Moriah and her RT,Jay, who held her through the evaluation. Jay was such a good sport and did whatever he could to calm her down. We love you Jay!
Here, the ENT cleaned out Moriah's ears, and confirmed that she doesn't have a left cochlear nerve, and that she cannot hear out of that side. Okay. Fine. We knew this already from CHLA. So what about the right side??
We proceeded to a behavioral evaluation where they stuck something in her right ear which made noises, and the Audiologist monitored her responses. This was a mess. The room was hot and stuffy, Moriah was crying, she was being bagged, we were trying to be careful with her wound and wound vac. We've had more succesful appointments than this =)
The results showed very severe-profound loss (like her ABR showed).
However, the Audiologist wasnt sure if it was because of the difficult circumstances or if the test was accurate. We have another appt. scheduled in 4 weeks, hoping that it goes better and that maybe the wound vac will be gone.
What I'm having trouble with:
I feel like I'm discouraged, and being advised to put her hearing issues to rest...that we should wait until she's off the ventilator or until she is discharged from CRC until we pursue a hearing aid for Moriah. These are both things that might not happen for a long time. The audiologist was honest with me, and told me that the only reason she is pursuing another test for Moriah is because Justin and I are advocating for it...otherwise, it involves a lot more trips to the outpatient clinic with trying to get fitted for a hearing aid, get a hearing mold, etc.
I asked if children can have hearing aids while they are on the ventilator, and I was told that it IS possible and that the amplification can be adjusted so that the noise from the ventilator doesn't bother her.
So my question is why do we have to wait until she's off the vent?
I know what an interactive, social baby Moriah is, and we would love to have her be introduced to sound if it is possible. Wouldn't this help with her development? I know the answer to that one! =)
In the meantime, we continue to expose her to signing, facial expressions, visual tracking exercises, etc.
Do you guys have any other suggestions?
Thanks for hearing me out on this =)
Love,
Victoria
And just because I haven't done one in a while...
20 comments:
You're such a great mommy, Vic!
I don't have any advice, but I'll be praying for you guys regarding the hearing stuff.
I cannot believe how big Miss Moriah is getting! I love her!
You KNOW what I'm going to say...right????? Advocate, advocate, advocate. :0)
You are her momma, her voice, her advocate...go get'em girl!
Sending my love and back bone ;0)
xoxo
First of all.. I have to wish Moriah a great big HAPPY BIRTHDAY!!!!!!
Now... I'd say push for the hearing stuff... why not??
You are a great mom!!
I am with Amber! and with Ben and Melissa. Advocate, and we will sit back here and pray! :)
Kat
OK, my friend...I started an email to you on Sunday and need to finish it (sorry it's taking me so long). I pulled together some ideas that helped me at the beginning of Viv's hearing journey ...
Victoria, I love the way you mother your Moriah...I am so with you on this one. If Miss M can have access to more sound, she should have it. It is in her nature to be social, interactive and CHATTY - that world should be as open to her...and it will.
xoxo*h
Absolutely go for the hearing aid. It will change all your lives. You are her best advocate!!
Hey Victoria,
I am so not a mom and would love to be. You have to go for what you strongly believe in and you know it!! You are so on the right track with it all. Go for the hearing. I firmly believe that she would just make huge steps with sound. You are an awesome wonderful mom and you know so much and know what you are doing. Go get em, and do what your heart is telling you to do. I have been praying for you and just doing lots of thinking about you.
Hugs,
Tanya
First of all Happy Belated Birthday!! Two years of such a blessing! What a special occasion.
Absolutely do not give up on sound!! One thing I think you should strongly pursue though is trying a BAHA headband. Tate has one and there are other CHARGErs with them. I believe there are many with a conductive loss that are missed. It's simply slipping a headband on their head and watching! So easy and non invasive! For sure make sure if they every do any sedated testing or any kind of testing for that matter that they check for a conductive loss. I wish we lived closer so we could try Tate's out on Moriah.
I remember watching her video when she was looking at a book and singing. I don't believe that a profoundly deaf kiddo could have that variety of sound at two. Just my opinion. I'm no audiologist but I play one every day with two CHARGErs, one with a CI and another with a BAHA:).
We pray for Moriah and all of you everyday. We don't get to write that often with a family of four with two CHARGErs and another baby on the way but you're always in our hearts and in our prayers.
Good Luck with this issue!
Hugs from MO
Corrie Young
mom to Peyton, 13(CHARGE) Cy 10, Mary Catherine 7 and Tate 3(CHARGE)
ps When I did see that video of Moriah, it made me think of Tate and how he sings the same way and how Music is so huge to him. If you have access to a Music Therapist, I highly recommend that for her. It's Tate's favorite therapy and has done so much for him learning to listen to sound!
Ugh! People need to understand that EVERY child can learn.r If we can put a man on the moon, then, someone find a way to get this little doll a hearing devise. After I watched the video of Moriah (where she SAW you in the mirror recording her), I knew she was a smart kid, she is so with it. Who cares if it requires more trips to test her hearing? She is sooooo worth it. Those folks need to create a cool, calm environment for the test and figure it out. DUH! You go mom and dad!!!!!!
I agree with all of the above ADVOCATE!!!!! Do you have early intervention involved? they should be able to help toooo
Don't give up! Keep advocating and get hearing aids for your baby! You all deserve it. Don't let anybody tell you it's not worth it! Prayers continue. People ask me all the time what my blue ribbon is for and I get the opportunity to tell them all about your sweet girl!
Carey
Demand, demand, demand!!! It's so obvious that she loves interaction and communication. If a hearing aid can get her further along in this part of development, yell at them until they have hearing loss!!
I'm with everyone... trust your gut, don't give up, switch audiologists if you feel you should, Corrie's suggestion of trying a BC aid is great, too.
All that being said, I'd like to add to try and not be discouraged if it's really tough getting Moriah used to any amplification in the beginning. (Hannah's bootcamp efforts with Viv are a testament to that!) Since Moriah is dealing with many other things, she might be resistent at first. (OR... my hope is that at this point, she'll just think... what's one more thing on me?!) Between you, Justin and the staff at the center, you have the benefit of a huge team working with her, monitoring her "hearing behavior" and giving perspectives, and give her your own version of a bootcamp!
Back to Corrie Young's suggestion: because of everything else she has going on, she just might not tolerate the BTE (Behind the Ear) aids... even if they'd give her better amplification. The BC aid would at least give her something if she also has a conductive component to her loss. Something is certainly better than nothing at all. It's a soft band, so it's really just like an accessory with some vibrotactile input! And, if she's an ear fluid harborer (like Miss G), it won't be comfortable to wear the BTEs when her fluid levels are high.
Trust your gut, fight for aids... you have a case for both types given her situation... I firmly believe that. Gracie has BTEs and a BC aid.
And, no matter what, don't let the less than positive feedback/attitude of the audiologist deter you. Let Moriah "make" the decision as she grows and gets used to the amplification that you are going to continue advocating for :-)
Thinking of you... and totally hearing you :-)
I dont know whats wrong with all the ents. I had to push and my lil one is 2 and half. it took 6 months to get a hearing aide. we got the baha, its so nice and theres nothing like seeing your child hear for the 1st time. I say push push for it. I think if you used an fm system with it it would cut out all the other noices.. good luck. and happy birthday lil one.. you are such a good mommy..
I know hearing and communication has been the hardest thing for us with Eva. I want to send her to a new school for the deaf so she can get more communication in and learn to tell us what she wants. I am the ONLY one who wants this for her, I am the one pushing for it. Her teachers and therapists are not all on the same page as me and if this is something I want then I HAVE To PUSH for it. ME, MYSELF AND I!!
So what I am saying is if YOU want this more Moriah then YOU have to push for it, No one knows our kids better then us. We are the parents and we have to do whats best for our kids. I do not know your doctors, therpaists or audiologists but sometimes they just do whats the simpliest things for themselves. We have to push and sometimes fight for what we want for them.
Good luck and you are doing a great job as her parents and her advocate.
Hugs,
Crystal and Eva
My son Nicolas just got his trach yesterday and while he was under they did the hearing test, he had one previously that showed mixed to profound loss but they didn't know if it was accurate. I was so worried about my little boy being under anesthesia that I was concerned that they leave him under longer for a hearing test and the ENT insisted it be done so i agreed. My son has a skeletal dysplasia that is considered lethal in most cases. He is on a vent now and they are coming this week to fit him for his hearing aids! Is there another doctor? I am so irritated right now.. why they wouldnt come to her makes me want to slap someone(but then again i am in the hospital with little nicolas and totally stressed!) ;-) you are a great mom.. keep up the good work in advocating for your precious girl. If you don't who will? I know it gets discouraging but I have no doubt that Moriah picked you for a mom for a reason! Hugs and Prayers.. Jenna
I'm surprised by the audiologist's response. Is there another audiologist you can see if you're not getting the help you need from this one?
I would also ask the audiologist about any programs available to Moriah. My son Micah(CHARGE, 18 months old) is the Georgia program for children with hearing and vision impairment. They come to our home twice a month and teach us ways to communicate with Micah, maximize what he can hear and see, etc. I don't know if this type of program would be available to you in CRC, but it's worth looking into.
Your audiologist should also be giving you tips for communicating with Moriah until she is aided.
Good luck. I continue to pray for your family.
Love keeping up with the web page. I cant believe how much she has grown and changed. Moriah is in my thoughts daily.
Advocate! You are her voice. We got Lily's one hearing aid through Easter Seals. Love them!!
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