Christmas in TX

I've been meaning to post this for awhile, so forgive my tardiness.  We were in Houston for Christmas this year since my family lives down there-- thank goodness for warmer weather!!!  

Bryce was so excited to get his Thomas the Train.  This is exactly what he asked for while sitting on Santa's lap.  Next time, Santa's elves will be shopping on Craig's List for these types of toys.  What you see below cost his elves $140 from Toys R Us.  I mean, seriously?!?!?!

And of course, Ryan was just a cutie hanging out with gramps!!

(Note, hearing aids are in!!!!)

Bryce also loved his new Power Wheels.  How could you not? 

It was a wonderful holiday, and hopefully, I'll do a better job next year about getting xmas cards out!!!

Genetics Day

Today we were back in Wilmington for our genetics testing! In anticipation of a long appointment after I had spent about 45 minutes on the phone prior to today, this appointment was refreshingly short with the gentici Although st. the cause of hearing loss is not necessary in determining Ryan's CI candidacy, we will also be able to rule out any other associated syndromes that may be a result of her hearing loss. Really, all we hope to find is the connexion 26 mutation which can result in recessive hereditary bilateral deafness/hearing impairment. This means that Sean and I both carried this gene in some kind of alternative fashion and passed it on to Ryan.

Anyhow, more to come in the following weeks as the results from her blood test will reveal more details.  Pictured above is a very unhappy girl who had to have three people for all THREE TIMES she got her veins poked.  Ugh. 

Ryan 5 Months

Ryan girl, 

You are five whole months.  Where has the time gone?  Between managing your brother and coping with your hearing loss, I barely blinked and already you are so grown up.  So sad, I didn't even get out Christmas cards this year.  Maybe next year?  Or else, I'll do a belated card....um, maybe.

Anyway, you, are such a sweet girl.  You are a snuggle bug (completely unlike your brother).  You love to be held, and you love to snuggle.  You will do this with pretty much anyone these days.  Your biggest stride most recently was standing up and bearing weight for a significant amount of time on your legs.  We put you in the exersaucer (name of jumpy, bouncy thingy)-- and you are loving it.  You play with all the little toys on it.  Speaking of little toys, you have two favorites:  Sophie and Abby.  Sophie is your giraffe, pictured below, and Abby is your Sesame Street doll.  You picked up Abby at the hospital, and she comes with you on all your trips and all your appointments.  You are comforted by Abby and her 'twinkle think' mantra.

You, at five months, are quite the frequent flier.  You have already made three roundtrips to and from TX (twice) and Omaha.  Good thing you love your Uggs-- all three pairs (thanks Grammy K)-- because they keep you nice and warm on your trips.  Comparatively to your brother, you are not a great sleeper-- you love love love being awake and making sure you're not missing a thing.  I do think partly because you can't hear anything that you compensate with your visual behavior.  You pay attention to everything (it's almost annoying).  If the TV is on and I am nursing you, you ALWAYS turn your head about every 15 seconds to check out what we are watching on TV.  If big brother is watching Sesame Street, you zone to the TV more than he does.  You love the little people and all the lights.

You love your butterflies.  Your mobile is butterflies, you love this. But, you also have a little turtle that displays colored stars in the dark-- this scares you.  I'm not sure why, but you whine every time that thing is on...big brother loves it.  He took it from you.  (This is common-- big brother taking things that are yours-- we are working on this.)

You are starting to grow into your cheeks.  (thank goodness as they were a little overwhelming there for awhile).  You do have the biggest cheeks we have ever seen.  They are really fun see you with such big cheeks-- it's funny.

Mom and dad loathe your hearing aids.  'Nough said.  This is why they don't make it into many pics.  You are supposed to wear them all the time, but sigh, they are hard to keep them in.  We are looking forward to nine months for your CI surgery.  We can't wait for you to hear us and catch up with your speech and language development.  

Much love Ryan!

 

                 Grammy Krenz and Ryan's new doll!                                 Uncle Rob & Auntie Sammy!!!

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.