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!