Tuesday, November 10, 2009

Hearing Issues Revisted

I'm writing tonight about some mildly disconcerting news we got today about Jordan's hearing.

I want to preface it though...

Being a teacher of the Deaf and Hard of Hearing I have a pretty good understanding of the implications of a hearing loss. For this reason I take hearing loss very seriously and want to be sure to clearly say that I am not in any way making light of hearing loss or amplification by putting this picture in my post. I was trying to find ear pictures and pictures on hearing etc and I came across this one which I chuckled at. In life sometimes it's helpful to find humor in small things (or big things in the case of this photo - ha ha).

On to my story.

With Jordan's cleft palate that extends into her eye and elsewhere (no doctor really knows the damage that was done in her sinus area and inner/middle ears due to the amniotic banding) Jordan needed ear tubes to drain excess fluid that would build up in her middle ear. The tubes allowed the pressure to be released and the fluid to drain out. When fluid is present hearing is significantly affected therefore tubes are very important. She has had three sets of tubes put in and they typically work their way out of her ear drum within 12 months or so (common). I've begun recently to be concerned about the damage a lifetime of tubes will do to her ear drums and I've wondered about scar tissue that can also affect the eardrum's movement (hearing loss).

To make a very long story kinda short - I finally got her to a Speech and Hearing Center that specializes in children with hearing loss. Most of my students go there and I know that they are the best in the area. Once again it was so surreal to be going through the exact things my student's families go through. We did the standard ear check (they found that the tube is out in one ear) but that there is no fluid (meaning no tube needed). The preliminary test in her right ear showed that the tube was intact but that there might be some issue. Next we did the official hearing test where she responds when she hears a sound. I assumed everything was fine and that I was just being paranoid. Then I noticed the doctor reviewing all the positives regarding her left ear and as she was going on and on about how great that ear is doing I noticed she was holding her folder up so I couldn't see the audiogram (results of the test). My mouth went dry and suddenly it like the day we were in the OB's office and she was telling us about all the things "wrong" with our baby that they found on the ultrasound. All I could hear was the voice from the Peanuts cartoon. I knew she was saying important things but I couldn't really "hear" what she was saying. All I heard was..."She does have a mild hearing loss...I'm not recommending hearing aids 'at this point...'" I struggled to think of a single intellectual question to ask her. I just repeated what she was saying a few times to be sure I was hearing her correctly (no pun intended).
The icing on the cake is that as I was leaving I ran into a family I work with. This is a family that it has seemed everything has gone wrong with since I started. Ever have that happen? I can say with all honesty that it has been just one of those things that really has nothing to do with me. As I'm leaving with my kids, trying to process through what I had just heard I'm also trying to navigate my way through chit chat with this Mom and her daughter. It was challenging to say the least.
As I think back through what she said it doesn't feel as major, although it is a little tough still not knowing if it will progress or what we'll do now as far as ear tubes, scar tissue, etc.
One friend tonight was feeling for Jordan and said something about Jordan not getting a break - it's one thing after another. It totally feels like that and she is right that it appears that way at first glance but when really digging in she has had so many near misses or close calls or "breaks."
A few:
- At the 20 wk ultrasound the doctors said her issues could be grave and that we should consider killing her. (ahem, I meant to say "terminating the pregnancy")
- At birth they said she would have significant feeding issues and may need a G-Tube to eat.
She was the best cleft affected eater they had ever seen.
- Her genetic testing came back and they discovered it was Amniotic Band Syndrome this probably won't happen to us again or to her children).
- Her extra fluid in her brain resolved itself with no medical intervention (hydrocephalus).
- We've been able to have every surgeon and doctor that we've requested despite our HMO's rules (there have been a lot!)
- A breathing issue that went awry during a surgery was caught and resulted in a week on a breathing tube but thankfully not a tracheostomy.
- Her hand surgeon said once to a resident that Jordan was a worst case and I corrected him letting him know that worst case would've been being born with no hands.
- Her orthopaedic surgeon said that many doctors may have amputated her lower leg but that it was good that we had a doctor who opted to try to correct it instead. Praise the LORD!
- She kept failing hearing tests when she was younger (I'm talking profoundly failing them) but the middle ear issues were resolved giving her hearing.
Without any breaks Jordan could have been profoundly deaf, with amputated hands and one foot, needing a shunt to drain the fluid from her brain and a feeding tube to get her nourishment. It's encouraging to look at that list and then compare it to where she is today. By God's mercy, the last three years have been hard but she is doing great and my guess is that a mild low-frequency hearing loss will not slow her down.


Joy Howse said...

Such a great way to put it all in perspective. In the early months with my little guy I had to force myself to focus on the positives that had come from the situation so the negatives would not take over. Jordan is such a blessed little girl, who in turn blesses those who hear her story. I will continue to pray for her, and especially in regards to her hearing. May this 'issue' be resolved like so many other isues have been.

Megan said...

Thanks for the update. I love it how you listed the "breaks" that Jordan has had. God has His hand on her!

Shannon Pamiza said...

Hi Jen! I hope you remember me, Shannon, Devany's mom. We met once in the UCLA area? I just happend to remember this website you made for Jordan & wanted to stop by and say "hello". Reading this post, I can completely understand what you are going through. The doctors are sayin that Devany may have some hearing loss in one ear also. So, tubes will go in again. Lots of appointments in the next month or so. Atfer her Craniofacial appointemnt, they had so many suggestions for her. some I am not so sure about. She just had her biggest surgery in November. Well, I hope all goes well for you and your little one! I will continue to pray for you & your family. E-mail me sometime when you have a chance! hennshan@yahoo.com Take care!

Anonymous said...

Jen, it's been so long since I visited the blog sites I used to ... but happened to click on yours and am so glad I did. What an amazing story Jordan has so far and even more amazing is how God's grace has worked in your hearts through it all. She truly is a blessed little girl to have you. Thank you for sharing this and for your wise, and godly gratitude!!! Love, Yvonne