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.

Our Crazy Schedule

I was thinking today that our life is a bit hectic and characterized by a lot of running around. I keep thinking that it will calm down a lot once Emma starts pre-school, but I'm not sure it will. And, to be honest, I'm not really looking forward to Emma starting school - but that's still a year away and so I don't think about it too much.

Now, are you at the edge of your seat just wondering just how we usually spend our days? Well, you're in luck because I've put our typical weekly Fall schedule below. It does not include the multiple specialist, alternative therapies and doctor appointments because that would just make the week crazy (LOL!). This schedule is the best we've had so far, so I'm keeping my fingers crossed it doesn't change anytime soon.

Monday - Julia pre-school from 8:45am - 3pm, Emma 10am AV therapy, 11am PT, 4pm OT

Tuesday - Emma 8:30am speech, 10am Early childhood educator, Julia 6:30pm dance class

Wednesday - Julia pre-school from 8:45am - 3pm, Emma 9am AV, 10am PT, 4pm OT

Thursday - Emma 11:30am speech, 4pm OT

Friday - Emma 5pm therapeutic riding; day time is usually spend doing something FUN!

Saturday - Julia 8am or 9am soccer (will be replaced by swim lessons in the Winter)

1x/month - Teacher of the Deaf and Craniosacral therapy

Weekends - nothing but fun, fun, fun

The good thing is that nearly all of Emma's therapies are play-based which means she gets to have lots of fun while getting stronger. Julia gets to have fun at school for the days that Emma's therapies are outside the home and for the other days Emma's therapists are fantastic at including Julia in the sessions (or not, if Julia and I want to use that block of time for some Mommy/Julia quality time).

So now you have a basic idea of what we're up to - we're a busy crew, but are adding in more play dates and library story times to balance out all the adult interaction. No wonder I have a few photos of Emma just relaxing during the day to choose from for this post - complete with her ever-present smile! I wasn't as lucky for Julia who is always on the move so I picked my favorite soccer photo to post.

The Day After

Yesterday was a BEAUTIFUL day and the girls and I hit the road to visit Chris's parents who were vacationing at the beach. We left the house around nap time and I thought the girls would nap on the way, but I was completely mistaken - not a closed eye in the car! The afternoon and evening were packed with pool time, beach time, walk and dinner time without so much as a wink of sleep for either girl. Here are some photos from our day out.

Although the girls fell asleep immediately when we hit the road for home, they were still very tired this morning when I woke them up. In fact, I'm not sure that Emma fully woke up before she started her morning AV therapy session. Here are some photos, what do you think?

Slow, Steady Progress

When you have a child with hearing loss, you learn very quickly that it is important to focus on meaningful sound.  The idea is to minimize background sound so that the child can focus on sounds that will give them access to language and communication.  Some changes that we have made to help Emma focus on meaningful sound is to turn the TV off unless we are watching TV as our activity (such as viewing Signing Times! videos, which are amazing by the way!) and to follow an Auditory Verbal (AV) approach to help Emma progress with her cochlear implant.

The AV approach has us narrate our day and talk, talk, talk to Emma.  Julia loves to help by singing songs like Old McDonald and The Wheels on the Bus to Emma and will even do Itsy Bitsy Spider with her since she knows it is one of Emma's favorites.  Emma has been taking all of this talking in since her CI was activated 4 months ago  and what I've noticed lately is that the background is getting filled with Emma's sounds more and more.  She joins in for the songs with her own rendition and talks and laughs a lot when Julia entertains her.  

There is a video clip below of Emma making the "aaahhhh" sound during one of my home AV sessions with her in February.  I don't have a more recent video downloaded and posted on YouTube, but since the video in February she has progressed so much and has even started to copy our sounds such as "moo" for the cow and "whoop" for the giraffe.  This takes a fair bit of effort for Emma to get the motor planning together enough to make the sound, but she is getting more and more successful at having the sound come out instead of only having her mouth make the shape of the sound.  What an accomplishment! How far she has come since her hearing aid days..... 

Emma first received her hearing aids when she was 3 months old.  I remember that day so well!  I was so excited to have her start to hear and took the next day off of work so that I could work with her by introducing sound.  I planned to talk to her and show her that a lot of her toys have sounds and let her explore them.  Boy, was I in for a BIG surprise.  What Emma could have heard that day was me doing a lot of talking, along with me saying a lot of words I didn't want her to learn!  Her ear molds were so small for her ears that I was constantly working to minimize the feedback that was "whistling" at me all day long.  We eventually had a routine down where we replaced her ear molds every few weeks as her ears grew, and minimized the feedback as much as possible but Emma never seemed to get much benefit from the hearing aids.  However, we put them in her ears every day in case she received any benefit no matter how small....including getting used to having something on her ears. 

Fast forward to today where we are working to have her other ear implanted.  Our hope is to have her left ear implanted before the fall.  We meet with the doctors in early May to discuss this with them.  What an exciting year!