The Weekend

As the snow days continue, (seriously?!?!), Bryce and daddy got out to make a snowman!  Thanks Grammy Gibbons for giving us, what is referred to as, 'The Snowman Kit'.  This is the first time we have used it since we received it a couple years ago.  And it's well worth it, just for the smile we get on Bryce's face every time we pull into the driveway.  Of note, Bryce was crying while trying to help daddy since his hands were so cold…and notice, he has sneakers on not boots.  Must be time to invest in some snow gear.  Sledding anyone?

And, Bryce has really started to include Ryan in his activities, and his little 3-year old, manipulative activities.  (That's another blog.)  Below, we got a kick out of them giving each other hugs.  So cute!

 And, just a side note for my CI friends...during most of this weekend for the first time, we had Ryan in her new Naida's.  They are definitely lighter than her Neptunes, but the biggest (annoying) factor which keeps us from using them more consistently is that there is no audible signal to let us parents know when the microphone is not on her head.  She's obviously is not old enough to put them on her head herself (I mean we are still working on holding and eating with a spoon!)….so, this fact keeps us from using them more often, and even keeps us from putting them on her for school.  Once she grows up a little more, we'll definitely have her in the lighter ones, but for now, we are primarily going to stick to our trusty Neptunes, which we have been very happy with.

Another exciting and fun fact is that our Early Intervention person, Carol, has got us all excited because they have an extra FM system they are going to loan the daycare.  This will enable the teachers to have an amplified voice for Ryan, which obviously makes it easier for her to hear…very exciting times these days….(Never thought I would get excited about a FM system!?!?)

One more crazy busy at work for me, and then we are all on vacation for nearly two weeks!  Yay!  Chill-ax time for mommy!  (And Daddy!)

Snow Days

So, today is a snow day.  Sigh.  Oh the joy of being at home with the kids.  The two pics below depict what they think of the situation as well.  

Anyway, we had an adventure yesterday. Ryan had a 104.4 temperature!!!!  Yikes!  We made a trip to the pediatrician followed by a few phone calls to and from our ENT / Audiology department at the hospital.  Very long story short, they put her on Augmentin and got her all signed up for ear tube surgery next week.  Lucky her.

I will say, that if any (still) reads these posts, and lives around this area, send your kids to A.I. Dupont.  Especially if they need audiology or ENT care.  Those physicians are absolutely top notch.  I spoke with my two favorite Audiologists yesterday and also one of the doctor's Physicians Assistant.  They are all familiar with Ryan and wanted to ensure we were doing the best thing possible for her.

Anyhow, today was going to be a Ryan and mommy day, since Sean is out of town, but because of this crazy snow weather I'm playing the role of single mama today.  I seriously have all the respect in the world for all the stay at home moms.  I really do not know how you do this, and have the patience to do this everyday.

Also, we hope you all are having a great Christmas season… is Ryan in her Christmas sweater.  She moves so fast, I couldn't get a clear pic of her!

Hear to Learn

Check out this link at the Huffington Post.  Susan is a mom to Lily, who wears cochlear implants.  What a great way to help our children listen to learn.  This should be happening in all classrooms.

8 Years

Well, this week, we celebrated eight years of marriage.

That means we have known and been together for just over 10 years!  Time flies!  Sean got me some beautiful flowers.

Ryan is doing really great, she's still a chunk-er, and smelled the roses.

Video Upload from last post

This is the video I referenced from last time…

Walking and Talking!!

We have a great time showing off our walking and talking skills…  This video was taken 10 days ago, when Ryan was still 14 months.  She has been hearing the world for officially 5 months at this point in the video.
Okay…video is not uploading…I'll try another time...


And, of course on a very important note we had a fantastic halloween as a Mermaid and Captain America!!  (queue the music).  Ryan is a pro at trick-or-treating….clearly the girl never misses a meal.  And the process of walking to the door, taking a piece of candy and putting into her bucket--seemed like she had been practicing it all year long.  Bryce was hilarious, he would run and pose, and run and pose-- he was so into his character.  What a treat-- we hope all our friends had a wonderful halloween as well.

It's Genetic!!!!! TMPRSS3

Wow, okay, so there is so much to update on, and I don't even know where to begin. Let's start with the most important, family-- we are all good.  Really good.  Bryce is a terror of a 3-yr old, and Ryan, I swear is on the verge of distinguishable first words.  Her favorite of the moment is mamamamama... however, she also loves her animal sounds, particularly the giraffe.  (Yes, in speech therapy, giraffes make sounds...I didn't know that either.)

Second, news flash...Ryan's hearing loss is genetic.  And for anyone who is familiar, it is not the most common gene associated with hearing loss, the Connexion 26.  After this initial test confirmed that Ryan had hearing loss not due to genetic rationale, our geneticist asked us if we would like to do further testing on a whole host of genes that are associated with hearing loss.  She forewarned us that many of the genes that we were testing also coincided with other 'syndromes' that could be developed in addition to Ryan's hearing loss.  Of course, we said yes, as we really wanted to know anything we could know about anything related to Ryan's reason for hearing loss.

This test took place after her CI surgery-- they drew blood while she was under.  Well, hello, fast forward, 5 months later (wow, it's been five plus months since surgery...) we got an answer, as follows:  Two mutations (variations from "normal") were identified for Ryan in a gene called TMPRSS3. This is likely to be the cause of her hearing loss. Mutations in this gene are associated with non-syndromic sensorineural hearing loss. This means that her hearing loss is NOT due to an underlying syndrome. We do NOT expect her to have additional health problems related to the hearing loss.

Hearing loss due to mutations in TMPRSS3 is inherited in an autosomal recessive pattern. If we assume that you and Ryan's father each have one of the two mutations that Ryan has, the chance for you to have another child with hearing loss is 1 in 4, or 25%. This chance is the same with each pregnancy. Testing can be done to confirm that each of you have one of these mutations. Testing can also be done in a future pregnancy if that is something you would be interested in.

As you can tell, I'm pretty excited. It totally gives me some closure, I'll just leave it at that.  That's all for now..so much to do...we are moving, just 2 miles away, but man oh man, I will be glad when it's over.

Birthday Party

Ryan turned one year, exactly 1 month ago...pics are a bit late.

She is growing by leaps and bounds, and her babbling is amazing.  She babbles dadadada and mamama.  She knows many words including her name, no, yes, food, milk, Bryce, mommy & daddy.  She probably actually knows more than just those, but those are the ones I am confident she knows well.

She had another appointment with our audiologist...it's amazing how Ryan went from zero response to a confident response to sound.  We tweaked her mapping settings (ignore my incorrect terminology), and now, I cannot even explain how much more she is saying, just in the last 5 days.  She just exploded with babbling all different noises.  So great.

Girl has what I would call a serious no-nonsense attitude.  Do not mess with her... and at the same time, she is very stubborn.  She doesn't walk pretty much because she doesn't feel like it.  She cruises everywhere, she holds one hand and walks, and yet, she would rather be carried.  Sigh.  

Anyway, enjoy the pics!

One Year

12 Months!

Already!  Some days I cannot even fathom how fast this year has gone, and yet there are some days in which I reflect upon, and think that the one-year mark looked so dauntingly far away.  

Ryan is doing so well.  So many sounds, so many different noises.  She has definitely progressed to at least that 7-month point, before the first surgery took place.  Actually, I would say she is further because I know that she is comprehending much of what we are saying...

Anyhow, on to the normal stuff.  We haven't had the one year check-up yet, but I can confidently say that we are still a chunk.  Case in point, I gave her pasta with cheese and bread tonight.  She had probably triple the amount of Bryce.  I mean, this girl wants to eat.  And, it's not like we feed her cookies and junk food, she just loves her food.  If it looks like food, it goes in her mouth...that includes the dog food.  (another story...)

She is at least 20 pounds, and she is still pretty tiny (short)- at least I think.  I don't remember Bryce being so little still at his first birthday.  He was already this little man by then.  Also, Ryan is not quite walking yet-- we are on the verge, but I'm guessing we'll pass the 13th month point before that begins.

Ryan's favorite part of the day is the morning, she just crawls all over upstairs, and is just into everything...sigh.  She adores her brother, and enjoys playing with all of his cars.  (He's not a huge fan of this...but he does try to share, sometimes.)  

When we are happy, we love to be held.  Correction.  We like to be held all the time.  We whine a lot.  Then we get picked up and the world is our oyster.  Sigh.  Bryce was not like this.  He was the exact opposite.  Ryan, has no problem showing us how annoyed she is, or how happy she is.  Her moods are very evident.  That said, she's very happy most of the time, but when she isn't-- look out.

We are finally starting to get some hair-- it's kind of a strawberry blonde, emphasis on the blonde.  Only the tiny bows still work for her though.  

That's all for now!  Happy Birthday girlie!

11-Months

So, yes.  Ryan is 11-months.

I cannot believe she is 11-months.  As slow as some of these days, weeks, and months have been in disbelief, denial, and anticipation, I cannot believe we are here.  This is our baby girl, our new normal, with her amazing cochlear implants.

Before 11-months ago, I had no idea what 'CI's were.  And before we knew it, we were thrown into this crazy world of hearing loss, early intervention, audiology appointments, surgeons, and speech therapists.  Oh, and that's alongside managing her crazy 2-year old brother.

Thank goodness we've made it here, as I don't think I could take anymore surprises like this one.  I'm so glad that Sean and I pretty much put our foot on the gas in terms of getting her to hearing as quickly as possible.  With help from all of her wonderful specialists and doctors, she will persevere.  If this is the worst that can happen, we'll consider ourselves so fortunate.  (I definitely didn't think that way the day she was referred to the audiologist because she repeatedly failed her newborn hearing tests.)

In regard our baby's development.  We finally crossed some huge milestones in the last couple of weeks-- pulling herself up and crawling are two things that have become recent achievements.  We are also hearing her vocalize so much more.  Amazing how far she has come in six weeks!

Also, she always sleeps through the night, her hero remains her brother; and oh yah, we are such a diva.  Child always, and I mean always wants to be picked up.  And not by just anyone, nope.  She's very particular.  Sigh.  She likes to be in the middle of everything.  Although she is pretty laid back in terms of just an easy going baby, she's very particular about ensuring that she's not forgotten or left out. (Of course, that means putting her in the middle of the room around all of us, not just playing with her toys 2 feet away from me.  I tell ya, Diva Ryan.

Less than 3 weeks from her official 1st birthday.  We are planning a small celebration-- of course for her, but also for the fact that we, the Reedy's survived this year and are looking forward to living our new normal.