Thursday, April 30, 2009


The tv is not on very often in our house.  We do let the girls watch a bit of television, but it is usually Signing Times! videos or Barney shows and it's usually for only about 30 minutes a day.  On the nights when we get Emma to bed before we're ready to collapse, I usually turn on the telly to catch up on the few shows I TiVo each week.  

This season I've branched out from the usual suspects of my shows and started watching a new show - Table for 12 - on TLC that captures the adventures of a family with two sets of twins and a set of sextuplets.  One of the sextuplets has cerebral palsy (her name is Rebecca and she's gorgeous!) and it is interesting to me to see how this family is managing it all.  I'm officially a fan of this family and look forward to more episodes.  I've added this to my season pass on TiVo and recommend it if you are looking for something new to watch.

Oh, and t, yes, I'll try and search for Gossip Girl and take a look at it one night!  

Tuesday, April 28, 2009

Sometimes you get a bone

I've been reading this blog and there was a recent post about getting "thrown a bone."  Well, today I think God threw me one!  Emma sees so many doctors and I don't mind going to the many appointments but one visit always haunts me - the Pediatric Neurologist.  

I'm usually a pretty rational person, but visits to the neurologist wreak havoc on my stomach for weeks before the appointment.  I dread our visits there.  I dread the news that we always seem to receive at this office.  My heart breaks at all the children and families in the waiting room with us.  What usually happens is we walk in with our baby who we think is making fantastic progress and feel like all her hard work goes generally unnoticed.  I know Emma is developmentally delayed - I haven't been hiding under a rock somewhere.  I have friends with children close in age to Emma and see the delay whenever we are together.  But, can't we celebrate all the progress she has made?  

I'm happy to report that at our appointment today I think we finally were thrown a bone!  I should have known this visit would be different than the others.  The sun was out (it rained for all our other appointments).  I found a front row parking spot for me and Emma.  Chris met us in the waiting area where he already checked Emma in and they took us right back once we arrived even though we were about 10 minutes early.  There wasn't anyone in the waiting area in either our way in to see the doctor or the way out.  AND, did I actually hear that the doctor say she felt Emma made a lot of progress since our last visit?  Did she actually say that Emma should start to really make more progress now that she was so much more engaged in everything?  Well, finally the doctor is coming around to my way of thinking.......

Here is a photo of Emma before our visit sporting a ponytail and sitting in the chair - YEAH!

Monday, April 27, 2009

Statistics - they are personal for many families

Some statistics that I find shocking, especially since I was not aware of them until we became part of the "statistic".  Click on the hyperlinks to learn more.

1.)  CMV is the most common congenital (present at birth) infection in the US.  Each year about 1% of all newborns, or about 40,000 babies, are infected.  CMV is preventable, so learn more about it if you are considering having a baby.....and spread the word.  - March of Dimes

2.)  More than 4 million babies are born in the US each year  - BabyCenter

3.)  More than 12,000 babies are born deaf every year in the US.  That's more than for any other birth defect.  -- AG Bell

4.)  Congenital cerebral palsy (brain injury in-utero) is responsible for ~70% of children who have cerebral palsy (CP).  --- United Cerebral Palsy

5.)  Currently, about 8,000 babies and infants are diagnosed with CP each year.    --- United Cerebral Palsy

Wednesday, April 22, 2009

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!

Sunday, April 19, 2009

Getting out!

Emma's flashes her dazzling smile during Sesame Street Live.
Elmo and gang put on a great show!

The girls post for a photo with the poster.  Julia did not want to get anywhere near the actual characters.

Emma makes a face the first time she sees Rocky Bluewinkle.
Go BlueRocks!  We're so glad you won!

I'm still learning how to post here, but wanted to get another post out on all the fun we've been having lately!  I'm sure you can forgive me if it's not in the nicest layout.

With Emma having more energy lately and her enthusiasm for all things not in the house, we've been taking our crew out and about for some adventure.  Last weekend we took the girls to see Sesame Street Live!  We had fantastic seats on the floor so Emma could enjoy the event, but it was a bit "too close for comfort" for Julia.  So, we split up and Julia and Daddy went into the stands an acceptable distance from the Sesame Street gang and Emma and Mommy stayed on the floor where the characters mingled with the crowds and the Count came over to visit with Emma for a brief period of time.  Julia loved the show as long as the stars were at a good distance and Emma loved the crowd.  This surprised us as we were sure she would love watching the characters dance and sing on stage, but Emma was more into the people.  She thought they were all there to admire her and she kept scanning the crowd and gave them many dazzling smiles.  

This weekend gave us a glimpse of the great weather ahead.  Saturday was a picture perfect evening and so we headed out to the local Blue Rocks minor league baseball game.  Julia immediately spotted Rocky Bluewinkle, the mascot, and asked to go home.  When she realize we were staying, she clung to us until Rocky left our area and kept updating us of Rocky's whereabouts throughout the entire game.  Emma, on the other hand, loved Rocky and all the action of the game.  She was thrilled to be out and about and even stood in line with me to have Rocky autograph the big fan hand that she sported for most of the game....until Julia decided the Rocky-watch as no longer necessary and she needed to "help" Emma with the cheering hand.  Emma didn't mind sharing it a bit.  The game ended with fireworks, which we all love.  We did get a great tip from the dad sitting next to us about watching the fireworks in the parking lot of a local restaurant.  We left the game at the bottom of the 8th inning with the Blue Rocks well in the lead and made it to our car and to the restaurant parking lot just in time to see the beginning of the fireworks show as we were settling into our viewing position in the trunk of the van with the hatch popped open.  Once the show was done, we headed home without the major delay of the parking lot (last time we were in the exit traffic for about an hour!).  We plan to use this strategy again and will certainly check out a few more games this season.

Photos of the events are attached above - since I can't seem to figure out how to post them below!  What you'll notice is that Emma now uses a Kids Rock Fast adapted stroller.  To us it seems more like a wheelchair than we imagined Emma would ever need when we first learned that she has cerebral palsy, but it gives her great support and enables her to interact with her surroundings in a way we never imagined.  And, she gets a great workout on her neck/head as she looks all around her with the added benefit of the chair making it much easier to keep her CI on so she can hear.  All in all, we are thrilled with the stroller even if it is a bit heavy to move in and out of the car.  Of course, we don't keep her in it all that much as Mommy and Daddy still love to move her about.  I've just selected photos to post of her in the chair so everyone can see how good she looks in her new wheels!

Wednesday, April 8, 2009

New Adventures

I'm taking the leap and created a blog on Google.  I have received so much valuable advice from other parent's blogs and am just starting to become comfortable enough with our crazy, hectic lives to share it with others.  So, here goes......

Welcome to our blog!  Spring is here, but the weather sure still feels like winter.  We're anxious to start spending more time outside with the girls.  Chris did manage to get a single coat of stain onto the outside deck and hopes to get the second coat on within the next week as long as the rain stays away.  Our hope is to have everything ready for us to enjoy the good weather when it arrives!  

Julia received her costumes for her dance recital and loved trying them on and is looking forward to the recital in June.  Emma is making a lot of progress with her vocalizations and desire to interact with the world with her hands and we see that her hands are open much more, she reaches for objects more readily and is making movements that suggest she is ready to roll from her back to her belly.  She is making more consonant sounds, such as -m-, -g-, and -b- and I hope that it turns into a consonant vowel combination (ma, ga, da, ba) soon.  

We are planning on starting Emma in therapeutic riding/hippotherapy and are looking at a few different locations in the next couple of weeks.  I am really excited about this and think Emma will just love this, and I'm sure we'll have to find out if there is any option to include Julia in this as she keeps talking about the pony ride she had in the fall and when can she do it again. In addition to hippotherapy, I am starting to think about craniosacral therapy and nutrition options for Emma.  I have talked to a few parents who have seen great results with their children after starting these alternative therapies and I am doing research to consider if we should implement them  with Emma.  We are being careful that we do not overextend Emma as her schedule is already so busy and we want to make sure we keep enough time for fun.