EVA (Update on Miss E)

OK, I'm feeling like I need to update everyone on the latest with our Evie girl! Last week we spent 3 out of 5 days in Salt Lake City @ Primary Children's! UGH! Longest 3 days ever . . . for all of us! We found out some 'news', good news, not great news, hard news, confusing news, etc etc etc. Here is how it all went down! Day 1 of 3: Evie had an MRI of her brain/ears to see if there is anything structurally wrong with her inner ears. After the MRI, while in recovery, they did another Auditory Brain stem Response test. Both of these tests are done while your child is sedated :( Probably spent a good 7 hours there that day!
Day 2 of 3: We met with a Geneticist and her ENT, where they explained to us that Evie has a moderate hearing loss in both ears AND has LVA (Enlarged Vestibular Aqueduct). It's this tiny little tube in our ears, and hers is enlarged, aiding in the cause of her hearing loss (picture @ bottom). The good news, is that this only effects the ears. We don't have to worry about her eyes or any other kind of syndromes associated with hearing loss. The bad news is that this can be progressive. The overwhelming part is that it can progress SUPER fast, super slow or not at all - we just have to play the 'waiting game'! I'm praying that for her it doesn't progress at all!!! Just as we were leaving the hospital the doctor called Braden's cell phone and says, "I just got a call from radiology, please come back!" Then we find out that her MRI showed some 'spots' on her brain, they didn't know what they were so they ordered a CT scan immediately! Talk about roller coaster! Since we knew Evie wasn't going to 'hold completely still' for 5 minutes while getting the x-ray they had to sedate her AGAIN! This time it was the worst for us because she was awake but totally out of it! She started giggling and trying to wave at us and I just wanted to pick her up and cry! The test results showed that it was 'nothing' . . .
Day 3 of 3: Hearing aid evaluation. This was SO hard for me. Harder than I thought it would or could ever be. The audiologist kept saying, "This is the 'fun' part, picking out colors and ear molds!!" It really wasn't fun at all. I had a hard time picking colors and getting into it. Which is really hard for me to even admit, but it's the truth. That's when all of this became a reality for me. My sweet little baby has to wear these hearing aids for the rest of her life. I felt sorry for Evie a good portion of the way home that day. Then I started thinking about the past few days - while we were waiting for Evie's MRI there was this lady in the waiting room who was feeding her baby through a feeding tube with syringes. Now that is a lifetime commitment if I ever saw one! Evie's hearing loss is seriously nothing she or I can't handle! Worst case, she losses her hearing completely, we have options! 100% deaf people with cochlear implants actually HEAR! Pretty freaking amazing.

Evie will have her pink/glitter hearing aids Nov. 4th, the day before she turns the big 1 year old!

Life is SO crazy! (Random nothings)

Lately I feel like we're ALWAYS 'On The GO'! I feel like I can never catch my breath! Evie time, work work work, Braden's sports (right now it's b-ball and football), tons of quilts/quilting, cleaning house, appointments for Evie, Evie's 'hearing consultant' comes over, etc etc etc! Eeek!
I usually handle stress VERY well! Which, is super awesome for me! My mind can usually wrap around all of it somehow, but my body . . . NOPE, not having this stress! So, have this lovely sore throat, head ache and body aches! YES! We're actually on the up and up now though! SO glad!

AND who said Evie could turn 1 so fast! That's completely unfair! SO I'm throwing her the best 1st birthday any one's ever seen! I'll have to post pictures of these adorable pict. frames I'm making for it :) :) And Christmas . . . whaaa!!!!???? When did summer sneak away? TOO weird!

Can I also just say that I need to diet/exercise . . . in a bad way! I tried the HCG drops . . . for a week! In my defense, I think that diet is too extreme for someone trying to lose a smaller amount of weight. The hardest part about it for me was the lack (NO) of carbs. I love bread . . . with a sick freaking passion! If there was a bread diet I would do it in a heart beat! Anyone see a problem here . . . ya, I know! So if anyone knows a good diet (that is logical) let me know! I love Weight Watchers, but with all the chaos in our lives right now I doubt I'd be very faithful to the 'weighing in' once a week - which is the only reason I do good on that diet in the first place!

Sorry to rant and rave! :) Sometimes it does a girl good! AND Even thought our life is crazy, I really wouldn't change a thing (except to be skinnier)! I believe we are given different experiences in life to better ourselves.

Soak up the good times, learn from the hard times and always be thankful for the many blessings we have!

ENT (Exciting News, Thanks!) or Ear, Nose and Throat . . .

Evie and her daddy @ the doctor {love her face}

So Evie had an appointment with an Ear, Nose and Throat (ENT) specialist on Friday, October 8th! We weren't even sure why we were going to him before getting hearing aids, we were just following directions! Supposedly her ABR results were consistent with fluid in her middle ear, which was confusing to me because I think they would have seen that before now! BUT that was not the case, anyways. So we're in the waiting room and thinking, 'ok, they'll call us any minute now', well, right about that same time, Evie decides to poop her pants! YAY!

Braden: Is she . . .

Whitney: Yep

We just started laughing. We took our stinky babe into the bathroom and she yelled and screamed the whole time we were holding her down on the changing table! Nightmarish!

We finally get called in to Dr. Parks office! His 'assistant' came in and wanted us to give him a little 'history' of Evie. When we told him about all her 'bells and whistles' he was shocked! He couldn't believe her vocabulary and alertness. He said he wanted us to have a behavioral test and another OAE done before we saw the doctor. As it turns out, there was an audiologist available to do one right then! The {impatient} audiologist did the OAE in Evie's RIGHT ear and she P.A.S.S.E.D . . . . . she's never passed. She PASSED!!!!! :o) She even did a little better in her left ear too!

So we went back to Dr. Parks office and he didn't really do all that much. He pulled some ear wax out, which Eve HATED and then told us some amazing news! He said that he thinks her right ear is better than what we've been told. Possibly, not certainly, a perfectly normal hearing ear! SUPER GREAT! {It gets better} She may not need hearing aids at all! Even though she is severly deaf in her left ear, if her right ear turns out to be fine, they don't usually put a hearing aid on the bad ear if there is a good ear. He said it's like a person who is blind in one eye and see's perfect in the other. Why wear glasses? You're still going to use your good eye to see.

SO, just FYI, I'm not getting my heart set on Evie not having hearing aids. I think it still is a possibility and I am totally ok with that! BUT it would be really neat if she didn't need them!

We are going back out to Primary Children's in 2 weeks for another ABR . . . sad (I hate seeing Evie be sedated) and they will do an MRI of the brain at the same time! Isn't technology cool! Yes, it is! Then the next day we'll go back to Dr. Parks office to talk about the results of the tests and see what the best solution is.

I felt like I was prepared this time to hear whatever they had to throw at us. I'm glad it was finally something good! Even if hearing aids end up being the best option, I'm happy that she is hearing better in her right ear.



Evie did get some pretty cute things out of this trip, if nothing else! We got some super cute things for her 'Pinkalicious' 1st birthday party! I went a little overboard shopping for 'Evie clothes' . . . :) When we were @ the checkout Braden told the cashier that we weren't going to have enough money to buy food now . . . . hahaha He loves to make a fool out of me!

Evie Grace is 11 Months Old! (wait, what!?)

I know, I say it every time . . . but I still don't believe it! How do they grow up so fast!? I can't believe that Miss Evie is almost ONE whole YEAR old! I'm trying to wrap my head around it! This past month has been a BUSY one! Evie is always on the move and it's so fun {exhausting, but very fun}! We LOVE our little bundle of spunk! This is the funnest age!

A "few" things about Evie @ 11 months old:

• She LOVES her da da SO much! We wait on the front porch for him to get home, and when he pulls into the driveway she almost hyperventilates! {Braden LOVES it} Then she won't go back to ma ma for a good hour or so! She even has to get in the shower with him or it's CRAZY Evie!
• Evie points at people/things and names them {ie: da da, ma ma, grrma, grrpa, bar aka car}
• She has 3 (almost 4) teeth! They are the biggest 'baby' teeth I've ever seen! OUCH!
• She eats anything you put in front of her! Even lemons!
• She's SO happy!
• She climbs the stairs!
• She waves and says, "Bye, Bye" like a pro! And does this at least 50+ times a day!
• LOVES being outside! Once we're out there it's hard to get her back inside without a fit! {likes eating dirt, playing in dirt, playing in my flower pots, picking/ eating grass}
• Her pretty hair is finally coming in . . . THICK too! I'm loving having a little hair on that head to curl!
• Understanding simple commands, like, "Evie, throw the ball!" and, "Give ma ma the keys!"

I usually have to stop myself, because this list goes ON AND ON! As far as the hearing loss goes, we have an appointment with an ENT this weekend! CAN'T WAIT! But she seems to be staying caught up, I still have a hard time believing she's hard of hearing! Kathy Johnson, Evie's hearing consultant, came over two times last week! She's such a sweet lady! She's so cute with Evie and told us so much good information! I'm glad to have resources like her!

Well, until next time . . . {which will be weird} because Evie will be ONE whole YEAR old, hopefully I'll get some other posts in before then!

Also, thinking about having a "Pinkalicious" 1st birthday party for Miss Evie! All things pink! Or maybe pink polka dots and monkeys! Or maybe a cupcake theme! Or who knows! Any fun ideas?

"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 :)

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! :)

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 :)