Thankful ramblings

Some days can be long and stressful and I feel like I'm swimming against the tide.  I've had a couple of those days recently but I'm thankful today was not one of those days!  

I'm thankful for:

• Last night Chris went out with a friend and we had a girls night at the house.  Easy dinner followed by girl time in the kitchen when Julia decided to color at the table while I cleaned up the mess.  Emma had her talker sitting on the table and she said she wanted to color.  It was great to hear because I was at the sink when she said color several times.  I taped a page of paper to the table, gave her a crayon and she scribbled a bit before dropping the crayon.  To this minute I still have NO idea where that crayon is....funny how Emma has a way of hiding things on me.  Then she asked to read a book so Julia read one to us.  It was a fun and easy night.  And Emma initiated all the talking on Evie on her own without any prompting!  That is a big accomplishment.  She then went on to cry for about 2 hours at bedtime which brought me back to Earth.....she keeps us on our toes like that!
• Julia is coming along really well with her reading.  She is reading longer books and learning more and more words.  I'm so proud of all the effort she is putting into learning to read at school and then coming home and looking to read 2 or more books again at bedtime.  I love listening to her read in her little girl voice.  I wish I could bottle that little voice because it sure is music to my soul.  And the cuddling that occurs with the book reading makes my heart hum!
• Julia continues to excel at imaginative play.  I was cleaning the play room today and looking for things she doesn't need anymore but I quickly realized she plays with pretty much everything we have.  She is so creative on pulling things from various places - like animals from the farm, her Barbies, and her play food to create a picnic lunch for the barbies in the woods - and using them together.  I love listening to her play with her friends and learning how they are really put a lot of thought and effort into their play time.  
• Emma's been blinking a lot on one of her CI programs lately so we needed to go in for a "tune up."  Since she doesn't talk yet her school hearing team worked with us on Friday to show her how hitting a button on her iPad that I programmed to say "I hear you" would let us know she hears the sound presented in the sound booth.  She is a quick study and figured it out very quickly.  She also giggled the entire 45 minutes.  You would have thought we were on a roller coaster or the tilt a whirl with all the giggles she had!  I'm glad she didn't consider it work and she was able to give us a pretty good read for an audiogram.  Today she had her real mapping session at the hospital and we brought in her iPad.  She did really well again and used the iPad for a good portion of the testing until she decided she was done and laid her head down on it.  Game over ;-)  We got a really good map for both her right and left sides, which is wonderful since she usually needs two different appointments - one for her right hear then another appointment another week for her left ear - due to her fatigue in the booth.  Her audiogram was similar to the one we got on Friday so I feel very confident that it's a good one.  We kept her same map because she is hearing really well but changed the sensitivity of the programs to see what will work best for her without causing the eye blink.  The program we left on (P3) worked well for the rest of today so we'll continue to monitor her reaction.  I'm constantly in awe of how far Emma is coming in her hearing and cooperation in the sound booth.  I remember the early days when I wanted to cry after each mapping session and now they are going really well.  So proud of my girl!

• We ran into a few of Emma's fans while at the hospital.  It was great catching up with them!  If you have to take a child to the hospital the one she goes to is so personal that it takes a bit of the sting out of it.  How lucky we are to have people go out of their way to come over and get caught up on Emma and give her hugs and ask her questions directly.  Today she used her iPad with the My First AAC app while at the hospital (there is no way I was brining her iPad and Evie!!!!) and said Hello and Goodbye and Nice to Meet You to so many people.  It's the first time she has used that so frequently and intentionally.  I liked it.  Maybe all our work with her is paying off.
• Tonight Emma said Mommy (twice!) on Evie for the first time ever!  She says Daddy, Julia and Finnegan all the time.  Never Mommy.  Tonight at dinner she decided she wanted Mommy to feed her.  And she got just what she wanted since she asked!!!!!!  She said a lot tonight and I took a photo of the screen to capture it because it made me so thankful that she is starting to communicate with us.  There is along road ahead of her/us, but at least we are on that road and making our way down it.  Slow and steady wins the race - I just have to keep reminding myself of that.

Less than exciting post on insurance

Since this post is on a dreadfully boring topic I figured it was best to lead with a cute photo.  Emma sure does love acting like a beach bum!  With all the hard work she puts in all year she sure does deserve her fun in the sun.

Vacation is over and it's back to reality.  I've been spending a lot of time this week following up on medical stuff - trying to find out when we will get Emma's talker and if/when I'll be able to get an aide at home a few hours a week to help with Emma so I can work at the position I accepted.

Following up on insurance, therapy and school stuff for Emma is a pretty normal daily activity for me.  It's not a particular task that I enjoy but I learned early on that if you don't call and follow-up on items constantly then someone usually drops the ball.  You would think that something is getting processed only to find out a couple of months later that, no, they have no record of {xyz}.  During my calls I found out the insurance company has no record of a request for a home aide so I've added calling the pediatrician to find out the status of the letter of medical necessity to my list of calls.  I also found out Prentke Romich (PRC) - the company that makes the talker we are ordering - did not receive the approval letter {that we received over a week ago} from Emma's insurance company so I'll get them a copy of it.  And then I'll call them again to make sure they received the fax of our approval letter and find out where they are with sending out for approval from her secondary insurance since her secondary told me they have no record of a talker request.  It's sort of like a never ending do loop with insurance.  I'm so incredibly thankful we have insurance, though, that I'll take the extra work required to push things through.  I just can't help but thinking that they sure do create a lot of extra work!

Emma has been moving around a bit more.  Rolling here and there, working on crawling and generally being active and making it hard to keep her Cochlear Implants on her head!  Hooray for that!  The downside is that she is going through some excess parts just as the warranty on the CIs is getting close to expiration.  I'm keeping my fingers crossed she gets most of it out of her system before December when the warranty is up because new parts will have to go through insurance (ugh!) after the warranty period.  This week she (we?) managed to lose her ear hook and ear mold during a walk.  I'm so thankful that the CI stayed on her head, though, as that is the big dollar item!  We stopped at her hospital today to see if they could take some ear impressions for new ear molds and they fit her in.  I really love her hospital!  They always treat us like VIPs and fit Emma in even when we have no appointment and they are super busy.  We are so thankful to work with such a flexible team that really goes above and beyond to ensure Emma's needs are met.

In other shocking news, I made a couple of appointments for myself this week!  I need to follow-up on my fractured ankle and have a long overdue eye exam so I can get new contacts.  My eyes will be thrilled when I come up with a brand new pair of contact lenses after wearing these old ones way longer than suggested.

Eye Gaze device trial: Tobii C15 with CEye

We've been working on a method of communication with Emma for a loooooong time now!  We have a variety of approaches - picture cards, hand gestures, iPad, looking at things, etc.  Most are initiated by someone other than Emma.  I've been looking for a way that Emma can initiate conversations, tell us all the good things going on in her head, and let us in on all her jokes because this girl is usually smiling and laughing!

This year at school we have a huge focus on her expressive communication.  Emma started using some scanning programs on a Dynavox and took to it pretty quickly.  I talked about it in this post.  Some drawback to this method are that it takes a long time to do the scanning and there are some challenges because of Emma's double whammy of hearing loss and poor motor control.  I have always thought that an eye gaze system would be a good option for Emma.  Last year we had a trial with the Dynavox with Eyemax eye gaze communication device and it was a disaster.  Make that a DISASTER.  I had high hopes going into the trial and came out feeling pretty defeated.  While there are many people out that that use and love the Dynavox eye system, it was not a good fit for Emma and so we kept plugging along with our various communication approaches.

I belong to a yahoo group of Moms with children with CP and a few of the children are doing quite well with the eye gaze systems so I didn't give up on the idea of eye gaze for Emma.  There were good parent reviews on the Tobii CEye and the PRC Echo2 devices so I talked with her SLP at school about wanting to try the eye gaze devices again.  Yesterday, the sales rep for the Tobii came to school for Emma to trial the Tobii CEye device.

I was reserved about the trial.  I remembered how excited I was for the Dynavox trial and I didn't want to be disappointed again like I was before.  I decided to go in with an open mind and see what Emma wanted to do.  No pressure on her or me.  Right off the bat the sales rep. impressed me.  He spoke right to Emma, gave her his business card first and then handed them out to the rest of us, asked her most of the questions.  Emma took to him immediately.  I'm sorry to say that it's all too often that people don't include her in the discussions just because she can't speak.  This man respected her as a person and knew that she was the most important person in that room for the trial.  It was very refreshing!

Emma tested the Tobii C15 and the C12 device.  The Tobii C-Series family of devices are "portable communication aids for text and symbol based communication, computer access and environmental control.  They are easy to set up and use, have batteries that can be replaced without having to shut down, feature side caps that can be changed and much more." (all items in quotes on this post are from the Tobii product literature)  The C15 device has a 15" screen, the C12 device has a 12" screen.  That is the main difference between the two.  Both were outfitted with the Tobii CEye, an "optional eye control module for the Tobii C12 and C15.  Accurate and precise tracking, works with most users, largest trackbox on the market."

What is an eye gaze device?  "Eye control is an alternative and complementary input method to using a mouse and a keyboard.  By looking at a screen you control the mouse and you click by blinking, dwelling (staring at the screen for a certain length of time) or using a switch."  The computer has a touch screen so you could also access it with your hands and we also tested where Emma would use her eyes to pick a box and then we would click the switch to select that box.

I have to say that it was super easy to calibrate the device for Emma's eyes.  It took about a minute!  I was very impressed with the Tobii for that reason alone.  After testing out several options, it seemed that Emma did the best with her eye gaze and a dwell time of 1.2 seconds.  We navigated through several screens.  There was a screen where she could pick a book she wanted to read and then it opened up and she could select the pages to have them read out loud.  She did great with that!  Here is a small video of her and the books that I took the second time she chose to look at books.  We had been working on the books for a while so she was getting a bit tired when I finally realized I should take some video.  The volume is low because she previously was playing music with the machine and her eye gaze and the volume was super high for that program so we had to turn it down.



We also had a screen where it looked like a storybook page and a child in a wheelchair was sitting at a table with his friends.  There were bubbles on the table and presents around and Emma could use her eyes to select items.  When she selected the bubbles with her eyes, a grouping of options filled the outside perimeter of the screen.  She then "played" with her eye and selected a few of the options.  One was "blow lots of bubbles", so her SLP blew bubbles for real.  Then she chose "let me blow bubbles" so we let her try and blow them.  She did a few other things, such as comment "this is fun", on this page and it really seemed to capture her interest.  It was a nice way to interact and I could see this as a great tool for actual activities in the classroom where we take photos of the kids and put them in the scene and Emma could call out her friends names, tell them to blow bubbles, etc.

Another thing she did during the trial was look at some flash cards.  We would ask her where is the *animal* and she would look at the screen and use her eyes to select it and then the device would speak the name.  We only had one card up at a time, but you could put several up there and ask her to select matching items, odd one out, etc.  I think she would have a lot of fun with this!  Here is a little video of her with the flash cards, again she was a bit tired when I pulled out the video camera but she was still participating!  The blue dot is what her eyes are looking at, in case you are wondering how to tell where she is looking.



We also tested out a fun little dice rolling page.  It is a random dice rolling generator we could use for things like playing a board game as a family.  Emma could use her eyes to roll the dice and then the dice outcome would pop up on her screen and we could then move her piece.  We could likely even put a command on that page that says "Can you move my piece?" or "Your turn" or "My turn".  I can see some really good options for this page!  The nice thing about this, too, is that we could use our fingers to select the dice roller and just use the device to play without needing actual dice.  It would let us interact with Emma a bit more and wouldn't put her as the odd one out.

Emma was really on a roll for this trial and so we put up a music page.  Emma could pick between different music and turn it on to play.  The rep then danced (see, I told you he related well to Emma!) until the music halted and she had to select more music to play for him to dance again.  He suggested this was a good page to play freeze dance with her classmates.  Emma seemed to really like this page, and it was a bit similar to Simon Says that I programmed onto her iPad that we would play sometimes.  It just seemed so much easier for Emma to access the screen with her eyes than accessing it with her hands.

The trial lasted for about 1.5 hours.  Emma was distracted for part of that time, but not as much as I would have expected.  I was happy to see that she was interested in the activities we were doing on the screen with her and she attended to them for a long period of time!  After all, 1.5 hours is a long time for a 4 year old to pay attention to something.  It's also a long time for adults, but we were all so into the trial I didn't notice the time going by.  Emma did so well that it was wonderful watching it all unfold.

So, where do we go from here?  The rep. suggested we rent the device for a month through insurance instead of asking them to pay for the device right away.  It is hard to get these devices paid for through insurance and he said there is usually better acceptance if insurance does a month's rental first.  The monthly rental is very high, and the device price is even higher.  I looked online and found our state's AT lending library has the older version of the device Emma tested available for an 8 week loan period.  I think we might want to start with that while we get the ball rolling with insurance.  I also think we might want to test the ECO2 device to make sure we are ordering the best one for Emma.  Insurance won't pay for another one for a long, long time so we need to make sure we order the best device for Emma.

Once again I'm excited about the possibilities for Emma's expressive communication.  I always thought her CIs would mean that she would talk, but maybe her way of talking will be different than I expected.  Maybe she will talk with a computer.  I am at a place right now where having her talk, in any way possible, is exciting to me.  I am excited for her, excited for her future.  I still remain positive that Emma will use her voice one day for communication, but until that happens we are pursuing other options and so far the eye gaze device we trialed yesterday seemed like the best option.  The future seems very bright, indeed!

Preschool - One month recap

The past month has gone by so quickly that it's hard for me to believe that Emma is wrapping up her first month in her preschool.  Emma attends school from 8:30am - 11:15am Monday through Friday and this is new for both of us.  We are not accustomed to being apart and I'm happy to say that we are both mostly adjusted to the change in our routine.  It requires an early rise time and neither of us are morning gals so I'm happy that Chris is around in the morning to make sure that we are up and about at the proper time.  Our routine is pretty streamlined at this point with:  time spent on the potty, drinking a breakfast smoothie, getting dressed and AFOs on, double checking to make sure her backpack is all set, and packing a snack and drink.  School is at the other end of our county so I drive Emma in and have the bus drop her home.

Emma settled into preschool the first week without any issues and that could be because I stayed with her most days.  She started to cry at drop-off during the second and part of the third week.  It was the screaming sobbing cry that makes me want to run back and take her home with me.  She knows when to pull out that cry and that it rips my heart to shreds.  And, no, she wasn't laughing and smiling a few minutes later.  I even had a couple of calls from her therapists letting me know how unhappy she was and hoping it wasn't them.  Sigh.  I - umm, I mean we - toughed out the 6 days of sobbing at drop off and they were replaced by smiles on day 7.  Oh Happy Day!!!!

Emma has a communication notebook that we send back and forth to school.  Each day the teacher adds a sheet of paper with the following sections:  play time, circle time, small groups, snack time, therapy, other, notes/comments.  In each section there is a set of PECS symbols and she circles the items they worked with in each section.  This is really nice because I can look at the symbols and go over Emma's day with her.  There is also a sheet that has the equipment along with an entry for the time spent in the equipment.  One day I requested information on what equipment she used and how long she was in it so I know how to plan the equipment we use the rest of the day.  The very next day this sheet was added to the communication notebook.  Fantastic!  I also asked about the potty and her snack and they added another sheet that updates me on them daily.  Additionally, on the days that Emma has therapy the therapist includes an update in the notebook so I know what they did in therapy that day.  I feel very well informed of what is happening at school and this makes it easier to part with my girl every day.

Emma has a lot of goals on her IEP.  They are not easy goals and I'm happy that the team set the bar pretty high.  I'm even happier to report that after only a month of school Emma is rising to the challenge.  My focus for Emma is communication.  Yes, we have goals for PT and OT, but I'm not as focused on them at this moment as I am on getting a reliable, usable mode of communication for Emma.  The team is spending a lot of time reinforcing communication in every interaction with Emma and this is working great.  Central to her communication is having her CIs fully operational so first thing each morning the hearing teacher checks her implants.  Emma is starting to say some sounds during the hearing check - this is a huge accomplishment because Emma usually reserves this for special occasions only.  There is no doubt in any of our minds that Emma is hearing well and using her hearing quite effectively and that her real challenge is expressive (not receptive) communication.

The speech language therapist (SLP) is working with Emma individually, in the classroom setting, and then with the team to instruct them on how to carry-over communication.  Historically, Emma is non-participatory in many of her speech sessions.  It's just very hard for her to communicate vocally or physically and there has to be a big payoff for her to participate.  This SLP gets it and is having success with Emma participating.  She wants to move towards a scanning communication system initially and then test out some eye gaze systems.

Many scanning systems only have a 2 second delay before they move to the next item.  We think this might not be long enough for Emma to hear it, process the information through her implants, and then get her motor plan together enough to hit the switch.  Two seconds really isn't that long when you take Emma's hearing and physical challenges into account.  So, her SLP tested out a head switch with Emma and she was able to use it quickly without much training.  Her idea is that Emma could use two switches for a scanning communication method - the head switch to go from item to item and a hand switch to select the item.  This would give Emma as much or little time as she needs to say what she wants.  I was skeptical at first because it is already hard to keep Emma's CIs on her head without adding a head switch but it seems to be working well and isn't knocking off her CIs.

This week the SLP entered the following information in her communication notebook:

• Tuesday (her pull out for speech day):  Emma had a good day today!  We started working with 2 switches (on the computer) and she did great :-)  Each switch has a different function - example:  one switch adds one more block to the tower and the second switch knocks down the tower.  
• Thursday (SLP pushes into the classroom day):  We used 2 switches again today in the classroom - much more distracted than when in my therapy room, but she still did well :-)  Lots of choice making with 2 pictures also.  

This Mommy is over the moon that Emma is not only participating in speech, but doing so in both a one-on-one and classroom setting!  The gains she has made in the last month are more than her entire first year of preschool at the old school.

I'm filled with hope for Emma and for us!  Our decision to move was good for so many reasons and I'm so happy that Emma is in a program that is not only meeting her needs but also providing academic challenges that Emma is meeting head on.  I'm looking forward to see what happens as the year unfolds.

Swim Lessons

The girls love swimming so when I found out about a gym near our new house that has a therapy pool we had to check it out.  Emma has a hard time regulating her body temperature which makes swimming during the non-summer months a challenge.  Even in a heated pool she turns purple pretty quickly - usually within 15 minutes and has to get out.

The gym is attached to a hospital and they use the therapy pool for some PT sessions and it's usually around 88 or 89 degrees, perfect swimming water for Emma.  It's also fairly shallow and ranges in depth from around 3 feet to 5 feet making it the perfect pool for Julia.  After our trial period, me and the girls joined.  We've gone several times and decided that Julia would benefit from private swim lessons since she is very close to swimming.  The aquatic team has an instructor that is trained and certified to teach swimming to children with disabilities and once we found out Julia was matched with that instructor for lessons we signed Emma up for one.

Julia is doing really well in the pool.  She can swim a long distance underwater, kick her legs appropriately and swim with a noodle in deeper water.  She is very lean, though, so her body wants to sink instead of float and Miss Tia is doing a great job of teaching her technique and floating.  Plus, she is very funny and Julia has a ball during her swim lessons.  According to Miss Tia, Julia is well on her way to being a swimmer.  Here is the best photo I have of Julia because she did a lot of underwater swimming the day I brought my camera.

Emma was signed up for one lesson, but we liked how it went so signed her up for the full 7 week session like Julia.  Miss Tia was completely comfortable with Emma in the water and quickly figured out her amazing ability to pay attention to everything going on around her and not so much to what is happening right in front of her.  Then she figured out a way to keep Emma's attention on her and follow a few instructions - no easy task considering Emma can't wear her CIs in the water and she has an even worse attention span when she can't hear!

The main focus of the early lessons will be on breath control.  Making sure that Emma knows to hold her breath if her head goes under the water and to try and get her to breath out.  Emma doesn't blow bubbles or blow outside of the pool, so I'm not sure about this goal but Miss Tia said Emma is trying and we'll see if she is successful.

She is also working with Emma pushing off her hands so she can learn that her body will move in one direction or the other based on her movements.  She even was able to get her arms all stretched out and then Emma would pull them to her body and she would move which I find amazing since I can't get that to happen!  Our focus is mostly for back swimming.  And Emma is either held the whole time or uses a floatation device - we have the Danmar swimming collar and use this for the last 5 or 10 minutes of the lesson.

This is not aquatic therapy, but rather swim lessons.  It's pretty fun, actually, to have Emma in her own swim lesson that isn't therapy but sort of is therapy at the same time if you know what I mean.  Miss Tia can't promise that she'll be able to get Emma swimming independently and I think that is more of a long term goal.  Right now keeping her head out of the water (neck control, Emma!) and knowing to hold her breath if her head goes under, along with working on trying to stop her from arching her back so much would make me really happy.  Emma has so much fun in the pool and really has shown an interest in wanting to move/swim but I need guidance on how to help her make this happen.  Miss Tia is doing a great job of showing me new things to try with Emma in the water and it's made swimming even more fun.

I'm so happy we were able to find a truly inclusive swim program that works for us and an instructor that seems to be a great match for both girls.  I'm looking forward to seeing how they are doing in the water at the end of the 7 week session.

Suggestions needed

Mom, I'm way too cute and can get everything I need with my smile.  Trust me!

 As part of Emma's aural rehabilitation and really just as part of being teaching my little one, I'm constantly talking to Emma, naming things, "narrating my day", etc.  It's clear to me that Emma knows and understands us and I've been trying to take it to the next level of her communicating back to us.  Her main form of communication is currently smiles, laughs, whines, cries and vocalizations.  She also uses her eye gaze quite effectively.

Previously, we've worked with picture cards with Emma but she had very little interest in using the cards after a few weeks.  We've worked with the iPad - mostly the Yes/No and Proloquo2go apps.  She definitely is interested in the iPad but has a very short attention span for communicating on it so it's rather hit or miss with her.  I'm trying to build her vocabulary and prompt her to communicate more and was looking to use both high tech (iPad) and low tech (picture cards, buttons, switches, etc.) to keep her interested.  When I came across a blog post on Adapting Creatively that showed how to turn a swim noodle into a card holder I thought this would be perfect for us!  You can see the original post here.  I bought a pool noodle on clearance for $0.75 and set about making the card holder in various lengths.

We've been doing same and different matching with Emma.  Her SLP gave me the cards for Brown Bear, Brown Bear and we have her match the photos in the book to the matching card.  Emma loved this game and was very in tune with the cards and picking the "same" card as the picture in the book.  She would pick correctly about 90% of the time and we implemented this game for the Goodnight Moon book.  Then, she decided she didn't really like this game after all and found anything she could to distract herself from what we were trying to play with her.  Suddenly, the lights, a spot on the floor, her fingers, anything was more exciting than playing the matching game.  This is pretty much how Emma operates in her speech and hearing formal and informal sessions - she prefers not to participate.  So, we stopped playing that game for more than a month to see if her interest would be sparked again after a long break.

When I saw the noodle card holder I thought it might be a good time to re-introduce the book matching game.  Originally we would show her the book and then prop it up and hold the two card choices for her - one in each hand, but using the noodle card holder would make this game easier to play and allow us to increase the level of difficulty by using 3 or more card choices for her to pick from (this would be difficult if I could only hold them in my hand).  I was so excited to start playing this game again and try out the noodle but, sadly, Emma wasn't interested in playing with me.  After several attempts over a couple of days to play with Emma refusing to play along I decided to try something else.

I took the flash cards we have and placed them in the noodle and made a big fuss and tried to have Emma pick between two flash cards.  She was very happy to sit in the play room and have me talk all about the cards and make noises and talk them up and put them in the noodle for her to pick between the two while she completely ignored me.  And, it was a lot of work for her to ignore me - I wasn't making it easy on her!  Often I find she works so hard to ignore when it would be lots easier to just give in and play and I just don't get it.

I'm looking for any ideas or suggestions on how to get Emma to take an interest in communicating.  If you've been there, done that before I'm open to all ideas.  Please, please share them with me.

Here are a few photos I took when it was obvious I had an unwilling partner in my game.  Enjoy the serious cuteness of Emma!

There is NO WAY I am going to look at these flash cards.  No way, no how.

Horray!  She is ending this torture session.  No, onto more important things like cuddling with Finnegan.

A view from the back.

Hat Free!

Before I go forward on this post, I just want to give a huge shout out to my Dad and to my husband for being such wonderful Fathers.  Happy Father's Day!  This year I didn't do a post for Father's Day so I wanted to make sure I got a shout out to them.

Now, onto the hats!

As you know, Emma has a profound hearing loss in both her ears - she is deaf.  In addition to being deaf, she also has very delayed motor control for her head and her body.  When her first cochlear implant was activated at the age of 14 months it was ridiculously hard to keep the magnet on her head.  And, if the magnet is not on her head she cannot hear at all.  I made it my mission to keep the magnet on her head for all waking hours and it was a losing battle - all the tape, headbands, etc. would not keep the magnet on her head.  We battled this for quite a while and found that the magnet would stay on her head the best when she wore a cap (pilot cap ordered from Hannah Anderson) and even better when I put toupee tape on the magnet and covered it with the cap.  When her second cochlear implant was activated at the age of 2, it was pretty much impossible to keep both CIs on her head with just the tape and so we continued to use the cap.  When we were at home we tried to keep the cap off as much as possible because: 1.)  Emma hated wearing the cap and, 2.)  I just loved to see her head and hair all done up without a hat!  But, really, to keep the magnets on her head so she could hear we had to use the cap or resign ourselves to putting the magnet back on her head the 1000x/day that it would fall off.  Remember, she doesn't have the best head control so her head was mostly always touching a seat or the floor or something else and the magnet would easily rub off from Emma turning her head back and forth.

This summer we finally have a handle on keeping the CIs on Emma's head so she can hear during all (or mostly all, they do occasionally fall off!) waking hours.  And while I would gladly keep putting a hat on Emma's head if it was the only way that she would be able to hear, I'm happy to say that we have just recently been able to go Hat Free!

A few things have happened to make it easier to keep the CIs on her head.

• Emma has better head control.  Although I know her PTs think it's not so great I'm thrilled with how far she's come with head control and know that it will only continue to get better! 
• Her head is not always rubbing against something.  She is commando crawling these days and if I lay her down on her back on the floor, she will have rolled over to her belly within seconds so she can get moving.  Emma also loves walking in her gait trainer that does not have a head rest for her and her ChildRite chair (the big Bumbo seater she uses) doesn't hit her head, either.  
• Emma is using the Nucleus 5 CIs with the compact rechargeable battery and it makes the unit much smaller and easier to keep on her tiny ears
• Our awesome audiology team found some new gear that helps keep the CIs on her head and I am so very grateful for them.

I'm completely delighted that we haven't had to use the pilot cap for the last few weeks!  Even at school we are able to tape the magnet on her head and use the ear gear to keep the CIs on her head with only a few touch-ups to the tape each day.  And I feel like things have gotten so much easier because, really, keeping CIs on a child with cerebral palsy is not for the faint of heart!

It's wonderful to see Emma - her beautiful blue eyes, her beautiful hair all done up in a matching ponytail, her huge smile - without her hat.  I can't even put into words how great it makes me feel.  It really is the little things in life that can make us appreciate everything a little bit more.

Emma loves a good hand washing

I took this video of Emma and thought it was too cute to keep to myself!

One of the things Emma misses out on at home is leaning into the sink and washing her hands by herself and making a mess with all the water.  I think all kids love to make a mess at the water in the sink.  It's almost like a rite of passage for little ones.  Emma has shown me time and again with her giggles and happy feet that she loves to play in the sink and wants to experience this right of passage through toddlerhood.

Since our house is not set up to easily have Emma wash her own hands (i.e., none of our sinks are roll unders!) I usually wind up wetting a washcloth and using it to wash her hands.  It's not that I couldn't put her hands under the sink to wash them more than I do, it's just that there are a million things like this I could do each day but my back can't accommodate them all.  

So, whenever we are out and about I always look for the handicapped sinks to let Emma wash her hands.  This occurs on our weekly visits to the hospital, trips to the bathroom at church, and many museums.  There is one particular museum that has the best set-up for Emma's hand washing and it is the local Children's Museum.  And while you will not find it on their brochure or website the family bathroom stalls with the roll-under sink is Emma's favorite exhibit.  It is there that I shot this video.

One thing I want to point out is how well Emma is listening and following directions over the noise of the water.  This video is soooo cool to me because it shows how good Emma's receptive language is getting with her cochlear implants!  She might not be saying much, but she is certainly taking in all the language we throw at her.  And she looks so grown up washing her own hands.  Thank you, Emma, for sharing your hand-washing joy with me and reminding me to celebrate the little things in life.

Songs of Love

Have you heard of Songs of Love?  Songs of Love is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.  I LOVE this organization.  How amazing is it to have a song written just-for-you?!  

Around Emma's second birthday I requested a Song of Love for Emma.  I thought it would be something wonderful to share with her since she was hearing pretty good with her cochlear implant.  We received Emma's Song of Love right before the activation of her second cochlear implant and I was super excited to have Emma hear her very own song with two ears!  

I knew that Emma would love her song - she seems to enjoy music - but what I didn't realize is how much the rest of us would love her song, too!  Julia loves Emma's song and I'm so glad she plays a prominent role in the song so that she isn't jealous that Emma has her own song and she doesn't have one.  In fact, she often requests Emma's song whenever we are listening to music.  

I LOVE the song they wrote for Emma - it's the song I used in her 3 year slideshow video that many of you commented on.  The writer captured the sweetness of having Emma in our life perfectly and every time I listen to it I feel like the luckiest Mommy alive to have two unique, amazing daughters in Julia and Emma.  I especially like to listen to the song with the girls on the "tough" days - you know, the days when my back is hurting, we have loads of appointments, people make stupid comments to us, etc.  This song always picks-me-up on those days.

I was lucky enough to talk with the songwriter/singer on the phone several months ago.  The organization was doing a lot of outreach for votes to win a grant in the Chase Community Giving Campaign on Facebook and they were making phone calls and email requests to supporters.  The writer/singer of Emma's song called us and I told her how much Emma and our entire family LOVES her song.  It has really touched our lives and I was so thankful to get a chance to thank the writer personally.  

If you know anyone who would benefit from a Song of Love, please let them know they can find out more information at their website http://www.songsoflove.org/   And, if you are looking for a worthwhile charity to make a donation to, I highly recommend this wonderful organization.  

Emma isn't smiling

Emma is usually a really happy little girl (outside of bedtime!). With her teeth coming in, though, she has been having a rough go of it unless we are outside. I shot a video of her this morning and wanted to share because it shows:

1. A side of Emma most people don't see - a sad side :-( Luckily, she perked up a bit after I took this video.
2. That even with all the crying she manages to hear me tell her to lift her head up.
3. That she follows the direction I gave her to lift her head up! Yeah, Emma!!!! This is a lot of work for her!
4. When I mention Daddy, she perks up. She is a total Daddy's girl.
5. When I mention Daddy again, she looks towards the door - I'm thinking this is on purpose as she might have thought me talking about him meant he was going to come through the door any minute.
6. When I mention Mommy, she goes back to crying. Hah! Some days are just like that.

A Good Day

Today we had a great day! Julia and I were planning a Mommy/Julia day and we added Chris to the mix when his school was closed for snow. There really wasn't any snow where we live so we headed out for some one-on-one time with Julia while Emma stayed home to play with our babysitter and have a speech therapy session. Miss Kate, Emma's fabulous speech therapist, left us a note to tell us about Emma's session. I wanted to post it here so everyone can know of the progress she is making! "Wow! Great session today. Emma laughed appropriately at silly things I did - I got food on my elbow and showed her. There was something else that happened that Emma laughed out loud and so appropriately! Emma chose toys from field of three 2x's. She followed directions - knock it down and high five with motor support to accomplish. I heard the following sounds b d g u e uh. I heard C-V C-V C-V (c= consonant, v=vowel) syllable strings: agubija, agudu. She ate extremely well today. I gave her chin support to help Emma clear spoon and prevent spillage. She did a great job today!" This report just has me beaming! We are working so hard to have Emma hear and vocalize with her cochlear implants and it is so hard for Emma because her motor issues carry over to her mouth. When Emma first started vocalizing we only heard vowels. Then it was vowels that were strung out like: aaaaaaaaaaaah. Then we started hearing some consonants and now she is stringing together consonants and vowels. Emma still is quiet overall but getting more and more vocal as the days go on. Progress is made over the long haul and we are starting to see the fruits of Emma's (and our) labor. As for Julia's day out, we went to a local amusement center and then out to lunch at the place of her choice - IHOP. Julia ate up all the attention and insisted in holding both our hands as we walked to and from the car. Chris was so glad that he was getting so much attention from Julia since she sometimes shows a preference for "Mommy do it!" We all had such a fun time and are looking forward to our next one-on-one outing with Julia - hopefully when the weather is nicer and we can spend our time on an outside adventure. In case you were wondering, we also do one-on-one time with Emma since we don't want all of our outings with Emma to be to therapy and doctor appointments! Next up for Emma is story time at the local library that she and I will attend starting next week while Julia is at school and we are going to check out a KinderMusic class at the Y to see if we want to sign up for the Spring session. Here's to enjoying the good days!

The I word - Insurance!

Warning! This post is just one big rant.

I've been going through all our health insurance options lately. We have to choose Cobra or go under Chris' health plan. It's caused us a great bit of anxiety as medical costs are pretty crazy around here and are about to even get crazier. The problem is that neither of the options really fit our long-term needs. Cobra is super expensive, coverage is lower than the previous year's plan and it's only good for another year. The only thing attractive about Cobra vs. Chris' plan is that it does cover some therapy which would be handy from Oct - Dec. of this year when Emma ages out of the early intervention (EI) birth to age 3 plan. In EI all her therapies are covered by either insurance, the state, or a combination of both until she is 3. After that, Emma will get the services in the school system and I am skeptical that she will continue to progress as steadily as she is without some additional focused therapy.

As for Chris' plan, the downside is that it DOESN'T COVER ANY therapy for chronic conditions such as CP and has NO hearing coverage (don't even get me started on this one - when did hearing become a luxury????). Previously I would never have though twice about these exclusions, but Emma has CP and is deaf so you can guess that these exclusions just jumped off the page at me! Thank goodness that Emma has a secondary insurance for her disabilities that I am told will cover her ongoing hearing costs. As for the therapy, I have no idea what will happen come Oct. 1st. We might be able to successfully advocate for some private therapy coverage for Emma. I'm not sure how that will all work out, but I have a feeling it will. God has seen us through so much the past two years and each and every time I've gotten overwhelmed by the insurance stuff He has given us what we needed. So, I need to keep the faith that He will get us through whatever comes up.

The thing is, I know we have it better than many families in a similar situation. We live in a state that offers disability insurance for qualified children. In our area DE and PA offer this, MD and NJ do not and I have not idea how parents in these states pay for all the medical costs. We also were a bit older when we had our children so we already have a house and some savings, which many young couples starting off do not have. Not to mention that we are both well educated, speak English as our native language and have a good support network - all of which is very helpful in navigating the "system" and figuring our the insurance coverage when the coverage documents are written like an extended warranty sales pitch that covers everything until it's actually broken and then they bring out the fine print!

We finally decided on the best plan for us, but I still have some lingering insurance anxiety. Why? Do you know the cost to raise a child with multiple disabilities? Let me sum it up in one word: Staggering!

I've been following the health care reform in Washington as closely as my time permits. I've called all my representatives in D.C. multiple times and sent several email letters to each of them. I've sat in on town hall phone meetings on health reform. I even sent a message to President Obama directly. I've listened to many of the NPR discussions on this topic. I've never been this active on any political issue before and I believe that we have to take a stand as a nation and say enough is enough with our health care system and fix it.

Before Emma I might have been content to sit on the sidelines a bit more and I now think - shame on me! Why should I leave it to other people to decide how to change the system without providing my position? Our elderly know how to advocate for themselves, but who will advocate for our children? So many parents with children with special needs - that need to advocate for the health care reform - just don't have any energy left at the end of the day.

And who can make heads or tails of what the reform proposals are anyway? Not me. It seems to change as quickly as the wind changes direction. The one thing that is clear, though, is that something will change. And I hope that the changes will decrease my anxiety over health insurance for Emma! I certainly have given at least my two cents worth to my representatives in D.C. to try and turn my hope into a reality. Have you?

Hear, Hear

The not-at-all-secret BIG news in our house is that Emma now has two cochlear implants. I did a post on the surgery here. It seems like just yesterday that we were dealing with the multiple insurance issues, change of surgery date and trying to fend off the H1N1 virus! The surgery came and went without any complications, thank God, and we have kept quite busy ever since.

Truth is, our everyday lives are quite crazy with therapies, appointments, and extracurricular activities that I didn't realize how quickly the activation date would come! When we were waiting for Emma's first CI activation it felt like FOREVER between the surgery and the initial stimulation (activation) and I think this time, since Emma already was hearing quite well out of her right CI, the time went by much quicker. Which is quite strange since it was a 5 week wait for the activation vs. 3 weeks wait in 2008 with her first implant.

Waiting patiently before activation

On Dec. 7th Emma heard out of her left ear for the first time ever! Her reaction was similar to when her right ear was activated in that she jumped a bit when it was first turned on and then she let out a HUGE smile. She looked all around the room at everyone smiling. This was such a huge moment in time for us! We started discussing a second implant with the team before she even received her first and our journey from one to two implants was just shy of 1 year since her right ear implant was activated on Dec. 10, 2008.

Sporting the Nucleus 5 and smiling at activation

Emma did so well at the appointment even though it took place right at nap time and it took a long time. She is lucky that she was able to receive the latest implant released in Sept. 2009, the Cochlear Nucleus 5. She has two of these external devices and we are using one on each ear and using the older Nucleus Freedom models as her back-up device.

Bilateral implants!

There is a learning curve to the Nucleus 5. We are getting used to the new device operations and the remote assistant (which looks like an iPod) feature. We are also still figuring out the best way to wear the device so it doesn't keep falling off her head. We pulled out the pilot caps again to help keep them intact and are using the toupee tape quite liberally. The right device seems to stay good but the left device falls off quite frequently. This is mostly due to some residual swelling in the area of the implant that will decrease over time. I remember from the other side that it takes a few months for the swelling to go away so the magnet to really "seat" correctly on the head and avoid falling off constantly.

I can't help but be amazed and so thankful for this technology and the world it has opened up to Emma. The access to sound really has changed Emma's life. She has made so much progress in communication and motor control since she tapped into sound and everyone can see the changes - they are that major! At the same time, though, I still wish that Emma wasn't deaf so she wouldn't have to deal with us fussing with her CIs or attend hours and hours of therapy to learn to listen. But she is and she does and we're with her every step of the way so she isn't going through this alone and she is making amazing progress.

How amazing you ask? Well, in just one week with bilateral hearing, Emma has impressed everyone including her Auditory-verbal therapist who is a bit hard to impress! She is turning to sounds quicker, with a noticeable decrease in the amount of time it takes her to process the sound and respond to it and is pretty much spot on when it comes to localizing sounds. Emma has also demonstrated good sound awareness by picking 4 of 4x the correct box with an object in it when presented with identical boxes that were shaken with an object in one and nothing in the other.

Emma can hear! Out of both ears!

In the past couple of months we've heard her say ah goo, boo, oh yeah, go, blue, water, her version of Julia, and her sound for Finnegan. And, just this week I think she could have said Ma (with lots of prompting, but I can't be sure and no one else was around to hear it!). On Nov. 30th and Dec. 11th she said "I love you" to Finnegan - click here to see the video - and I can't help but think that she'll belt out an I love you to me, Chris and Julia very soon. I can't help but think how much a CI has opened up Emma's communication and are thrilled to see how she does with two implants.

There is a saying I've seen that says "Talk is cheap unless your deaf. Then, it's priceless." This is so true!

We are truly blessed to have such a wonderful, hard-working little girl. We are blessed to be working with such an amazing cochlear implant team that has taken the time to get to know Emma and believe in her unlimited potential.

Both my girls amaze and inspire me everyday, but in different ways. And this Christmas I feel very blessed.

Emma talking

Emma has been making progress with her vocalizations/talking, but it has been slow going. I find it especially hard - more so than Emma's delayed motor skills - that my two year old daughter has limited expressive language. For example, Emma doesn't point to let us know what she wants, cannot crawl to something and bring it to us to play with, etc. She does have outstanding eye gaze and smiles that are very expressive and we can usually figure out pretty easily what she wants, but I really want more. More than anything else I pray for, I pray that Emma learns to talk so she is understood by everyone.

Yesterday I said a special prayer to St. Theresa the Little Flower to help Emma talk. I believe we have a real connection with St. Theresa and that it is no coincidence that her birthday is the same as Julia's, her feast day is the same day as Emma's birthday, and she was born one hundred years before me. Every time I pray to St. Theresa I feel my prayer is answered.

Today Emma has been very vocal. She has been so quiet for the past few days that I was beginning to worry about her talking. Today was a rare day where we had nothing special to do and no therapies to attend. Emma and I decided to stay home and just play and I put a heavy language emphasis on our playing. Julia was in school and the house was quiet so we had uninterrupted play and Emma was so expressive! For the first time ever I heard Emma say I love you! It wasn't to me - it was to Finnegan - but I was SOOOOO happy to hear her say it and

I went and got my video camera.

While Emma did approximate the I love you sound again, she didn't say it nearly as clear as before I started up the camera. I kept the video running for a bit more of our playing and clipped together some other moments of Emma expressing herself and placed the video below. Way to go, Emma!

Appointments three years running

Thanksgiving time seems to be a very busy time of year for us. In addition to all the wonderful family activities, we have spent the day before Thanksgiving at the hospital with appointments for the last three Thanksgivings!

Two years ago, when Emma was about 7 weeks old, we entered the hospital to have the ENT check Emma's ears before we boarded an airplane to Florida. Emma had an ear infection and we wanted to make sure it cleared up before the flight. While there, we also had the audiologist test her hearing - yet again! - to determine the level of hearing loss in her right ear. We left the hospital after a very long, very emotional roller coaster ride. We found out that Emma was deaf in both ears, not something we expected since previous tests indicated she could have hearing in her left ear. To this day, whenever I think of Thanksgiving I am transformed back to that moment in time.

Last year we had an appointment with the same ENT, Dr. O'Reilly, the day before Thanksgiving. This time it was a very happy visit. Emma had her cochlear implant operation the week before and we were seeing Dr. O'Reilly for Emma's post-surgical visit.

This year we had another long day at the hospital. Emma had her auditory-verbal (AV) hearing therapy and physical therapy in the morning. In the afternoon we had a follow-up visit with Dr. O'Reilly (see photo below), and an audiology appointment to go over the new Nucleus 5 device so we are ready at Emma's left ear CI initial stimulation on Dec. 7th. It was a very long day, but Chris and I were talking about how different it felt this year than three years ago.

Emma and Julia with Dr. O'Reilly

This year Emma celebrated her third Thanksgiving. And while life is very different today than we anticipated, we feel very blessed. Two years ago we found out about Emma's profound hearing loss diagnosis. In one week she will be *hearing* out of both ears with a cochlear implant. We are so thankful for cochlear implant technology. We are thankful to the people who developed them, designed them, and are in awe of those people that received the initial implants so that others that came after them could benefit from their experiences. We are thankful to the entire cochlear implant team at A.I. DuPont Hospital for Children. While this is still the beginning of Emma's hearing journey, we are glad that the journey has started.

Two Ears!

We've been working on getting a second cochlear implant for Emma since the spring. Well, really since her first implant last November. Emma had her right ear implanted with the Cochlear Nucleus Freedom implant on Nov. 21, 2008 and it was activated Dec. 10, 2008. After quite a bit of research and consulting with our doctors on the pros and cons of two implants we determined that we definitely wanted Emma to have bilateral (both ears) implants. Emma's cerebral palsy makes it extremely difficult for her to use sign language (ASL) and with all her challenges we believe she will benefit tremendously from having two ears to hear instead of only one. Our goal at the time was to implant her left ear within a year of the right ear, but had really hoped to have the left ear done in the spring '09.

Insurance is a funny thing when it comes to hearing. Depending on your plan, CIs might not be covered at all or they might cover only one ear or could cover both ears. The insurance offered at Chris' work does not cover CIs at all. The insurance that was offered at my work covered bilateral (both ears) CIs. Since we were covered with my insurance, we didn't foresee any issues with implanting the left ear and moved forward full speed ahead.

We started the qualification process at our CI center in the spring. Emma was approved for the second side since they would be able to demonstrate her ability to use the right side CI to the insurance company. By the summer we were on our way to have her implanted. Insurance approved the request. A surgery date was set of August 3. Then something happened. I had a bad feeling about the August 3rd date. A weird, let's not get it done this date feeling. I believe in listening to those feelings but, to be honest, it's feels strange to tell the surgical team that this is one reason why you need a new date! The other reason was that my entire family was out of the country on vacation in August and I just didn't know what I would do if anything happened. So, taken together, we decided to postpone the surgery date to October. At that time I did not know for sure that I would be laid off in July and have only a few more months for my insurance to pay for the surgery.

While we were working on postponing the surgery, we heard rumblings that Cochlear was about to launch a new version of the implant. We've heard that they are always working on new devices and new ones are usually available about every 5 years. This upgrade would be for the internal device implanted in the head and the external device that is worn on the ear and it was waiting on FDA approval. We decided to go ahead with the October date and would use the new implant if FDA approved, but we wouldn't delay the surgery date any further if the new implant was not available because we needed it covered by my insurance.

While working on renewing the insurance approvals for the new October date, we hit a snag. They wanted more information from the hospital. Then we found out the doctor couldn't do the surgery on the set date and wanted to reschedule it. We had to submit insurance approval again for the new surgery date. Each time you submit for approval you can be denied. And each time we requested the approvals there seemed to be a bit more hoops to jump through. Needless to say, I was a bundle of nerves through this whole process. The surgery is EXPENSIVE and we couldn't cover it out of our pockets and needed to have it done while I had my insurance. Finally, all the ducks lined up and we had a surgery date with insurance approvals for November 2! We just had to keep Emma out of the H1N1 swine flu way so she could get the surgery. Of course I also worried about that, but in the end it all came together.

Today, Emma had her left ear implanted with the *new* Nucleus 5 cochlear implant! She did great for the surgery, was quite irritable afterwards, and is finally enjoying a bit of rest. Our center provides two external implant sets/ear so that we always have a full set of spare parts and Emma won't have any *down time* from hearing should any piece need to go out for repair. We will get two sets of the Nucleus 5 external devices and they are compatible with the Nucleus Freedom Emma has implanted in her right ear. So, that means we can use Emma's Freedoms as the back-ups and use a Nucleus 5 device on each ear and Emma will have access to the latest technology in both ears! This is just wonderful!

Her activation date is set a bit later than normal so that representatives from Cochlear can be there for Emma's activation since Emma is the first Nucleus 5 recipient at our center. Activation is set for Dec. 7 and Emma will be hearing in stereo by Christmas. What a wonderful Christmas present for all of us!

(note: I'll update this post with photos later this week)

Old McDonald

We've been working with switches with Emma lately so she can be more expressive. She loves singing songs and has recently taken to "helping" us sing Old McDonald.

On Thursday at speech therapy, Emma was helping us sing. She made the Moo sound each time at the appropriate point in the song - without having to hit the switch! - and also said O for each E-I-E-I-O. She was SPOT ON it! It was amazing to see. I was so excited to tell Chris about it and realized I should have taped it. Not to worry, we had another session on Friday as a make-up from a missed session earlier in the week.

On Friday I pulled out the video to try and capture Emma's Old McDonald to share with Chris. Friday's session was at 8:30am and Emma is NOT a morning person. She is usually more quiet in the mornings and Friday's rendition of Old McDonald was much spottier than on Thursday, but she still participated in the song. I would have been thrilled with this a couple of weeks ago, but since I've seen that she can do so much more I'm less impressed now (crazy, isn't it!). Here's the video from that session. Oh, and at the end I thought I had stopped the camera but I didn't, so just ignore the last few seconds of the video clip.

I'll work on getting a video from a Thursday at 11:30am session on here in the next few weeks so you can really see how good she participates in the song. It's SOOO COOL to see!

The first time we heard of CMV

I've mentioned CMV in passing in this blog but haven't done a post specifically on CMV. And there is a good reason I haven't - when I first started researching CMV it scared the daylights out of me. So, I stopped looking into it for a while and focused my attention on getting Emma the medical treatment we wanted (i.e., Cochlear Implants), the medical insurance we needed, and the therapy schedule in place - all of which, quite frankly, is a lot of work.

And then I came up for some air! Today I look at Emma and know in my heart that she will be just fine. I think about CMV and I still feel some heartache and worry, but I am at a much better place today than two years ago. I am now ready to talk about CMV and our experience with Emma.

I first want to talk about the first time we heard of this awful virus and will follow it up with another post on CMV and prevention. For now, here is our story:

When Julia was about a year old we were thrilled to find out that I was pregnant. How lucky we are! I had a feeling from the very beginning that we were having a girl and I was so happy that the would be so close in age. Sisters!

This pregnancy was a bit different. I was sick from almost the very beginning - morning sickness - that lasted for about 8 months. Yuck! I was also very, very tired. I thought it was because I was so sick and also the standard pregnancy tired. I would go to bed before 7pm each evening and sleep straight through until morning. This lasted for about 4 or 5 months and I pretty much just played with Julia a little bit, worked and slept. Then I started to feel better.

We agreed that we wanted to know the sex of the baby and were excited for the first ultrasound. Emma didn't cooperate and we left not knowing if she was a girl or boy. I figured my OB would send me for another ultrasound so there was still another shot to find out before the delivery. The ultrasound showed an echogenic bowel - basically some blood in the bowels. My OB assured me it was likely nothing to worry about and sent me for a 2D ultrasound with a specialist. Everything appeared normal at this ultrasound an we left knowing that Emma was a girl (YEAH!) and that everything measured just fine. We were very relieved and happily anticipated Emma's entrance.

Emma came a couple of days late and weighted in at 7lbs. 3oz.! The birth was - thankfully! - uneventful and our darling Emma was just perfect. We were anxious to get home. Before we left we learned that she failed her newborn hearing screening in her right ear. She passed her left ear. Everyone told us not to worry - this was common and is usually due to some excess fluid in the ear from the birth process and we should follow-up with another hearing test in about a month. I wasn't too worried since I figured at worst, she would still have one good ear to hear. We went home and started to settle into life as a family of four.

We followed-up with the hearing test and another test and another test and eventually realized that Emma is deaf. That really rocked our world! We found this out the day before Thanksgiving. I'll never forget that day. We had to follow-up the Monday after Thanksgiving for some confirmation tests but we were not expecting the diagnosis to change. I cried a lot that Thanksgiving season. Emma was the first deaf person in my life. I kept thinking when we aren't in a room she must feel so lonely since she can't hear us in the house. I held her and rocked her and didn't want to talk to anyone. In a couple of days I was ready to search the internet for options. I did a lot of research on cochlear implants and was excited about the technology. Then we went off to Orlando, FL for a vacation that was planned before Emma was born. I didn't feel like going, but it really was the best thing that could have happened. By the end of the vacation we had accepted that Emma was deaf and were looking forward to getting the cochlear implant (CI) process started.

When looking into CIs, I found that quite a few of the children had multiple disabilities. I wondered how those parents were handling that and thought I should stop worrying so much about Emma being deaf and thank God that she was only deaf. Everyone thought that Emma was deaf due to a genetic mutation (connexin 26) since she presented herself so well. She did have some reflux and back arching, but that didn't cause much concern. We met with the geneticist to determine the cause of Emma's deafness and he prescribed all the blood work to test for genetic reasons and then "threw in" the urine test for a virus since she did pass one ear in newborn screening and lost the hearing very quickly.

We had an MRI scheduled in early December to confirm that Emma had an intact auditory nerve - a requirment for a CI. The MRI showed an intact auditory nerve and also some concerning stuff with her brain. That REALLY threw me into a tailspin. What did that mean?

Our pediatrician called a neurologist and sent us over to see her the next week. We had found that it takes A LONG time to schedule specialists visits and that the parents usually schedule them, so when the pedi's office called to let me know of our apt. I started to know something was definitely not right. We saw the neurologist on Dec. 31 (Emma was almost 3 months old) and she told us that Emma tested positive for CMV and prepared us a bit that Emma might also have cerebral palsy, but she figured it would be a mild case. Huh? Excuse me? What happened to genetically deafened???? And what the heck is CMV? Cytomegalovirus? Can you spell that for me please? And that is how we first heard of CMV.

Video that simulates hearing loss

Over at Kidz blog, Cristin posted this video for Deaf Awareness week. Apparently, the week was last week but I didn't know about it which just means that we are having too much fun to notice that it is deaf awareness week.

After you look at this video, if you want to know what it sounds like to use a cochlear implant to access sound for deaf people, you can click on this link for simulations.

Join me in a 5K Walk for Hearing

A.I. duPont Hospital for Children is hosting the 1st Annual Hear We Go 5K Run/Walk on the hospital grounds to benefit clinical and research programs related to hearing loss and hearing conservation in children. Cost is $16 if you pre-register by May 28th, $20 after May 28th. You can register online here.

There is also a Kid's Kiddie K free to kid's 10 and under with registered participant. Refreshments, activities, raffle and education fair will also happen.

Date is Sunday, May 31 at 10am.

Chris is running this event and me and the girls are walking.  We'd love to have you join us for this cause.  Thanks to wonderful advances in technology, Emma has been "hearing" for 4 months now with her cochlear implant she received at A.I. DuPont - what a miracle!

P.S.  If you can't make the walk and want to give a contribution, they are welcome, too!