Wednesday, October 3, 2007

Introducing "D"- the oldest

Since I now know how to post pictures, I thought it might be fun to introduce the kids, and tell you about their hearing.
D is our oldest- we 'discovered' her hearing loss when she was 3-ish. I say 3-ish because we had suspected that she wasn't hearing as we thought she should for awhile.

We took her in when she was 18 months, and our Pediatrician sent us to the State Health Department for testing. We knew nothing about what tests should be done, etc., so we didn't really know what to ask for. They did tympanograms (basically to see if there was fluid in the ear(s), which would be a conductive form of hearing loss), and then they put her in a huge soundbooth. They did VRA testing (which means they had her listen to noises at different frequencies, and she was supposed to look in the direction the sound came from. If she looked the right way there was a little monkey w/ cymbals......full-proof testing- HA!) She just kept looking from side-to-side, hoping to get to see the adorable little monkey, while I was wondering what the heck they were doing. They were happy to tell us that she passed. O.K., If you say so.

We went home and figured we were being first-time, worry-wart parents. By age two, she only said 4 words. I told her Pediatrician that we felt like something was not right- he looked in her ears and diagnosed her w/ "Glue Ear" (thick fluid blocking off her eardrums). He directed us to an Ear Nose & Throat doctor, who put tubes in, and told us to come back in several weeks to see if the fluid was gone. At that time I enquired whether we should do a follow-up hearing test, and was told it was not necessary (this is where all parents should follow their instincts). Finally, he sent us to the Children's Hospital for Speech Delay- they couldn't get us in for 4 months.

Sorry, this is so long, but I think we were so mishandled that I like to share the story so other parents can learn from our mistakes :) By the time we finally went in for her Speech test, she was one month shy of her third birthday. The Speech Pathologist asked if we had checked her hearing, and I mentioned my frustration- Voila! Next think you know they fit us in immediately for an OAE hearing test (basically a screening test, that now many hospitals are doing for all newborns). Something that definitely should have been done at 18 months of age by the State health department. The testing showed that most likely D had bilateral hearing loss, probably in the severe range. Next thing you know we are scheduled for a sedated hearing test called an ABR. Sure enough, she had bilateral, sloping, moderate to severe loss. She got her hearing aids three months after her 3rd birthday. To make a long story short- she is now almost 11, and was caught up in terms of speech by her 4th birthday. She has one hearing aid, and one implant, and does really, really well in school (well......we won't count Math, but I'm not sure that's a 'hearing' issue :)

I could go on and on about what a frustrating time that was for us, but I think you all get the picture- :) Just never discount those maternal 'gut instincts'. I wish I wouldn't have!


Jennifer said...

That had to be frustrating...knowing something was wrong but being discounted by the doctors. I wonder how often that happens?? I'm so glad your daughter is "caught up"...that's a blessing! :)

Mom to Toes said...

Wow! This is definitely a testament to doctors needing to trust a parent's instinct!

I am so impressed with how quickly she caught up to her peers.

May I ask how often she was in speech therapy? And what (if any) "philosophy" you followed? (AVT, TC, etc.)

I love your blog.

Loudest Mom on the Block said...

She was in speech twice a week initially, plus as soon as we had a correct diagnosis, we moved her from the general 'delayed' class, to an Auditory-Verbal program through our school district. We had two options at the time- TC, and AVT, and after observing the two, we chose AVT for Delaney. That said, our Audiologist weighed in heavily and told us there was really only one choice for us. For us, it happened to be great advice, but I still think parents should have exposure to the various options, so they can make informed decisions.

I'll have to share Emily's story, because interestingly enough, our earlier decision hurt us a bit. She had a mild-moderate loss from birth, but at just under 3 yrs of age, she lost ALL residual hearing. It was horrific. We had no way to communicate. I still think all Oral was the way to go, but it made the months between Em's implantation, and loss of hearing, were terrible. She only wanted me, she wouldn't go to school, it was not good. We ended up getting a Deaf mentor to come to our house to teach the whole family basic ASL. It helped a lot.

I guess because of that I'm a firm believer in Oral/AVT for deaf/HOH of Hearing parents, but I still think ASL has a role. Especially at the pool :) That said, fortunately for us, the two girls are fantastic lip readers. We just sneak our signing lessons in under everyone's radar, so we don't get the evil eye- ha ha.

Sorry, this got long :)

Carrie said...

This is amazing. I know you might even read this b/c this post is from 2007 and I'm commenting in July 2008 but I couldn't help myself. I was beginning to think I was the only one in the world. My husband and I have 3 children, 2 with LVAS and moderate to severe/severe to profound bilateral hearing loss. Our oldest, who is now 20, has no hearing loss that we're aware of but does have a listening deficit :) The reason I was reading your blog today is my youngest, who is 15, has recently experienced her 4th LVAS episode and is unable to hear anything today other than loud ringing and I've been researching on the computer all morning. However, reading your blog, I was just astounded at our similar experiences. When Kyle, our middle child who is now 17 (will be 18 on Saturday) was diagnosed with a hearing loss, we went through an experience almost just like yours. I told the ENT, who we saw on about a twice weekly basis due to ear infections, that something was wrong with his hearing when he was 9 months old to which I was told, "Oh, he's just ignoring you; that's normal for this age." At 12 months, I insisted that something was wrong and I wanted it checked. When he was 18 months old, finally, they agreed to test him. They put us in the sound proof room, made noises while Kyle ran around in circles around my chair the whole time, and afterwards told me his hearing was fine. Then after much persistence from me and very little speech from Kyle, they did the ABR and told us that he had a severe to profound loss in his left ear and a moderate to severe loss in his right ear. Then it took them 6 additional months to order and get his hearing aids. When Bryanna came along, as soon as I suspected a hearing loss, we went straight to a different doctor and had an ABR done, which confirmed her moderate to severe loss in both ears. It wasn't until January 2007, she was 14 years old by then, that we found out about the LVAS when she had a severe case of vertigo and sudden hearing loss. I'm sorry for all that your family has had to go through but I am happy to know I'm not alone in this. Best of luck to you and your family. I look forward to your updates.

Catherine V said...

I came across your blog today and have enjoyed reading many of your posts. Our 3-month old daughter (first and only child!) failed her newborn screening, and with rescreening last week, we cofirmed that she has bilateral hearing loss. She'll be fitted with hearing aids this December. Right now it all feels very overwhelming, so it's great to read about other families' experiences. We have no idea if our daughter's hearing loss will stay where it's at or if it will worsen over time. I appreciate your suggestion about Oral/AVT. I will have to look that up! :) Again, thank you for your wonderful blog. I want my daughter to have an amazing life and to not be defined by her ABR scores.