Elijah is doing really well. Adding more diagnoses to his list won't change anything. It certainly won't change how much we love this little guy. All we can do is keep on trying to see the world how he sees it...not only so we can understand him a little better, but because I think if we could we'd make the world a happier place.

Try to look at this picture and not smile. I dare you.

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