Thursday, December 13, 2012

ABR Hearing Test and Echo.

Time for another update while both kids are napping.  Sorry I didn't update about the hearing exam sooner, but, you know, it's been crazy.  So yesterday nurse Eileen and I took Ryan in for an ABR hearing exam.  It's supposed to take 2 1/2 hours and you are supposed to get your baby to sleep through it.  Yeah, I laughed, too.  We did our best!  We woke him up super early and didn't let him nap, it was perfectly timed so he was due for his feed when we got there, etc.  And Ryan did his best, as always.  He fell asleep pretty much right away after they put the electrodes on him, but he didn't quite sleep as long as they needed.  He slept probably 30-40 minutes, which was pretty good for him!  He's turned into quite the cat-napper lately.  During that time, they were able to get 2 signals on his right ear and half a signal on his left ear.  While that doesn't sound like much, it was enough for the doctor to let me know that he has profound and/or severe hearing loss in both ears.  Of course this was always in the back of our minds as a possibility, but we were so hopeful that they first two failed tests were just a fluke.  Unfortunately, that doesn't seem to be the case. 

The good news is that once they finish with the testing, we should know more about what options he will have for hearing aids.  Then later down the road, he could be a candidate for the cochlear implant.  The doctor didn't make it seem like this was an end-all diagnosis, but he did say that he was going to refer us to early intervention because they offer programs for parents to learn sign language.  He also indicated that his inability to hear most sounds would severely delay his speech, but with the early intervention referral we will hopefully get him some help with speech therapy as well.  I'm trying really hard not to be sad about this for so many reasons.  The first being that I know we are lucky Ryan is even alive.  This is just one more hurdle he will overcome with our help.  The second reason is that I know there are so many medical advancements in audiology, that hope is still alive for him to hear.  So, I'm trying to focus on that.  But, I will say here, so that I can just get it out and not dwell on it, that this is the first time in a long time I've come close to tears when someone asked me about the test results.  It's just so heartbreaking to know that your baby is going to have SO many challenges to overcome.  But, I know He can do great things so we will overcome.  (I originally typed that He with a lowercase h meaning Ryan, but I thought better of it). 

This morning we went in for an echo to make sure Ryan's pulmonary hypertension is still gone after stopping the sildenafil, and so far so good!  We will meet with the cardiologist on Tuesday, but the tech didn't see anything concerning, so that was good news. 

A lot of friends and family have been asking about Dani, and she is doing much better.  She's been fever free for over 48 hours now, she's just dealing with a little lingering cough/runny nose.  It's really nice to have our happy girl back!  Thanks for all the extra prayers you sent her way.  I'll end this with a few of my favorite pictures from the last week or two.

Playing with one of his favorite toys:

 Pensive Ryan at his first contact lens appointment:
 Making silly faces and funny noises.  One day I'll figure out how to get a video on here because the video I took right after this face is priceless:
 Poor, sicky Dani trying to make the best out of dinner:
 Ryan's giving one of the audiologists the side-eye after she put all those electrodes on him:
 Getting ready to doze off for the ABR test:

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Anonymous said...

Hey Jen,
I don't know if this will help or not, but ASL is my second language! Learning sign language can be awesome - whether Ryan has hearing or not! This could be a great opportunity for Dani - learning a new language is awesome for kids and will be beneficial for both Dani and Ryan in the future... the cognitive development it takes to learn a new language - especially a different type of language (non verbal) will be great for their cognitive development... Just thought I'd mention - There is another bright side to this! And you are even going to get resources for your whole family to learn together - that's really neat!

Johanna said...

I love that in the pictures you can tell he's looking at things! He's getting so big it's hard to remember the original pictures of him. Big hugs!

Jen Aprea said...

Thank you for sharing this, and you're right...that is another bright side! I was asking Dani at dinner if she remembered the sign for "milk" because we used a few basic signs with her as a baby. She was having fun reviewing them again. :)

Anonymous said...

Its true Jen that Dani will learn a lot with the sign language. I took a year of it before nursing school and absolutely loved it! I've even considered going back to school to minor in it because I loved it so much :)

Lisa R.