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Update on Mason's hearing
This is one of those times where I wish I had been wrong, but wasn't. He has moderate to moderately severe hearing loss. She had to have the volume up to where she was yelling at him to get him to react at all and that was in a nearly soundproof room. If you've spent any time around my kids I'm sure you can imagine how little he hears with all the background noise around here.
There are still so many unanswered questions at this point and I am really frustrated. He currently has fluid on one ear and has had for a couple of weeks. He has had fluid on his ears off and on since they had RSV. She said that if he has chronically had fluid on his ears for his entire life then that would explain why he doesn't produce any sounds other than ooh and ahh. Problem is that he hasn't. Every time we saw the pedi up until they had RSV at 5.5 months his ears were clear. His failure to produce sounds started before that though. I want so badly to believe that this is all related to fluid on his ears recently, but that doesn't quite add up to me. The only way to find out for sure is to do the type of hearing test that they do on newborns, but to do it now requires sedation. She suggested that tubes are probably in our very near future, but she wasn't sure if they would go ahead and sedate him before that and do the test, if they would do the test while they had him sedated for the tubes or if they would skip that type of test altogether and do the tubes plus another regular hearing test once the fluid was cleared up. I'm not sure I'm okay with the last option since there is a lot of doubt in my mind about this being just related to fluid buildup in the last two months.
I'm really frustrated because we can't get into the pedi ENT for another month since our options of doctors who will take us are so limited by the boys' crappy insurance. I feel like he has spent so much time unable to hear us already and he is just falling further and further behind. I also feel sad and frustrated because I don't know what to do for/with him in the interim. ECI is coming back out next Friday to enroll him so hopefully they will have some ideas for us. The audiologist pointed out that there may not be a whole lot that we can do with him right now since we know he doesn't hear. I know I need to start working on teaching him to sign some stuff since he is obviously going to be speech delayed. Other than that I feel like we are just constantly wasting time here waiting for this appointment and we still have another whole month to go. Kids do best if their hearing loss is diagnosed and they start getting help before 6 months and he will be almost 9 months old by the time we finally see the ENT.
I'm also freaked out by the ear tube surgery. I feel like he is so little compared to other kids we know who have had it done. It seems like most kids are around 18 mo. to 2 years old and he is just 7 months. I keep reminding myself that Wyatt was sedated numerous times before he was even a week old and he is fine, but I just can't get over how little Mason is to be having surgery. I also realize that I am only kidding myself thinking it would be easier if he was older. I'm sure I'd still be just as worried!
Kimberly, DH Monte, Angel baby 10/06, Angel twin 7/07, Rhett Kaden, our IVF miracle, born 3/23/08, Mason Robert & Wyatt David, our FET miracles, born 8/2/09 at 36 weeks, 3 days
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Re: Update on Mason's hearing
I am so sorry. I can't imagine the frustration you must be dealing with right now. I really hope that ECI can help.
hugs, Kim. I'm sorry to hear this. My dad lost his hearing at the age of 1 and I can't even imagine how my gramma felt after having this little boy who would laugh and giggle and chatter all day to her go from that to absolutely nothing the next day.
I know Mason isn't like that though! He'll hear again, I'm sure. There's so many variables here. Hopefully it is just the fluid and hopefully the tubes will fix that problem.
I'll keep Mason (and Wyatt) in my thoughts. Those poor guys have been through so much already. And I worry about Spencer and his stupid kidney issue! Sheesh, that's nothing comparatively. Again, I'm so sorry you have to deal w/ the worry and stress and then also the crappy insurance situation.
((((((((((((hugs)))))))))))))
I have no advice, but I will keep Mason, you, and the rest of your family in my thoughts and prayers! Mason is lucky to have a mom like you who is proactive about her concerns and will do whatever she can to help him!
*bigbighugs*
please let me know if I can help with anything at all.
I hope you can get into a pedi office sooner than a month and get things rolling.
*lots of good thoughts your way*
Married and it feels so good!
{{{hugs}}}
I hope you are able to see the ENT sooner than expected and you get some clear answers and can move forward with whatever he needs.
I'm sorry--that must be so frustrating to deal with. Hugs, thoughts and prayers being sent your way...
that really sucks - i'm so sorry! you just can't catch a break, it seems.
as for the tubes, aubrey was just over a year when she had hers done, and she wasn't the youngest one there. she did fine, and he'll feel so much better.
prayers for you guys!
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52 Choices For Better Health
Oh Kim, I am sorry you did not get the news you were hoping for. I hope you get into the ENT sooner.
I know how scary the thought of surgery so young is.
((((HUGS))))
<<<hugs to you>>>
Poor little guy! And poor worried Momma! I will keep all of you guys in my thoughts and hope Mason gets the best care possible and as soon as possible.
I'm so sorry you're going through this. I had hearing loss due to fluid when I was quite a young infant (not sure what age exactly) and had tubes a few times early in life and my hearing turned out fine.
On the other hand, my niece was born with severe hearing loss in one ear and moderate to severe in the other. She's had hearing aids since she was 6 months old. At two she just had to be sedated again for the test you're referring to and, of course, came through it fine, though they determined she has lost all hearing in her worse ear. She is speech delayed, but she signs like a champ, does say many words and is so, so smart and happy and healthy. If you want to talk to somebody who's been where you are, especially if it turns out that fluid is not the problem, I'm sure my sister would love to be in contact with another mom who is dealing with similar issues.
FWIW, Caroline is getting tubes a week before 12 months. The daughter of some friends of ours got tubes at 9 months. She had 30% hearing loss because of fluid. They put in the tubes and she started babbling the next day.
Lots of t&p for y'all!
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this! I'm definitely thinking about y'all ((hugs))
Kim, I'm so sorry! Ditto pps - your boys are lucky to have such a good mommy! I hope everything works out.
I haven't read all of the other responses, but I'm so sorry you're going through all of this. You really have had your hands full since day 1 w/ Wyatt.
I don't want to post too much personal info, but there is a little boy in the family, now 2y5mo, and he just got tubes for a similar issue. He started the mama/ dada on time, but then stopped before 1yo. From then on, watching tv he would maybe gargle and make some noise, but nothing pronounced or coherent. It took another year for him to see the right specialist, after no luck with speech therapists and ENTs. They aren't sure the extent, or if there's hearing loss, but they know there had been water in his ears for an extended period of time. He got the tubes a couple months ago, and then had a few minor infections. Since then he has started mama/ dada again. They will go back to the audiologist soon for another evaluation.
I just wanted to give you hope that early is better bc it will keep him from getting too far behind. And also that tubes may help a lot in this situation and get you much further, faster.
Poor little guy! And poor mommy too!
Is there a way for ECI to call the ENT after they see him and get him a "priority" appointment or something? Or can your pedi do this? I know I was having horrible pain a couple of months ago and had gone to my GP twice and the second time, after meds didn't work, he was able to call an ENT and get an appt for me two hours later. It seems like doctors calling doctors, gets results before patients/mothers calling doctors does (make sense?).
Hugs to all of you!
i was telling my DH about the struggles yall have had getting in to see doctors due to medicaid and he suggested you contact your state rep and state senator. he works for a state senator and said that someone from your senators office would follow up with medicaid to see about making things happen in a more timely manner. just an idea if you have the time to add that to your list
youre a great momma, i envy your patience.
Yes, I actually have someone fantastic in my state senator's office who is following up with them for me. I know I get more attention from them with her help than I would otherwise!
lyndsay - Thanks so much for sharing about Teagan. That really is encouraging.
Thanks to everyone for sharing your encouraging words and experiences. I really appreciate it!
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Kim, You're such a sweet, caring, loving Mommy. You're doing the best you can to do what's right for him and I hope the Dr. can get him in sooner, but if not, hopefully he'll be able to get it back like carlinlp said T did.
Sorry that you and your family have to go through all this worry and stress.
Hugs,
~NDK~