Saturday, July 17, 2010

Life is Good!

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


Tuesday, June 15, 2010

New Tricks :)

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!









Thursday, May 27, 2010

Need baby/kid gear??

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!

Wednesday, May 19, 2010

Another great hearing test!

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.  :)


Thursday, May 6, 2010

Good Reports!

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!

video

Wednesday, April 28, 2010

Airplane noises

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. :)

Monday, April 26, 2010

Music :)

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!

Thursday, April 22, 2010

Hearing Test

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!

Saturday, April 17, 2010

Shhhhh

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!

Wednesday, April 14, 2010

Ellie's Appointment

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.

Friday, April 9, 2010

More Sounds--Day 3

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...



Thursday, April 8, 2010

A New World--Day 2!

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

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.

Wednesday, April 7, 2010

some pictures...different reactions

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!

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!

Tuesday, March 30, 2010

Together again...

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!

Thursday, March 25, 2010

My Ellie

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!

Wednesday, March 24, 2010

Project: Be A Good Egg

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. :)

Saturday, March 20, 2010

Pictures of the Incision


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

Thursday, March 18, 2010

Stitches are out!

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.) :)

Monday, March 15, 2010

Back to "Normal"

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. :)

Saturday, March 13, 2010

Bandage is off!

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!

Friday, March 12, 2010

A Great Day for Ellie


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.

Thursday, March 11, 2010

Home Again

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.

Wednesday, March 10, 2010

Awake!

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...

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!

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!

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.

Tuesday, March 9, 2010

Tomorrow!


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!


Friday, March 5, 2010

Activation Date!

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!

Friday, February 19, 2010

New Surgery Date--March 10

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.

Wednesday, February 17, 2010

Drainage

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. :)

Wednesday, February 10, 2010

The Process....

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!

Tuesday, January 19, 2010

February 24

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.



video

Ellie's Birthday dance. :)

Tuesday, January 12, 2010

Good Results

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!

Tuesday, January 5, 2010

Next Tuesday

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

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.