How do I make it better for her?

I thought I would have years ahead of me to plan the right words, think it through and come up with a plan but my baby girl had her first breakdown Sunday night.  Sure I have seen the signs over the past few months and I have dealt with them little by little.  She would take her hearing aids out and say they "hurt" her, tell me she could hear ok without them in, ask me how long she will have to wear them for and not want to go to school.  Sunday night she let it all out.  Saying how much she hated her hearing aids, how difficult it is to hear from far away and how she doesn't like being different. 

During her IEP I had her evaluated for Anxiety due to her stomach issues and wanting to take her aids out.  I can't tell if the stomach issues are a concern or stress.  I've had new earmold impressions to make sure they are not the issue.  She goes in regularly for her audiological appointments.  I talk to her all the time about her aids and how important they are.  She uses her Phonak FM System and does really well with it during class but her hearing loss will ALWAYS be there.  It will always be a factor in her life.  I simply don't know how to make it better for her.

What. Do. I. Do?

In only 2 short days...

My little baby really isn't a baby anymore. She is now officially registered for kindergarten and today she lost her 2nd tooth.  It is amazing how fast kids grow up.  The things she tells me on a daily basis blows my mind. 

Not sure how but she lost her tooth so she wrote a letter to the tooth fairy tonight:

You'll notice that she has excellent hand writing for a 5yo and great finance skills if you ever saw her bank statement.  She will take the tooth fairy for $5 tonight -- anything less is unacceptable. 

She is so excited to go to Kindergarten and I am nervous for her.  Do all parents worry like this?  We had her IEP meeting a few weeks ago and I think that may have me a little stressed.  She has done extremely well in daycare/preschool but has also been with these kids all her life.  What happens when she meets all new kids and they pick on her because of her hearing aids?  I'm worried my happy little girl will go through some tough times.

Do you talk to your kids?

My daughter is 5 and I try to have daily conversations with her about her day.  REAL conversations to find out how she is really doing.  Even at 5 life can be tough.  I want her to know that she can depend on me and I will support her... she has already encountered peer pressure, anxiety and noticed she is different because of her hearing aids. 

The other day she told me "I can't do that because I'm a girl" and if you know me you certainly know I flipped.  Before I let her go to school that morning we had a long talk that girls can do anything they want.  She also let me know that she doesn't like playing with many of the girls and I told her that just because she is a girl doesn't mean that she has to play with them, she can play with the boys or do her own thing. 

Caitlyn also tells me all the fun things she learns - her favorite subjects are Math and Spanish.  It is a good thing I remember rudimentary Spanish words and she used to like Dora & Diego when she was younger!

Even though Conor is too young for the real conversations he is included in them.  Hopefully hearing us talk will help him increase vocabulary and learn some family values.

Take 10 minutes every day and have a real conversation with your kids.  Actually listen to them.  It is never too early to start this... the earlier the lines of communication are open the better.

Conor's IFSP - Hearing Loss

Conor's 6 month eval came around and I am still having a hard time talking about it.  Not quite ready to share the outcome but since that day he has shown remarkable improvement so that has given me real hope.  More details to come.

My sweet little man has been steadily wearing his hearing aids -- the Phonak Nios Micro's are holding up pretty well.  I see a little bit of rust in one of them so it will have to go in for repair but overall they are standing up to all the abuse he puts them through.  He has had them for a full year now; no clue how he will make it through 2 more years with them but Caitlyn somehow made it with her first pair.  It is time to start introducing him to the FM system... hope his teachers are ready.

More on the good news.  Conor has switched Hearing therapists and will be working with the Clarke School again.  We had a wonderful experience there with Caitlyn and look forward seeing some familiar faces.

Hearing aids, little kids and camping?

We will be going on our 2nd annual family & friends camping trip to the Pocono Mountains.  Caitlyn is beyond excited and she has already started packing her bag and some snacks for her friends.  This year we will have 5 families joining us camping - I can't wait to see how everyone does.  Last year it was only us and 2 other families and there were many meltdowns (not only from kids but parents too!) and a crazy amount of laughs.

My OCD husband has already created an extensive list of items to bring with us... let's just say it is thorough.  He has actually started crossing some things off as they are ready.  It doesn't surprise me that my 4yo has a forced rank list of her friends.

One thing I have yet to decide is whether or not to bring the kids hearing aids with us.  It is calling for some rain and the campground is attached to a large amusement park. I'd freak if they got wet or lost.  BUT the kids won't be able to hear as well... what should I do?  This is one of those decisions that I hate making and can't wait till they are a little bit older to let me know what they want to do.  What would you do??

Show Us Your Hearing

As you may know I have 2 small children that were both born with Bilateral Sensorineural Hearing Loss in the mild/moderate range.  My whole world revolves around them and making sure they have the best life possible.  The kids wear hearing aids during all waking hours and that can be quite the challenge at times!  So when I received an email about this contest I was beyond excited and wanted to share it.

Please take a few minutes to enter...

‘Show Us Your Hearing’ Photography Competition DETAILS

WHEN IS THE CONTEST DEADLINE? Monday, July 12th

HOW DO I ENTER? To enter, follow these 5 easy steps:
1. Register here: http://www.hear-the-world.com/en/user/registration.html --You will receive an email registration confirmation from Hear the World. If you don’t receive an email, please check your Junk Mail folder.
2. Visit this URL: http://bit.ly/dblGut , click the “enter the contest” button, and enter the entry form.

• Upload a photograph of you, a friend, or family member in the ‘Conscious Pose of Hearing.’ The photo must be high res (300dpi), between 1MB - 3MB.
• Give your photograph a title and provide a description of up to 100 words describing the importance of being aware of your hearing at every age.
• Click “Send.” Your Entry will not be officially entered into the Competition unless you click the final Send button and receive a confirmation screen that states that your Entry was accepted.

WHY SHOULD I ENTER?
· To take a moment to think about your sense of hearing and the sounds you are grateful to hear every day
· To support the Hear the World initiative which is dedicated to raising awareness about the importance of hearing, while also educating the public about the consequences of hearing loss and the available solutions.
· For a chance to win a Polaroid 300 Instant Camera and for a chance to see your photograph published in the award-winning Hear the World magazine.

WHAT ARE THE JUDGES LOOKING FOR?
    Most visually appealing- 50%
    Originality- 30%
    100 word description- 10%
    Self-explanatory- 10%

HOW AND WHEN WILL THE GRAND PRIZE WINNER BE DETERMINED?
1. The public will vote on their favorite photo between July 13th – August 3rd
2. The top five entries that receive the most votes will be judged by a panel of judges between August 4th – August 10th
3. The grand prize winner will be announced on August 16th on the Hear the World website. Winners will be notified by phone and email.

Hearing Aids - Broken AGAIN

So Caitlyn's Phonak eXtra 211's are in for repair again. I'd say they average repair every other month or so. Thankfully, she has her back-up Oticon Gaia's but the downfall with those is the FM System... her FM works with her Phonak's. She hasn't been able to use her FM for over a week now and she actually misses it.

Conor has had his Phonak Nios Micro's for around 2 months now and we haven't had any major damage to them. They have had a bit of saliva on them at time but I make sure to put them in the dryer. I am afraid of his breaking because he doesn't have a spare set like she does.

When Cait was little we tried everything possible to keep her hearing aids on. One of our favorite products was EarGear: http://www.gearforears.com/ I think it may be time for Conor to get some Ear Gear... I'd try to use Caitlyn's old ones but his hearing aids are much smaller (gotta love how advanced technology can get just in a few years) than hers. Plus the 2 sets we have include pink, it is bad enough that she put a tiara on him the other day!

Having 2 kids with hearing aids is interesting to say the least. You always have to worry about them:

-losing them
-breaking them
-moisture
-general maintenance