Monday, May 27, 2013

First Sounds

On May 23rd, as previous posts have stated, Ryan received her Advanced Bionics Cochlear Implants.  These two videos are awesome-- they capture her understand that there is sound.  

This one was Thursday evening.  Bryce loves to make Ryan laugh-- this may be the biggest belly laugh Ryan has had.  So fun.



This one is her watching and listening to her favorite 'hopper'.  She was having so much fun.

Our weekend has gone pretty well.  Besides the fact that we may have a faulty CI (or it could be user error) it has been great.  We'll get that straightened out this week when everyone is back in office, as we can't get ahold of anyone anywhere since everyone is off for the holiday.

Ryan does excel at knocking her CI's off though-- not sure if she doesn't like the 'sensation' or whether she is just annoyed.  More to come on that as we continue to make progress this week.

Initial Stimulation- For Real

This was Ryan's very first stimulation of the very first electrode.  Our audiologist, Liesl, was 'testing' each of the four electrodes within each ear.  This was the very first electrode on the very first ear.  Note, that she actually cannot hear anything, it's literally a stimulation.  Ryan probably feels some kind of sensation, hence the response you will see...it's priceless...

Sunday, May 26, 2013

Video: Cochlear Implants Initial Stimulation

So, because I'm posting this from my work computer, I could only send one video to be uploaded here.  I'm actually unsure of how this one got through on our email, but it's the best one we have.  (Our work restrains all videos-- or I guess, most videos...)

To say the least, we are super excited.  She is having so much fun with everyone these days.  (As per usual, but now it's amplified, no pun intended.)  As soon as I get to my personal computer I'll post more videos.  Sean took a lot.

She does pretty well most of the time, but I do think that some of the time she really doesn't like having it on...but she'll eventually get to the point where she'll want to wear her Advanced Bionic Neptunes all the time...

Thursday, May 23, 2013

On Our Way

For those of you keeping up on the blog, I'll post something later tonight or at very latest tomorrow.  We are about to leave for the hospital for Ryan's CI Initial Activation.
We're very excited.  We'll keep you all in the loop on how everything goes today.

Ryan has been sleeping for the last hour or so, so we should have a very happy and awake baby for her first sounds.
Yay!  Happy dance!

Sunday, May 19, 2013

Count Down to Initial Stimulation

91 Hours to Initial Stimulation.  Just sayin'...

Yes, the count down is on.  We seriously cannot wait for the Thursday.  Ryan is all healed up and she is really doing well.  There are very few scabs left over her ears, and although a tad bit of swelling remains, she really couldn't be better.

That said, here's the plan this week.  Work Monday - Wednesday.  Take the day off on Thursday, but we'll still drop Bryce off in the morning at school.  Maybe we'll go to Starbucks first.  Then, we'll make our way to the hospital after Ryan's nap.  The appoint on Thursday, the 23rd is at 2pm.  And, yes, we'll have cameras, cell phones, etc in hand.  Sean and I are preparing ourselves.  She may cry.  And that, quite honestly, would not shock me.  She is so particular these days, that something different (real different) in her world may not be the 'music to her ears.'

Speaking of the initial stimulation, were not exactly sure of the process, or what her first sounds will be, but most likely, or, I would guess, they'll let her play with toys as they are initially stimulating her.  That way, she'll all of a sudden hear the toys on the table as she plays with them.  I'm sure at that point Sean and I will start talking to her.  It's going to be so much fun.

Then, that begins our Memorial Day weekend together.  We'll spend the rest of Friday listening to the Mozart or Beethoven CD in the car on the way home, and then we'll pick up big brother Bryce.  As I sit here and type this, I'm listening to Bryce play with his cars, talk to
 daddy, talk to Rudy and just laugh laugh laugh.  She's got a big surprise.  I'm sure she will love hearing from her big brother most of all.  She is his biggest fan.

Some videos to post this time.  We did a carnival, we ran a race this weekend.  Never ends, but I'm finding this is only the beginning of the crazy world of kiddos!






Tuesday, May 14, 2013

Pre-Op Appointment

Well, pre opp appointment went really well.  Nothing really to report except Ryan girl is rockin.  She has a little bit of fluid left in her ears, so hopefully that will go away soon.  The surgeons took the tubes out of her ears before they began the surgery, but I would put some serious money on the fact that she will eventually have to have tubes again.  Sigh.  We'll cross that bridge when we get there.

Also, we still have to keep her ears out of water, but since she's a baby, and considering she doesn't have a lot of hair, that's not to hard to manage.  Her little incisions are healing really great.  It's totally amazing how fast these kiddos bounce back.  Most of her swelling has diminished, but some still remains.  Now that's it's going down, we can totally see the hardware in her head.  Kinda cool.  (and weird.)  We are hoping for more hair any day now.  I mean, seriously.

So, on that note, let's move on to attitude.  I really think next Thursday is going to be interesting.  We are crazy excited about this time, but I really think she might look at me and do a face that says, 'really mom, not cool, I'm taking this off.'  She is so sassy these days, it's not even funny.  She's fussy immediately when she sees me because she wants me to pick her up.  Once I pick her up, she puts her hand on my face trying to push it way.  If she doesn't like something she picks it up and throws it.  If she doesn't want her food, she throws it on the floor.  Sigh, I think we have a little me.  At least she's little Miss Popular with all her friends.  That helps to have at least some of Sean's personality for sure.

Anyhow, this video below is one that I took a week ago right before we left the hospital:


This next video was taken yesterday on our way in the hospital to our pre-op appointment.


Then we have some pics as we were waiting for the doc...

Sunday, May 12, 2013

Week One Post Implant Surgery

Well, surprisingly enough, we went the whole week with no problems.  Minus the hating of taking her medicine, Ryan faired quite well.  Her sores are really healing so quickly, it is totally amazing.  The swelling still remains right where the implant is located (or maybe it's not swelling?) but regardless she is still doing well.  Ryan used to be a belly sleeper, not so much these days.  I would bet the belly sleeping will be back within the next week or so.

Ryan saw civilization post hospital on Friday.  My mom was in town all week (and the week before, thank goodness!) and we ventured out to lunch and for some shopping since it was super sunny and 80 degrees.  Ryan did so well.  Not a peep, and she just enjoyed her lunch with us.  

I will say, I have been surprised, no shocked, that no one, not one single person, has asked us about Ryan's ears.  I think if we were still living in Texas where people are super friendly and want to know everything about you before you even know their name, we would have told her story a zillion times by now.  Nope, not here in Philly.  If people know you, they ask.  But not one stranger asked-- and let me just tell you, just like most 9-month olds, she was getting soooo much attention.  It seemed like every other person was telling us how cute she was. Anyway, funny.  That's a total culture change that Sean and I have adjusted to-- the people, that is.  My mom even commented that no one would say hi back to her on her walk.  So funny.

Anyhow, my mom left yesterday after being here 10 days-- so sad.  It was fun having her here and the kids love her.  Here is a good pic of one of her last days here.  Don't mind Ryan's look-- she's a little chunk in this pic!


Speaking mom's, we had a fun mother's day.  Church, grocery store where Bryce ran up and down each isle, uneventful and unfruitful house hunting, nap, dinner.  Good day.  Some pics below... 
               
Preparing for pic
This is the best one out of 20

                          Falling over!!!                                        And we're down...


                                 Fussy fussy....                                         Someone wants her milk...


Tuesday, May 7, 2013

Cochlear Implant Surgery

Well, long story short, yesterday was a success.  Thank you for all prayers.

We arrived at the hospital yesterday morning at 6:30am. Conveniently enough, I forgot my overnight bag, which had my phone.  This, I thought, was the sign of not good things to come.  Once we were checked in and back in the Operating Room holding area, the nurse couldn't get Ryan's blood pressure reading.  After about 10 long minutes of trying, the nurse finally just switched machines.  Problem solved.  Geeze.
Next, we saw our surgeon, Dr. Robert O'Reilly, and shortly thereafter, the anesthesiologist.  We got on our way afterwards.

The anesthiologist along with the team of nurses took Ryan from our arms at 7:45am.  We were escorted back to the parent waiting area, where all the parents sit and wait.  There's not much going on in that room, mostly pretty quiet, and not much laughing.  It's very solumn there.

Every hour we began receiving updates by the nurse liason (new term for me), who is a nurse that routinely updates parents of the progress of surgery.  Thank goodness-- each time she came out, we were further along in the procedure.  We held our breadth each time she came out, and especially when our audiologist appeared, but each time it was just another good update.

Finally, at 1pm, the two surgeons, including Dr. O'Reilly, came out to greet us to let us know that everything went smoothly.  They said that the device tested postitively, meaning that her brain stem responded when testing (as opposed to not responding during her newborn and subsequent hearing tests).  Very exciting times.  The surgeons also said that they didn't have to shave her head because her hair is so fine (and thin) and also that she will most likely hate her little head wrap.

As we made it up to recovery, there was definitely a huge sigh of relief for Sean and myself.  We were so excited we made it through we could hardly stand it.  We both knew it was the best thing for our daughter, despite the short-lived trauma she is suffering this week.

She did well thoughout the day, obviously pain was evident, but thanks to hydrocodone, we kept it under control.  Ryan mostly slept the afternoon and evening away, and even much of the night.

The crew (docs, PAs, and nurses) showed up at 7am this morning to do their rounds prior to thier full day of surgery/clinic today.  Ryan got her wrap removed and I think she was so happy to have that thing off she started to do her little dance.  (She's skilled at moving her head and body from side to side-- dancing diva.)  Anyhow, we got a long list of 'to-dos' and 'don'ts' so we will be busy this week trying to keep up with everything. 

Will try to keep the posts coming...below are some pics.  Thank goodness this is now a memory.
Looking forward to Advanced Bionics Cochlear Implant Initial Stimulation - May 24.







Monday, May 6, 2013

Got 'Em!

Successful day! Will post more this week. So glad this is over.