[desilu1991]

Today was the day we finally got to go to the ENT and have Luke checked out and have his hearing tested. We have looked forward to this moment for so long, because we know in our hearts that he can hear, but we want it confirmed medically.

This is what we found out. He has a small amount of fluid in his right ear, which was supposedly the one that he has 0% hearing in. The doctor said it wasn't that significant of an amount and thought it might be due to his hysterical screaming while they were prodding in his ears. He's going to recheck it next week.

Then we went to "the sound room". I was instructed to hold Luke on my lap and not to "react" to the sounds they sent through the speakers but they were going to watch him to see his reaction. There were all kinds of different sounds.. tones, hi and lo, voices, and words. He did not have one response to any of the sounds. He never even flinched, even when it was very loud to me.

My husband was sitting outside the room with the audiologist and getting very nervous. He told her that he is saying some words and mocks us constantly. One thing he does is pat his little jelly belly when we say "ho ho ho"... So finally, when she was ready to give up and say that she thought he really was completely deaf, she said "ho ho ho"... and he looked up and started patting his tummy... I nearly cried. She did say it in a pretty loud voice and when she lowered the volume, he didn't respond. So she tried another of his tricks at the volume she first asked him "ho ho ho"... When you say "hello" or he hears a phone ring, he puts his right hand to his ear, and pretends he's talking on the phone. We didn't teach him this. Just one night, he picked up a water bottle and used it like a phone and we figured out what he was doing. So when she said "Luke, hello", he once again responded and put his hand to his ear. Then the same thing again.. no response at a lower volume.

So, then we went back in to see the doctor again. He said that the test basically didn't go as he hoped and he can't tell us that his hearing is perfect. He believes he does hear, but to what extent, he couldn't tell by the test. He was worried that he had no response at all to any of the sounds in the sound room except for his tricks. What he wants to do now, is have us come back next week, to re take the test with both of his audiologists present. He said if we get the same results we got today, we'll have to schedule an ABR and he'll have to be sedated. This is the test he had at 3 months which showed he was profoundly deaf.

So, we're back to more waiting to find out to what extent he can hear and what type of hearing loss he has if he does have one. I know he can hear and that he seems to hear almost everything but I don't understand why he had not one response to the sounds today. Please keep him in your prayers as he faces the test next week. I'm a little bummed because I thought we'd be breathing this sigh of relief and celebrating tonight. I am thrilled and thankful that he did respond to the "ho ho ho" and "hello"... Maybe he's just being stubborn and ignored the sounds on purpose.

I'll keep you posted... Thanks for all your prayers... I still believe God healed his ears and maybe this is just a test of my faith.

Judy

[astra]

Judy, Luke will most surely be in my prayers and thoughts!!!

[Princesa's Mama]

Judy, I am sorry that you did not get a confirmation of his ability to hear!! A guy that likes the piano as much as he does must hear!! I hope that you will soon have your heart put at rest. I will pray for you and Mr. Luke! He is one of the most adorable little guys I have ever seen!

[rosenfeldwest]

Hi Judy,

I can only imagine how worried and anxious you must feel. If your son is in fact hearing impaired, there is really so much that can be done now. One of my best friend's 5 yr old son was profoundly deaf at birth and got a cochlear implant at 1. This little boy's speech is perfect. You'd never know from hearing this child speak that he's hearing impaired. I'm sure my friend would be happy to talk to you about her experience. If you think that would be helpful to you now or in the future, I can PM you her contact info. But I'm hoping and praying that it doesn't come to that and that you do get confirmation of Luke's ability to hear

Hang in there.

[doghouse]

Judy,

Wow, he is so young and beautiful. I haven't been following your story, but does he have tubes yet?

Best wishes,
Tammy

[desilu1991]

Thanks, everyone.. Rita...I would like your friend's contact info. That would be great. I do hope it doesn't come to that either, but I'd love to hear how her child got to the point he's at now. Thanks for the encouragement... I still feel like he's going to be fine on the next one... in a way, I think I want them to just repeat the ABR and tell me the results are normal now....

Tammy, no he doesn't have tubes yet. He's only been home about 5 weeks and this was his first visit to the ENT. He was diagnosed as being profoundly deaf when he was 3 months old. He seems normal, actually, he seems very intelligent, and quick to pick up on anything and we think his hearing is fine, but didn't get that medical confirmation yesterday like we hoped... so maybe this next week, it will go better. Thanks for asking.

Judy

[Alesanto]

Judy,

I will be praying hard for precious Luke. He is an amazingly cute little guy and will win the hearts of many. Be stong and have faith that no matter what happens things will be OK!!!

Give the heartbreaker a hug from me, I imagine the visit to the DR. was stressful for all you guys.


Lisa

[desilu1991]

Thanks so much, Lisa. You are always in my prayers as well, and I hope good news is coming soon for you, too!

Judy

[DPline]

I am so sorry it didn't go as well as you had hoped. You and little Luke will be in my prayers. You never know with kids - especially at the doctor's office. Maybe he just didn't feel like "performing" that day. Hang in there and have faith.

[Annee]

Judy, I'm keeping Luke in my thoughts. From everything you've told us about Luke, no matter what his hearing is he's going to be wildly successful in life.

[jt421_2000]

You are in our thoughts and prayers!!

[mombyfaith]

To perform a miracle!
We are praying for your precious family!
Teresa

[WVUMom418]

Judy,

I know this must be hard for you and we will keep Luke in our thoughts. There are so many options available today that will be able to help him if he does have some hearing impairment. Look forward to you updates next week.

[wvamom]

Judy,

Thanks so much for keeping us up to date on Luke. I have been praying for him ever since the first time you posted about him. I know it is stressful to be "up in the air" about your child's health, and especially his hearing, since that can affect his language.

As DPline said, it's hard to tell about kids in the dr.'s office, especially little ones. He may not have been interested in what the audiologist had to say.

My 12 year old son, who had Down Syndrome, has been tested by several times for hearing loss, and even though the ENT dr. diagnosed mild to moderate hearing loss in both ears in the lower ranges, he hears conversation and language just fine. (although listening is another matter altogether). He doesn't even require hearing aids.

So maybe Luke will not require intervention, either.

Thanks again for keeping us up to speed. I will keep you in my prayers.
Carolyn

[csw]

Hi
Sometimes the kids just don't feel like being tested! I will look forward to hearing what the next tests show..
keep us posted and hang in there..