Ellie's Journey to Hearing

Life is Good!

2010-07-17T19:13:00.000-04:00

I realize that I haven't posted in awhile...just busy with life and summer! We've had a great summer so far. Ellie continues to thrive with her cochlear implants! I always try to get her doing new things on video, but she never seems to cooperate. :) She is saying "Hi" all the time! This week she learned where her nose is...I ask her "Where is Ellie's nose?" and she points to it. Also, whenever one of her "ears" falls off, she says "uh-oh". :) I guess that's the newest for now.

Here is a video of her--in the beginning I am trying to get her to flap her arms up and down like a duck when I say "Quack, Quack." She kind of does it with one arm as she is walking away from me. Then, you will hear her saying "Hi." The last trick I was able to catch on video is her showing me "how big is Ellie." You will see that she is a very busy girl--she will not stop for ANYTHING! Go to youtube to see it...here is the site:

http://www.youtube.com/watch?v=uVlaQx_HsIQ
Here are some pictures from our summer times!

Ellie and her cousins at the strawberry patch.

Swinging at Young State Park

Ellie's favorite thing to do while camping was pushing her stroller.

Not sure why...but this was Ellie's favorite pose on the beach.

SO excited!!

Surfer Girl!

Family Pic

New Tricks :)

2010-06-15T13:46:00.000-04:00

I know it has been awhile since my last post! We've been pretty busy over here! Ellie is listening and learning lots of new things. She is now hearing things and responding with actions. When we say "quack, quack, quack," she flaps her arms up and down. (She even does a little squat along with it sometimes) :) She lifts up her shirt and points to her belly button when we ask her where it is. When we say "How big is Ellie?", she lifts up her hands. (Our next goal of course is to get her to vocalize with each of these actions!) She just started trying to say "buh-bye." When she waves to people, it sometimes comes out more like "va-va." But she is trying!

Here are some pictures from our camping trip this past weekend!

Need baby/kid gear??

2010-05-27T21:49:00.000-04:00

A woman from our church, Jamie Bird, has offered to help us out with some more of our medical expenses. She has offered to generously donate 50% of the proceeds from her website. She has TONS of gear! And it's SUPER cute stuff! Check it out at www.minimebabygear.com. This fundraiser only lasts until next Friday, June 4th, so get your orders in soon!! (don't forget to put "ELLIE" in the discount code during checkout.) :) Thanks for your support!

Another great hearing test!

2010-05-19T23:08:00.000-04:00

We did another hearing test with Ellie--this time at Shawnee Park, with Jack and Kelly. Last time, Ellie was kind of scared to be in the booth, so we were hoping that today would be a better experience. We discovered that she is scared when we shut the door, so we kept the door open. It also was kind of dark in there, so we brought a lamp in for more light. High maintenance little girl! :) When we were finally settled, Jack tested the different levels and frequencies. They seemed to be about the same as what we found at Spectrum Audiology with Darcy. There was even one time when Kelly and I barely heard the sound, but Ellie looked up, letting us know that she heard it!

We are having fun with Ellie and figuring out that she is learning pretty fast! When we say that we're going to go "bye-bye," she starts walking to the door. And some of the time (not always), when we ask her where her belly button is, she lifts up her shirt and shows us! :) She says "ma-ma-ma-ma-ma" a lot, and we are starting to randomly hear other sounds, like "ba". This afternoon, while Ellie was napping, I was taking some laundry upstairs to fold. I set the basket on the floor--actually, kind of dropped it on the floor without thinking...5 seconds later, Ellie was up from her nap because she felt the vibration all the way in her bedroom! It still amazes me that she is so sensitive to that while she is sleeping!

Here are some pictures of our beautiful day today! Ellie never likes to look at the camera, so they are kind of random, but cute nonetheless. :)

Good Reports!

2010-05-06T12:45:00.002-04:00

We went to see the audiologist again yesterday. I was a little discouraged because Ellie was still only on the 1st program. But we did a hearing test, and it showed that Ellie is hearing as low as 20 dB. So technically, she could hear a whisper where she is at now. Darcy wrote on the audiogram, "Responses to narrowband noise in the sound field are in the borderline normal to mild hearing loss range at 500-4000 Hz." Wow! Borderline normal! Yay! So now, we are working on short "stuttering" noises versus long noises--trying to get her to copy us. :) Here is a video of Ellie responding to her name!

Airplane noises

2010-04-28T20:54:00.002-04:00

I just wanted to quick share a fun thing that happened with Ellie's class today! Her teacher, Kelly, always brings different toys each week for Ellie to play with. Today she had the cars, trucks, helicopters, and airplanes (and many others!) :) Kelly was making the airplane noise (ahhhhhhhh)--start low pitch, go higher, and come back down again. Then she showed Ellie the airplane and Ellie did the same noise! This is so awesome to see Ellie copy a noise that she has actually heard!

Ellie has been experimenting with her "soprano" voice for the past few days. It sounds like she is whining all day--Kelly calls it singing. :) She is just constantly making high-pitched noises! The only problem is that we can't really tell when she is actually whining...we just figure that she experimenting with her voice. :)

Music :)

2010-04-26T12:00:00.002-04:00

This past weekend, Ellie started dancing to music! It is difficult to tell when she is actually dancing to the sound of music because she dances all the time. We have a CD player that lights up when it spins, so Ellie learned early on (when she couldn't hear anything) that when it lights up, we dance. However, I have a CD that first has some talking for about 10-15 seconds, then the music begins. This past Saturday, Ellie didn't do anything during the talking part, but she started dancing when the music began! Then she did the same thing a little later in the day! It was fun to see, and to know that she is distinguishing between music and talking. :) I'll try to get it on video sometime!

Hearing Test

2010-04-22T13:31:00.002-04:00

Ellie had her hearing test yesterday. She showed reactions starting around 35 dB, which would be like normal talking volume. Yay! It was kind of a difficult hearing test for us to get through because she kept on having meltdowns...I'm not sure why...we thought maybe she didn't like Jack's voice coming through the speaker, but at the same time, she didn't always react negatively to his voice. But we will do another one for sure before school gets out for the summer! I'm very happy with these results!

I'm not sure if I explained this before, but when we go to the audiologist for reprogramming Ellie's processor, she sets 3 different programs with program 1 being the softest. We had the processors reprogrammed last week Wednesday, but we haven't been able to get past program 1. Every time I try to turn it up a little bit, Ellie starts to get fussy and clingy to me. So I guess we will take it very slowly! :) We definitely don't want to scare her!

Shhhhh

2010-04-17T20:41:00.002-04:00

I have been trying to get a reaction out of Ellie to the sound, "shhhh." Tonight, while she was playing very quietly at her kitchen, I said "shhh" behind her back and she jumped a mile!! She was all excited and came running to me. :) The other day, we were playing outside and she started to walk down the driveway (away from me.) I said, "Ellie," and she turned around and came back! It's so convenient that I can just say her name instead of running down the driveway to get her. :) So we definitely can tell that she is hearing quite a bit. Even though she doesn't always pay attention to us, at least we know that she is hearing us. This Wednesday, we are going to Shawnee Park to have a hearing test...it will be interesting to see what she is actually able to hear!

Ellie's Appointment

2010-04-14T21:01:00.002-04:00

We had Ellie's appointment today. Darcy was very happy with how great Ellie has been accepting new sounds! She reprogrammed Ellie's processor so that we can continue to increase the volume. I asked her when the volume will be a "normal" hearing volume, and she said it should only take another 3-4 weeks. At that point, we will stop increasing the volume and give Ellie a chance to listen and learn. She is hearing all these words and sounds for the first time, so she needs some time to process everything.

More Sounds--Day 3

2010-04-09T20:28:00.007-04:00

It has been another fun day of watching Ellie react to different sounds. I went on a walk with her and she turned her head to the bark of a dog...a first! I blew raspberries while her back was turned to me and she looked back at me and smiled and came running to me. :) This evening, I turned the volume up even more and she was reacted many times to our voices! However, when she gets tired or bored (especially in the evening), she takes her implants off. This can get VERY frustrating because we will sit by her for 15 or 20 minutes just putting her implants back on and then she tears them off, we put them on, she tears them off, we put them on, etc...

Here are some pictures of her wearing her implants and the harness that hold the body processors...

A New World--Day 2!

2010-04-08T20:35:00.003-04:00

We had such a fun day today, so I wanted to share it with you all! I put Ellie's implants on this morning and she kept on wanting to take them off...we battled for a good 20 minutes, but after that, she just forgot about them and was fine. I brought her to Joe's mom's house so that I could teach some piano lessons this morning. Before I left, I turned the volume up a little bit. She looked up right away and got a huge grin on her face and started running back and forth from me to the toys. It was hilarious! I was gone for a couple of hours, and when I got back, I turned up the volume a little bit more. She smiled really big again and ran around the circle of people giving hugs to everybody. So funny! :) I'm just so happy that she likes to hear the sound. I was kind of imagining her always wanting to pull them off of her head, but she just loves them!

This evening I went with my parents to get a swing set that I bought off of Craigslist. My dad was taking it apart and hammering some screws out. Ellie was walking around when he started hammering and her eyes blinked really fast and she looked up and smiled big...like "wow, that was weird, but I liked it!"

I'm just seeing so many reactions that I have never seen from her before, and it's so fun to watch her as she is experiencing this new world of hearing. I'm still not so sure how much she can really hear, but she really enjoys what she does hear! I have been trying to call her name when she is facing away from me, and she doesn't really acknowledge me yet...but I'm sure we'll get there soon enough. Who knows, maybe she already has "selective hearing," and chooses not to listen to me. :)

Links to the videos

2010-04-08T08:14:00.002-04:00

http://www.youtube.com/user/jpettinga111?feature=mhw5#p/a/u/0/xB188_2igsM

They are 2 different videos...one for the right ear activation and one for the left ear. The first 6 minutes of each video is "prep work"--just getting ready to turn it on.

some pictures...different reactions

2010-04-07T23:28:00.010-04:00

She had lots of smiles today!

This was the end when we had hooked up both implants...it was a little overwhelming for her at first. :(

I will try to get the videos posted tomorrow at some point...my computer is giving me some troubles with that!

ACTIVATION!

2010-04-07T21:04:00.003-04:00

We had Ellie's activation today!!! It went really well! The audiologist (Darcy) first activated the left ear. First she sent a series of internal clicks through, and then turned it on very softly so that Ellie could hear a little bit. When that ear was done, Darcy activated the right ear--first with the internal clicks, then turned it on completely. Ellie had a series of reactions...she was in such a great mood today, so she was super smiley already, but she smiled really big a couple of times when she heard some noises. It was so cute! :) When she heard some of the "clicking" noises, she got really serious one time and just stared at Darcy like, "What in the world is that????"

Finally, when we were getting ready to leave, we turned both of the implants on at the same time. She bawled! Joe was holding her and she just clung to him and cried so hard! It was so sad/happy for us to see that. That means she's definitely getting some hearing, but at the same time, you hate to see your baby cry like that. :(

The rest of the day we just hung out and experimented with different sounds. Tonight, we went over to Joe's sister's (Annelise) house so that Ellie could play with Logan. I turned Ellie's implants up a little bit and it was so clear that she could hear...she was just giddy and smiling and blinking her eyes. Darcy told us that if Ellie is blinking all the time, the implants need to be turned down. But tonight, after about 30 seconds of a lot of blinking, she seemed to settle in to the higher volume and really appeared to enjoy the sound!

All in all, it has been a GREAT day over here! We're so thankful that Ellie can finally hear us (even if it is very soft right now). We will continue to turn up the volume little by little throughout the week. Next Wednesday we will go back and reprogram her cochlear implants and continue to gradually increase the volume.

***I am uploading a couple of videos to "youtube" right now. As soon as that is done, I will post the link on the blog!

Together again...

2010-03-30T22:35:00.002-04:00

I forgot to update the blog last week, but I didn't want to leave anybody in the dark! Joe came home from the hospital last Friday--an unexpected 2 week stay! But we're so happy to all be home together again.

I have been lacking in posting new pictures of Ellie lately...I will try to get some tomorrow. Ellie absolutely LOVES the outdoors! She always tries to get her coat and my coat because she wants to go outside. If she doesn't get her way (aka I am busy with something and can't go outside at that second,) she will just throw a fit until I give in. I realize that this is typical 1-year-old behavior, but I'm still learning how to deal with her (and not give in all the time). :)

8 days until ACTIVATION!

My Ellie

2010-03-25T23:54:00.002-04:00

I got my Ellie back today! She has been at her Opa and Oma's house (my parents') since Monday! (So that I could be with Joe at the hospital.) Her reaction when she saw me was priceless. She was still in her car seat, and I peeked my head out of our house. When she saw me, her jaw dropped and she shook with excitement. :) She does this thing that when she is so excited, she tenses up and shakes really fast....so cute!

It was so fun to have her back. We played for awhile, she had a snack, and went to bed. I love routine. :) Now we just need Joe to come home and we'll be one big happy family!

Project: Be A Good Egg

2010-03-24T00:59:00.003-04:00

Local artist, Mary Claire Thomasma, is painting Easter eggs to hang on doors. She calls it project "Be A Good Egg." She is generously donating $5 of every egg sold to our family to help out with medical bills. Eggs are $45 and can be picked up at her house. To order one or get more info, you can call her at 616.940.0400. She has many different designs...but this is the one I have for my door. :)

Pictures of the Incision

2010-03-20T22:22:00.010-04:00

Okay, so I know I said I wasn't going to post pictures of her incisions, but I just can't believe how good it looks after only a little over a week. So here they are! Last Saturday, March 13

This Saturday, March 20

Stitches are out!

2010-03-18T22:59:00.002-04:00

I took Ellie to the Dr. to get her stitches out today. She sure didn't like that! It's not that it hurt so much...but rather being held down...that she didn't like so much. She even cried when the nurse came back to put a sticker on her shirt--as soon as the nurse got close, she balled! Poor girl has been traumatized in the last week. :( BUT, the incision looks a ton better now! Her ears are still gooped up with blood (yes, that is the medical term for it.) So I am putting drops in twice a day to moisten the blood and hopefully clean out the ear.

I will try to post pictures as soon as I get a chance....I've just been running back and forth from the hospital to piano lessons to pick up Ellie to home, etc. I did get a chance to go for a walk today with Ellie and my nephew, Carter. It was so beautiful out! Ellie is such a teaser, though, because while Carter is falling asleep, she is next to him trying to hug his neck, touch his face, pull his hair...anything to keep him awake! So instead of speaking "sternly" to her, I always have to stop the stroller so that she will see my "mean" face and know that she is being naughty. (yes, I do have a mean face...I'm sure she's terrified of it.) :)

Back to "Normal"

2010-03-15T22:40:00.002-04:00

I titled this "Back to 'Normal'" because Ellie really is back to her own happy self! But "normal" is not so normal because she has been living at my parents' house more than our house. Not that she minds...I'm sure they're pretty accommodating to her. :) She slept at home last night, but I took her back to my mom's this morning so that I could go back to the hospital to be with Joe. She is actually getting pretty steady on her feet...I don't freak out about her knocking her head on something now every time she tries to walk.

It's so good to see her happy and laughing and winking. She likes to play a new game of peek-a-boo where she goes behind my back and peeks around to see my face. She thinks it is so hilarious! It's so cute how she makes up her own little games. :)

Bandage is off!

2010-03-13T23:02:00.003-05:00

We took the bandage off this morning...It wasn't as bad as I thought it was going to be. I don't think I will post a picture of the incisions, though, because it is a little graphic. Ellie had another good day today (for the most part.) She threw up her milk this morning right after I gave her the steroids, but immediately felt better. After cleaning up that mess, my parents came over to help me cut the bandage off. Then they took her back to their house so that I could go to stay with Joe (my husband) at the hospital.

For those of you who don't know our family well, here's a quick little background....Joe is on dialysis because his kidney failed last year. To make a long story short, he is at the hospital because he got an infection (peritonitis) which needs to be treated with antibiotics.

So, needless to say, I was not with Ellie very much today. She went to my parents' house and is there overnight. My mom said that she was very happy again today. We switched her over to regular Tylenol, which seems to be controlling any pain that she has. We are so grateful for friends and family that are so willing to help out! Joe's mom came over to our house last night when Ellie was in bed and I had to bring Joe to the ER. (Thank you so much!) And we have had others that are so willing to help with Ellie or anything else we need. Thank you!

A Great Day for Ellie

2010-03-12T23:20:00.003-05:00

This picture says it all...today has definitely been a good day for Ellie. She has been very happy for the most part. She's not eating a whole lot yet, but more than yesterday. We kept her bandage on because we felt it was maybe safer to keep it for one more day. (I'm also kind of dreading seeing the incision/stitches/shaved hair.)

Last night we had to switch her pain medication because she was so itchy. She tore her stomach apart! There were scratches all over. :( So Dr. Daniels gave us another prescription which has been working well.

Home Again

2010-03-11T13:26:00.003-05:00

We are home again! We got home around 12:00 today. Last night went pretty well...Ellie slept quite a bit of the time. She woke up and cried a little bit every once in awhile, but around 3:00 am, she was definitely in pain, so I asked the nurse to get her some morphine. As soon as she got the meds, she fell back asleep. We continue to give her pain meds on a regular basis for today. All in all, I think she has handled such a huge surgery very good...she hasn't been nauseous at all! We want to thank everybody again for all of your prayers! Here are some pictures of our day yesterday and today...

I went back to the Operation Room with Ellie until she was asleep.

This is the recovery room...she wasn't awake yet here. Her breathing was very raspy, so I tried to hold her up a little bit.

This is right when we went back to the Recovery Room...kind of scary to go back there and see her like this. :(

In our room this morning...sleeping soundly.

Home and trying to eat a little lunch...she didn't eat ANYTHING yesterday!

Ellie was so happy to be back home and playing with her toys again! The bandage "helmet" has to stay on until tomorrow evening, although I think we might keep it on for an extra day due to her clumsiness.

Awake!

2010-03-10T22:52:00.002-05:00

She just woke up about 10 minutes ago. She was sad at first, and then just kind of groggy. She did give us a couple of winks. (That's her new thing.) :) She was only up for about 5 minutes, but it was enough for the nurse to consider her up from sedation. Now she is sleeping again, and I think I will see if I can get some sleep (before she wakes up completely and realizes that she hasn't eaten in over 24 hours!)

Waiting...

2010-03-10T22:15:00.002-05:00

We are still waiting for Ellie to wake up from the sedation. Dr. Daniels said they gave her a "boatload" of sedation, so it could still be a little while. We got her to open up her eyes for about 5 seconds....she was not happy! But it was good to see her eyes. We are going to wait until 11:00 pm (40 mins) and then call Dr. Daniels again if she is not yet awake.

All Done!

2010-03-10T19:00:00.001-05:00

Dr. Daniels just came by to let us know that he is done! She is still waking up, so we will be able to go back there soon. I will update again tonight after I see her and she is settled. Thanks again for all your prayers....we have felt them!

1 ear done!

2010-03-10T16:07:00.000-05:00

We just got a call from the Operating Room...her right ear is implanted and looking good. Now they are beginning to work on the left. As soon as both are done, the girls from audiology will hook up the implant to the processors to make sure they are functioning and the auditory nerve is stimulated. I'll keep you posted.

Tomorrow!

2010-03-09T22:20:00.000-05:00

I just wanted to quick post to let everybody know what time surgery is tomorrow for Ellie. We are planning on arriving at Spectrum at 11:00 am, and then surgery is scheduled for 1:00 pm. I'm sure Ellie will be soooo hungry when she wakes up! She can't eat anything tomorrow morning, and can only drink clear liquids until 9:00 am. Luckily, she's not a big eater in the morning anyways. :)

Joe took Ellie to see Dr. Daniels yesterday. We were concerned because she has a very runny nose...usually along with that, she gets fluid in her ears. Thankfully, he said there is no fluid in her ears yet. Hopefully tomorrow will be the same. Dr. Daniels also said that if one ear is clear and the other one isn't, he will still implant the one good ear.

We are both feeling kind of nervous for tomorrow, but at the same time very excited to begin this new path. We will be very relieved to have Ellie back in our arms after surgery tomorrow!

Here is a picture of my baby....please say a prayer for her tomorrow afternoon!

Activation Date!

2010-03-05T20:18:00.000-05:00

We received Ellie's activation date in the mail this week! The big day will be April 7--that's when they turn on the cochlear implants.

Ellie has been feeling good lately. No cold/cough or anything! I took her in to see Jack (the audiologist at Shawnee) on Monday...he looked in her ears and said that everything looked good. :) So we will take Ellie to see Dr. Daniels this coming Monday to make sure everything is good to go. Then next Wednesday will be surgery day! Please pray for everything to go smoothly for Ellie and the doctors/nurses. Thank you!

New Surgery Date--March 10

2010-02-19T14:20:00.001-05:00

I took Ellie to see Dr. Daniels this morning. I was really thinking that her ears were looking a TON better! But he looked inside, and said that they are still looking goopy inside. Therefore, he has decided that it would be best to push her cochlear implants date back 2 more weeks to March 10. :( He put her on antibiotics and more ear drops. Part of me wanted to scream, "Why didn't you do this 3 weeks ago when I first started calling about this issue?????" But the more restrained part of me just smiled and nodded. I'm still learning to be my child's advocate...I definitely need to learn to be more assertive and push for things I really want for Ellie. Yes, I know that this is only a 2 week delay, but it feels like forever when we are just wanting Ellie to be able to hear our voices. We have an appointment March 8 with Dr. Daniels to make sure that all the fluid is cleared up.

Drainage

2010-02-17T22:38:00.000-05:00

Ellie has been having some major drainage issues with her ears lately. A couple of weeks ago, her right ear was draining like crazy, so we used the ear drops for 5 days. It is just now starting to dry up. But last week, her left ear started draining. We used the drops in that ear for 5 days, but it is continuing to drain. I'm starting to get a little worried with her surgery date coming up quickly. This is normal for her ears to be draining....afterall, that's what the tubes were put in for. However, I don't know if Dr. Daniels will be able to do the implants if her left ear continues to be draining. He has been on vacation, but gets back tomorrow...I'm sure he won't be able to miss the MANY notes about the times I have called while he was out. :) I'll be sure to post as soon as I hear back from him!

On a lighter note, Ellie said her first word yesterday! It was "boo." She is obsessed with peek-a-boo, and lately she has started to lip-read the word "boo." Whenever we say it to her, she covers her eyes and plays peek-a-boo. (No, we are not teaching her to read lips...that is not in line with the Auditory-Oral approach that we have chosen to go with. She picked this up on her own--after she would put her hands over her eyes, she would uncover them and see me say "Boo.") We just noticed this past weekend that she understood the word "boo," but last night she actually formed the word with her mouth and said "boo" twice in a row. I never actually saw it because I was teaching piano lessons, but Joe described it to me in detail...he was quite the proud daddy. :)

The Process....

2010-02-10T14:21:00.000-05:00

We haven't had many appointments lately, so I haven't updated the blog in awhile...it's been nice and quiet around here! (Finally) :)

So I thought I would make a post explaining what the process/recovery will be like for Ellie's cochlear implants in a couple of weeks. Her surgery will be at DeVos Children's Hospital in the morning on Wednesday, Feb. 24. She should be in surgery for about 5 hours. They want her to spend 1 night in the hospital in order to monitor her pain and nausea. She will have a bandage going around her head that will look like a football helmet, which we will have to keep on for 2 days.

We will wait 3-4 weeks before going to Spectrum to activate (turn on) her implants. We don't have a specific date yet, but I think they'll call us soon after Ellie's surgery (I'm guessing it will be mid-March). The reason we have to wait before activating her implants is to allow time for the incisions to heal. At activation, they will adjust the sound so that it will be very quiet for Ellie...it will be a whole new world for her, so we don't want to overwhelm her with too much sound at first. We'll have MANY appointments thereafter at which we will very gradually turn up the sound. The day of her activation will be like her "hearing birthday." She will be like an infant hearing for the first time, so it will still be several months before she will even start to say her first words. (Actually, they say around 12-14 months post activation is when they start to say words.)

So that's the plan as it stands for now...it might not go exactly like that, but hopefully something like that! I've learned to not trust in my own plans lately, because my plans are not always God's plans. But we will continue to pray for Ellie and the doctors--that everything will go smoothly and according to God's will. Thanks for all of your support and prayers!

February 24

2010-01-19T13:50:00.000-05:00

Well, it's official now...Dr. Daniels and his team discussed Ellie's case, and they agree that Ellie will be a good candidate for cochlear implants. We went for her pre-op appointment this morning. Dr. Daniels said that her ears look good--ready for surgery. However, he has a flight scheduled for Feb. 10 at 3:30 pm. It would be a tight squeeze, doing surgery from 8:30 am - 1:30 pm (if everything goes perfectly), and then trying to catch a 3:30 flight. So we both agreed that it would be better to try for another day. I wouldn't want him to feel rushed...and then if something went wrong, I would want him to be in town to take care of it. So, our new date for implants is Feb. 24. Disappointing, but less stressful for everybody!

We celebrated Ellie's 1st birthday on Sunday. Here are some pics...

Birthday Tutu

Ellie didn't like her cake....she just threw it at Opa.

Lots of helpers to blow out the candle!

Birthday cakes....my first experience with fondant.

Ellie's Birthday dance. :)

Good Results

2010-01-12T22:30:00.001-05:00

We had Ellie's MRI and BAER tests today. The worst part of the day was watching as they had to put an IV into Ellie's little arm. :( She screamed like crazy! She kept watching the nurse that had done it to her...every time she saw her come in again, she would start to cry.

We will have to wait to get the results from the MRI...I am not expecting anything surprising, although I have learned not to rule anything out at this point. :)

I felt kind of weird going into the BAER test. I was just hoping and praying this time around for the result to remain the same (showing profound hearing loss.) At this point, if the BAER showed improving results, we would have to wait to do the cochlear implants...which would delay Ellie's speech/language development. The results were indeed the same as back in June...the audiologist was not able to pick up any sign that Ellie's brain was receiving the sound--profound hearing loss. So I will wait to hear from Dr. Daniels, but I am pretty sure we will keep the scheduled cochlear implants for Feb. 10.

Poor Ellie was so clumsy for the rest of the day. As she was waking up from the sedation, she would open up her eyes, but couldn't control her head--it was just very flopsy. When we got home, she would be sitting up playing and then fall right over. This is pretty typical for her at night (to be clumsy), but it was just very extreme all day long. Hopefully she'll have her balance back tomorrow!

Next Tuesday

2010-01-05T22:41:00.000-05:00

We were able to schedule Ellie's MRI and BAER tests for next Tuesday, January 12. It will be nice to get them both done on the same morning!

Tubes

2010-01-05T13:18:00.000-05:00

Hi Everybody! Thanks for all the comments! We have been thinking a lot the past couple of weeks about the 2 different devices. We have definitely been leaning more toward Advanced Bionics--we were about 90% sure we want to go with AB. I just checked all of the comments on my last blog, and I feel like it is a reaffirmation that we should choose AB for Ellie. Thanks again, everybody, for your comments!

Ellie got tubes yesterday morning. She was pretty fussy (and hungry!) afterward, but all in all, it went really good. When I asked Dr. Daniels about putting her hearing aids back in, he said I didn't have to...which confused me. I told him that she really gets quite a bit from her hearing aids and we would still like to use them if it was okay with him. He told us she can start using them again in a few days. But this got him thinking....He's not as confident to go ahead with the cochlear implants as he was a couple of weeks ago. He said he's not used to implanting children that have some gain from their hearing aids. (I think maybe he forgot that we had talked about this at our last visit...he didn't have her charts in front of him...). Anways, we will be going to the hospital to do another BAER test (the same hearing test we did in June when we found out about her hearing loss). We are trying to coordinate it with the MRI so that she only needs to be sedated one time. I really hope that we won't have to delay her cochlear implants, but at the same time, I understand that Dr. Daniels wants to be completely thorough. So we will see...I will keep you posted on the dates of the MRI and BAER test.

Dr. Daniels Visit

2009-12-24T11:20:00.000-05:00

We had our appointment with Dr. Daniels this past Tuesday! We did a lot of the usual--review her history, talk about implant devices, and check her ears for fluid. She has had fluid in her ears for a couple of weeks now, so she isn't hearing a whole lot with her hearing aids right now. We have an appointment set for January 4 for Ellie to get tubes put in. Dr. Daniels said we could wait and see if the fluid clears up, but even if it does clear up in time for her cochlear implants surgery on Feb. 10, the fluid could build up again after surgery and cause problems. So I told him we should just do it and avoid all the worry of canceling her cochlear implants surgery. She also will be having an MRI on January 18 to make sure her cochleas are looking good and ready to receive implants.

Dr. Daniels also gave us more information on the different types of cochlear implant devices. We were originally thinking we would go with the Nucleus 5 (from Cochlear Corp), which just came out in September (I think that was the month). It is a lot smaller than any other device, and it has a remote control to use for switching programs. But, Dr. Daniels told us that the customer service for Cochlear Corp. is not that great at all and can be very frustrating at times to deal with. He also said that the external devices tend to break a little bit more often. The other option we have would be to go with Advanced Bionics. He said they have outstanding customer service and they care more about people, rather than only being completely business-minded. The Advanced Bionics device also has a higher capability to hear music better, whereas Cochlear Corp. focuses more on speech. I asked Dr. Daniels what he would implant into his child and he said he honestly couldn't answer that because Cochlear Corp. just came out with the Nucleus 5 and he is very impressed with the small size of it and the remote control that comes with it. Before the Nucleus 5, he said he would do Advanced Bionics without hesitation. So, needless to say, we have a lot to think about again in making our final decision. We'll keep you posted!

I hope you all have a MERRY CHRISTMAS!

February 10 -- Implants Date :)

2009-11-24T13:54:00.000-05:00

Well, we have a date on hold for Ellie's bilateral cochlear implants. It will be February 10. Dr. Daniels does only 2 implant surgeries per month...Ellie has to be at least 12 months before she can get them. Her birthday is January 17, but both of the January dates were spoken for already. They said that if something is canceled for some reason, we will be the first one to fill in that slot. It is actually quite amazing that we are even able to get in as soon as February. Especially since she is still in the process of being evaluated right now! She had an appointment last Friday for an evaluation with the audiologists at Spectrum Health. They did a hearing test with her hearing aids on (and found basically the same thing as Jack usually finds at Shawnee Park). They also showed us the different devices that we have to choose from. Then, on Monday (yesterday), we had an evaluation appointment with a speech pathologist from Spectrum. She said that Ellie is actually doing very well with her hearing aids (not news to me.) :) She seemed quite surprised actually and was hesitant to say that she would recommend her for a cochlear implant. But then she asked me a bunch of questions and discovered that, even though Ellie is doing remarkably well for a baby with profound hearing loss, she is still only making "ah-ah-ah" sounds and she doesn't show any recognition of the meaning of words (ex: mommy, daddy, buh-bye, etc.) So in the end, she said that she thinks Ellie would do great with cochlear implants. The only thing that both people doing the evaluation said was that they might want to reassess her after she has had her hearing aids for a longer period of time. They didn't say anything for sure, and I think that Dr. Daniels will still want to do the cochlear implants as soon as possible simply because she does have a profound hearing loss and there is only so much the hearing aids will be able to do....Anyways, I hope that wasn't too confusing....

Tomorrow is our last appointment with Tim Burkhart (chiropractor)...even in the midst of all this testing and evaluating for cochlear implants, we're still praying that God might choose to heal her ears.

Thanks again for all your thoughts and prayers as we go through all this!

Appointments--Evaluation for a Cochlear Implant

2009-11-13T13:33:00.000-05:00

We have a couple of appointments set up for Ellie to start being evaluated for a cochlear implant. The first one is next Friday (the 20th) at 8 am. I'm not exactly sure what they will be doing at this one...The second one is the following Monday (the 23rd) at 8 am. This one is for speech--they will want to know what kinds of sounds she is making, etc.

I took Ellie this past Wednesday to see a chiropractor (Tim Burkhart). She did end up needing an adjustment....her neck was a little off. This was encouraging because Tim said that the neck area can be related to ear issues. I don't want to get my hopes up, but we're definitely praying that this could maybe help improve her hearing. We will be following up with him next Wednesday and the following week as well. Since she has been adjusted, I keep on trying to see if I can get responses with lower volumes and sounds like "shhh" or "ssss"....these are sounds that we were sure she would not be able to hear. Sometimes I think she does respond, but other times (most of the time), she seems oblivious.

Anyways, that's all for now...I will keep you posted with the appointments and hearing test results!

New Hearing Test

2009-11-03T10:13:00.000-05:00

Ellie had another hearing test done at Shawnee Park yesterday. This test showed improved hearing responses! Jack (the audiologist) said that he was seeing responses from Ellie without hearing aids for frequencies that he hadn't been able to get responses to before. He said it looked like she could hear at about 85 decibels (which would be a 10 dB improvement from before).

When she was wearing hearing aids, she was very vocal, so it was a bit more difficult for Jack to test her...but he said she looked like she responded to his voice around 35 dB. This is a jump up from the 45-50 dB level that he found last month. We're very excited about this improvement! On the one hand, we hope that it will continue to improve....but on the other hand, if she does continue to improve, it might take her out of candidacy for a cochlear implant when she turns 1. Jack told me yesterday that an infant with "profound" hearing loss can get an implant at 12 months, but a baby with "severe to profound" hearing loss may have to wait until they are 24 months. Right now Ellie is still in the "profound" category, but if she continues to improve with the test results, she may have to wait awhile.

So you can see, we're kind of tugged in a few different directions...We would love her hearing test results to continue to improve so that she wouldn't ever need a cochlear implant. BUT we don't want to wait a whole year if she will still need it when she's 2...that would be a lot of language development time lost. Another direction we have been exploring is stem cell treatment. A couple of weeks ago, I was just online researching different things and I came across someone's blog about stem cell treatment for hearing loss. It is still in the experimental stage, but I do think that sometime down the road, they will be able to improve hearing by using stem cells. There are no guarantees as to when this may come out, but it got us thinking about some different options. The catch is that once someone is implanted, their residual hearing would be gone, so stem cell treatment may not work. (Again, this is all online research, so I know I probably don't have all the facts straight....please, if you know anything more about this, let me know!) So we were talking about maybe implanting just 1 ear and waiting for stem cells for the other ear, but we kind of feel that we should do what is best for Ellie right now....which would be bilateral (both ears) cochlear implants. So those are the different directions we feel pulled toward...lots to think and pray about!

Ellie is a busy girl...she is pulling herself up on everything now (and getting into everything she's not supposed to!) :) She is always so happy...I couldn't have asked for a better baby! Here are some new pictures!

She like to crawl through tiny spaces!

Halloween Costume--Go Michigan!

Ellie's cousin, Jada

Ellie's Hearing Test

2009-10-06T21:31:00.000-04:00

We went to Shawnee Park yesterday for a hearing test. They first tested her without the hearing aids which came out with basically the same results from Ken-o-sha--profound hearing loss...registering sound at about 90 decibels. Then, we did the test with the hearing aids in. She showed some signs of hearing around 45 decibels, so she is hearing quite a bit more than we thought she was. :) I think it just takes time for her to know how to respond to sound. We keep trying different kinds of sounds and she is gradually responding to more and more. Today, I got a response from an "mmmmm" sound. We try to make different sounds for each toy that she has so that eventually, hopefully, she will try to make those same types of sounds.

Today, it was fun to see her laugh at her cousin, Logan, because he was babbling loudly. It was like it was the first time she had ever really heard him, and she thought it was the most hilarious thing...so cute!

The latest and greatest

2009-10-04T16:18:00.000-04:00

We have been noticing more responses to Ellie's hearing. We're pretty sure she can hear us "cluck" our tongues, and possibly some VERY loud talking. Tomorrow, we will go to Shawnee Park for a hearing evaluation. The audiologist there can do a hearing test for her and also adjust her hearing aids if they need it.

Last week I was really questioning whether or not we made the right decision to go with Shawnee Park (auditory/oral) program. I talked to a woman who has a little girl in the Total Communication program at West Oakview. She had such great things to say about the program there, and stressed that it is helpful to use sign language with her daughter. I did have some concerns about how we will be able to communicate with Ellie when she is in a pool or bath or in bed (because she will not be able to wear her processor for the cochlear implant in the water or to bed). Without signing, it seems like it would be frustrating in those situations. Anyways, I was on the verge of switching schools for Ellie, but then I talked to another mother of 2 girls that have been through the auditory/oral program. She assured me that Shawnee Park is a great place to be. Of course, every child is different, but it was just reassuring to hear that her girls just thrived there. They were able to me mainstreamed into their school of choice by kindergarten. As for communicating when the processor has to be off, she said that both of her girls have learned to read lips. Her oldest can have an entire conversation just by reading lips. Amazing!

She also talked to me about insurance. They have the same insurance as we have, and she said that it will cover a bilateral cochlear implant (both ears implanted at the same time). This is huge because it will help Ellie to know where a sound is coming from! We are totally excited about that!! I called our insurance carrier this past summer when we needed hearing aids, and they said they don't cover anything related to hearing, so I assumed they wouldn't cover a cochlear implant. However, I guess they consider hearing aids a "lifestyle choice," but will still cover cochlear implants....don't ask me???? Anyways, since we can go through our insurance for the cochlear implant, we don't have to wait for 6 months for Ellie to wear hearing aids. (that was a requirement set by Children's Special Health Care Services.) So I was able to move up her cochlear implant evaluation to November and her meeting with Dr. Daniels to December 22. So now (hopefully) Ellie will be able to get her cochlear implants sometime in jan/feb. Yay!

Ellie's 1st day of School

2009-09-24T20:51:00.000-04:00

Ellie had her first day of school on Monday! Don't worry, she's a straight-A student so far. :) Actually, all she had to do was play. Her teacher, Kelly, will take the first couple of sessions to just get to know us. Her sessions will be for 2 hours every Monday morning. Kelly took a turkey caller along with her and we discovered that Ellie can hear that! We got her busy playing with something and then would do the turkey caller and she (usually) would look around to see where the noise was coming from. Yay!

On Wednesday, we went to HearUSA for a check-up visit. They turned her hearing aids up a little bit more, but didn't do any kind of hearing assessment so we are not exactly sure how much she can hear yet. We keep trying to test out her hearing by talking loudly behind her, but we haven't seen any huge reactions yet. When we think we do see a reaction, it's usually because of something that she caught out of the corner of her eye.

The picture above is of Ellie wearing one of the Hanna Andersson hats we use to cover her hearing aids. They are supposed to keep her from pulling off her hearing aids, although she has perfected the art of taking her hat off and ripping out her hearing aids--all while I'm driving in the car!

Shawnee Park

2009-09-15T22:01:00.001-04:00

So we decided to go with Shawnee Park! We are very excited to get started working with them. :) I have an appointment to meet with some people from Shawnee Park and Ken-o-Sha on Friday morning to make an "Individual Family Service Plan" (IFSP). We will establish where we are at right now, and then set some goals for what we want to happen.

Ellie continues to be very vocal with her hearing aids. :) We will go back to Hear USA (hearing aids place) next Wednesday--hopefully they will turn the hearing aids up so that she can hear other things!

Schools

2009-09-13T20:52:00.000-04:00

Last week we toured 2 different schools for Ellie to go to. The first school we went to was Shawnee Park. At Shawnee Park, they focus on developing listening skills without using sign language or lip-reading. We were able to meet some of Ellie's potential teachers, and we really liked everybody that we met! It was fun to be able to see the 2-year old, 3-year old, and kindergarten classrooms. :)

The second school we went to was West Oakview, which is a total communication school. They incorporate sign language and lip-reading as well as working on speech/listening skills. We really loved all of the teachers/supervisors that we met.

Regardless of which school we choose, someone will start coming to our house once a week to work with Ellie and me. Then, when she turns 2, she will go to school for 3 or 5 half-days. (I can't imagine sending her away 5 days a week!) By the time she reaches kindergarten, she will hopefully be ready to be mainstreamed into whatever school we want to send her to.

Before we went on the tours, we were pretty sure we wanted her to go to Shawnee Park. But after visiting West Oakview, we found that we really liked that school too. We've been talking about pros and cons of each school all weekend...we're starting to lean toward Shawnee Park again, but we are not 100% sure yet, so I will keep you posted!

Ellie's 1st week with hearing aids

2009-09-04T20:36:00.000-04:00

For the most part, Ellie is not too bothered by her hearing aids. She sometimes likes to tug at them, but I just divert her attention to something else and she forgets about them again. In my last post, I mentioned that I thought she was responding to some loud noises. But since that first day, we haven't really seen many reactions....we've tried banging pots and pans, yelling her name, and making all kinds of loud noises. She just doesn't seem to react--it could be that she hears it very softly and doesn't really care since she isn't used to hearing anyways...I don't know??

On the other hand, we think she can hear her own voice. With her hearing aids in, she jabbers like crazy!!! And she jabbers loud!! We can hardly carry on a conversation. :) It's actually pretty funny!

We have a couple of appointments set up next week to tour potential schools for her--Shawnee Park and West Oakview. Shawnee Park has an Oral/Deaf program that does not incorporate sign language. West Oakview does incorporate sign language. We will be touring each school next week and as soon as we make our decision, we will start having someone come to our house about once a week to work with Ellie.

Hearing Aids

2009-08-31T21:02:00.000-04:00

Ellie got her hearing aids today! At her appointment, the audiologist (Jillian) thought that she saw Ellie respond to her voice at 45 decibels. Jillian didn't turn the aids up all the way because it would be too much for her little ears. They told us to keep her hearing aids on for only a total of 1-2 hours today so that she can ease into it. When she had the hearing aids on, we were watching her really closely...trying to see if we could get a reaction. We got a couple reactions when we were talking pretty loud! :) One time, I hid behind the door and said "Ellie" really loud while Joe held her...he said she right away looked at the door! Fun. :)

Now the battle will be to get her to keep them on...we got some toupee tape from the beauty store to help keep them in place. I also ordered a hat that the audiologist recommended to help keep them on--it will hold them in place, but the material allows the sound to still reach the microphone on the hearing aid.

We have a check-up in 3 weeks to have her hearing aids adjusted--hopefully turned up a little bit more! All in all, it was a fun day to be able to see Ellie react to some of the noises we make. :)

side view--bright pink with clear sparkly inside her ear

I think she likes them! :)

We have an ID number!

2009-08-25T20:56:00.000-04:00

I called Children's Special Health Care Services to see if they had processed our application yet. They did! So I was able to get Ellie's ID number for CSHCS, and I called Hear USA to make an appointment for her to get her hearing aids. We will be getting them next Monday. :) Yay for a productive day!

Pray for Miracles

2009-08-19T20:39:00.000-04:00

....Something I forgot to post previously...In terms of a time frame, we are hoping that Ellie will be able to have a cochlear implant sometime around March.

I also wanted to let you know about a video that I saw on "youtube." Go to this link http://www.youtube.com/watch?v=iCZ3CBmYZfw . This is a video of a baby that has a cochlear implant. She is at the doctor's office ready to get her cochlear implant activated (turned on.) So this video shows her being able to hear for the first time. Warning: Be ready to cry! (at least I did) :)

In the meantime, we hope to get Ellie's hearing aids in the next couple of weeks. But I also wanted to ask everybody to just pray for a miracle. I not only pray for one everyday, but I'm always watching Ellie to see if God gave us a miracle. I know that God is able to heal Ellie! On the other hand, He also made her with these ears that are so special, and I know that He has great plans for her. Anyways, that's just my way of asking everybody to please continue to pray for a miracle...Thanks!

The Story So Far....

2009-08-19T10:43:00.001-04:00

I decided to set up a blog as a way for everybody to be able to know what is going on with our little girl. So here is the story so far...

Ellie was born January 17, 2009. She did not pass the newborn hearing screens in the hospital, so we had to go back and do another test when she was a few weeks old. Once again, she didn't pass that test, but we still were not too worried because they suspected she had fluid in her ears. Since the test was only pass/fail, fluid can easily cause the test to be "fail." So we went back in March for a more in-depth test. This test showed "moderate hearing loss" in one ear and "severe hearing loss" in the other. We then went to an ENT doctor to see if she still had fluid in her ears. He confirmed that there was fluid in her ears and decided to wait a couple of months to see if the fluid cleared up. We went back to see him (Dr. Sprik--ENT) in May and he told us the fluid was gone, so we could do another hearing test. At this point, we were not too worried because we thought Ellie was responding to our voices. We would talk to her and she would babble back.

On June 18, we went to Spectrum Health for a hearing test. We were shocked when we heard that she was not responding to anything the Audiologist was sending to her ears. She told us that Ellie had "severe to profound" hearing loss in both ears. Definitely not what we were expecting!

We got in touch with Ken-o-sha, and they did a hearing evaluation and a developmental assessment for Ellie. For the hearing evaluation, the audiologist (Mary) put "ear plugs" in Ellie's ears and then went into a room across from us where she could observe through a mirror. I held some toys for Ellie to play with, and then Mary would say things through the ear plugs to see if Ellie would react. She did get a reaction at 95 decibels and higher. This would put Ellie in the "profoundly deaf" category. Basically, she probably couldn't hear a lawn mower if it was right next to her. On the other hand, it was kind of fun to see her react to hearing something. When Mary cranked up the volume and Ellie heard her, she looked around, then up at me...thinking "what was that??" The developmental assessment showed that she is developing at a perfectly normal rate (which we basically knew already).

Ellie has been fitted for hearing aids. She will be getting bright pink around the ear and a clear sparkly to go inside the ear. (so cute!) :) They will adjust them so that they are amplifying to the max. Then, after about 4 1/2 months of hearing aids (late December), she will have another hearing test done to see where she is at. On January 5, we will go see Dr. Daniels who is a cochlear implant surgeon. He will evaluate her and see if she would be a good candidate for a cochlear implant.

Right now we are in the process of getting Children's Special Health Care Services (CSHCS). CSHCS will cover the cost for everything related to Ellie's hearing issues. We cannot get the hearing aids for Ellie until we have CSHCS, so hopefully it will come through soon! We just received the application in the mail yesterday with a letter saying that Ellie qualifies for CSHCS.

That's it for now, I will keep you all posted as there are new developments!