The Trouble with Eardrums

Whitney was in for surgery again this past Monday.  It marked ear surgery number five for my little lady. Whit's ear, nose and throat specialist was concerned about the constant ear infections she continues to have.  In his office he wasn't able to really see the condition of her eardrums or her last set of tubes.  He recommended surgery to go in and assess the situation.  If the old tubes weren't doing the job, new ones could be put in.  Or if removing the tubes and stitching the eardrum closed would be a better option, the ENT would do that.

So it was off to the local children's hospital and after several hours of delay Whitney was in the operating room.  She was in for under twenty minutes.  During that time, the doctor found a blockage in Whit's right tube.  So that one got replaced.  But when he started work on her left ear, the doctor found that previous surgeries and infections haven't left much of an eardrum at all.  Her previous tube was gone and in its place was just an inflamed hole.  It's not likely that Whitney has much hearing left in that ear and the doctor is worried that the bones that mechanically conduct sound waves from the eardrum to the inner ear are also in jeopardy because of all the infections over the years.

We'll meet with the doctor in four weeks for a follow up.  We'll need to look into whether we allow some reconstructive surgeries or whether it will even be worth putting poor Whit through a bunch more pain for something that might not benefit her very much.

Thankfully, her recovery over the last few days has been pretty good.  Ibuprofen has managed her pain okay and she's eating and drinking like normal.  So we're relieved but disappointed and waiting to see what the next steps are.  Setbacks are never fun but I give thanks that she stills hears in her right ear and with hearing aids she can enjoy her favorite music, Tag books and TV shows.  This kind of thing is humbling, but since we've been through seizures and other serious health issues, we can put things in perspective and keep moving forward.

Hearing Test Time

Poor Whitney.  She hates having things put into her ears.  Yet she's always getting poked and prodded there.  It had been quite a while since her last hearing test, so this week it was off to the audiologist.  With kids, hearing tests can be a pretty inexact science.  Everything hinges on how well the child participates.  If they don't respond to a sound it gets marked as not being heard.  But often it's because the child is daydreaming, or tired of participating or just plain frustrated with the process.  This happens all the time with Whitney and the trouble comes when they adjust her hearing aid volumes based on the inexact test results.  If certain tones are too loud wearing her aids can actually be painful.

Last time Whit was tested, she was pretty tired out by the time it was her left ear's turn to be tested.  She didn't cooperate very well and so the audiologist had to do her best to approximate the result.  Thankfully, during her most recent test, Whit cooperated much more willingly.  The new readings, which we believe are more accurate, also show that she has more hearing in her left ear than what the audiologist estimated previously.  We're thrilled that she has better hearing in that ear than we thought.  The bad news is that probably means Whit's left aid was blasting her out because we thought she needed more amplification in her left ear.  No wonder she gets tired of wearing those things sometimes.  Hopefully, she'll be more comfortable after the latest adjustments.  I'm glad she participated well this week because I know inside Whitney is just thinking, "Oh great they're going to stick stuff in my ears again."    If only we could explain to her how important those test are and how they help her.

New Ear Molds

Whitney has had good success over the years wearing her hearing aids.  She pays better attention in class and participates more because she can hear more.  But just keeping hearing aids working can be costly.  Whitney has custom molds taken of her ears in order for the aids to funnel the sound directly into her ears without interference.  And as you can imagine, those molds get out of date as Whit grows.  That makes them whistle and squeak.  And when they get really loose, they get uncomfortable and just don't stay in.  That's when it's time to go see the audiologist for a new set of molds.

Currently, with Whitney's growth rates, she needs new molds every few months.  It costs us about $150, after insurance, to get a new set of molds made.  And the worst part is that the process of taking the impressions makes Whitney incredibly upset.  She hates having things stuck in her ears and it's a battle every time we go.

Then, every once in a while Whitney will get bored while she's on the bus or watching TV and chew up one of the molds so it can't be used anymore.  It can be several weeks in the mail before they arrive.   And once in a while it just takes extra long to get an appointment with the audiologist  So sometimes Whit just has to wait.  She gets by with one or no hearing aids at all.

But not anymore.  Our audiologist took new molds of Whit's ears last week.  But she also had a great idea.  She gave us some new tubes that don't have to be custom fit.  They have a tip at the end that fits into the end of her ear canal like a tiny silicone headphone tip.  They aren't a perfect fit like the custom molds, but they cost next to nothing and in the event of a chewed up, lost or outgrown mold, Whitney can wear one of these new ones to get her by.  It certainly beats not hearing.  They don't fit tight enough to use full time, because Whit still just doesn't leave her aids alone.  But maybe someday they'll be a way to alleviate the whole custom mold situation altogether.  Here's hoping!

The new Hearing Aids Have Arrived, Finally!

After literally months of waiting due to ear infections and other health issues, Whitney now has ear molds that fit and brand new hearing aids that are tuned for her needs. Her ears have stayed clear enough over the last few weeks to allow for the molds to be taken. Then we waited two weeks for the molds to be made and shipped to the audiologist. As soon as they arrived, Whit went in for a hearing test and a fitting for her new aids.

And the result has been wonderful. No more needing to call her name three times to get her attention and more vocalizing during the day. Melanie and I were very worried Whit wouldn't tolerate the new aids after being without any correction for months. But the audiologist has kept the volume dialed back a bit so Whitney's not overwhelmed.

The aids themselves must be incredibly comfortable to wear. The weigh literally almost nothing and they're barely big enough to house the battery at the largest end. They feature an indicator light to ensure they're on and working and they don't have an on switch to make sure they don't actually get turned off during the day. Instead we simply flip open the battery door at the end of the day. The new aids are the shade of pink Whitney requested and the molds contain a special sparkle pink glitter. Perfect for my little girl.

Whitney has worn them partial days since she got the new aids in the middle of the week and hasn't complained or taken them out. They're helping her hear much better and they arrived before the beginning of the new school year. I'd call this a huge success.

The Battle of the Ears

It's been over a month since we gave up looking for Whitney's lost hearing aid and ordered new ones. In fact the audiologist has been in touch to let us know that they arrived some time ago. But Whitney hasn't been able to get them fitted and start using them. We can't keep her ears clear and clean long enough to take molds!

Whit has had a terrible string of ear infections and blockages this spring and summer. And with all that stuff in her ear they can't take molds. To see how to improve things, it was time for another trip to the ear, nose and throat specialist. After looking Whitney over, he surprised us. Whit does still have tubes in both of her ears, he told us. Her pediatrician pulled one out at a checkup, but it must have been from a prior set, because the ENT found two today. One was coming out so he removed it but confirmed that the ear drum still had an opening to allow for draining.

Based on this news we know Whit doesn't need new tubes, but we're still concerned about all the ear infections. The ENT recommended some new ideas to help. The main enemy is all the moisture that builds up in Whitney's tiny ear canals and fosters bacteria. He said we could set a hair dryer to cool and actually blow dry Whit's ears after her baths. Sounds pretty funny but if it helps, I'm game to try. Also, we'll keep using ear plugs in the bath and ear drops to help clear wax away.

The best news of all is that the ENT was able to clear Whitney's ears of wax and she's not currently infected. So we're scrambling to get in to see the audiologist as fast as possible to get ear molds taken and hearing aids fitted. Whitney will soon be hearing well again! And we hope to keep her ears healthier too. Can't wait to see how she likes having her ears blow dried.

Oticon Safari 300s for the Win

Whitney and Melanie headed to the audiologist this morning to pick out Whit's new hearing aids. It was clear a lot of things have improved in pediatric hearing aids since Whitney's last pair, Oticon Gaias, were developed. The new ones the audiologist recommended, called the Oticon Safari 300, are much smaller and more powerful. The have a tamper proof battery compartment and an LED battery indicator to take the guess work out of whether the batteries are still good. And most importantly they produce more accurate sound, especially in the frequencies for speech. Oh, and they're less expensive than we planned as well!

Optional features for the future include being able to switch from molds to tubes that fit more like headphone earbuds for more comfort and less hassle. Safari aids also support bluetooth phones, iPods, remote control volume adjustment and there's an adapter for TVs as well.

Oticon makes the casings in all kinds of different colors so Whitney had some fun picking out the color she wanted. She told Melanie she wanted pink and red. But they don't come two tone and our insurance probably wouldn't cover two sets, so Whit decided on the pink pair. They also come with stickers to personalize them just for her. I'm sure she'll have fun putting those on.


I was also pleased to find that Oticon continues to supply the stuffed rat- I mean otter- with his own pair of hearing aids that I got such a laugh out of last time Whit was fitted. The idea is obviously to show the child about wearing the aids and how they look, but the result is stuffed animal obsurdity that had us all in fits of laughter four years ago.


Anyway, Whitney is really excited to have new hearing aids. I think they're going to be a great improvement. Now that the order has been placed, the new aids will arrive, be fitted with new molds and be calibrated for Whitney by the end of the month.

More about Hearing Aids and Tubes

Melanie has been hard at work to get the ball rolling for Whitney's new hearing aids. One of Whit's last pair was lost and we've given up hope of having it returned. And you can't just replace one because they have to match to work correctly.

As step one in the replacement process, we've verified that we do have some insurance coverage for hearing aids through my employer-sponsored healthcare. That will be a huge help in defraying the nearly $8,000 cost. And I'm learning more about how insuring hearing aids works. Typically, a patient is encouraged to purchase a three year policy that covers new hearing aids in the event of loss or damage. And health care insurance, as with our family's policy, covers the purchase of a new pair every three plus years. That way, between the two types of coverage, there's always a way to ensure Whitney has good hearing.

The next step is to get Whit fitted with new aids and get them tuned properly based on her unique hearing loss. This will be happening in the coming weeks and I'll keep everyone posted.

During all this, Whitney also paid a visit to the Ear, Nose and Throat specialist to make sure her ear drums and tubes are looking good. The ENT verified Whit's last set of tubes has dropped out and the ear drums have closed properly. This is good news since Whitney's general pediatrician thought he had seen a growth on one of her eardrums that might have required surgery to remove.

The ENT asked us to keep an eye out for ear infections now that the tubes are out. Hopefully, Whit's ears stay clear or it'll be time for what the ENT called T-Tubes. They're so permanent that they have to be surgically removed. We're really hoping Whit's ears have opened up enough to allow for normal draining. Which should help keep those nasty infections away without requiring any more tubes.

The Hearing Aid Adventure

Whitney has worn hearing aids since she was about 18 months old. Melanie and I are glad she started wearing them so early because they've given her the best shot at early acquisition and use of language. Starting early has also made her more tolerant of having her hearing aids in for the duration of the day. We've worked hard to teach Whit not to touch her aids or take them out by herself. The few times she has, they inevitably get put in her mouth or left around the house for little brother to find. Whit's current aids have been carefully dried after water exposure a number of times.

We've also had experiences where a hearing aid has come out and been left somewhere. The most memorable was when Whit lost one at Melanie's grandfather's viewing. But up until last week whenever a hearing aid has been lost, it's always turned up unharmed in just a little while.

Last Thursday, the family went out for dinner and a little shopping. When we returned and Whitney was geting ready for bed, we discovered one of her hearing aids was missing. We searched the house and the car. We called the places we'd been that night to report that we'd lost a hearing aid. But nothing turned up. On Friday, Melanie retraced the steps of the previous evening and visited every place we went. Her thorough search didn't turn up anything.

Yesterday Mel talked to the audiologist to see what she recommended. I'm glad she did, because what we learned made me feel a little better about the loss. The audiologist recommended we wait a couple of weeks before starting to work on getting a replacement. She said sometimes even after that much time someone will turn it in to a lost and found somewhere or it will turn up around the house. So we won't lose hope.

She also told us that Whit's aids are over four years old and most hearing aids have a lifetime of around five years. In fact, we had insurance covering loss and damage that covered the first three years after purchase, but due to their age that coverage had expired.

Even if we hunted down the missing one, we'd likely be purchasing new aids for Whitney in the next year or two anyway. The audiologist cautioned that we not purchase one aid to replace the missing one. It's critical to have matching ones to provide properly balanced sound. And besides, if we purchased one new aid, the other might stop working soon anyway. And given the amount of abuse those things have taken over the last four years, I can believe it.

So we'll be looking between the couch cushions and waiting for a call that someone has found the missing hearing aid. But at the same time, we'll be doing some research on insurance coverage, hearing aid models and prices. That way we can get Whitney hearing well once more.

And you'd better believe I'll be dreaming up some way of tagging the new ones with our phone number or maybe even some kind of GPS tracking device!

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Whit had a great time decorating Easter eggs as you can see from the smile on her face.

Continuing Ear Struggles

One of the disappointments at Whitney’s six year old checkup came when the doctor looked in Whit’s ears. “The left tube has come out of her ear and is sitting in the canal,” he told us. Yes, that would be the same tube we’ve had placed over and over again to help with Whitney’s ear aches.

Now that Whit’s adenoids are out when both tubes are in, Whitney is pretty healthy and happy. But we know almost immediately when that pesky left one has dropped out. Whitney has ear infection after ear infection.

She was treated for one in mid January. The antibiotic used to treat it worked great. That ran out last week. Sure enough, yesterday and today Whitney is again complaining of pain in her left ear.

Melanie and I aren’t sure what to do now. After so many tubes in that ear, I’m not sure we can ever find one that will stay in. And maybe we’re taking the wrong approach. I don’t know, really. I wonder what makes her left ear so uncooperative. The tube in her right one stays in and does its job very well.

I’m grateful that Whit is healthy in nearly every respect. We don’t have to worry too much about heart troubles or stomach troubles like so many of our support group friends. I just hope we can find something that will help Whit to be able to live without almost constant pain in her left ear.

Odds and Ends

No major stories to tell this week, but here are a few quick odds and ends:

Whitney loved trick or treating on Halloween. She walked around the neighborhood collecting candy until suddenly she dropped her candy bag. Melanie told her to pick it up but Whitney refused. So Melanie picked it up and realized it was pretty heavy. All that heavy candy wore Whit's arm right out!

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Whit and Melanie are at the ENT's office this afternoon to see how her tubes are looking. Her ears seem to be draining better after she's been sick. So hopefully both tubes have stayed in and are doing their job this time around.

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Melanie has been calling hotels in downtown Salt Lake City this morning. She's quickly narrowing down possibilities for the venue of next year's 1p36 Deletion Support & Awareness Conference. She's especially looking for a place that will have a free airport shuttle, plenty of conference room space, rooms with fridges and microwaves and a heated pool and hot tub. As soon as she makes the arrangements, we'll spread the word.

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Whit is bored with most of her toys. She's not really got that many things that keep her attention. Melanie and I are really trying hard to think of some new things she can enjoy as Christmas gifts. I just wish Whitney wasn't so hard to shop for. Anyone got some good ideas?

Hearing Improvements and Vocalizing

It's been nearly two months since Whitney's surgery to insert tubes that allow her inner ears to drain. In that time we've noticed some remarkable changes occurring. Whitney has begun vocalizing again. She's done this a bit in the past but for the last year or so, she's been pretty quiet. That's changed now.

What I love best about her new found ability to vocalize is that it's what I would call social vocalizing. She's not just saying, "aaaaaaaa." She's doing it in response to something Liam says. Or she'll make a sound. Then I'll match the sound she made. Then she'll make the same sound back again.

It's really starting to give me hope that she'll be able to speak one day. Melanie has begun working with Whit using our Z-Vibe again. This should give her more sensation in her mouth for forming actual words one day.

Melanie and I think this progress in vocalizing is due to actual improvements in hearing that are likely the result of her ears finally draining. It may also have to do with Whitney's brain better understanding what to make of the stimulus her ears are sending it. This is based on what Dr. Perszyk has studied and shared at conferences.

But whatever the reason, I'm hopeful that better hearing and maybe even speaking will someday be in Whitney's future.

Also, Whitney has learned to apply makeup by studying her mother's expert hand. You can see her in action in this post's photo. She may not say a whole lot yet, but she's very observant.

Tubes and Adenoids: Success!

Yesterday was surgery day for Whitney. We arrived as requested at 6:45 am and waited with other little families and their children to be checked in. Whitney was pretty brave during the pre-op exam. For those keeping score at home, she now weighs about 28 pounds and has very typical blood pressure for a five year old.

After the exam, we changed Whitney into her ICU gown and waited in the surgical waiting room with the other families. One by one they were called back. Whitney’s new ENT came by and asked if we had any questions. The anesthesiologist also came and talked to us briefly. He was very confident and had no problems with the fact that Whitney has a genetic disorder. This was refreshing after our earlier experience.

Then it was time for a little Valium to calm Whit’s nerves and a ride in a wagon down the hall to the OR. Whitney was a good sport and cooperated with the hospital staff. Melanie and I went to yet another waiting room.

A half an hour later the ENT was back to see us. Everything was a success. Her tubes were quick and easy to place and her adenoids were out. They were what he called a 2.5, so it was good to remove them. I’m not sure of the measurement system they use for adenoids but they were larger than they should have been. Having them removed will allow her ears and sinuses to drain more easily and she’ll also have an easier time breathing.

Whitney came to about an hour following the procedure. She was sore and upset (anesthesia always disorients her) but Melanie calmed her with some music. Kermit the Frog singing “Rainbow Connection” works every time. Whitney got some Lortab for the pain and watched some cartoons. She kept everything down and was extremely cooperative. So by noon they checked us out. This sets a record for our fastest turn around time for an out patient procedure.

Whitney’s face is a little swollen and, by her breathing sounds, so are her sinuses. She hasn’t had any bleeding in her ears or nose though. We’re pleased about that. Her appetite is pretty good but we know it hurts to swallow. She winces almost every time. When she has her Lortab in her, she’s happy and plays about like normal. So we’ll manage the pain for a few days and start to scale back on the pain killers.

Full recovery should take a couple of weeks and in the end she’ll be breathing easier, hearing better and less prone to infections. We’ll all be excited for that.

A Major Snag

Our plans to get Whitney's ears and sinuses feeling healthy again have hit a major snag. The ENT and the hospital have been working with us since Friday because the anesthesiologist refuses to work on Whitney.

Once the anesthesiologist caught wind of Whit having 1p36 Deletion Syndrome, he said he was not willing to intubate her for the part of the procedure to remove her Adenoids. He felt she was too high of a risk.

Melanie and I are not happy about it and have tried to get records from her previous surgeries sent to this doctor's office to prove she does just fine. She's even been intubated before during her eye surgery. Everything went great. But Whit's records from those surgeries are boxed up in the local children's hospital archives and couldn't be sent in time to convince the anesthesiologist.

The hospital won't release this uncooperative doctor's name so we can contact his office. And when we suggested rescheduling during a different anesthesiologist's shift, the nurse said it wasn't worth it. They talk amongst themselves and would take a united front not to treat Whitney.

The claim is that they do not have the equipment necessary if something went wrong. I'm no doctor but I can understand their concern. Anesthesiologists are some of the most sued doctors around, so they play it safe. But we're talking about a hospital that was just opened a year ago. It's the largest and most modern facility in our state. Their claim of not having equipment just doesn't seem to hold much water.

But no matter. We're back to square one. We'll need to find a new ENT (again) with rights perform the surgery at a different hospital. Then we'll go through the checkup process again and hopefully the ENT will agree to the same course of treatment. Then we'll reschedule the surgery. This will consume additional time and money, which doesn't excite me. But the worst aspect of all this is that my little girl will continue to suffer from sore, plugged ears and possible sinus infections while we navigate the red tape.

Anyone out there have any suggestions? Sorry for the rant. It's tough for me to sit there and take it when another person's decisions take a toll on my child's well being.

Learning about Hearing Tests

I'm learning more about the process of hearing tests. The school system and Whitney's audiologist seem to require them more often than I used to be comfortable with. That was before I learned a bit more about them.

Whit usually gets to have a hearing test in a booth where she sits with an audio probe in each ear. The technician sits outside the booth at a control board sending in different frequency sounds to Whitney's ears one at a time. The goal is to get Whit to turn to the left or right when the sound is sent to that ear. When she does she's rewarded with some kind of visual stimulation as well. Depending on the booth this might be a toy or an animation on a computer monitor. This whole process is usually repeated once without hearing aides and again with them to see if the correction she's receiving is adequate.

For some reason Whitney's reflexes aren't wired to look in the direction of a sound's origin. That's been something she's had to learn. So by having regular hearing tests she's also receiving hearing training. Each time she goes she gets a little better at associating the sounds in her ears to the sights she sees on the corresponding side booth. So I'm learning not to gripe so much about Whit's frequent tests. They help her learn to hear.

This past week her test to get ready for kindergarten was productive. Whit managed to get through the aided and unaided tests without getting tired or uncooperative. And we got a good set of results that showed her hearing has not gotten any worse since her last test. This also means her hearing aids are properly adjusted for her to hear her teachers and her parents. At least she'll be able to when she's not consciously ignoring us. Not that a child would ever do that, right?

The Great Hearing Aid Massacre of 2008

Okay, time for a rant post.  When Whitney was first fitted with hearing aids over two years ago she took to them quickly and loved being able to hear more clearly.  Things went pretty smoothly until a few months back.  That's when the trouble started.  

On the last day of school Whitney removed one of her hearing aids and chewed it up on the bus ride home.  We scolded her and told her how bad it was to chew on her hearing aids and hoped that she understood.  We wondered why she had stopped tolerated her aids and traced it back to some volume adjustments that were made after a recent hearing test.  I think at least one of the frequencies was out of whack and blasting poor Whitney's ears out.

So we sent the aid in for repair and let Whitney take some time off from her hearing aids in the mean time.  Then when we got the damaged aid back, Whitney had a new hearing test and had her aids adjusted based on the results.  Melanie and I had hoped that this would get Whitney back to enjoying her aids and hearing as she should.

I just wish that was the end of the story, but it's not.  On the car ride home from the audiologist Whitney began pointing and asking to have her hearing aids taken out.  Melanie told her she could have them out when they got home.  Once they arrived at the house, Whitney seemed fine so Melanie let her go play with her hearing aids in.  Melanie took just a moment to slip into the bathroom.  And when she got out Whit had taken one of her hearing aids and started chewing on it again!  It was like she was waiting for a moment when she wasn't being supervised and then capitalized on it as soon as she was alone.  Melanie scolded Whit again and explained how bad it was to chew on her hearing aids, but we're not sure if the message is getting through.

So Whit's going without her hearing aids again while the damaged aid is off to the repair shop a second time.  And we're not sure what to do now.  Even just trusting her with her hearing aids for a minute or two is a scary prospect.  She might whip them out and chew on one of them again the minute we turn our backs.  For now we're trying to figure out some new ideas to try while that broken hearing aid gets repaired again.

Speech and Hearing Update

Melanie continues I take Whitney to speech therapy every other week. Her progress is slow but we keep trying.

Last week the therapist focused a bit on listening comprehension and Whit did very well. The therapist asked, "Can you point to the glass that is empty?" Whitney got it right first time. She did just as well with full and with various colors and shapes too. She's a pretty sharp little listener really. And this was all without the help of her hearing aids. Which makes me very happy. I'm still convinced that she needs her aids but it's great she can function so well without them.

Speaking of hearing aids, I mentioned how Whitney chewed up her aid on the school bus the last week before summer vacation.   In the ten minute ride home from school she pulled the aid apart into about three different pieces and chewed on the actual aid casing.  So she's been getting along with one or completely without on occasion. But we arranged with the audiologist to have the worst of the damage repaired. Melanie and Whitney went to have it looked at yesterday. The best news is that the repair should be covered by our insurance and we should have the aid back in a week or two. So hopefully the first of what will likely be a lifetime of hearing aid repairs will go smoothly.

Once we get the damaged hearing aid back, we're going to work slowly back up to having Whitney tolerate them all day.  She's been pretty resistant lately and we're not sure why.  The audiologist thought she saw some evidence of fluid in one ear so we're using antibiotic drops to clear that up.  We'll also see if we can get a better hearing test so we can adjust her aids to the right level of correction.  Whitney might be getting blasted out on some frequencies right now and that would motivate her to take her hearing aids out too.

The Adventure of the Missing Hearing Aid

Recently my wife's grandfather passed away and my family attended his memorial services. Just before they had a family prayer and closed the casket, I glanced at my daughter and noticed one of her hearing aids was missing. I was shocked and immediately started looking around thinking maybe it had just fallen out. It wasn't anywhere nearby that I could see. Of course there were all kinds of people and lots of children everywhere and I had no idea when she might have lost it. I knew she had it when we got to the mortuary. Had she taken it out or had one of her mischievous cousins taken it?

Maybe it came out in the car. I dashed out to the car and looked all around. No luck. I retraced our steps and looked in the waiting room. In and under the benches, around all the floral arrangements. No hearing aid. All the while I'm reminding myself how much the hearing aid cost and how much trouble it would be to replace it. Panic set in and I couldn't find the hearing aid anywhere. So I went back to find my family and participate in the closing of grandpa's casket.

Turns out that while I was out panicking and running around, my wife had found the hearing aid in the hood of my daughter's jacket. It was all safe and sound. The mold on that aid had been getting kind of lose in my daughter's ear lately and her hood must have caught on the hearing aid just enough to dislodge it from her hear. Needless to say we ordered new molds the very next week. Good and tight ones!

I sure am grateful that my little girl generally leaves her aids alone and treats them with respect. I've heard of so many kids taking them out or damaging or losing them. I'm just way to prone to panic when this sort of thing happens. I guess I'd better get used to the idea of losing them someday. Murphy's law says it's bound to happen, and they benefit her so much that it's definitely worth the risk. If my luck has anything to do with it, she'll probably decide to put them in the toilet to see if they float! ;-)

Hearing Is Believing

Over half of the individuals diagnosed with a 1P36 Deletion have hearing impairment. My little one has flunked more hearing tests than most individuals take in a lifetime. We've been working with several audiologists and an ear, nose and throat specialist to help her overcome this as much as possible.

First she got tubes to help her inner ears clear out. I have to say, if ever you're going to have surgery, I recommend having tubes put in. I recall being billed for a total of 11 minutes of operating room time. And my daughter was happily playing like everything was normal that same day.

Once, we knew her ear canals were cleared up we did some more extensive testing to see what frequencies she'd need to have corrected. Most hearing losses are in the upper frequencies, but it turned out that my little one was missing out on the lower frequencies. That meant most vowel sounds in speech and other important sounds weren't getting through.

My wife got in touch with the State School for the Deaf and Blind and coordinated with their audiologist to borrow a pair of hearing aids for our little girl to get used to. We just picked them up this past week and it's amazing the difference we've seen already.

We went for a walk that same evening and my daughter kept looking in the sky because it was the first time she'd ever heard an airplane fly over. She whipped her head from side to side because she'd never heard a car go by before. She laughed as we talked to her. It was truly a miracle happening right in front of me.

Getting hearing aids will be an adjustment. She gets very angry when my wife or I put them in, but after she calms down it's really amazing to see her react to all the sounds she's never heard before. She mostly leaves the aids alone once they're in, which is good. Although my wife did catch her pulling the right one out of her ear and chewing on it this morning. I hope we break her of that habit quickly, especially since their on loan until we save up to buy her a set of her own! We'll make sure we clean them regularly! ;-)

When raising a disabled child, much of the progress comes pretty slowly so when a major breakthrough, like being able to hear, comes along, it's so much fun. You can actually see the wonder on my daughter's face as she rediscovers her world that is now filled with sound. Soon we hope she'll start mimicking speech. Some babbling around our house would be welcome noise for sure!