Set Backs

Well, what started out to be a fantastic week took a 180 degree sharp turn by its end.  We started out the week on Monday with Ryan's official 6-month check up at the pediatrician.  Healthy baby girl statistics netted out at 10% for height and 30% weight.  Again, I think those cheeks make up a good portion of that weight.  She had all her little vaccinations and she only let out one yelp, and a tear was shed, and that was about it.  Tough girl.

Wednesday, we went down to A.I. Dupont in Wilmington for two reasons.  First, we picked out her cochlear implant manufacturer and afterwards, we went over to the research facility to do another (unseated) ABR.  After a very thorough review of all three devices (thank you Leisl!) we are very happy to report that Sean and I chose Advanced Bionics as our manufacturer of choice for Ryan, for many reasons.  We are very excited to be partnering with their team.
After this, Ryan and I went over to the Research Center across the street.  They wanted to do another ABR with and without her hearing aids.  They basically wanted to get a baseline of brain measurement prior to CI implantation.  This way, after the CIs, she'll have a follow-up ABR, which will (should) display drastic differences in brain response.  I will say, that it was only slightly disappointing that there was still no brain activity even with the hearing aids on.  (sigh.  Please hurry bionic ears.)
We left the hospital that day with a planned date of March 4th for Ryan's surgery.

Unfortunately, (here's the 180 degree turn) Thursday morning, I received a phone call where I found out Ryan's surgery had been 'bumped.'  I won't get into the details, except to say that my heart immediately sank.  They have rescheduled her surgery (supposedly) for March 14 or 15th, but we have not been able to get confirmation on that yet.  We are so disappointed and just keep hoping that things will happen quickly for Ryan.  Additionally, it's not like Sean and I don't have careers.  It's so hard planning things for the both of us between traveling and the corporate world, it's tough.  I really don't think people at the hospital understand that fact, but I guess we will have to deal.

Say a little prayer for us and Ryan if you are reading!

Short Flicks

Some movies this week--

Bryce practicing his manners.  Then watch the video again and notice baby sister in the background.

Ryan talking/whining with daddy in her Juicy outfit from Grammy Krenz.

Out of Town

This week was interesting.  It was my first time out of town for more than one night.  I wouldn't say it was interesting because Sean was able to run the house the way he wanted to run the house, nor because I was receiving pics of Bryce and Ryan in sooooo uncoordinated outfits.  Nope, it was interesting for me because I came to the rationalization that if I can pump on a plane, I can do anything.  I swear, the things we do for our children.  I know everyone has their own story, but let me tell you just a few fun facts about the last four days.  And, keep in the back of your mind that each day I was either presenting in front of 60 people or in serious meetings where I wear my business 'mask'.  (Actually, my husband and my brothers would most likely argue that, my business 'mask' is probably less of a mask and more of who I actually am.)

Questions to think about:
- Did you ever see a man's face go to the bright color of red when he thinks he has to take out all the pieces in my pump bag just to re-run them through security again?  (This TSA agent could not have been older than 22.)
- Did you ever know that apparently, it is a big deal to get a fridge in your hotel room?  Um, yes, apparently.  Even if you specifically state that you are a nursing mother, the eye roll is just unreal.
- Did you know that one can pump over a gallon of milk in less than 4 days?  Yup.  And pumping on a plane is a new adventure.  'Nough said.
- Did you know that bringing back milk on a plane, in a cooler, with ice packs in a checked bag is a pain in the A$$?  And, BTW, since milk is a liquid, it does leak...yes, it does-- especially when you don't have a good top to the gallon.

Anyhow, I just thought that it would be fun to reenact my week.  On a seperate note, we are officially on for Ryan's surgery on March 4th.  Next week we pick out a manufacturer for her CIs.  That's a whole other blog in itself.

We are T-minus 17 days until Ryan's surgery.  Exciting and scary.

6 Months!!!

Happy 6-Months Ryan girl!

You turned 6-months on February 1st, 2013.

I really don't think you grew all that much between five and six months, although, given your diaper size increase to 3, I'm thinking at least that little bottom grew.

Your face is still 110% cheeks.  You really aren't all that chunky, but you certainly look it because of your cheeks!  We haven't been to the doctor yet for your 6-month appointment for weight and height, but don't worry, you will make it there in a couple of weeks.

You are at a tough spot for clothing.  All your 3-6 month still fits, but most things are a little short or a little tight.  All your clothing that is labeled 6-12 months overwhelms you.  That fact will make for interesting 6-month professional pictures this weekend.  (that's a whole other story which involves one of my favorite brands Burberry-- maybe for another post.)

We are getting more consistent with wearing your hearing aids this month.  Most likely it's because they actually fit you now.  Once the molds for your ears were fixed there really hasn't been much hassle with them.  You still haven't managed to pull them out except one time a few weeks ago.  Your friends at school love to pull them out though-- your teachers are definitely entertained by this.  

Your brother loves you so much.  He wants to play with you and cannot wait for you to be bigger.  He's such a great helper for you, and sometimes gets jealous of you if mommy or daddy is reading to you and not him.

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It's a Date!!!!!

Last Monday we spent from 1pm to 5pm at Nemours in Wilmington.

1pm:  Audiology testing with hearing aids

• Never underestimate the knowledge, patience, and detail-focus of a pediatric audiologist.  Among a million other things, they are trained to know whether or not a child of 6-months in age can hear based on behavioral observations.  Ryan spent an hour in the 'audiology booth' sitting on my lap whereby sounds in varied pitch and frequency were tested.  The audiologist knows whether Ryan responded to sounds by watching her facial expressions and cues.  A few things that are noticeable when Ryan hears is her blinking or her binky sucking changes, or most obvious she turns her head to look for the sound.  
• Of no surprise, Ryan failed miserably, but I will say it was pretty entertaining.  I'm sure we'll be in the booth or something similar many times in the future
• Thank goodness Ryan was a very happy baby all day, otherwise this could have been miserable for her, for us, and for the audiologist

2:45pm:  Optometry

• Eyes dilated.  Ryan already has two up on me now-- she's had a MRI and her eyes dilated-- two things I've never experienced in my lifetime.  She's a busy baby.  
• Everything went very well.  She has perfectly normal eyes and vision, ruling out any syndromes that could be associated with vision

4pm:  Surgeon

• After a rich discussion, our surgeon agreed to do Ryan's surgery as early as safely possible
• This is still tentative, but most likely she will officially have cochlear implants on March 4th!  Yay!!!!  7 months!

Needless to say, Sean and I are very excited about this surgery and are looking forward to beginning her life with her ears.   Can't wait.  Now we just need to make a final decision on which manufacturer to use for her implants.

Ryan getting her eyes checked.  Girl had her eyes dilated!

Hodge Podge

Just a hodge podge of stuff that I'm posting tonight.  Enjoying the little things these days...

Ryan is really doing a great job at sitting up on her own.  This short video was taken a couple weeks ago.  Please note that hearing aids are in!  Go mom!

Here's Bryce and his favorite car.  He has played on it since he was 19 months.  The horn doesn't even work anymore.  And guess who knows how to sit on Bryce's favorite car now?!?!

And these are two of the cutest kiddos ever.  Note that Bryce is chewing his gummies and I sure hope that Ryan doesn't look like she has only a mow-hawk for much longer.  Sigh.

Play Date!!

At school (formerly known as daycare) Bryce has a friend named Connor.  Connor and him have been in the same class since they were 10 weeks old.  Connor is 7 days older than Bryce.  

Connor has a sister named Taylor.  Taylor just turned 6 months last week-- she's about 12 days older than Ryan.  

So, us parents thought it would be fun to get together!!  We went over to Connor's house in Phoenixville.  I tried to just grab a pic, and those boys are crazy!!  I couldn't keep them still.  In these three pics below they are trying to hug!

I didn't get any pic of the princesses...my bad.  Next time!

Do You Hear What I Hear?

This is our latest experiment at home that our Early Intervention specialist taught us to do.  It helps us to know if Ryan is responding to noise-- and it's a fun game.  

Here's how it works:  Bryce sits next to me and distracts Ryan by waiving to her while I video tape.  Dad stands behind Ryan and begins to make noise-- Ryan will turn her head if she hears it (or so they say.)  In the videos below, we think she hears the noise, but can't help but think that she might just see the movement of the toy!!

I will say it's a pretty entertaining game and if she can hear this, even a little bit, then these hearing aids are all worth while.  Even though she can't hear speech or normal sounds, we know that if she can hear with these hearing aids on then her brain is working on keeping that auditory nerve in good function.  (Otherwise, if you don't use it, you lose it....this is another reason why early implantation is key.)

We have an official audiology sound test with hearing aids in about a week.  So, I'm sure their analysis will be more formal than this one!!!

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.