We have had hearing aids since Lauren was about 3 weeks old. We put them on her every day consistently, although it has gotten harder and harder to get her to leave them alone.
The hearing aids are Phonak Naida, very powerful but not overly large HA's. They were loaned to us by Hearts for Hearing. Thank you! Since it was known right away that Lauren would ultimately need cochlear implants, this is an interim solution. Hearts for Hearing attempts to provide hearing aids to families who are residents of Oklahoma through donations. In Kansas, or at least in the Wichita area, hearing aids can be provided through the Children's Miracle Network funding. Hearing aids are about $1600, so not a small expense. For kids who are going to get CI's in a few months, it makes sense to take a loaner approach.
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| Lauren's first hearing aid fitting |
We have had at least one set of earmolds each month. To keep the hearing aids on her head, we originally started out using these little dual-sided sticky tapes called Stick n Stays (made specifically to fit the hearing aids). They are pretty pricey. For the past couple of months, we have switched over to lingerie tape. Ahh, yes, apparently there are many uses for lingerie tape. We are going through it pretty fast because Lauren rips them out about as fast as we can get them put in. It started when she was about 3.5 months old. She has since perfected the technique. I think she knows at this point that she can get our attention if she does that. Sometimes she uses the earmold as a chew toy if we can't get it from her fast enough.
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| Lauren getting earmolds |
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| Lauren in Auditory Verbal therapy |
We have done sound booth testing twice with Lauren. It seems like she might have responded to sound at around 120 dB, but at that point, it could be vibration.... nevertheless, we are seeing minimal or no response with the hearing aids.
We are anxiously awaiting the first CI surgery. We expect it to be in mid-May, barring any surprises. That will be at 9 months of age. We have talked with our audiologist, and should have the first activation within two weeks. :) Big Smile! We can't wait for that day. With Taylor, her surgery was bilateral at 14 months, but the activation wasn't for five long weeks after the surgery... it didn't have to be that long, but all of the audiogists schedules were full, so we had to be patient.
We had an MRI for Lauren as a prerequisite for surgery. All of the anatomy was normal and there is no other pre-surgery requirement for us beyond insurance pre-approvals.
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| Lauren on the day of her MRI with our friend Dr. Jackson |
So, although we have a long road ahead of us, Lauren will have access to sound a full 5.5 months earlier than Taylor did... and considering how well Taylor is doing, I am thrilled to know that Lauren's potential should be unlimited.
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| Taylor and our AVT Tami |
Big brother Derek loves Lauren. He's never too busy to give her a kiss on the head as he runs by. He has asked some questions about her ears. Now, he's figured out that Taylor's ears and Lauren's ears aren't like his, and he knows that Lauren will eventually have the cochlear implants.
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| Derek and Lauren |
Taylor is about the best 3-year old big sister that I could have imagined. She dotes on Lauren, is sad and tries to get us to make her feel better when she is crying. She is around Lauren so much that during the couple times that we have left them with a babysitter, Lauren does much better if Taylor is there with her. When Taylor's not in the room with the babysitter, Lauren gets upset. As I reflect back on Taylor's time as a baby, I realize she was probably the same way with Derek. Other than with our every day nanny, I only remember leaving Derek and Taylor with a babysitter once, when he was 2 and she was 10 months. She got really upset because he was scared and upset.
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| Siblings are the Best! |
As a mother, I am so thankful that my children have each other. Siblings are the best support network. They learn from each other, play together, and most of all, love each other.
Wonderful news that you have a CI date already. It is nice that it isn't cold/flu season either. I was nervous about that with Natalie since her surgery was 1/4/2011.
ReplyDeleteShe is quite the stinker huh getting those HA's out. LOL. Here is a link to some pilot caps that we used with Natalie to help prevent her from pulling them out. Not sure if it will be useful to her or not now since you are already seeing little benefit from the HA's. I have to admit, closer to the surgery date I wasn't as diligent about having them in all waking hours because I was so sick of fighting her on it.
Here is the link though..
http://www.hannaandersson.com/search.aspx?search_for=pilot+caps&rs=1&cm_mmc=Google-_-Brand-_-Brand_Pilot_Caps-_-hanna_andersson_pilot_caps_Broad&gclid=CKqmvLTC2q4CFZNV7AodZ1ICaw
Good luck!
Hi Melissa, Thanks for the suggestion on the pilot caps. I may try that. It does get exhausting. She is now cutting her first tooth and looking for anything to stick in her mouth!
DeleteHi there. It is so exciting that the CIs are just around the corner. I have to second Melissa's suggestion. We used the pilot caps with both Lily and Alexander to keep the hearing aids in. We also used SilkWear bonnets. They are more expensive but allow more air flow because the sides are mesh. You can order them at www.silkawear.com. We even used them for a few weeks when Lily first started wearing her CIs. It didn't take long before she left the CIs alone because she realized she could hear with them. :) Good luck! Looking forward to reading about the surgery and the big activation day. Your family will be in my prayers.
ReplyDeleteThank you for your suggestion! I never tried the bonnets before. I may do that soon. :) I hope Lily and Alexander are doing well!
DeleteYour kids are just adorable! And how exciting that the Ci surgery is just around the corner! Like the other ladies said the pilot cap was a god send for my daughter!! Good luck with the surgery & activation & look forward to hearing all about it. :)
ReplyDeleteThanks for your suggestion. I think I will give it a try!
DeleteI found you blog while reading other blogs about kids with CI's. We have 2 children with hearing loss. Our son, Jared is almost 11 and wears hearing aides, our daughter, Allison is 9 1/2 and has CI's. Our last son, Jordan has normal hearing and is 4 1/2. Both Jared and Allison are totally oral and have been maistreamed into regular classrooms.
ReplyDeleteI enjoy reading stories of CI journeys and remembering when we started down that road with Allison. It brings back so many memories.
If I can be of any help in the been there, done that dept, please let me know. You can check out our blog at krullfamily5@blogspot.com
I am looking forward to hearing all about your daughter's CI surgery and how well she is doing.
It's never easy to budget when you have to spend over $10k on necessary medical procedures for your child. You are very fortunate that besides insurance you're able to get financial help through private donations and Children's Miracle Network. My child has had several surgeries and needs a few more before he's finished. I am thankful we have insurance that covers part of the expense, especially since they will total over $40,000 once we're finished. More than half of that amount is paid to your husband who is a wonderful doctor. You're very blessed that you get charitable assistance for the medical care your children receive, when many families your husband treats do not have the same fortune.
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