Monday, April 6, 2009

My baby is sick! :-(

The poor little guy.... Aidan's temperature was 101.5 tonight. He's been rubbing both of his ears all day, and we've been battling chronic ear infections for months now. We thought they had cleared up, but now it seems they are back with a temperature. I'm so frustrated for him.

Aidan has been going to Texas Children's Hospital to see a specialist since last year off and on for frequent infections. We have tried numerous ear drops, but almost every time we've gone back for a follow up, he still has an infection. What really stinks about those visits is they usually swaddle him and hold him down so they can look in his ear, and he will cry and scream like a banshee. Bless his heart... I swear I'm a hot mess myself not being able to do anything for him except talk to him quietly, while he stares in my eyes crying furiously unable to move. He has gotten to the point that seeing any doctor (or having his hair cut even) is a complete drama because he's still terrorized by the swaddling and poking and prodding he's been through. The last time we went in February to see his ENT, he was given the all clear finally. He has some funky colored blue and and green prescription ear molds he wears in the bathtub every night too help keep the infections at bay since his infections seem to be at least partly related to water and soap in the ear. He will bring them to me every night to put in his ears with no issues, but tonight he said "ow" when I first tried to put them in his ears. I'll have to call tomorrow and see if we can get squeezed in this week.

We've been blessed with a child with near bionic hearing... He hears EVERYTHING! I think of him as my hearing ear child because he has a way of letting me know what's going on around us. It's impossible to sneak off from him because he can hear the slightest turn of a doorknob (and oh the drama and tears if anyone leaves the house without him!!!) I can't believe my husband, who has classic selective listening skills like most men I know, *ahem*, and I, deaf as a doorknob, were blessed with a child so healthy that could hear just about anything. I especially love it when we are in the house, and he can hear a train whistle over a mile away or in the evenings when he lets me know his daddy is home, sometimes before James is even in the door.

I just don't want to risk Aidan losing any hearing from these repeated infections, and I know that now he has a fever I'm going to be calling first thing tomorrow and begging for a check up a.s.a.p. I was three years old before my hearing loss was detected. My mother had rubella when she was pregnant with me, but I am inclined to think that the high fevers I had after being sick with multiple childhood illnesses caused most of my hearing loss due to my age at detection and the fact I'd started acquiring language prior to detection. So, I'm inclined to be extra cautious and paranoid about any fevers Aidan has at this age, especially when he's rubbing and pulling on his ears.

On a side note.... the ringing lives on in my implanted ear five days after activation, although I'm learning to co-exist with it. I made an appointment for Thursday this week for a follow up with a different audiologist to see if some adjustment can be made for my sanity. My brain is completely lost, dazed and confused without a clue what to do. If nothing else, I might be able to turn the volume down on program one, but I'd really like to get a boost in the bass sounds. I'm not sure if that's something I can request since I tried to ask my regular audiologist for that last week, and she didn't really respond to it beyond saying she'd already mapped me by what I "told" her when she tested me. *blowing raspberries*


  1. Hi Michelle, Sorry to learn Aidan is unwell. My own son ended up having seven sets of grommets in his ears. Finally he had some teeth work and they stretched his face 1/2" wider. From thereon he has had no infections and can smell!

    Ask your audiologist to make you volume adjustment 60% of your MAP. She can do that with a mouse click and make your life much more pleasant! I found the standard default setting is something like 20% and way to small for me (and you by the sounds of it)

  2. Good Morning Michelle,

    Oh, the frustrations of a sick child... poor little guy. Hope he is better soon. I just feel terrible when my little guy is ill.

    Hope your new audiologist can help you out. After 5 days with my new CI, I am completely convinced that the excessive racket and ringing is because my brain just can't go from 0% processing/decoding of high frequencies to trying to process all of them all at once, and at full strength.

    On the other hand, things are starting to sound more and more like my HAs used to sound to me. I was thrilled to be able to chat with my wife at dinner last night (in a very noisy casino). And she seems to sound more like I remember she did when I first met her. So some progress for me. But those high frequencies are still ringing and screaming at me too. I can't really believe that everything people touch should sound as loud as glass shattering while normal conversation is muted.

    Another reason I may be adapting faster than you is because I could hear pretty well when I was young (up to 25 years old or so) and so the audio memory I have may be helping me re-learn faster. I know that you've been HOH most all your days. So I seems natural that it will take more time for your brain to learn audio processing.

    If you can get a boot in the bass, let me know how you did it. I have one more opportunity on Tuesday to remap before I need to get back to work and out of state. I'd also love to get my lower frequencies boosted.



  3. Thanks, Colin... I'll ask about going 60% at my appointment this week. I'm definitely moving the volume down somehow because I'm not getting anything productive out of it (or maybe I should say I'm not recognizing anything out of it.)

    Dan, I did something weird today. I tried on my hearing aid while wearing my processor. I could hear out my hearing aid about 50% what I hear with the non-surgical ear with HA (can recognize speech but at reduced volume) but I still hear the high pitched frequencies going cuckoo from my CI. Any insight? (besides you think I'm absolutely nuts for trying them both on together???) However, I lost quite a bit of base (or is it bass?) sounds with the surgery... so even with the hearing aid on I'm still not getting enough of a boost in the low frequencies... oh maddening...

    I totally agree that your success so far is related to your ability to hear much better once upon a time... while I've gone from moderate-severe loss to severe-profound since I've been a munchkin... I truly thought my background and ability with the HA would be an advantage. It is killing me that I'm at ground zero here without a clue. Stinks that you aren't having better luck with the higher frequencies yet, but it's been less time for you than me... I bet you'll be a different man in a month with the quick success you've had so far. Hope so!!! :)

  4. Hey Michelle,

    Nope, you are not nuts.. i tried the HA and CI combo too...

    I actually hunted down and tried out my old HAs (not used in 10 to 15 years). Seems that the left HA is totally non-operational but the right still works (I can hear it feedback with my CI!). I tried the right HA with and without the CI ... nothing doing. There does not seem to be any thing left of my natural hearing in the implanted side that the HA would help. I wanted to use my left HA to try and "equalize" my two ears. It's really strange to listen to the CI side and the left ear at the same time... I find that if I concentrate, I can actually pick out one or the other, but it's a hard thing to do for long. My CI is actually starting to sound more and more like a HA. I need to see if I can get the left HA repaired. I'll see what the audiologist says tomorrow.


  5. Dan, when is the last time you wore your HAs? I'm a little confused about your background now... were you able to wear them pre-CI or did they stop working for you a long time ago? or... did you stop wearing the left one bcz your audi told you to leave it off while adjusting to the CI? My audi told me to wear my left HA while adjusting to the CI but to take HA off at least 30 min a day. Eh, left ear is basically doing all the work at the moment and learning to tune out the right side. LOL! I'll check in with you tmw to see how your new appt goes.

    DD, you are very biased towards HAs and negative towards CIs. FWIW, I considered the hybrid... did the research... and think CIs have more consistancy and a higher success rate. I'm sure that will change as hybrids become more common. I can't believe how much hearing I do have with a HA, and I'm only guesstimating that I lost half. I took a big hit in the low frequencies. I'm pretty talented in making do with very little with a HA, but a CI is a whole new ballgame. I have wondered if my implant would be compatible with Cochlear brand hybrid which would be cool since I have all 22 electrodes firing... and a hybrid has less electrodes than that since it is less evasive. If you plan to go the hybrid route you should probably talk to users and do a LOT of research. Some hybrid studies had a high failure rate in a study done not that long ago. Also, hearing loss can continue with hybrid users requiring them to eventually need another surgery to get the full monty with the CI. This is just my casual observation from research and talking to users who were in research programs. Take it with a grain of salt because you will obviously do your own research and come to your own conclusions.

  6. Poor Aidan! I can imagine it must be extremely frustrating to have to deal with the reoccuring ear infections... for both of you! Reading about holding him down and looking into his eyes brings so many memories to mind- I totally know how your heart breaks! I will be praying for him. That the infection will clear up quickly and stay gone!

    I'm sorry you've still got the ringing too. Hopefully they will be able to do something about that and you can enjoy your CI soon! :)

  7. Oh, Melissa... a mom's job isn't easy, especially when the baby is sick and in the hands of others while we can only stand by. I'm grateful we were able to get fitted in so quickly. Fever seems gone but not the infection.

    DD, I must've missed the hype myself... because I never heard the CI was a cure or gave normal hearing. I'm also confused by why you think you are qualified to assess that people you've never met didn't have proper HAs that weren't programmed correctly? Unless you are an audiologist working directly with that person, I'd say that is a sweeping assumption on your part based on a couple of paragraphs in a blog and an audiogram.

    I had planned to publish my audiogram, but knowing you are anxiously waiting for it to prove something to yourself or to debate something with me (or to even make a comment on another profile about what you found wrong with my decision) based on my audiogram makes it kind of unappealing to post for now. I'm sure I'll post it soon when I'm ready, but it will be for the purpose of sharing it as part of my story. I know some people genuinely follow these blogs to get as much info as they can because one size does not fit all and everyone adjusts to a CI differently. I've yet to talk to anyone that thinks they've been "cured", but I will say that for some people CIs are genuinely miracles compared to what they had before the CI, and I'll leave it at that.