View Full Version : Baby PatchChild's Surprise
06-14-2007, 03:43 PM
What a long week. Owen got referred at the hospital from his newborn hearing screening and so we had to drive into Boston last Thursday for the long and involved hearing test. Not a fun drive right through rush hour traffic. I give this boy credit though, he did great.
I laughed when I got the letter describing the testing. Your baby has to be asleep for it, so they recommend keeping your baby awake until right before the testing is scheduled to start, and then nursing them to sleep. Anyone want to tell me how to get a 9 day old to agree to this? Really though, I was surprised, he cooperated and slept great.
Sadly though, Owen has moderate hearing loss in both ears, of the permenant type. He can hear, but will miss most things quieter than conversation between two people who are close together. We're going to be seeing a specialist to get him fitted for hearing aids as soon as possible, and to start working with early intervention to get my DH and I up and running with sign language to supplement spoken English from as early an age as possible. The state has aprogram for parents where they send a sign language tutor to your house to teach both parents and child. Fortunately, Massachusetts has some fantastic resources available for free for us to take advantage of. We're very lucky with that.
Does it make any sense that I'm more stressed about telling the family than I am about dealing with this? Maybe it's just the SpEd teacher in me. I know he'll be fine, but the family is going to be stressed, especially since this is the first grandbaby on either side. Owen's hearing was a complete surprise. No hearing issues at all in my family.
I got to visit the audiologist today and once again Owen behaved angelicly. We got to talk over his hearing results in deyail, and hear a computer simulation of what a regular conversation would sound like, given Owen's hearing loss. At the moment, he'll hear most of a conversation 6-12 inches away, but nothing beyond that. It was scary to see how little he's hearing now.
We did the fitting for hearing aids as well, and they're good enough these days to bring his hearing up to a normal range. The aids are even smart enough to amplify quiet sounds lots and to not amplify really loud sounds at all. The aids should last arleast 5 years but the ear molds get reolaced as he grows, so lots and lots of replacements for this first year. We decided to skip all the pretty colored aids for now. The big irritation now is that insurance doesn't cover hearing aids at all, so it's time to do some serious fund raising and saving. $2000 for the pair, plus batteries every 2 weeks or so. At least the ear molds are included for the first year, no matter how many he needs.
And now the fun, telling the families now that we have details.
06-14-2007, 03:52 PM
Lots of good wishes and pixie dust heading your way.
06-14-2007, 03:57 PM
Lots of PixieDust prayers and hugs to all of you.
It will be okay when you tell the family.. it's the apprehension of not knowing how they will handling things that are the worst fears a parent has.
I'm glad they are getting you and your DH and Owen ready for this..and that you have resources available to you. I'm sorry to hear that insurance isn't helping with the expense though.. :(
Keep us posted..
As for sleeping through a test.. He is definitely and angel because mine would have said "no way, I gotta see what's going on!"..
Keep us posted..and know we are all just a phone call away!!!! :)
06-14-2007, 04:10 PM
Prayers and pixie dust!
06-14-2007, 04:25 PM
Your positive attitude should be commended and will take you very far in dealing with everything that this type of issue will bring. Sounds like you and your husband are right on top of things and Owen will be all set. He is very lucky to have parents like you. Sometimes our families can surprise us so you never know. I'm sure that they will all realize that he is the same precious boy that I'm sure they have fallen in love with. Best wishes and prayers to all of your family:flower3:
06-14-2007, 04:44 PM
Good luck and pixie dust for telling the family. I know that can be hard but remind them that you have it under control and maybe they can take it in stride and learn some signs along with you. I love sign language and plan on using it with my children no matter how there hearing is, it is a beatuiful language. I do think it is horrible that the insurance won't cover the hearing aids though.
06-14-2007, 04:50 PM
Prayers that all will go easy for your whole family.:wizard:
06-14-2007, 05:28 PM
Lots of hugs and prayers...for Owen AND you!! I hope the talk w/the family goes ok! I'm glad your state has a good program, and it's great that they are going to do EI to get you guys going right away! You have a great attitude, and you're right...he will be fine! LMK if you need to talk! :grouphug: :grouphug: :grouphug:
PS--LOVE the pic of his little hand holding your "I love you"!
I can understand your emotions right now, I empathize and sympathized. You are arranging for excellent resources to be available to your sweet baby boy, you and your husband are going to be excellent advocates for your child. How can he not do well? :)
You will be amazed how quickly you will pick up sign language, I recommend learning the alphabet first, it makes learning the other signs very easy. So many people are teaching it to hearing babies as well, and many of the school systems teach it too.
I know this seems like a huge amount of stress on you, but I can tell you and your family are going to do great with this challenge!
P.S. My DD is unilaterally deaf, was born with no hearing in her right ear. The hearing components develop very early during gestation, it's unusual that one side developed and one did not. We feel blessed that she has normal range hearing in the left ear. Coclear implants nor hearing aids are an option for her.
New England Eeyore
06-14-2007, 08:51 PM
Lots of prayers and pixie dust as you go through this process. :grouphug: But it sounds like you have a wonderful attitude and lots of support to hit the ground running.
We're here for you - whatever you need!
06-14-2007, 11:49 PM
Hey there lady!! Wow, busy day for you huh?
I'm glad they can fit Owen with hearing aides. That will really help keep his speech skills moving along.
Don't fret about telling your families. Can the tutor come and teach all of you? And how about school, when will they line someone up for him? I know look at me talking about school and he hasn't even taken his first steps yet. :rolleyes: :rotfl2:
I really wish I could learn sign language. I have always loved it and Rebecca is right it is so pretty to see. Maybe I'll take some classes some day!
06-15-2007, 02:04 AM
Sending pixiedust: your way. My bet is your family is going to love your precious Owen no matter what.:goodvibes
I went to school with a gal that is very fluent in sign language. IIRC, she gave either a report or a speech in class one day using sign language. It was really cool! She's now a teacher and I think she teaches her students to sign a little here and there. We also have another teacher at our school that has a DD that is deaf and she does teach her students sign language. DS was in her class and she was his favorite teacher (he did have a bit of a crush on her DD, though :rolleyes: ).
I also have a friend that has a DS (almost 3 I think) that needed an implant. He wore hearing aids until he had the surgery last fall. He still has lots of speech therapy, but his speech is really improving by leaps and bounds.
Again, don't worry about your family- everything will be fine!:)
06-15-2007, 05:58 AM
Younger hearing children learning sign language is much more common these days. I know that many parents start to teach signing at an early age to help communication. My sister who teaches 1st grade is doing that with both her class and my niece who is 2. At the preschool/daycare that I work at we also have begun to incorporate signing this year. The kids really love it and we actually got to put it into action on a field trip to our local childrens museum.
party of 3
06-15-2007, 06:31 AM
sending lots of prayers and pixie dust for your talk with the family.:grouphug: :wizard: i'm sure it will go over fine. owen is so very lucky to have such love. i really wish the insurance co would help out. i always wonder what they will and will not cover. it amazes me. so glad that you have good resources too. the boston area is the best medical area in the country they say. so that's great that you are so close to the best.
lots of hugs to owen.
and i REALLY love the pic of him holding your hand with the i love you sign.
06-15-2007, 08:44 AM
Prayers and pixie dust. It is nto weird at all that telling your family is stressing you more than the situation. I am sure it is be a bit for them to deal with, but once they put it in prespective, they have a beautiful healthy grandson who will develop fine but happens to have some hearing loss all is good and you thank god it is not anything more complicated. It is a bummer about the hearignn aid cost, maybe your instructor knows of other resources that can help defray costs?
06-15-2007, 10:26 AM
Blessings and much pixie dust to you, DH, and Owen, PatchChild!!
Though you are dealing with a challenge, Owen and all of you are very fortunate to have such great health care in the Boston area, such early intervention, and most of all your positive attitude and support. Owen and your extended family will key into that and should accept the situation much better.
Take care of yourself, too!! :hug:
06-15-2007, 11:37 AM
I know everything will be fine! Especially with that GREAT attitude of yours! Your family will be sad of course, but they will just want to help Owen as much as possible, he is their first and they just love him! So please don't worry about a thing! Everything will work out OK! :hug:
Just focus on that baby and learning everything you can and you and DH will be just fine.
06-15-2007, 11:59 AM
I am sure you will do great! Owen is so lucky to have parents like you.
DH and I took sign language as an elective while in college - when he was just dbf not dh;) . The church we went to when home with my parents had a deaf ministry so each service had an interpreter. I picked up a lot just watching the interpreter each sunday.
I have a friend at church now who is an interpreter by profession and she taught both of her children to sign before they could talk. Once you get into it, you will be surprised how logical the signs are.
My main problem in class was trying to translate what I wanted to say into sign. I could watch someone sign and understand quite easily. Maybe some weird wiring in my brain or something.
:wizard: Wishing you much happiness with your new little one!!!
:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:
And many hugs to put in your pocket for the times that you need them.
(When you run low, I can always send more:flower3: )
06-15-2007, 09:16 PM
Sending much pixie dust to you!! My MIL and FIL are both deaf and DH is deaf in one ear. They converse with each other in sign language, so it is something I have picked up some of since we've been together. I understand completely how you feel about being more nervous about telling your families. Owen is so lucky, though, to have you and your positive attitude about this! It will be such a blessing to him! Plus, he'll always have the benefit of being a bilingual child! ;)
I wish you much strength and happiness! It will all work out wonderfully. . .he's too adorable for it not to!! :)
06-16-2007, 09:22 AM
You have such a good attitude, I know y'all will prevail through this. When you think about it, your "worst" case, isn't bad. Owen needs hearing aids. That can be worked with. My DD was born with a heart valve problem, our worst case was overnight balloon surgery and a stint - not bad, really.
Keep your chin up. Your family will be great - they have a beautiful grandchild they can spoil and treasure. The fact that he will be bilingual is just a plus!
06-16-2007, 10:19 AM
:wizard: lots of PD to you and your family! They will be supportive. The anticipation is always the worst part of news...good or bad.
Little Owen is blessed to have been born into such a great family, as you are so blessed to be given such a sweet boy.
06-17-2007, 12:33 PM
Sending :grouphug: your way! It will all work out--you have such a great attitude and are doing all you can for your son!
06-18-2007, 08:51 AM
I agree with everything everyone else has said. Your attitude will make a HUGE difference in how this affects the rest of your lives. And you have great attitude!!
Much Pixie Dust to you, DH & Owen!!
06-18-2007, 12:26 PM
Pixie dust comin' your way!!:tinker:
Have you checked to see if thee is an agency through your state that might help cover his hearing aids? My daughter has Spina Bifida and we have a great agency in Illinois that helps pay for co-pays and medical equipment.
It would be worth it!! Don't you :rolleyes: love:rolleyes: (very sarcastically) insurance companies? We have had some that pay for anti biotics every month for urinary tract infections, but not for catheters to prevent them!!!
Good luck with everything!!
06-18-2007, 10:11 PM
Just wanted to say hi ... :wave2: and then also send some hugs and pixie dust your way ... :grouphug: :wizard: :pixiedust:
I'm not sure if either of these questions have been asked and/or suggestions made: Do you or your DH have a flexible spending account through either of your jobs. It is a reimbursable expense. One of my coworkers contributed the max amount you can towards her to help cover her hearing aids. It may not help with this first set, but it will definitely help down the road. Her doctor also mentioned that there is state help available you may want to look in to that.
06-20-2007, 09:29 AM
It's nice that you found out early and now have great resources to be able to help him. Everything will work out fine with the positive attitude you have.
06-20-2007, 10:43 AM
Sending you good thoughts. Like everyone else has said, it will work out and it could be worse. Just keep up that good spirit and I'm sure your family will all be there for you. :wizard:
06-20-2007, 12:47 PM
Poor little tot! But lucky to have great parents to help through :wizard: :grouphug:
My DS(7) had this test when he was tiny - he was lucky, his hearing was fine, but I know all the worries around this and can't imagine I'd have coped as well as you if the outcome had been different.
Would your local Rotary or similar organisation sponsor his hearing aids?
06-20-2007, 02:06 PM
Pixie dust to you and yours. Congratulations on your new son! Sounds like you have a good attitude and a level head. Just knowing what resources are available is 1/2 the battle. You will do just fine.:thumbsup2
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