Tuesday, September 14, 2010

"Hear" we go!

These past few weeks have been OVERWHELMING . . . to say the least! I feel like I've had an 'information overload' learning about children with hearing loss. BUT it's been great! Evie meets with an Ear Nose and Throat Specialist @ Primary Childrens on Oct. 1st! THEN we'll get the clearance for a hearing aid evaluation! THEN we'll get molds made of her tiny winy ears for hearing aids to be made! THEN we'll wait for the hearing aids to get here! THEN she'll have more tests done to make sure she's hearing WoNdErFuLLy as she possibly can! :)
So, in the meantime Braden and I were thinking . . . ok, what now!? Yell at her so she can hear us until the hearing aids are here? What can she even hear? What do we do? Should we change how we communicate with her!? Do we WAIT for the hearing aids to be here?
And then . . . a MiRaCle happened . . . .
My mom, just recently, started keeping in touch with a friend from 5th GRADE! (5th grade people). Who, ironicly, has 2 children with coclear implants (used when hearing loss is severe to profound), AND is the president (I think) of the Nevada chapter of some program for parents of deaf or hard of hearing children. ANYWAYS, Like a day after we found out about Evie's hearing loss (at the time pretty much no one knew but us), this lady (from 5th grade) sent my mom a package with a magazine that had some pages flagged w/ sticky notes. So my mom is going through this magazine and the first note says, "Just thought you might find this article interesting, this is so much a part of me." It was an article w/ questions and answers for parents just finding out about their childs hearing loss. SO GREAT! But the greatest part of it all, is we called my moms friend to get some more info and she hooked me up with a lady she knows from http://www.jtc.org/ and gave me her number, and here is the most EnCouRaGiNg information she told me:
3 most important things to do with your child while waiting for hearing aids (BUT I think this really applies to any infant - it's very basic, but very effective)
  • Talk close to them. Don't be further than 1ft away when trying to communicate. Speak with clarity, don't yell, and don't exagerate your lip movements.
  • TALK and TALK and TALK to them. Tons of conversation! Explain and narrorate everything going on around you. Talk until people around you are thinking, "Geez lady, are you ever going to shut up?!"
  • SING to them! Singing imitates speech. It will help them learn high and low, loud and soft, and rythem. You can also turn on music - any music (dance too)!
I love Evie so much! This journey is just begining for all of us. I have a much better attitude towards it NOW than I did before! Educating myself is the KEY! There is so much the I can do as her parent to help her. It excites me, and also makes me nervous! Yay for technology :)

Sunday, September 5, 2010

Evie Grace is 10 Months Old!

**Evie and her friend, Talia Nelson**

**Bobbing her head to Dad's tunes**

**Ice Cream Sandwich @ Grandma's House**

Evie inches closer and closer to a year old every day. It's freaking me out how fast they grow up! Like slow down, will ya!? BUT it's so much fun to see her discover herself and become a little person! She's amazing to me! I'm so happy to have her in our lives. What a little piece of Heaven! Since we found out about Evie's hearing loss last week, I've seriously been overwhelmed at what an amazing child we've been blessed with. Only chosen few are given trials like hers - what a special girl! Anyone who has been around Evie knows that she was given an extra special personality! She's our little ball of energy and charm! I know that she can handle anything that life has to offer her.
Here are a few special things about our sweetheart at 10 (seriously) months old:
  • Always on the move! She follows me throughout the house and 'helps' me do everything! She especially loves doing dishes :)
  • Her vocabulary consists of the following: ma ma, da da dada, no no, pa pa, bye bye (and that's just what we understand) She carries on some serious converstaions!
  • When she wakes up (even from naps) and I come to get her out of her crib she gets SO excited she jumps back and rolls over, burries her head, screams and giggles! (I look forward to it everyday!)

  • She really wants to walk! She can balance for a few seconds but then gets a concerned look on her face and sits back down.
  • She has a different crawl for every room in the house. Living room (hardwood floors) she does this one-legged crawl/scoot, dining room/kitchen (tile floors) she will not let her knees touch the ground! She crawls on her hands and feet only (smart girl)! And the rest of the house has carpet - she usually manages a normal crawl there.
  • She LoVeS her daddy! When he gets home from work she gets extatic and cralws right to him and puts her arms in the air like 'dad pick me up!'
  • Braden will put music on his phone and put it up to her ear and she bobs her head with the music!
  • When the flash on a camera goes off she gives us a major cheesy two bottom teeth grin! Hopefully she'll start cheesing it beforehand!

Evie is just a joy! This age is so much fun! I'm so thankful that Evie is ours! We love her to pieces! :)

Wednesday, September 1, 2010

ABR

On Tuesday, Evie had her first A (auditory) B (brainstem) R (response test) at Primary Children's Medical Center. What a day! We needed this test to see what Evie is and isn't hearing, because she hasn't been able to pass any of the tests done on her so far.
Evie had to come to the test, deprived of food and sleep because they had to partially sedate her (so sad). By the time they finally administered the sedation medication Evie was falling asleep no matter what we did! Not to mention the poor babe hadn't eaten anything since the night before @ 10:30pm. ANYWAYS, the testing began! We sat in a dark room in silence for 2 hours! They try to keep things as quiet as possible, so we had no idea how the test was going the entire time! But in my mind, we were only doing this test to prove that she hears fine. Which, as it turns out, is NOT the case! Evie has significant hearing loss in both ears. I am still trying to wrap my head around it. I am just amazed with how smart Evie is for having such a major hearing loss. She is right up to speed with any other 10 month old. I am so proud of her!
Hearing that something is wrong with your child is honestly one of the hardest things to take in. At first all I could do was cry. You just want your child to feel normal - to be normal. BUT being in Primary Children's Hospital is a humbling experience. We saw SO many babies and children who have MAJOR health problems and disabilities. Evie's hearing loss is something that CAN be fixed. It will be hard for her at times, but throughout this week I've learned that certain people are given different trials in life to better them. If anyone could handle a hearing loss, it's Evie. She has the most up-beat and spunky personality. I know she won't let it hold her back.
I'm so glad we were able to find this out NOW! Technology is amazing! The people who do these kinds of tests are truly Heaven sent! The knowledge that they have is priceless!

What the future holds: Next month we are meeting with an Ear, Nose and Throat Specialist @ Primary Children's to re-evaluate the test results that we just got. From there we'll go to a Hearing Aid Evaluation then another ABR, and somewhere in all that we want to have genetic testing done to see what has caused her this hearing loss.

Thank you everyone for your support and love :)