More on the CI Journey

Yesterday we were at Nemours in Wilmington (the children's hospital where all Ryan's appointments are located) doing some fun hearing aid fittings.  I must say, Ryan is such a trooper.  The ear mold for her left ear wasn't correctly fitted, so the tech tried to fit it correctly for her.  Unfortunately, after about an hour of putting the hearing aid in and out repeatedly, she thought it would just be better to remold her ears again.  Which, I'm definitely not complaining as taking molds of her ears are great so that her aids will continue to fit her as she grows.  In the mean time we do have a left hearing aid that works, it's just kind of hard to keep in her ear consistently.

Ear molds!!  I laugh at this pic because the tech and me wore her out and she fell asleep during the molds.  Too funny.  The tech said that a baby falling asleep during all this was a first!  Ha!!

After the appointment that ended up lasting 1.5 hours, we had to rush home to meet with our Early Intervention coordinator.  (Weekly appointments).  We had a ton of fun with Ryan and her hearing aids on.  I will film her and put it on here, but basically, Ryan is responding to sound!  Which is awesome!!!  I'm trying to not get too excited, as she definitely does not respond to speech or normal noises, but she does respond to really loud (seriously loud) noises with her hearing aids on.  I'll take a couple of videos and you'll see what I mean. It's not like she is really turning her head consistently towards the loud sound, but she blinks and/or her eyes open really wide-- it's the faintest of response, but it's still a response.   I'm just glad that these hearing aids will just help her little brain be stimulated prior to 9 months with the CIs.

Also, we spent last Friday evening down in Wilmington-- these trips are pretty much weekly now-- for a Cochlear Implant Christmas Party at the Nemours. As any normal obsessed parent would, Sean and I saw this as a fantastic networking opportunity.  

We learned a lot from many parents, from which CI manufacturer they chose for their child and why, and which school they chose to send their child to for learning.  Many parents send their kids to The Clarke school, which is an oral / auditory school for the deaf located 20 minutes from our house.  There are only four Clarke schools in the country where children who have a severe to profound hearing loss learn speech as their primary language.  No sign language is even taught at the Clarke school--not even baby sign language.  Now, if you have a child who is hard of hearing, you probably know that this methodology of not teaching deaf children ASL (American Sign Language) is pretty controversial as there is much research in support and in disagreement of ASL correlating to spoken language development.  A few of the couples we spoke to that evening send their child to pre-school at the Clarke school, and love it, as their children's language has just taken off while preparing them for mainstream kindergarten.  This is so encouraging since almost all of the parents we spoke to, their children were implanted no earlier than 15 months, and all were sequential implants- no bilaterals.  So, even though I keep telling myself I want Ryan to have CIs earlier, I guess I'm okay with 9 months, bilateral.  I just wish it were tomorrow.

As far as manufactures go, we are still doing much research and plan on sitting down with a rep from each manufacturer to understand the future plans and pipeline for each product.  Sean and I are confident that all three CI manufacturers are solid options from being able to understand and learn spoken language, but we want to know what the future is for each of these companies, and how are they looking to enhance their technology further.  

Up next, Genetics testing on January 3rd!!!!

It's Christmas Time! Already!!!

As we are starting to get ready for the holidays this year, I have noticed that I haven't done a very good job of taking pictures OR posting to my blog (or FB for that matter).  I mean, the media says that we have an extra weekend this year, but I seriously cannot believe we are already one week away from Christmas.  Time passes so quickly!!!

At school today, it was wear your Holiday attire, and just like every other day in December the kids were wearing something that had to do with Christmas.  I swear, I have more Christmas garb this year than ever, for both Bryce and Ryan!!!  I normally would just choose one, max two, pics in the same pose, but this morning (these were taken before 7am), I couldn't help but laugh at all the different faces that each picture capture.

  

                  Little sister watching big brother intently.     Big brother practicing his side smile.

   

                 I hate this!!!                                           As soon as big brother leaves, Ryan topples over!

Scheduled: 9-Month CIs!

To say that this was a pretty stressful week for mom and dad would be an understatement.  On Wednesday, Ryan had her MRI and CT scan.  This is done to determine her candidacy for Cochlear Implants (CIs).  Basically, for her to be a candidate, besides the diagnosis of profound hearing loss, she has to have a 'normal' MRI and CT scan, which at a minimum displays that Ryan has normal inner ear structures.  And, drumroll..... Ryan is a perfectly healthy baby girl.  Her MRI and CT scan were both normal, showing nothing but a normal baby brain and structures.  Thank God.

The CI Date

Upon consultation with our surgeon on Friday for review of her MRI/CT scan, he told us that Ryan will have cochlear implants on May 6th!!!  Yay!!  9 months is definitely young, but it is so great that she will have both ears completed at once and that she will be able to hear us by the time she is 10 months after her ears have had time to recover.  We still have several milestones to complete before then (i.e. genetics), but assuming all is good, we have a date to look forward to.  Just to note, most surgeries are done at 12 months or later, but there is so much research supporting earlier implantation that Sean and I have been trying to be so proactive for an earlier surgery date.  Although this is not fun to deal with, we know that we have to be 'crazy' parents to fight for what is best for our daughter.

The MRI

Although this sounds pretty straightforward-- to have a MRI-- but for babies and kids, let's just say it's a whole event of a day.  Since she is a baby and has to lie perfectly still, she had to be sedated.  Being sedated means that she had to have an IV.  Most kids are lucky because they can have medicine that will take away the anxiety and pain of putting in an IV, but the anestiologist didn't feel comfortable giving Ryan this medicine due to her age, so Ryan had to deal with the nurse poking her twice to get a strong enough vein.  And let me just tell you, that was no easy feat to watch as a parent.  Our baby screamed in pain during this whole event, and it was horrible to watch -- she was so scared.  Once that was completed, we had to wait. and wait. and wait. for the MRI scanning machine to be open. Of course, they tell you not to feed your baby for several hours before, so now we have a baby who is in pain because of the IV and who is now starving.  (Well, maybe not starving, but she was hungry that's for sure).  Finally, the machine was open, and at that point the anestiologist came back in to give her propofal to put her to sleep.  Again, not fun to watch for a parent-- watching her go to sleep and be very still.  At this point they send out the parents to wait.

So, we waited quite a while-- seemed like years.  But, it was only hours, and we were allowed to come back in.  Of course, Ryan was still asleep and pale as a ghost, but she woke up pretty quickly.  Again, Thank God.

                                Getting weighed in                                                   Checked out by our nurse

                             Hanging out with daddy                                         Hanging out with mommy

             Pretty hospital gown to go with her little grimace                 Getting some rest before we begin

                             More and more resting

                     Immediately after surgery                                  Daddy waking Ryan up afterwards

 We got Abby at the hospital gift store before leaving-- 

Ryan's new best friend

Today we found out we will be getting CIs in May 2013

Yay!

Some More T-Day Pics

Going to the plane on our way to Omaha:

On the plane with daddy and watching Sesame Street

2nd Cousins-- Noah & Andrue

                                         

                                Grammy & Gramps!                                                        Hands in the air!

Ready for Christmas!!

Hearing Aids

Ryan got her hearing aids this week!  Just want to do a little happy dance, not because they will help her to hear, but more so because it's another step closer to CIs.  

I will point out that they are pink, and they have glitter.  And, I will say these suckers are super tech-advanced-- so she looks as cool as one baby girl can get that wears hearing aids.

So, the reality sets in.  The molds are now too small, because as you know, babies grow like weeds.  This means that she gets a lot of 'feedback' in her ears, which is a high pitched screeching sound, when her aids are not in her ears correctly.  It's not a big deal for her because she can't hear that sound, but it's kind of annoying for us, and plus this means that they are not in her ear correctly thus not stimulating her ears.

We are trying to wear them as much as possible so that if there is any stimulation she'll know.   We are getting her new molds in a few weeks, so the bigger molds will also help.

All for now...baby is calling me!

You can see them better here.

Turkey Day!

We headed on over to Omaha for Thanksgiving this year.  Many prayers please for my grandpa, who ended up in the ICU this holiday weekend.  On Wednesday, my 90-year young grandpa stumbled backward as he was trying to sit down.  As he was falling backward, he hit a cement pole that is part of their basement structuring.  He hit it so hard, was briefly knocked unconscious, and was taken by ambulance to the hospital.  To make a long story short, after a couple of brain scans that displayed increased bleeding he was not able to have Thanksgiving dinner with us on Thursday nor able to just relax with the family on Friday.  He is doing better and was discharged today, Saturday, the day we returned from Omaha.

Needless to say, it was a tough few days.  We are just glad he is doing better and is now at home.   On a selfish note, it was quite the experience traveling for the first time as a family.  It's certified circus.  Bryce is too old to sit as a lapchild, but too young to really have his own seat.  Then, to make it all the more interesting, thanks to USAirways we didn't receive our luggage until Thursday mid-day.  Love it.

The entire Krenz family came into Omaha for the weekend, and we had a wonderful time, despite having to visit grandpa in the hospital.  It's always great getting to catch up with family, and my cousin Keri and I always leave saying to each other how good friends we would be if we lived closer.  It's so easy for us to catch up right where we left off.  

A few pics of the plane rides and uncle Dan, my aunt Gail, and baby Ryan.

 

                      

The Spin Cycle

In the event that you didn't notice, or if you are new to the blog, we recently had a Reedy makeover.  I asked an expert blog designer to help remake my page so that I could easily keep up with it.  I chose not to have an 'About Me' section, as most likely you know me already, or at least you know Sean, Bryce, or Ryan.  Anyhow, I love how it turned out, the colors are fun and the design is simple enough for me and my simplest blogging style.

In choosing a new subtitle, Sean suggested, 'The Spin Cycle', which, I mean, is there a better way to describe our lives right now?  A two year old and a 3.5month old--'nough said.  Then, add on the extra layer of Ryan's hearing loss-- and it went from craziness normalized to craziness intensified.  Most of my vacation days are taken now not for rest/relaxation but for appointments or phone calls for Ryan.  Yesterday I spent more than two hours on the phone with the billing person at the hospital where Ryan goes for all her hearing appointments, the disability insurance persons, and Ryan's pediatrician.  It's my new second job working for Ryan's hearing.

I might sound like I complain a lot.  I probably do.  But, I really can't imagine my life without these kids and this family.  It's definitely more than I ever bargained for, but the fun moments make every second worth it. Despite my impatience with Bryce's growing love of cars (little cars driven all over my furniture), or his coloring on Ryan's dresser, or getting caught applying sunscreen all over him on a cold cloudy day (see pic below), I can't help but just love that little monster.  He's hilarious.  And it's so much fun just watching him learn and grow.  And despite the unexpected life that we'll be living with for Ryan's hearing, it's all worth it.  (At least I keep telling myself this.)

So, the Spin Cycle it is.  I'm sure many moms can relate, but in this moment, this tagline is claimed by me, Kate Reedy.

That's sunscreen on his cheeks and chin...he just got caught. 

A Reedy Slideshow

Here is a 3-4 minute slideshow.  It's pretty simple to do; thanks smilebox.

Another Hearing Test

Liesl Looney, PhD.  Thank God for people like her.  I never really knew how much I hoped I would never have to meet her.

I really wish I never had to meet her; but, given the circumstances, I'm certainly very grateful for her to have entered our lives.

Liesl is Ryan's audiologist.  Scratch that.  She's our audiologist.  You see, in pediatric audiology the patient may be the child, but from experience, I can tell you with confidence that the patient is really multi-faceted:  the child, the parents, the siblings, and anyone who interacts with Ryan on a routine basis.  Liesl says that she loves peds-- she loves changing lives.  Literally.  Watching a child progress from some degree of hearing loss to being able to hear the world and communicate  without missing a beat never gets old.  Her words. What she doesn't say much about are the parents-- the ones who are so crazy that go to great lengths to research the best devices to aid in their child's hearing loss and are very aggressive with their child's treatment regimen.  Then there are other crazy parents on the other end of the pendulum that don't show up for appointments or ones that she has to worry about.

We met with Liesl again yesterday.  Although we have only met with her once before, she has been very interactive in communication via the phone and email.  When I have crazy parent questions, she always answers and always gives us her professional informed opinion.  Yesterday, Ryan had her 7th hearing test.  It was her 2nd unsedated Auditory Brainstem Response (ABR) test.  It's really interesting how these tests are conducted at such a young age-- basically, while the child is sleeping (or nursing in my case) there are several electrodes connected to her forehead and behind her ear.  There is another wire they put inside her ear and at which point they start stimulating her with her different pitches and frequencies.  Her brain is supposed to respond to these noises-- trust me, they are loud.  But, sadly, and with no surprise, there's no change this time around.  There may be 'something' as Liesl would say, here and there-- 'little blips' per se, but overall nothing.  Still the same diagnosis-- bilateral profound hearing loss. She also retested her ear drums and they weren't vibrating as well as the previous visit-- hopefully due to the cold that Ryan has been fighting (thank you daycare).  Nonetheless, something she'll continue to monitor.

On an up note, Ryan got molds of her ears taken yesterday.  The week of Thanksgiving, she'll get her pink glittered hearing aids (they didn't come in teal, otherwise we would have gone with those).  Most likely these will provide little to no stimulation for her, so says Liesl, but even if they provide a little stimulation this is helpful for her.  Additionally, these are good training wheels for her to get used to having on her ears.  The earlier she can have something to get used to, the better the implants will be for her to adjust to when she does get them.

After her hearing aids, Ryan has her MRI and CT scan on December 5th.  They will obviously have to give her general anesthesia to sedate her so that she lays very still during the scans.  They'll also most likely repeat another ABR (sedated this time) since she'll be completely out.  The next appointment will be with her surgeon on December 7th.  More to come as those dates approach.

Some pics...

                                     

                                               Two electrodes on her forehead.  

Another electrode on her ear.
She was getting her very first ear mold
so her hearing aids fit well.

The Cowboy & The Diva

Halloween was a success!  Bryce learned the simple lesson of 'cause and effect'.  In other words, 'Trick-or-Treat' means hold out your pumpkin and get a piece of candy.  He loved it.

Both Bryce and Ryan also made a trip up to work with me.  For the most part, I have not really brought my kids to work-- except when they were both infants, both times when I was on maternity leave.  I brought them around my floor around 4:30pm, when most parents had already left for the day to get home to their kids, but those who got to see them got some good entertainment.  Bryce was in his little cowboy costume, and I just put Ryan in a little outfit she had gotten as a gift.  

Here are some pics:

Oh yah, there's candy in there.

            

        Where's the candy?

Is there candy in there?

Family pic.  This is the best we got.

                              

                                           Trick-or-treating with daddy

Hanging out with mommy!

                         

The Great Indoors

Well, yes, we survived hurricane Sandy.  We were very fortunate that Monday and Tuesday were more (or less) of a vacation for us.  Besides being unable to sleep Monday night due to the branches hitting our house and the seemingly never ending howling winds, it was a nice two days of rest and relaxation-- well as much as you can get with a two year old and a 3-month old.  
It was nice being able to spend time with the kids and just hang out.  I did use my time wisely by cleaning all of Bryce's toys, and getting the laundry completed (in the even of power loss we wanted to have clean clothes)-- but the other 80% of the time was spent mainly watching TV or reading....well, mostly watching TV.  

Bryce learned how to use headphones to watch Sesame Street:

That was pretty funny watching him be entranced with Sesame Street on our headphones.

Ryan got to wear her pumpkin shirt and headband for the last time!!!  Then we worked on our tummy time until she was all pooped out.

Alert and up....getting a little tuckered out...

And, we're out...

Living a Double Life

I would just like to pontificate a bit today on the in's and out's of living a double life.  Some might refer to this as the norm in the corporate world of a working mom, but nonetheless, I must point this interesting subject out. 

At work, formality and corporate lingo rules the day.  It's all about FILO (First In Last Out), the professionalism displayed in your clothes and your emotional intelligence, and whether you had anything intelligent to say during a meeting.  At home, it's about avoiding spit up, a temper tantrum (that's Bryce's), and a kitchen that's exploding with bottles, sippy cups, and toys.  In a way, in my world the pendulum swings from one end of corporate clothes and formality to the other with multiple trips to Toys R' Us for diapers, diaper genie refills, and the bottomless pitt of wipes.

Just sharing some thoughts...that's all.

The Pumpkin Patch (& More)

Well, we made it.  To the pumpkin patch that is.  I hesitate to write more than just that statement, because really, I think that everyone got the memo. For real people, did you all have to show up at 5pm on Saturday?  
There's the issue of parking, then there is the issue of 'free doesn't really mean free', and finally, there's the issue of too many people.  Let's address each individually:

1. Parking-- Apparently, at this pumpkin patch, the motto must be, park where you want and hope you don't get a car ding.  There are really no 'spaces' per se, more like open grassy areas where you just wedge your car.
2. 'Free'-- did you know you can go to a Pumpkin Patch for free?  But, if you want to go on a hayride, play on a playground, or pet the animals, you must pay.  Don't get me wrong, it's not that big of a deal to do shell out a few bucks here and there, but it's more of the point of the matter.  Just a tad annoying.  So needless to say, we didn't do any of that-- not that I minded though-- it was a kid zoo there, so I had no problem avoiding all the germs and runny noses that were awaiting Bryce on that playground.
3. People-- too many.  Way too many.  Kinda felt like China.  Seriously.

We got a few 'free' pics:

This is about as good of a pic as we could get

This is Sean trying to get Bryce to smile.

This was the reward-- dinner at our favorite diner.

Working on eating his 'tree'.

And, in other news, we have a super sweet boy.  This was pretty funny the other day.  He was checking on Ryan for me.  Literally.  And Ryan just loved looking at her big brother.

This is what happened the other morning when I walked in.

Pretty sweet.