BUILDING LISTENING AND LANGUAGE SKILLS SEMINAR

Jennifer, Clarissa and Me

Dave Sindrey

Today I was able to attend a free seminar put on by Advanced Bionics through the University of Iowa Hospitals Otolarangology Dept. It was Awesome!! Dave Sindrey was the speaker! He is the guy that does the Listening Room on AB's website! Wow! He was so knowledgable and kind and super helpful.


We got to hear lots about Building Listening & Language Skills for pre-school and school-age children with hearing losses. And we learned many new activities that can help our children learn new words, sounds, and so much more! Most of these activities and projects can be found and printed for free from his site the Listening Room or a link from there. Wish I understood how to link it in this post for you, but I don't, so you'll just have to check out my link list.


Here are just a couple of photos from our day. I went with my friend Clarissa, Evan's mom and we met up with our new friend Jennifer, Landri's mom. At our location, we were the only parents present. The rest of the group was filled with professionals. We were bummed by this! We were hoping to really connect with some moms and build supportive relationships from the event. Never the less, it was a great seminar.


Clarissa and I have created a parent-networking group for our surrounding area, which will span out as far as need be. :) We've called it "COMMON GROUND". It is a group of parents and families that are going through struggles with their children for one reason or another that are looking for friends to talk to in their area. And not only that, but someone who understands what trials they are experiencing. Maybe someday we'll have a website for this new adventure of ours!


We decided to form this group due to the fact that so many of our specialists and therapists were the same, yet due to privacy laws were unable to tell us of each other and our many similarities. God had other plans that included bypassing them, and getting straight to us!!!


We want to help connect families in a similar way, through those people that couldn't put us together before. We are empowering them with our personal contact info so that they can pass it on to those who need someone to talk to! We are excited to see its outcome!

Evie's NICU Reunion!

On Sat., Sept. 26th, my husband and I and our 3 kids, drove over to Ankeny, IA to attend an Annual NICU Reunion! (Neonatal Intensive Care Unit) We had debated whether or not we'd make the trip, but were asked by three different people on Facebook if we were going. That's when I decided the answer would be Yes!

These are a few photos that I took of Evie and her NICU friends nearly 2 years after their stays in the hospital! Every child pictured was in the hospital at the same time as Evie was and we still missed two sets of triplets in these! Wish I'd thought to take their photos too!

Many of the photos include a little girl that looks like she could be Evie's sister, her name is Ava. She and Evie were put in the same room at the NICU because it was overflowing at that time with babies galore! They were allowed to be together because they both had CMV and were in "isolation" from the other babies.

Each baby, or "set" of babies (twins, multiples) had their own rooms. The isolation came from the fact that our girls were not allowed outside of their rooms. Even Santa Claus stayed at the doorway and we brought her to the opening for the photo op where he didn't hold her in order to keep from spreading viral germs!

As parents, visitors and nurses/doctors went into our girls' room they were required to gown up and don rubber gloves! These stayed in the room when leaving and were deposited in a bio-hazard trash bin. This was to protect all the other babies in the NICU from our precious, tiny, cytomegalovirus infected babies! Very Scary for us parents!!

To honor the occasion, I'm also sharing some of our photographed moments in the NICU before showing you how far the girls have come!

A tired Mommy and her itty bitty Evie, weighing only 4 lb 7 oz!

Look how tiny she was! We used the buckle to keep her bundled lower body straped in. Now Evie would hang over the edges of that seat!!

Peaceful Sleeper. Her head was so tiny.

Chris and Sara with their daughter Ava. You can barely see her she's soo tiny!

Jesse, proud daddy, snuggled up with Evie. We kept her bundled like this to encourage her hypertonicity to soften and allow her to work on her head and trunk control better. She couldn't curl into a fetal position on her own, we had to learn a special swaddle to accomplish it.

Santa Claus came early to the NICU and the nurses let us take off our ugly yellow gowns for the photo, but not the gloves... didn't matter one way or the other. I was still nursing her and was skin to skin (or better yet, skin to contagious slobber) with her, many hours of the day!!

She was just so tiny and sweet. Its amazing how far she's come in under two years!! We mustn't forget where we've been, for those experiences will guide us down the roads that lie ahead.

This is Erin, our fabulous NICU Physical Therapist!

Ava and Evie nearly 2 years later!! Ava wears a Hearing Aid in her right ear, and has a Cochlear Implant on her left side. Evie has bilateral Cochlear Implants.

Checkin' Each Other Out!


Four little sweeties that have grown so much!!! All born premature, all doing very well and thriving.

Say Cheese! We were completely in the way of a walking area, four girls on the floor and two moms sprawled out taking photos!

Gotta love Ava's inquisitive nature!! This has helped her so much in her development!

Having a heart to heart?

Ava discovered my crunchy hair, and her dad discovered my camera! I looked back to play with her at just the right moment apparantly.

Laughing at her fun discovery, and wincing a bit in response to the hair pulling. Moments earlier she managed to grab my nose and scrape the inside of it with her thumb. As I hear, this is a common war wound in their house. So worth it to get to bond with her some more!!!

One more 'check you out' session... meanwhile... Evie works to knock her Right CI off with her shoulder! So sneaky and awnry!!!

Evie with her NICU Physical Therapist, Erin, nearly 2 years after her 42 day stay in the hospital!

My, how time changes things!!

New Gear For My Ears!

Since Evie was 3 months old we've been struggling to keep her hearing devices on her tiny, thin ears!

Lately, this struggle has become more frustrating with her awnry determination to keep my hands off of her head!

To battle this obstinance, I've been experimenting with a number of options for her little ears and head. Here's a list of things we've tried and some photos of the more recent attempts to keep her listening.

Ear Molds

Snug-Fit with and w/o the Baby Worn set-up

The clear tubes originally used before Snug Fit

All of the above with Double-sided Toupee Tape!

Just Toupee Tape (which works well, but hard on her delicate skin)

Bandana Gear, Hats

Ear Gear sleeves w/clip attached and tape

Ear Gear sleeves w/clip attached and ear molds

The best to date: Ear Gear Sleeves w/clip attached and a Headband looped through them!

Our friend Clarissa, Evan's mom, did something similar for her little guy. Here's our version of Bandana Gear. The CI's are tucked into a fold in the bandana where she cannot reach them! She was so confused when she couldn't just reach up and rip the right one off. Funny!


Evie licking a ball before she throws it. You can see the Processor slipping out of the bandana.

She's so happy and keeping her hands off of the CI's for now.

My Favorite set-up so far! She leaves them on so much better and they don't fall on the floor either! It works for her since she's a girl, don't know what to suggest for you moms of boys though.

This wonderful vibrating foot massager has been a sanity saver!! Evie is sensitive to her surroundings and anything that vibrates makes her relax. Seriously, I can do anything I want while she lays like this... Put on her entire ear gear set-up, cut her toe nails, whatever.

Here she is, hard at work! Listening and not bothering with her CI's!! Good Girl Evie!

Here is Evie and her Super Ears buddy, Evan! He has special pouches for his CI's! His mom attaches them to his shirt with safety pins and has extra long coils to reach his head! Cool!

Playing and talking to her friend. She made lots of 'ah' and 'layaya' sounds while Evan clicked his lips and experimented with whimpering noises. They were so cute jabbering at each other!

A stare off before the heart break...

Evan had enough of sitting next to that girl and decided to pull her hair! After the crying stopped, she'd start up again and again. Just like a girl to hold a grudge!

Don't be fooled, this isn't an attempt to console her, he was going for her face again! So funny to watch... we'll see if she remembers next time they hang out.

This is a great shot of Evan's set-up though! These pouches were purchased online from another CI mom. Pretty cool for those active kids who are up and movin'!

Hope this post will give you some ideas to solve the never ending battle of keeping those heavy processors on their tiny little ears! Good luck!

Evie is Rejecting her 1st CI This Week

Evie has decided that her second CI, the left one, is worth wearing now. She lets me put it on and starts talking in response to the noise she's recieving! This is just wonderful! What is not so wonderful is that I keep finding her 1st CI, the right one, on the floor, in her high chair, in her crib, but never on her ear!! She has begun fighting me when I put it on her by shaking her head vigorously.

Has anyone else dealt with this in their sequential implant kids? I know this will pass and that we just need to keep putting it back on her, but it is frustrating. The audiologist just checked both processors last week and they were great. Evie is throwing both of her right side processors off so I know it isn't because of malfunctioning external parts. Now I'm just wondering if she is getting used to the quieter left side and doesn't want the louder right one on. She's a bit awnry, I like that about her, but it drives me batty some days!

These photos are completely unrelated, but this is what I've been doing around the house lately...

Evie's Room, Newly rearranged and cleaned

Evie just before eating, happy and excited...

Evie after being submitted to Beef Mac N Cheese and then Chocolate Pudding w/Bananas. She looks disgusted and exhausted!

Getting Organized!

Since creating this site, I've been buzzing around other mom's blogs like crazy. I was insprired by the creativity that some of them were using to stay organized and get the whole family involved in their child's development. So I got to work for a couple of days and came up with these...

Here is our new weekly calendar for Evie's appointments. I took pictures of all of her therapists and specialists, and used contact paper to "laminate" them. There are still a few I haven't cut out and prepared. Then I put some adhesive magnet tape on them and stuck them on the board. Walmart has magnets with the days of the week on them so you can use any dry erase magnetic board for this project. Now we'll be able to go to the board before her appointments and talk about who we're going to see today. I also put those Cochlear magnets they sent us to use to describe her appointments.

This is hard to see but it's an activity chart that is "laminated" and has about 25 velcro squares on it. There are five spots for our current PT/OT 'homework' and four next to them for the four family members helping her. When you work on something with her, then you grab one of your photos and velcro it up. At the end of the week we'll be able to see what we've done and who helped, and what we didn't do! As she accomplishes goals, then we'll replace the activity with a new one!

This one includes speech games, such as, Reading books to her, working on Face parts, Up/Down and amimal sounds. I have a feeling these will change more often than the PT ones. These are fun to do with her and to watch her succeed!
Evie and I worked on... (ie, standing, playing, animal sounds) ...this week!

Today we went to Iowa City for her 2 week follow up appointment for her left CI. She did so great! Look how relaxed she was. Just chillin' with a little smirk on her face. Tucked into my shirt is her pink processor and a cord trailing down her side. She was listening to the computer beeps and lovin' life. Maura, our CI audiologist, took the photo for us since we were on our own today. Jesse is back in school now and won't be able to attend very many of the appointments. Its nice that this year Kira is in pre-school three days a week. It is hectic when she's being dragged around to all of Evie's appointments.

While in the waiting room today, Evie and I were working on her listening and mimicking skills. We've been working on various animal sounds, her favorite two are cow and bear. Today I said and signed, "The Bear Says..." and Evie said, "grrrr"! She has repeated this many times today! She is so smart!

Also, while playing UP/DOWN today with Kira, Evie said over and over, "uuh uuh uuhm." This is so great! She's even starting to close her mouth at the end now! She really does well with repitition!

Having the second Cochlear Implant has already helped with location of sound! She is learning quickly. She is getting better about letting me put the left one on her head too. Things are moving along! Yeah for technology!!!