When it Rains, it Pours (Vent/Pity Party)

[Crimson Wife]

It's been a tough day :nopity:

 

First, DD had her biannual follow-up audiology appointment. Her right ear appears to have deteriorated. 2 frequencies (2000 and 4000 Hz) went from profound loss but still detectable at 90 decibels to not detectable at all at the maximum testing intensity of 110 dB. Her threshold at 1500 Hz dropped from 35 dB (mild loss) to 50 dB (moderate loss). Her unaided single-word speech perception score in her right ear dropped from 80% correct to 60% correct.

 

We knew from the genetic testing that her hearing is going to deteriorate in the mid- and low-frequencies. But as her hearing had been stable from February to September of last year, we had hoped it would continue to be stable for a while longer. Apparently not :(

 

I was already feeling bummed about the audiology test results when the children's hospital SLP who evaluated her 3 weeks ago sent the results of her eval. Her expressive language scores are basically unchanged from the last round of testing she had in June and the overall expressive language percentile is 2nd. Single-word vocabulary percentiles also remained basically the same, though they at least are within the normal range.

 

Her receptive language scores actually dropped because this SLP did not include one particular subtest that DD had done relatively well on in June (Word Classes, aka categories) and DD did so poorly on the "Understanding Spoken Paragraphs" subtest that the SLP could not even score that part. The last eval, DD had scored somewhat better (though still way low) on the paragraph comprehension than the sentence comprehension but not this time. According to DD's SLP at the deaf & hard-of-hearing clinic, the CELF has a much harder set of paragraph comprehension questions for ages 7-8 than it does for ages 5-6. DD is still working on answering basic wh- questions and the questions that the CELF asks of older kids are just way too complicated for her.

 

I shouldn't have even read the SLP report but I had been naively hoping that it might cheer me up by showing DD was making progress. She certainly talks better than she did last summer, but it is only apparently enough to not lose ground compared to typically developing peers. :(

[FairProspects]

So sorry, Crimson! She is so lucky to have a Mom like you working so hard to learn and help her.

[Pen]

Oh dear. Do you know what is cause of the hearing trouble?

[PeterPan]

Oh man.  That's rough.  :(

 

It's bad news, but you're going to tackle it head on.  What are they advising you change to fit with this new information?  At what point do you go ok, let's start putting serious, serious effort into ASL?  Is she getting ASL?  We have a deaf school in Cincy that has blended speech, apraxia, ASL classes.  It would be really interesting to see how her comprehension and expressive/receptive scores would change if she got bumped over.  

 

I'm a by all means kinda person on communication.  

 

Life is hard.  How is she taking it?  Does she understand?

[Heathermomster]

(((Hugs)))

For what it is worth, I believe you are handling these setbacks with strength and grace.

Edited February 17, 2016 by Heathermomster

[Mom28GreatKids]

Those reports are so hard to read. We got ds's 3 month progress report recently and it was seriously depressing. I don't like to read the reality of what we are dealing with in cold print, and it is hard to see something about your DC in print. But you, like all of us, will process the info and make a plan, because that is what we do as our dcs' advocates. Hugs to you.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

What a tough day.  I am so sorry CW.  I agree, you are handling this with incredible strength and grace.  

 

:grouphug:  :grouphug:  :grouphug:

[Arcadia]

:grouphug: :grouphug: :grouphug:

 

A hearing impaired friend now in the 40s was taught ASL and lip reading. He temp in retail (big supermarket) when he was 14 in the grocery section after school.

[sbgrace]

:grouphug:

[ElizabethB]

:grouphug:

Edited February 17, 2016 by ElizabethB

[displace]

:(. And hugs

[1shortmomto4]

I know this is hard hard hard - because I'm the parent of a hearing impaired child.  We do everything we can to protect his hearing but on any given day, any given moment he could lose more of what he has and the potential to be completely deaf is a real possibility.  The bright spot in all of this is that you know now, today, not years from now (we didn't know for 15 years!!!! they kept saying he had behavior issues and didn't try in school) and you can help her succeed.  Is it going to happen overnight, nope.  It is going to take time but the best part is technology is on your side.  Kids of many years past didn't have access to what we've got now to help these kids.  I know it seems like she'll never learn and how will she function as a teen or a young adult.  Trust me, she will.  She has parents who are walking with her each step of the way.  There will be setbacks but there will be times to celebrate.  I was scared out of my mind when my ds was dx because that diagnosis meant all his hopes and dreams had suddenly evaporated (he wanted to be in the military or in LE).  We had to rebuild and work up from there.  He has taken 4 years to get through CC but he's going to graduate and continue to the next university.  Slow and steady.  Allow yourself to grieve a little but then move forward and keep on making progress.  (((hugs)))

[shinyhappypeople]

Oh wow, that stinks.  I'm so sorry :(  

[Crimson Wife]

Oh dear. Do you know what is cause of the hearing trouble?

 

Bum luck that both DH and I carry rare mutations in a particular gene affecting the cochlear hair cells in the inner ear. 

 

Scientists only discovered the gene about a decade ago and because it's rare & recessive they don't have a lot of data to understand its clinical effects. They do know that it causes progressive loss that starts in the high frequencies and eventually the person goes totally deaf. But the age of total loss is highly variable. It could be anywhere from early adolescence up through the late forties. Because it has never before shown up on either my side or DH's side (at least as far as we have any records), doctors cannot predict it for DD.

 

The local children's hospital is evaluating her for possible cochlear implant surgery. She's going to need it at some point, and the brain is definitely more plastic now at 7 than it would be as an adolescent or adult. The risk is that it could damage the residual low frequency hearing that she currently has. The surgeon who would be performing the operation does research on preserving hearing and the audiologist we saw yesterday (not affiliated with the hospital) was raving about how good he is. She said to absolutely go ahead with the CI surgery if we can get it approved through our insurance.

 

DD lip-reads and also because I started introducing phonics prior to the onset of the hearing loss, she can also use that phonemic memory to help her distinguish the high-frequency consonants that she can no longer hear. Yesterday she was mixing up "pitcher" and "picture" and I was able to write the words on the whiteboard to help her understand the difference. But because she's using so much of her brain just to "fill in the gaps" of the auditory input she's missing, it doesn't leave a lot to focus on higher-level listening comprehension tasks like understanding more complex syntax.

[Crimson Wife]

It's bad news, but you're going to tackle it head on.  What are they advising you change to fit with this new information?  At what point do you go ok, let's start putting serious, serious effort into ASL?  Is she getting ASL?  We have a deaf school in Cincy that has blended speech, apraxia, ASL classes.  It would be really interesting to see how her comprehension and expressive/receptive scores would change if she got bumped over.  

 

The problem with ASL is that it's a completely different language with different syntax. Studying ASL as her foreign language rather than a spoken FL like Spanish or Mandarin makes sense, but it's not going to help her understanding of English. Our district actually hosts the regional deaf & hard-of-hearing program that uses ASL as the primary method of instruction but everyone agrees it would not be an appropriate placement. Those kids have been signing since birth and DD doesn't know the language at all.

[Pen]

Bum luck that both DH and I carry rare mutations in a particular gene affecting the cochlear hair cells in the inner ear. 

 

Scientists only discovered the gene about a decade ago and because it's rare & recessive they don't have a lot of data to understand its clinical effects. They do know that it causes progressive loss that starts in the high frequencies and eventually the person goes totally deaf. But the age of total loss is highly variable. It could be anywhere from early adolescence up through the late forties. Because it has never before shown up on either my side or DH's side (at least as far as we have any records), doctors cannot predict it for DD.

 

The local children's hospital is evaluating her for possible cochlear implant surgery. She's going to need it at some point, and the brain is definitely more plastic now at 7 than it would be as an adolescent or adult. The risk is that it could damage the residual low frequency hearing that she currently has. The surgeon who would be performing the operation does research on preserving hearing and the audiologist we saw yesterday (not affiliated with the hospital) was raving about how good he is. She said to absolutely go ahead with the CI surgery if we can get it approved through our insurance.

 

DD lip-reads and also because I started introducing phonics prior to the onset of the hearing loss, she can also use that phonemic memory to help her distinguish the high-frequency consonants that she can no longer hear. Yesterday she was mixing up "pitcher" and "picture" and I was able to write the words on the whiteboard to help her understand the difference. But because she's using so much of her brain just to "fill in the gaps" of the auditory input she's missing, it doesn't leave a lot to focus on higher-level listening comprehension tasks like understanding more complex syntax.

 

 

A friend of mine whose daughter had profound deafness had a CI done in her worse ear and then they waited to see if that would be basically okay--at least improved -- for her before some time later having it in the other ear. That way she would not be totally 100% deaf if the CI failed. It went well for both ears. And the girl is now in college and doing very well.  The girl went to a special school for deaf kids during elementary school which was also a big help my friend said.

[Carol in Cal.]

I know someone who had a CI done as a mature adult, never having heard well, and it was successful.  It's quite remarkable, the advances these days.

 

I'm so sorry you're going through this.  Your daughter is certainly blessed to have you on her team!

[Bookworm4]

:grouphug:  I agree with the others that you are handling this with grace and strength.  I'm sorry you're going through this.

[MyLittleBears]

:grouphug:  :grouphug:  :grouphug:

[Zoo Keeper]

:grouphug:

 

And prayers for wisdom as you make decisions on treatment.

 

:grouphug:

[Lecka]

I'm sorry about this disappointing news.

[kbutton]

I am so sorry for your news. It's hard when the yardstick changes just when we're seeing important and real growth. 

 

I will pray that you get reliable and helpful information about the CI options since that is looking like a sooner than later option. 

[KSinNS]

Hugs and I'm sorry.

[Black-eyed Suzan]

:grouphug:  :grouphug:  :grouphug:

 

I'm sorry.

[GAPeachie]

I'm sorry.  I know that Results Day is hard here.  I've done it with two children over and over.  As parents, we know our children and their strengths.  I tend to be gobsmacked when I read the reports.  My facebook friends know that when I post, "My child is not the sum of his results" that we've gotten hard news and that it will take me a bit to pick myself back up and relentlessly advocate for my children.  But we have to catch our breath after having it knocked out of us before we can stand back up and do what needs done. 

 

I get it.