FLIP-Flop

Abby had an ABR (auditory brain response hearing test) done last week and we got some interesting results. Her previous ABR indicated that she had a mild to severe/profound loss in her RIGHT ear and a mild to moderate loss in her LEFT ear. Well, the new test shows that her right ear has actually improved and it is mild to moderate, and her left ear had dropped dramatically and is now moderate to severe - bordering profound.

We knew that their condition (enlarged vestibular aqueduct) can cause fluctuations in hearing, but I never imagined it could do this! I talked to the audiolgist about it, suggesting that maybe there was a mistake and they accidently flipped the ears and labeled it wrong, but she said in the more indepth testing results (not shown here) there is a way to tell which ear is which, and she said everything was done correctly. Sooo, we'll get her aids adjusted and just keep testing her on a regular basis and try and keep up with the craziness.

For any of you interested in learing how to read an ABR, it's actually pretty easy. The numbers across the top represent frequencies, or the highs and lows of sound. In the 500 hz range are deep sounds like a lawn mower, a big dog, a truck and low sounds like that, and also speech sounds like 'm', 'd', and 'b'. At 1000hz you can hear a baby cry, a piano, mid range music, and speech sounds such as 'l', 'a', 'o', and 'r'. Higher pitched sounds fall into the 2000hz range, like a clock ticking, a telephone ringing and speech sounds like 'sh' and 'k'. and in the 4000hz range are birds, whispers, and speech sounds 'f', 's', and 'th'.

The numbers up and down represent sound levels from loud to soft or "decibles." 0-10db you can hear the leaves rustling. 20-30 you can hear whispering or birds singing. 40-60 is normal speaking range. 60-and up you can hear sounds such as a chainsaw, loud music, a bullhorn, and loud percussive sounds.

Looking at Abby's most recent ABR (the one at left - the one above is from 6 months ago so you can see the flip-flop), you can see at 500hz (or lower sounds) she can hear any noise that register at 40-50 decibles in loudness. Then her right ear stays between 40-60db in the higher frequencies, and her left ear drops down into the 70's and 80's.

You can see how difficult it must be for Abby and Carter to learn language when half of the speech sounds are lost in their ears. I am SO grateful for hearing aids!

happy birthday abby!

Hey...!

Give me my hat back!

Need a good laugh?

Take a look at the pics of Abby with Santa last year. I don't think we're going to have the chance to see Santa this year, but these are memorable enough to last us until next year.

Mandie Loves Christmas

Random Fact #3

I'm a Dickens Caroler

For five years now, I've been a singer for a group called The Living Christmas Card. We dress up in fabulous traditional dickens style formal wear and sing in quartets for private parties, restaurants, etc. We have a repertiore of over 50 Christmas carols, many arranged specifically for our group. Of all the things about the holiday season, this is the one thing that puts me in the Christmas spirit the most. I am a hopeless lover of Christmas carols, and I feel very honored that I get to spread christmas cheer to others through singing.

wickedly entertaining and entertainingly wicked

We bought tickets for Wicked a few weeks before our trip to guarantee that we could see it. Its one of the hottest shows on Broadway and so tickets are pricey and hard to come by...but for good reason. The show is amazing! We saw it in Dallas a few years ago and it was awesome then, but there's just something about seeing a show on BROADWAY. Elphaba was incredible, and Ga-linda was hilarious! So we weren't supposed to take pictures in the theatre, (no flash photography) but I didn't use a flash. :)

Saturday we decided to try and get last minute tickets to see Spamalot. We stood in the TKTS line for almost two hours in hopes of getting cheap tickets. (That small angular building shown below is the TKTS place that sells tickets at a discounted price.) It was soooo cold. Anyway, Spamalot was a riot! Very inappropriate at times, but wickedly entertaining.

more cousins

I'm still learning about lighting and camera settings so these turned out not quite how I wanted them to, but the kids are cute, and that's all that matters!

Christmas in New York

My first view of New York!

One of the amazing bridges that bring you into NYC.

So we bought tickets to see the statue of Liberty... but it was so cold and we would have to wait an hour to take the ferry... so we ended up returning the tickets and taking pictures around the area.





Sorry Lady Liberty. Maybe next time.

More pictures later...

crappy luck

Of COURSE there would be bad weather at Newark and my noon flight would get cancelled and rescheduled for 7pm. Cross your fingers that I even get to travel tonight!

*sigh*

I know I'll only be gone for a weekend, but I'm really going to miss my babies.

in love

I know this sounds pathetic, but I want an SLR camera so bad I went a bought a lens before I bought a camera. It's a 50mm f/1.8 lens and I love it! My father-in-law has a Canon Rebel and so until we can afford the camera I want, I will just occasionally borrow his camera and use my lens with it. Aren't inlaws wonderful?

Gartin sneak peak

I've always wanted to say that! Anyway, I took pics of my sister-in-law's family on Saturday, and here are some of the highlights.

Mandie Loves Christmas

Random Fact #2

We're going to New York!

For Christmas this year, Brian and I decided for forego the traditional gift exchange for one another and go on a trip instead. New York is my dream trip (I've never been) and Christmas time is the best time to go! We leave on Thursday and I'm so excited!

The Final Answer

We have finally gotten back the last genetic test results for both of the kids and the diagnosis is that they both have Pendred Syndrome. Pendred's is a mutation of a gene called the SLC26A4 gene. It is a recessive trait, so BOTH parents must be carriers in order for them to pass it along to their children. Because we are both carriers, any child that we have has a 25% chance of getting the sydrome, 50% chance of being carriers, and a 25% chance of neither carrying it or having it. I'm almost positive that my Dad's father had Pendred Syndrome, and probably two of his sisters as well. So I know where it came from on my side. Brian has a sister with hearing loss also, but it is not Pendreds. I don't know if there is any other history of hearing loss on his side. This is all so fascinating to me!

They estimate that 2 to 3 children out of 1000 have hearing loss in general (lets say 20-30 out of 10,000 for our purposes here) and about half of all hearing loss is genetic. So out of 10,000 kids born, about 10 of them will have genetic hearing loss. Pendred syndrome accounts for 5-10% of all genetic hearing loss, so that means that 1 out of every 10,000 people born will have Pendred. We have two of those kids. Granted, it is genetic so it is more likely to be concentrated in some family lines. When we decide to have more kids it will be interesting to see what happens.

People with Pendred syndrome are expected to lose hearing over time, and about half of all people with it may experience and enlarged thyroid (goiter) and some may even experience balance issues. Much of the other symptoms do not occur until young adulthood, and do not affect their quality of life or life expectancy. It is almost a guarantee that at some point in their life they could lose all or most of their hearing, so we are accepting of the fact that one day they may need cochlear implants.

So life goes on, and nothing has really changed for us with this news. They are happy, fully functioning kids with their hearing aids, and we will continue to be aggressive with hearing testing so we can stay on top of their hearing loss.

I don't know about other people with hearing loss or with kids with hearing loss, but I really enjoy talking to other people about it. I appreciate it when I meet someone new and they are curious about my kids' hearing aids and ask questions. So if you ever have any questions, don't be afraid to ask. And if you ever see another mom with kids with hearing loss, talk to her. She would probably appreciate it too.

If you want to read more, click on the link below.

Pendred Syndrome

Mandie Loves Christmas

Random Fact #1

I LOVE wrapping gifts.

Wrapping presents is one of my most favorite things to do throughout the year, but especially at Christmas. To me, the most exciting thing about giving and receiving a present is how it's presented (hence the name "present"), so I do it with care. Each year I have a theme, and all of my wrapping paper and bows coordinate with each other. I haven't quite decided what I'm going to do this year, but bold red and white sounds fun, huh?

If any of you don't like to wrap your gifts, I'll do it for you! Seriously!

Did anyone else see the sunset last night?

Thanksgiving

We had a great Thanksgiving week. I say week, cause Brian took the whole week off and so we doubled the fun, although our idea of fun was really just relaxing and doing a little bit of nuthin'.

Wednesday night my mom treated the whole family to Disney on Ice. Like 30 of us. We took both of the kids and it was their first time, so we loaded ourselves up with fun snacks before we left. It took Carter a few minutes to realize he couldn't escape, but Abby settled right down and watched the show. I think her facial expressions were the highlight of the whole night. Any time the lights changed or an interesting character came onstage, her jaw would drop and her eyes lit up. It was classic. I really wish I had gotten a picture.

Then Thursday we went to my mom's for dinner. The whole family was there, with the exception of a neice and her family, so it was pretty crowded. The food was great, the cousins loved playing together, the guys enjoyed watching the game, and I was happy to spend time with my sisters and mom.

I stole this pic from Missy.

Friday we put up Christmas decorations. Brian's parents went to Jerusalem this year and we had them get a nativity set for us. My mother-in-law picked out the perfect one for us. I love its clean, simple polished look, and the wood is gorgeous. So of course it has a place of honor on our mantle.

32

Has come too fast.

freedom

This is Abby and Carter's favorite thing to do lately. Carter's a little too small to maneuver well so he doesn't go far, but Abby loves this new form of independence. She takes off and can get down the street in 20 seconds flat. When she takes off like that it freaks me out a little. We don't have a very busy street, but she can't hear well enough to hear me yelling at her to stop, (but I bet if she could hear me she still wouldn't stop,) so I end up picking up Carter and running after her. It drives me crazy.

I've got to teach this girl some boundaries.

bad dream

Have you ever woken up from a bad dream, and realized that it wasn't just a dream?

18 months

Height: 31 3/4 in. - 50%

Weight: 25 lbs. 15 oz. - 50%

Head: 48 cm - 50%

two firsts

Abby did two new things today. She said her first three word sentence! I know this may be a shock to others of you with almost three year olds that have been speaking full sentences, but we've been working so hard on this for a long time. She can get two words down, but when we add a third, she drops one of the other words. So today during speech therapy she said "I want baby" clear as day, and we didn't even need to prompt her. I was so proud!

And then later in therapy she was playing with the magna doodle and drew a full, complete circle, two eyes and a nose (in proportionate places!), and named each body part, so it was definitely intentional. I gushed to Brian about it, telling him how exciting it was that she could do a mid-three-year-old skill, and he said, "Oh, I taught her how to do that last week." Hey, thanks for telling me Dad! Those small things are what a mom LIVES for!

stocking hunt

I really want to get new christmas stockings, and so I've been searching the web trying to find the perfect ones. I had a hard time finding sites that had a good selection of stocking sets, so if you know of a place, let me know. Here are a few that I like, but the top two are my favorites. Which ones do you like the best?

1. personalcreations.com $16.98 each.

I've always wanted knitted stockings, and these are a great price. I love the pom poms!2 .potterybarnkids.com $29.00 each

A little too long, and a little too expensive.

3. personalcreations.com $12.98 each. I love this style!4. personalcreations.com $16.98 each.

These might be a little too traditional for me, but I like that there are six styles to choose from. Who knows, maybe one day we'll be a family of six!

5. personalcreations.com $17.98 each.

I really love the "Rudolph" theme!

6. personalcreations.com $14.98 each.

Hmmm.... too crafty-cutesy?
7. potterybarnkids.com $24.00 each.

I think these are AWESOME, I just don't know if all those colors would clash with the rest of my holiday decor.

8. potterybarnkids.com $19.00 each.

There are seven different styles of these, snowman, santa, reindeer, ballerina,airplane, nutcracker, mouse king.