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View Full Version : my toddler has hearing loss.**Update #64**


itsjustmeghan
07-05-2007, 09:42 PM
so when my owen was born, he didn't pass his hearing test at the hospital. he didn't pass it at the dr's office the weeks after. so after an ABR was done (test while baby is sleeping to see if ears function) i was told everything was fine. we had to follow up when he was around 10 and 16 months old to do response tests to make sure that everything was still okay.
well, 10 months he passed.
he just had his test at 16 months and he failed. he has mild hearing loss. so now we're going to an ENT again to find out if it's fluid in his ears (which i don't think it is because he's never had an ear infection) or if we need hearing aids. and to make matters worse, i'll need to get all of this sorted out before i get laid off in september when my office closes and my insurance ends...
i had a feeling this was going to happen because he's not talking. and he doesn't really respond to things like "get the ball". but i'd just hoped he was a visual learner and just giving me a hard time not talking until he had a lot to say...

i know i should be greatful that he can hear and that he is a wonderful little boy. so smart. so sweet. but i worry. i worry because i had friends in grade school with hearing loss and they never seemed to catch up. even with hearing aids, they didn't speak properly and they were just slower to catch on to things....i'm glad we caught this early, and i hope it will stop him from having any long term effects, but i'm still worried...:pout:
blech...

anyone have any experience with this or can you offer any advice?
heck, i'll take hugs at this point!

iza
07-05-2007, 09:54 PM
Here's a hug for you :hug: I don't know much about this, but I know they can do more than they used to in the past. With hearing aids and help from specialists, your little boy can do well in school. :heart::muah:

angel4ever
07-05-2007, 09:58 PM
:hug:

Hi there,

I don't have any children. However, I am a preschool teacher and I fully understand how you feel.

It's hard to imagine that he will never "catch up" or "be on the same level" as his peers. From what I understand you say that his hearing loss is mild. He may have some difficulty pronouncing some words properly, but that should not cause significant delays in learning.

If I might make a suggestion. As an additional method of communication, you could try teaching him sign language. A lot of people assume it is strictly for people with permanent hearing loss and that is not the case. As a matter of fact I had to teach three students in the past two years some sign language because they had some speech issues. (not reflecting any hearing loss) You would be amazed at how much they enjoyed learning and having an alternate way of communicating with their friends. Of course I had to teach all the children some basic signs because they thought it was so cool to speak with their hands.

That's just a suggestion, but have no worry. With the proper guidance and all the love in the world he will be successful in school.

:hug::hug:

stirsmommy
07-05-2007, 10:07 PM
Hi,
I know at times like this it is difficult not to fear the worst. My youngest and my middle have fluid frequently without any infection at all. Now my middle use to have frequent infections and has had a few learning delays along the way due to not hearing well when she was little. She had tubes place at 18 months and it did help. At age 11 she still gets fluid in her ears but it is hard to catch because she reads lips (something she picked up before the tubes). Her delays have lessened with each passing year and now unless I were to point it out noone would know that she struggles with somethings. My youngest has had very few ear infections but does get fluid often. He has not needed tubes just occasional meds to help his ears drain. I only know there is a problem if he seems to not be following me. The dr. says sometimes it is caused by allergies although he rarely presents those symptoms either.
Hang in there. Trust that it will get better.

auburnchick
07-05-2007, 10:08 PM
:hug:

::::::::::::Prayers being offered:::::::::::::::::::

Mariblue
07-05-2007, 11:10 PM
Yes, get the test for fluid in the ears. I also reccomend sign language, especially since he is not talking yet. As he learns to talk, the sign language will phase out naturally, especially since his hearing loss is only mild.
My son has some hearing issues, although it's not hearing loss. But the sign language helped him soooooo much. He was three when he finally started talking--so we had a couple of years there when he was just so frustrated because he couldn't communicate with us. My husband brought home a baby sign language book, and my son taught himself the signs from that book at the age of two. After that, I started teaching him sign. He's seven now, and talking just fine, although there are some speech issues. He doesn't sign anymore, and only used sign for a couple years.
Sign language could be a wonderful thing. Also you might want to think about speech therapy as well, to get a jump on his articulation etc. But you want a good therapist that will give you things you can work with at home, and the tools you need to work with your son.
I know it's hard, but you can do this! :hug::hug::hug: Also, check out the Signing Time DVDs (http://www.signingtime.com/index.php?cPath=34). My kids love them.

Dangles
07-06-2007, 12:53 AM
:hug:and prayers.

chrislt8
07-06-2007, 01:47 AM
We have a genetive hearing problem in our family - 4 out of my 8 siblings (me included) developed it in our early twenties and it is progressive, getting worse as we age. I have a niece who was born with severe hearing problems. It is amazing to me what the doctors (hearing aids, etc) and schools have been able to do to help her communicate and function well in the hearing world. If it turns out that your son does have hearing loss and it's not just fluids, talk to his doctors and reach out for all of the educational assistance there is out there - the earlier he starts the more natural it will all be for him.

One thing I have learned is how crucial a sense of humor is to a hard of hearing person. All the "problems" - the misunderstandings, miscommuincations, etc. are so much easier to deal with if you can laugh about it. Of the 4 of us that deal with this problem, the ones who can laugh at themselves about it are the ones who deal with it best and have it least effect their daily lives. It is very easy to become withdrawn when you are hard of hearing as the effort needed in social situations just sometimes feels like too much work - and if you don't laugh about it then others around you can become awkward too. But if you can laugh about the misheard things instead of being embarrassed, somehow you become the life of the party and people enjoy interacting with you even when it is a little more difficult (The 4 of us have been known to have coversations not realizing we were talking about completely different subjects - and thoroughly enjoyed our afternoons of chatting LOL)

Seriously, I in no way mean to make light of this and hope that it just turns out to be fluid - but if not, remember that this is something than you can deal with and, though you may have to find different ways to help him this is a challenge he will be able to overcome. Thank goodness that they test for this so early now that children like your son can get the help they need before they become isolated and withdrawn.:hug::hug::hug:

itsjustmeghan
07-06-2007, 07:45 AM
thank you all so much for the support. i'm hoping it's fluid..but we'll see.
i've been working on sign language off and on with him for a while. because he wasn't speaking i was working REALLY hard trying to find words and sounds that he'd like to say.
sign language is going to be rough because i'm not home with him all day to reinforce it all. i'm going to talk to his DCP and see if she will help me out more with it given the circumstance. maybe i'll buy her some sign language DVD's or something she can play for the kids so they can ALL learn it together.

KnittingNat
07-06-2007, 07:58 AM
:hug::hug::hug:I hope it'll work out for your DS!

ADAllen
07-06-2007, 08:03 AM
:hug::muah::hug:

candicane
07-06-2007, 09:19 AM
I am hoping for you that all goes well. Our DD does not have hearing loss, but was little bit of a late talker because she is learning 2 languages at home.

We learned some baby signs with our DD (now 2-1/2). I tried to "teach" them to her, but it that method did not seem very successful. We also tried a DVD, but she did not like to watch TV. I got a little board book at the library with some of the basic signs and she picked it up on her own from looking at the pictures around 16-18 months. She loves books.

Happy thoughts for you and your family. Life with a toddler can be difficult enough without added hurdles!

candice

Kaydee
07-06-2007, 09:33 AM
:hug::muah:

debinoz
07-06-2007, 09:51 AM
I hope everything goes well for you. It's always one thing or another with kids, isn't it?!?

There are quite a few people in my family that are hearing impaired. My sisters 2nd and 3rd husbands were HI as were 2 of my step nephews. They were all older though when I met them. The only one that I've had any experience with is my DH's brothers son. He has severe hearing loss. He wore hearing aids in both ears until the age of 3 when he got the cranial implants. His mom already knew sign language so from the minute they found out, she started speaking verbally and in sign to him, even though he was just a few months old. He went to a special preschool that helps phase HI children into public schools. He stared attending regular school in first grade. He may have speech problems, but that never stopped him because he was always treated like any other kid and with an upbeat attitude. He is now in the 7th grade and plays on his jr. high football team. He also makes A's and B's on his report card. He's a super kid and a huge bundle of energy.

ETA: Just wanted to add that SIL says they think the reason Justin can talk so well is that they put him in hearing aids as soon as possible.

Mariblue
07-06-2007, 10:41 AM
One thing I have learned is how crucial a sense of humor is to a hard of hearing person. All the "problems" - the misunderstandings, miscommuincations, etc. are so much easier to deal with if you can laugh about it. Of the 4 of us that deal with this problem, the ones who can laugh at themselves about it are the ones who deal with it best and have it least effect their daily lives. It is very easy to become withdrawn when you are hard of hearing as the effort needed in social situations just sometimes feels like too much work - and if you don't laugh about it then others around you can become awkward too. But if you can laugh about the misheard things instead of being embarrassed, somehow you become the life of the party and people enjoy interacting with you even when it is a little more difficult (The 4 of us have been known to have coversations not realizing we were talking about completely different subjects - and thoroughly enjoyed our afternoons of chatting LOL)

Seriously, I in no way mean to make light of this and hope that it just turns out to be fluid - but if not, remember that this is something than you can deal with and, though you may have to find different ways to help him this is a challenge he will be able to overcome. Thank goodness that they test for this so early now that children like your son can get the help they need before they become isolated and withdrawn.:hug::hug::hug:

I totally agree about the humor thing. It can help so much.

kellyh57
07-06-2007, 12:20 PM
My sister's niece is hearing impaired. It started when she was a baby and eventually she became completely deaf. She wore hearing aids for the first 7 or 8 years. One day she was playing and it "stopped working." She took it to her dad and he played with it and it seemed to be fine. They took her to the doctor and as they had expected she had lost her hearing. She got cochlear (sp?) implants shortly afterwards. They work wonders. She can hear just fine with them in, but at night when she takes them out, she's deaf. My sister's kids have a hard time understanding why Lexi can't hear them at night. The whole family learned sign language when they learned of her hearing loss as a baby and used it with spoken language when she could hear. Now they don't need to as they are all pretty proficient at it, but it's very helpful to have as a back up when you can't talk outloud in certain situations. Sign language is so easy to learn once you get the hang of it. We learned a bit when my boys watched videos and it all seems to click at some point and become fairly easy to learn new words. A lot of daycares and preschools teach it and there are a ton of resources out there for kids to learn it. (As for adults, that's a different story!) Even if he never does lose hearing, it's not a bad thing to learn!

Kelly

jjminarcik
07-06-2007, 06:08 PM
Sending lots of :hug::hug::hug::hug: your way!

geekgolightly
07-08-2007, 07:11 AM
:hug::hug:

It's hard to learn that your baby has difficulties in any form, and hearing loss is a big one. Join groups online or in your town that are for parents with hearing loss children, I think that might help a good deal.

Also, from a purely practical standpoint, if you have not found a new job in which you can transition straight to a new insurance (and 90 days is not a transition) get COBRA coverage! This way no one can deny you when you finally get insurance.

nadja la claire
07-08-2007, 05:21 PM
First :grphug: :grphug: :grphug:

My DIL has taught our granddaughter baby sign language even though she doesn't have any hearing impediment it helped our DIL communicate with our little sweetie before she could speak clearly. Our granddaughter is 3 1/2 now and she still uses sign language because it was discovered that one of her cousins is deaf and her mother wants her to be able to communicate with this cousin when he's old enough. Have you thought about sign language? I'll keep you in my thoughts.

:muah: :hug:

Nadja xxx

Jeremy
07-08-2007, 11:50 PM
:hug::hug::hug:

MommaG
07-09-2007, 12:20 AM
:hug::hug::grphug::grphug:

Rorshach
07-09-2007, 03:34 AM
Meghan,

While its possible that your child may have hearing loss, there are other ways to teach them, if you're able to teach signing, I would encourage that, then as they progress into understanding you, you can then teach them to write, as well as teach them visually. I pray that it's not a hearing loss, but even if it is, never give up. I knew somebody who was born with a severe hearing impairment, but using everything at his disposal, he could hear roughly 65% of what's going on. granted, you might not think that's a lot, but considering that his hearing was around 10% when he was a child, that's actually quite the improvement.

Aaron

itsjustmeghan
07-09-2007, 09:26 PM
Thank you again for all of the advice and well wishes and hugs!

We got his appointment moved up to the 17th, and since my mother in law works at this clinic, she asked her friend who does scheduling for the ENT to keep us in mind if there are any other cancellations sooner. i told her all i need is one day notice. she heard about my office closing, so she knows why we're trying to get in sooner rather then later.

we've been working on the sign language. he does signs for more and for drink, but that's it. it's hard when daycare isn't reinforcing them all the time. i'd like to think the DVD's will help, but he doesn't really like watching tv all that much because he'd rather be physically doing things. (maybe that will change when he can hear it better?)
i'm going to keep trying though. we're getting some dvd's for him from the library this week.
i'll keep you all posted.
:muah:

itsjustmeghan
07-18-2007, 04:18 PM
No fluid in his ears.
so now we have to figure out why he can't hear and rule out other conditions.
that means bloodwork and EKG to ensure kidney and heart are functioning properly. (i guess there are other conditions that will accompany hearing loss they are trying to rule out). they are also sending us to Children's Hospital in chicago to get a CT scan of his ears to see if there is anything physcially wrong, and the Audio Brain Stem Response test again to see if his inner ear is functioning. Both of these we have to have him sedated for.
I'm just crossing my fingers that they will get this done ASAP because I will only have insurance through August and then I get laid off and who knows what kind of coverage I'll have then. at least right now all of this testing will be covered 100% with no deductible.
I also found out insurance companies don't cover hearing aids, so we're going to start socking money away for that now as well because the dr said chances are that he'll need some.

I have a lot of stress on my plate, but I'm happy we caught it when we did. We got him some sign language DVD's and sent one with him to daycare. I'm already seeing him signing for "Eat" when he's hungry and "more" when he wants more. my day care lady said the other kids enjoyed learning all of the signs too, and have been using them around him. so hopefully he'll pick up some that way as well.

cross those fingers that we'll get the tests done ASAP and start working on getting his hearing aids so my little booger can learn to say "I love you, Mommy" (though it's super cute hearing him say "Bob" to everything right now. hahaha)

auburnchick
07-18-2007, 04:32 PM
:hug::hug:

iza
07-18-2007, 04:46 PM
:hug: Meghan, the fact that your son can already sign a few words is GREAT NEWS!!! And it's awesome that he will be able to continue using it in daycare. I'm sure your little boy is very happy to finally have a way to communicate with you!:muah:

Mariblue
07-18-2007, 04:48 PM
:hug:Tests like that can be emotionally draining, but hang in there. Have you looked into Cobra insurance? My DH got laid off a few years back, and it really helped us out. Glad to hear the signing DVD's are helping! :hug:

tootie44
07-18-2007, 05:03 PM
I was going to mention COBRA as well. And if you are in IL (not sure if you are but you mentioned Chicago) if you are on COBRA your child will be automatically eligible for All-Kids (the state insurance plan for kids). All-Kids will more than likely cover hearing aids.

Good luck with your upcoming testing. My son had a sedated ABR test at Childrens a couple years ago.

itsjustmeghan
07-18-2007, 08:55 PM
Thank you all so much for the support. we got the prices on the cobra, and to extend our coverage it costs $1050 each month! :ick: but that would be cheaper then paying for this stuff out of pocket if it comes to that. i'll definitely look into the all kids program if it comes to that. thank you for the resource.

was the sedation hard on your son? owen's never been under before, so i'm terrified he'll have a reaction or something. i guess he'll be at one of the best children's hospitals if that happens, so they'll be prepared, but still...it's still worrisome!:pout:

Silver
07-18-2007, 09:05 PM
http://www.myspacedev.com/img/smilies/love/love0053.gif

debinoz
07-19-2007, 12:00 AM
My daughter had to go through surgery (minor) when she was 18mos. They knocked her completely out and about 90 minutes after the surgery was over, she was at a restaraunt eating french toast sticks.

itsjustmeghan
07-19-2007, 08:50 AM
My daughter had to go through surgery (minor) when she was 18mos. They knocked her completely out and about 90 minutes after the surgery was over, she was at a restaraunt eating french toast sticks.

oh thank goodness. that's wonderful to hear.

no word on the ct and abr yet. i'm going to try calling the coordinator at our clinic who is working on getting it all scheduled for us today. i hope it can be done soon!

on the job front, i have 2 interviews in the next couple days. they're just filter interviews, so i'm not expecting the world, but hopefully if they do work out eventually, their insurance plan will be as good (and cheaper!) then ours now. fingers crossed, and spirits up! that's how i'm getting through this! :thumbsup:
oh, and lots of knitting! :teehee:

chrislt8
07-19-2007, 09:29 AM
Just wanted to say :hug::hug::hug: and that I am thinking of you....Chris

mum2caden
07-19-2007, 02:47 PM
My son is 2 and a half now and though he can hear just fine, he started doing signs between 8 and 10 months. At ten months he had several and was using them all the time (milk, water, drink, eat, please and thank you).

I taught him because I used to work with special needs kids and used SL a lot and I figured if he could communicate that young we wouldn't have to deal with all the crying and whining that some kids do when they can't say what they want.

It was the best thing I ever did- and I even went into his daycare class this year and taught all the kids how to sign along with singing the ABC's.

Owen is Owen and he will do things his own way, as all kids do, whether he has some hearing loss or not. Maybe it's just the ex teacher in me, but that is how I like to look at it.. good luck with everything!

tootie44
07-19-2007, 10:20 PM
was the sedation hard on your son? owen's never been under before, so i'm terrified he'll have a reaction or something.

My son has a lot of medical issues so he has been sedated numerous times. He has never had a bad reaction, all his sedated procedures have gone well. The ABR was an easy one, I'm sure he will do fine...but I totally understand your worry. Good luck!

And good luck with your interviews!

Dangles
07-20-2007, 03:56 AM
Still :pray: for Owen and your family. I hope your job search will be successful. :hug:

robynbird
07-20-2007, 07:25 AM
Oh Meghan...praying for you and for your little guy! I taught my kids some sign language when they were little...not a lot but what i knew and it's amazing how fast they pick it up. Owen is going to be great, whether he has hearing loss or not. :pray:

itsjustmeghan
07-20-2007, 08:54 PM
ordered a second sign language dvd today (pay day!) so hat should be coming next week. the kids at daycare really like the one i've been sending with him, and the older ones are using it regularly and showing our DCP (day care provider). so i'm glad that is working out. i told her i'd be giving her copies to keep and she was very excited about it.

the ABR is scheduled for august 23rd. so far they siad they can't do the CT scan the same time. i'm calling on monday to see what can be done about that, and seeing if i can get on a waiting list to be moved up. we're going to have the doctor call as well to suggest it should all be done at once too. then i realized i'm going to have to check and make sure the audiologist, the CT person and the anesthisiologist all take united health care so our bills will get paid. it's so much work when you have to organize all this stuff and coordinate insurance. its like having a second job! :ick:
hats off to people who do this all the time with their kids. i know that owen could have it SO much worse, so i promise not to complain too much.

clb1968
07-22-2007, 12:25 AM
Keeping you and your little boy in my thoughts and prayers.

My DD had to be sedated last month for an MRI, she has a muscular/shoulder issue and they are ruleing out things right now, she was up and moving around pretty quickly and was at the movies with Grandma the next afternoon.

I have hearing loss as an adult, I was just tested this week and have lost 20 to 30 % of my hearing, so hearing aids are in my future also, I have to start putting money away. Thank goodness for insurance, but still with what they take out if my check and my copays, it really costs alot some months. I am type 1 diabetic and have numerous prescriptions each month.

itsjustmeghan
07-22-2007, 07:57 PM
thank you so much for the support. i'm sorry to hear about your hearing loss, but glad to know you got it diagnosed and are working on getting those hearing aids so you'll be 100% again. I'm interested to hear what insurance you have, and how much they cover for you. it's so hard for me to believe they don't cover anything....at all...

so worried about getting all this stuff done, finding a new job, and working out speech therapy or whatever with the company....my plate is so full of worries right now. blech.

so for now, i'll just love my snuggles, playing tag in my living room, and hearing that silly little laugh he does. i love that.

itsjustmeghan
07-23-2007, 10:26 PM
right now his ABR is scheduled for the 22nd of august. i called the hospital today to find out if there was anything we could do to move it up and explained my circumstances. sounds like we're going to have to do the CT at a different time, because that's why the date was so late for. so they can coordinate it all between departments. because i need to get this stuff done so we can be working on a fix before my insurance is up, i am opting to do it separately.
i feel bad because he'll be sedated twice. :pout: like i'm a bad mommy for doing that to him. i just worry there will be some sort of side effects....i know it's a small chance, but what are the chances that two perfectly hearing parents with no family history of loss will have a child with hearing loss? luck just isn't in my corner lately....that's all...
i really hope he's okay.
i'll let you know when we get everything scheduled.

thank you all for your support. i haven't told anyone buy my bosses at work because i don't want every conversation i have with people to be about my little boy's ears all day long. it's just a lot. so i'd just rather wait to tell people when i have it all sorted out. it's nice to get on here, and check in with people, though. because if i don't want to look here and just talk about knitting, i don't look. but if i want the hugs, then i do.
so, thank you all.:muah::hug:
i love this forum. everyone is so nice and supportive.
love that

Mariblue
07-23-2007, 10:49 PM
You are NOT a bad mommy. Not at all! You are working very hard to help your little guy. And don't feel bad at having him sedated twice. :hug: He will be ok. :hug: Often times, if you want to have everything coordinated between departments at the hospital, then the waiting list can be very long indeed. You are doing what you need to do on a timeline. And really, that's a good thing, because it means that you'll hopefully be getting some answers more quickly.

My nephew has some hearing loss. They discovered it when he was 4, he was talking and stuff, but way behind on pronunciation, etc. He wears a hearing aid now, and is doing great. Both his parents have never had any difficulty with hearing. There are many reasons for hearing loss.

itsjustmeghan
07-24-2007, 02:53 PM
got the ABR moved up to August 3rd!!
:woohoo::woohoo::woot::woot:

i'm trying to get ahold of the radiology department to schedule his CT scan for this friday or monday.

Mariblue
07-24-2007, 02:56 PM
That's great!

clb1968
07-24-2007, 05:12 PM
[quote=itsjustmeghan;912611]thank you so much for the support. i'm sorry to hear about your hearing loss, but glad to know you got it diagnosed and are working on getting those hearing aids so you'll be 100% again. I'm interested to hear what insurance you have, and how much they cover for you. it's so hard for me to believe they don't cover anything....at all...[quote]

I have BCBS and I looked all thru my paperwork yesterday and as far as I can tell they dont cover hearing aids either.
I have additional overage for prescriptions, dental and vision, so I am wondering if there is something about hearing aids somewhere else, I guess I will need to sit down and call. :gah: Having enough trouble getting the right amount on my mail order prescriptions.

itsjustmeghan
07-24-2007, 07:29 PM
i found some websites where you can pay for supplemental insurance just for hearing. you get a discount on your hearing aids, and then basically pay to insure them for breaking etc. i dont know. i hate how insurance companies decide what is necessary and what isn't. my son cant talk, so i'd think that would be something necessary, wouldn't you?

clb1968
07-24-2007, 10:01 PM
Yes, I think hearing aids are necessary. Insurnace drives me crazy. I went from not have insurance, I got all my diabetes supplies for a program at the county hospital and the cost was based on my husband's income when I was not working. So I got a decent job and insurance , but the copays and stuff are alot sometimes and since I am working we do not qualify for the reduced fee programs.


I am researching hearing aids, if I see anything , that might help, I will let you know.

itsjustmeghan
07-24-2007, 10:13 PM
thanks. i'm hoping our audiologist might be able to let us know about some state programs or something to help us out. anything! just because they are a chunk of money, and i'm SURE that he'll loose them at some point. it's what toddlers do!!!!

Jeremy
07-25-2007, 06:25 PM
Meghan, I found some information that might be helpful to you.
http://www.nichcy.org/pubs/factshe/fs3txt.htm

http://www.nichcy.org/enews/foundations/earlyintervention.asp

I have a hunch that the school system and or state and federal government might have to pay for hearing aides and/or a tutor prior to school age. I didn't have time to delve into these sites but there seems to be a wealth of information there.

itsjustmeghan
07-25-2007, 08:43 PM
i've been looking. it looks like they'll provide speech therapy, but they make no mention of the hearing aids at all.
my audiologist said there is a possibility of getting assistance for him since he's under 3, but we have to meet some income requirements. right now, i don't think we would. once i get laid off? probably. dh isnt the breadwinner in our house....and i doubt i'm going to be making much more then half of what i make now if i can find something.
oh, and the audiologist said with him being young, they suggest going with a higher quality hearing aid since he needs to hear well to learn how to speak....price tag on that one?
$1700-$2900 per ear..............:passedout:
i guess i know where my severance check is going....so much for that finished basement. thank goodness we have that check coming, but i REALLY hope we can get some help with that price tag....

Jeremy
07-25-2007, 10:00 PM
:grphug:

zip
07-25-2007, 10:14 PM
...
cross those fingers that we'll get the tests done ASAP and start working on getting his hearing aids so my little booger can learn to say "I love you, Mommy" (though it's super cute hearing him say "Bob" to everything right now. hahaha)

I just read this thread and wanted to tell you that this is the sweetest thing I've read in a long time. You're doing an amazing job at getting things moving and accomplished. I'll send up a little prayer for you and your family.

itsjustmeghan
07-26-2007, 09:31 PM
thank you all. i really appreciate the support. once again, kh.com is the best!
had to schedule a physical with his regular pediatrician today. originally the hospital told me he just needed to fill out the forms. today i got the phonecall saying we needed to see the dr.
so the schedule is
7/25 EKG & bloodwork (DONE!)
7/31 "pre op" physical
8/3 sedated Audio Brainstem Response
8/6 sedated CT scan of ears
8/14 ENT appointment to get results
8/15 tentative audiology appointment to talk about hearing aids (if needed)

i'm also looking into seeing if we'll be eligible for social security disability income for his hearing loss. i guess my friend at work's friend gets it (age 28) for his hearing aids. it'd definitely be nice to have that money coming in and going into a savings account to help pay for repairs or replacements. we'll see what happens. my friend also told me his friend is on his 3rd pair already in 3 years....yeah...didn't make me feel too hot..

oh well. owen learned how to "jump" this evening. basically he bends his knees and straightens them again. i love watching him discover these new things. so cute!!! could have sworn he said Daddy 2 times tonight. come on mommy!

Doodknitwit
07-26-2007, 09:46 PM
for Owen through his parents and others!!! you are a wonderful persistant Mom.:hug: Praying for you all!!!

clb1968
07-26-2007, 09:58 PM
I bet seeing him "jump" was just the cutiest thing.

My daughter had her EMG, to test her muscle weakness , her's is from an injury at birth, the doctor said that her body mostly healed it's self and that no surgery was needed. She has so PT exercises to help strengthen that side and they will monitor her as she grows, so she does not have to see the neurologist till next year.

itsjustmeghan
07-26-2007, 10:23 PM
hooray for no surgery! it's amazing what things they know these days and how they can figure it all out.
that's absolutely wonderful!
:blooby:(happy happy joy joy dance)

Mariblue
07-26-2007, 10:55 PM
I just have to say I'm so glad for you that things are going well with the scheduling-that's a rare thing indeed to have things move along so quickly!
clb1968, that's wonderful about your daughter, what a miracle!

Doodknitwit
07-27-2007, 06:40 PM
:woohoo: great news!! will tests explain the extent of loss??

REVS
07-27-2007, 07:49 PM
Oh, I just saw this thread - I'm so sorry to hear about your son's hearing loss! :pout:
And at the same time I'm so happy that it looks like he and you will get help to figure out what it is and how to best deal with it. :thumbsup:

My mom is a special ed teacher for hearing and speech disabled kids (although she works with learning disabilities now) and I know there are MANY things you can do about diction and understanding etc.
Don't feel too discouraged, there's help out there. Once you know what's really going on, you'll be able to help him through this!

Sending prayers and many many good thoughts your way... :hug:

itsjustmeghan
08-05-2007, 11:05 AM
went for the sedated ABR on friday. owen had to fast from midnight the night before...well the booger managed to find a cheerio in his carseat somewhere and munched it down before i could pry it out. of course because i'm paranoid about him not waking up or some tragedy happening, i told the first nurse who asked us when the last time he ate was (before we even got checked in). she called down to anesthesia, and a bit later we're being brought to a room. we thought we were all cool then. next nurse comes in, mentions the cheerio, and says she needs to talk to anesthesia, meanwhile she has us change owen into a gown, we weigh him and measure him. anesthesia nurse comes in, mentions the cheerio, says he needs to talk to the anesthesia team. he comes back, says we need to wait hours from ingestion, so we can't do the procedure until 3:30 (it's now 11:30 and we're in a small room with no toys with a toddler who is starving). then an anesthesiologist came in, reiterated what the anesthesia nurse said, and mentioned he had to find out if the audiologist would be available at 3:30. the head of the department came in, told us we couldn't do the procedure today, and sent us home.:noway::wall::gah:
all this over a flippin cheerio! (i understand why they couldn't do it, and it's for owen's best interest, but a cheerio?!)
after i freaked silently about rescheduling all these appointments, cried some tears, a hug from ryan, i left a message for audiology, the first nurse came in and brought owen a brand new sippy cup, apple juice and some teddy grahams. she gave me a reassuring hug and said it'll be fine soon.
ryan, owen and i piled in the car, stopped and went out to lunch, and got a call from audiology, and owen is scheduled to have his test now on tuesday. so we have the CT scan tomorrow, ABR on tuesday, and thankfully i don't have to reschedule anything else!

needless to say, i'm cleaning the car tonight and i'll be sure to vacuum every square inch and shake his carseat out really well.....:nails: :hair:

can this just be over?!

zkimom
08-05-2007, 12:02 PM
:hug::hug::hug:

Meghan,

I'm so sorry to hear what you and your little one had to go through.

I don't know what to say. Remember that the hospital being such a stickler about the cheerio is ultimately keeping your baby safe. (ok, part of it is about them covering their you know whats also but still . . .)

Sending you and yours many hugs.

Susan

Doodknitwit
08-05-2007, 12:40 PM
:hair::hair:went for the sedated ABR on friday. owen had to fast from midnight the night before...well the booger managed to find a cheerio in his carseat somewhere and munched it down before i could pry it out. of course because i'm paranoid about him not waking up or some tragedy happening, i told the first nurse who asked us when the last time he ate was (before we even got checked in). she called down to anesthesia, and a bit later we're being brought to a room. we thought we were all cool then. next nurse comes in, mentions the cheerio, and says she needs to talk to anesthesia, meanwhile she has us change owen into a gown, we weigh him and measure him. anesthesia nurse comes in, mentions the cheerio, says he needs to talk to the anesthesia team. he comes back, says we need to wait hours from ingestion, so we can't do the procedure until 3:30 (it's now 11:30 and we're in a small room with no toys with a toddler who is starving). then an anesthesiologist came in, reiterated what the anesthesia nurse said, and mentioned he had to find out if the audiologist would be available at 3:30. the head of the department came in, told us we couldn't do the procedure today, and sent us home.:noway::wall::gah:
all this over a flippin cheerio! (i understand why they couldn't do it, and it's for owen's best interest, but a cheerio?!)
after i freaked silently about rescheduling all these appointments, cried some tears, a hug from ryan, i left a message for audiology, the first nurse came in and brought owen a brand new sippy cup, apple juice and some teddy grahams. she gave me a reassuring hug and said it'll be fine soon.
ryan, owen and i piled in the car, stopped and went out to lunch, and got a call from audiology, and owen is scheduled to have his test now on tuesday. so we have the CT scan tomorrow, ABR on tuesday, and thankfully i don't have to reschedule anything else!

needless to say, i'm cleaning the car tonight and i'll be sure to vacuum every square inch and shake his carseat out really well.....:nails: :hair:

can this just be over?!

seeing all going well. :hug::hug::hug: :heart:

itsjustmeghan
08-05-2007, 03:33 PM
zkimom, thank you.
i know it's in his best interest. i guess my biggest frustration was that we told the first person. and when they pulled us back to the room, we thought we'd gotten the okay. i'd rather them tell me right then it was going to be an issue and send me home instead of us sitting for 3 hours with a VERY hungry little dude before they decided to say it wouldn't work. just seems like communication was an issue.

oh well! i told ryan that it was a dry run, so we know what to expect. we're going to bring some toys with us this time so owen has something to entertain himself while we're waiting. seems like they weren't running on schedule already.
i'm just ready for this all to be done so i can start worrying about finding a job again...i feel like i'm a crazy woman right now!!!:eyes:
whenever i get frustrated, i clean and organize, so our house got a good once over yesterday afternoon, and today i organized my stash/needles/patterns, picked out paint colors for the kitchen & family room, and finally took down the awful curtains in the family room and then patched the holes from the curtain rods. i should get frustrated/mad more often! i'm very productive! :teehee:

itsjustmeghan
08-07-2007, 08:30 PM
well, i guess the world has a way of putting things into perspective.
owen fasted fine, took a nap, and was a very good boy at the hospital. after we got in the waiting room i started worrying. i heard other young children crying and throwing up in the bed next to his before he went in. just made me anxious. in the waiting room, the family next to us was a young couple, who just had their baby born in another hospital on sunday. they found out today that the baby's large intestine knotted and was cutting off circulation to itself. they discharged early, hopped in a cap, and rushed him over to children's memorial so he could have the surgery there. the entire family was there. the new mother was crying nonstop. she looked exhausted as did her husband. appeared to be their first baby. we were very thankful owen was healthy, and we're hoping that their baby was fine (i believe the surgeon told them it was a success and the baby was fine when we were leaving to go with owen.)

after owen woke up he was very confused and crying. we went back to comfort him. after a bit he fell back asleep on my lap, and the audiologist came down with a social worker to talk to us. ryan's phone rang, but we let it go to voicemail. they told us owen has hearing loss. mild to moderate (depending on the pitch). they told us about different programs available to help us pay for the hearing aids possibly. they also took molds of owen's ears while he was out so we'd have a good set to order the hearing aids with. boo..
owen was a very good boy, and everyone thought he was the cutest. he was quite the lady's man.

after they talked to us, ryan called his friend back. (ryan's old highschool friend. they used to be in a band together). our friend Luke (ryan's other highschool bandmate) had his second baby on thursday. i guess it was an emergency birth because her plecenta ruptured or something. the baby was cut off from oxygen for a while, and had brain damage. they were trying to prevent any further damage by putting a cool cap on his head for 72 hours. unfortunately, when they took the hat off, his brain damage was too severe and his organs began shutting down. he passed away yesterday.
http://vincentvaneekeren.blogspot.com
funny how the world reminds you that it could always be worse...i'm very thankful we have a very healthy little boy. so what if he needs some help hearing? it could be a lot worse.

my nerves are exhausted. neither ryan nor i can go to the funeral tomorrow, because we have both missed too much work for owen's tests, and have to miss more next week. we're both very upset about that fact. we're going to donate money in his memory...
and i'm going to see about knitting some blankets for the children's ward at that hospital on his behalf.
so yeah... thats our news....

Mariblue
08-08-2007, 12:24 AM
:hug:Hugs to the your friends who lost their baby:hug:
and Hugs to you too :hug:Meghan, and your family:hug:
Your Owen will be just fine, just wait till he gets his hearing aids and can hear some of those things he's never heard before, a whole new world will be opened to him! That's very exciting. I remember when I was young, and needed glasses. It was amazing to me, the detail I could see once I had my new glasses on-I could see all the way across the street, and read the numbers on the house next door, and I couldn't do that before. I imagine that's what it might be like to suddenly be able to hear some sounds for the first time. It'll be really great for him!

KnittingNat
08-08-2007, 03:25 AM
:hug:I'm sorry for your friends baby :hug:Big hugs
I'm sure Owen will adjust to the hearing aids and will be just fine :hug:I know how exhausting it is to run from doctor to doctor and do all sorts of tests. I hope your insurance issues will work out and you'll be able to get Owen the hearing aids.

GiddyKnitter
08-08-2007, 06:13 AM
I am sending you a great big hug first of all.
It may be that your little boy just needs some little grommits in his ears to help drain any excess fluid from them. I used to work for the school health dept and there were lots of children with minor ear problems and most of them had the little grommits fitted then they were OK and usually they grew out of it. So please dont despair.

itsjustmeghan
08-08-2007, 07:01 AM
unfortunately, tubes won't work. his ears are perfectly clear. the test yesterday confirmed nerve damage, unfortunately. so we're going into hearing aid zone. you can't imagine how much ryan and i were hoping they'd say "he's 100%" and the CT scan would show fluid that they couldn't see.
right now i'm just trying to figure out why. i forgot to mention to his doctors that the whole time i was pregnant i was having gallstones/gall bladder attacks. i didn't know it at the time. it wasn't until owen's first birthday when the "back spasms" were FINALLY diagnosed, and i had my gallbladder removed. any time i had attacks, there would be an extremely high amount of liver enzymes dumping into the bloodstream. (my dr's were surprised i wasn't orange when i came in) so i wonder if that might have caused this....

if so, i'm having some words with my OB group. i never complained of pain except for these times.

iza
08-08-2007, 08:31 AM
:hug:Meghan, the good thing is that now you know for sure what's wrong with your little boy's ears, and you can go forward in getting Owen the help he needs.

I have no idea if your gallstones could have caused this. Ask your doctor, but please don't blame yourself! It's very possible you will never know why it happened to Owen. We all have our little "defects" here and there, some are more serious than others. There's a little part of Owen's body that doesn't work properly, but the hearing aids will try to fix that for him.

Life is very complicated for you these days isn't it? I'm sorry for your friends who lost their baby. :pout:

zkimom
08-08-2007, 10:14 AM
i forgot to mention to his doctors that the whole time i was pregnant i was having gallstones/gall bladder attacks. i didn't know it at the time. it wasn't until owen's first birthday when the "back spasms" were FINALLY diagnosed, and i had my gallbladder removed. any time i had attacks, there would be an extremely high amount of liver enzymes dumping into the bloodstream. (my dr's were surprised i wasn't orange when i came in) so i wonder if that might have caused this....

if so, i'm having some words with my OB group. i never complained of pain except for these times.

Meghan,

I spent some time surfing this morning and it seems that gallstones in pregnancy is fairly common. Has to do with estrogen levels due to pregnancy and probably some dietary issues.

It is also not uncommon that the gallstones go undiagnosed until after the birth. I'm surprised that your docs didn't pick it up -- however, remember that back pain is a pregnancy side effect on it's own - that doesn't excuse them at all, it's just the way it is.

Unfortunately, we need to be much more demanding as patients these days as we used to be. It used to be that our docs would give us the information we needed, now we need to pull it out of them and not settle for just what they are willing to give us. Unless they are exceptional, most docs will only give you what they can in the 15 minutes they have scheduled for you before they have to see the next patient. OBs are notorious for that.

I didn't find anything in my little search that indicated any complications to the fetus due to the gallbladder attacks of the mother. Only about the monitoring of the condition if it was diagnosed in pregnancy and that was only concerning the possibility of surgery and avoiding it if possible until after the birth.

Ask your doctors anyway, and call them to task for not having diagnosed you sooner.

I know that you are looking for all the reasons that could have caused Owen's hearing loss. You may never find out what happened. Even if you do, you will still have to deal with helping him have as normal a life as he can.

You sound like you are handling it all pretty well, under the circumstances.

I'm terribly sorry to hear about your friend's baby.

Keep us posted about how Owen is doing.

Best,
Susan

itsjustmeghan
08-08-2007, 12:45 PM
thank you for the research, zkimom. i thought for sure that since i was one of those patients who had NO complaints at all aside from these weird sparatic pains in my upper right back that someone would take it more seriously. i know that there are complainers out there, but not all of us are like that. i have an extremely high tolerance for pain, and don't whine much at all. but you'd think because i mentioned it, they'd listen...oh well. i'm going on the hunt for a midwife for the next baby.
anyway.
i found out that the state has a program for early intervention that will help pay for speech therapy and hearing aids. you make monthly payments based on your income, so they'd order it and file based on my current income, and then adjust it accordingly once i'm terminated. so we may be in luck! such a sigh of relief!

for Vincent, i've decided to recruit people to help knit or crochet baby blankets. http://knittinghelp.com/knitting/forum/showthread.php?t=63561
i'll provide yarn. i'd love to send our friends a picture of a pile of blankets to be donated on his behalf. the group i taught how to knit/crochet at work are going to stitch some up for me, so any volunteers will be appreciated!

otherwise, i'll post followups on owen's evaluations by the state, how the hearing aids are going, and how he's doing.
i'm so excited to see his face when he can hear birds outside for the first time. that kind of stuff. so neat!

mrs desert rain
08-08-2007, 03:45 PM
it sounds like you're going through so much. :cry: hope you're fairing okay.

scout52
08-14-2007, 02:49 AM
I'm so sorry for what you and your family are going through.

I'm in agreement with everyone else. please teach your son sign language. When I was in High School i participated in my school READS program, which taught the hearing students sign language and gave them the opportunity to be the interpreters for the deaf and hearing impaired students at the school. the deaf and hearing impaired students fully particpated in all the classes and were not behind at all. THe program was in place in order for interpreters to be available in case the paid interepreters were not there. but it really showed the being deaf or hearing impaired does not have to slow you down at all. One of the kids got into brown university.

I'm 30 now. I just spoke with my deaf friend. She graduated college, is married and just had her first child. She even has a black belt.

itsjustmeghan
08-14-2007, 08:44 AM
thank you all so much.
today we go to the ENT to get her take on the results and see if anything else showed up in the cat scan. they'll give us a more detailed look at his hearing loss.
this morning we have someone frm the state coming by to get our information to get owen rolling with their program. it will cover speech therapy and possibly his hearing aids as well. tomorrow is the appointment with the audiologist.
owen is doing more and more signlanguage. i can't tell enough people how wonderful the my baby can talk series is. he really locks in when he's watching it, and you see him signing with them. it's great. he's using it more and more. so wonderful that he can tell us what's going on.
i'll keep you all posted

Mariblue
08-14-2007, 12:17 PM
i can't tell enough people how wonderful the my baby can talk series is. he really locks in when he's watching it, and you see him signing with them. it's great. he's using it more and more. so wonderful that he can tell us what's going on.
i'll keep you all posted
That's so great, and what a smart boy he is!

robynbird
08-14-2007, 12:32 PM
Thanks for the updates, Meghan! Owen is certainly a bright little man!!

itsjustmeghan
08-14-2007, 08:17 PM
thanks! :teehee: i think he's a smarty too!
met with the state today. sounds like we'll go with them for his hearing aids and therapy. they'll give him speech therapy, and at my request, teach him sign language. i just want him to have a way to communicate with people incase of an emergency and he doesn't have his hearing aids in. it's a bit more a month then i'd like to pay (they base it off your income), but if they provide hearing aids and as much therapy as he needs in the comfort of our home, then i'm all for it.

met with the ENT. something she said bothered me. she wants us to follow up every 3 months to monitor him to make sure his hearing doesn't get worse. she just wants to make sure he doesn't have a degenerative case....lets hope that's not the case.

Mariblue
08-14-2007, 08:23 PM
met with the ENT. something she said bothered me. she wants us to follow up every 3 months to monitor him to make sure his hearing doesn't get worse. she just wants to make sure he doesn't have a degenerative case....lets hope that's not the case.

It's a precaution. They keep tabs on my nephew too, who has hearing loss in one ear. I know it doesn't make you feel any better, but it'll be a good thing to keep an eye on it for awhile anyway. :hug: