A Whole New World!

 41 months ago, Duckling entered into an unfair world of uncertainty.  No one could have guessed the challenges she would face in such a short amount of time in her life.  We found out she was deaf the day after she was born.  With the traumatic events that were taking place during that time of my life, I was thankful that my baby girl was here and that she was ok.  The fact that she couldn't hear, really didn't matter.  The nurses felt my reaction to the news was odd, but that's where I was at that time in my life...learning that there were bigger things to be upset about and figuring out ways to accept things that we couldn't change.

It took 5 months to get a diagnosis of EVA (Enlarged Vestibular Aqueduct) and Severe Mastoid Disease.  She immediately received her hearing aid.  Her initial hearing loss was only in one ear, but we are not guaranteed that she will always have hearing in her "good" ear.  It has always been recommended that we learn/use sign language.  She was signing by the time she was 9 months old, but then we ceased teaching/signing (big mistake)!

12 months ago, there was a drastic change in her hearing...in the last 6-12 months she began refusing her hearing aid and her language development severely declined.  I began to notice that it often appeared as though she was ignoring people who were speaking to her and I would have to appologize for her and tell them that she simply can't hear them.  I began to notice that as I tried to get her attention outside or to tell her she is getting too close to the road, or to wait for me to go across a parking lot that she was unable to hear me.  I noticed my little girl slipping into her own little world of silence and I began feeling the pain that was expected of me that day after she was born.  I began feeling guilty that just a few years ago, her being unable to hear was not a big deal and now it was all that mattered.  I began to worry that she would loose what little hearing she had left and I was so scared for her.  You can't imagine what it is like to hear a song and wonder if your child will always be able to hear it or what it feels like to feel you "have" to teach your child to sign "I Love You" because you don't know if they will always be able to hear you say it.  When you sit in a hearing booth with your child and you see first hand exactly what they can't hear, it is absolutely heartwrenching.  I do have to say it is one of the hardest things I have to watch as a parent...there is almost nothing more devastating. 

Today...she has entered into a whole new world!  A world in which she can hear everything going on around her!  They did one last hearing test (the 3rd one in about a month) to make sure one last time, that there was no hearing left.  They confirmed their prior results...there is no way to make use of her right ear...but, there is a way to pick up sounds on her deaf side, so that she is able to hear them!  With a bone anchored hearing aid, we are hoping to offer her a safer world (as being in a noisy environment is very unsafe for her), we hope to lessen her frustration (as hearing in a crowded place is not possible for her) and to better her capability of developing the language skills she is missing.  

Today, she received a Ponto Bone Conduction Hearing Aid. 

Boo, at the wrong date on the picture

This bone anchored hearing system can pick up sounds on your deaf side, convert them into sound vibrations and transfer them to your healthy ear via the skull bone.  To read more about this and how it will help with her current one sided deafness, click here.  She will be testing this system for the next 3 weeks.  So far, just today, the results have been absolutely amazing!  If we like the results we get from this system, she will get a system to call her own.  When she turns 5 she will then be implanted with a titanium post, the receiver will then "snap" right onto a post that will be behind her ear.  Until then, she will wear a headband to hold the receiver in place. Also, with this system we also will have the capability of adding an FM System if we choose to use one later.

For most people, the biggest milestones in their toddlers lives are watching those first steps...for us, it's watching the look of amazement on her face as she hears sounds in a way she has never heard them before!

It's just a small hurdle and this too shall pass!

Yesterday, Duckling went for her Speech/Language evaluation.  It had been about a year since her last evaluation and this appointment was a very important one.  Recent discoveries with her hearing test a few weeks ago proved that she is receiving no benefit from her hearing aid.  At this point, due to the severity of her hearing loss, we are left with only two possibilities of ways to make her hear which are both surgical procedures.  One being a Baha bone anchored hearing aid and the other being a Cochlear Implant.  Currently, our only option is a Baha since she still has hearing within normal range in her "good" ear. 

I had expected that she would blow her evaluation away with normal scores and that she would not qualify for her Baha because of this....I was dumbfounded as I sat and observed her evaluation and I was amazed at some of the words she was unable to come up with during her testing and couldn't believe that I have never noticed her lack of ability to identify everyday "things" and her lack of ability to express information and that no one else has ever noticed anything with her either.

She is delayed in expressive language (which is basically her talking)...this went unnoticed by me because the girl talks in 8-10 word sentences.  I've never noticed her lack of using appropriate words for everyday things.  Duckling has always tested normal with expressive language so it is disturbing to see that she is now testing delayed in this area. She isn't "too" far behind, but this area has the potential to decline quickly because she simply can't hear the words she is "hearing".

She is very delayed in vocabulary (with is the words she uses to identify things) At 41 months, she is testing between a 24 and 29 month level. This is an area where she has always had a delay in, however, because of the way they tested this area we always aruged it wasn't an accurate look at where she truly was and so we assumed she fell within a normal range. Yesterday, she was old enough to test in this area with the terapist and I was amazed at what she didn't know...she just doesn't have the words to identify things even when she knows what they are...for example, while pointing at a picture of an elephant the therapist asked "What is this"? Duckling, with a blank and totally clueless look on her face obviously not "knowing" the answer started to get distracted, the therapist then took her finger off of the page and said "Where is the elephant"? and right away she pointed to it, so, she KNEW that was an elephant, but she didn't have word elephant in her "vocabulary". It was very hard to see the amount of things she had no words or wrong words for.

She did however, test above average in her receptive language (which is her understanding what is said to her).  So, in her own little world of garbbled words, she does understand what we are saying...she just doesn't understand the words clearly enough to be able to express herself appropriately.

Her speech therapist recommended that we seek private speech therapy and also obtain special education services and also suggested that we reincorporate the use of sign language and she also supports the decision to use a Baha, but it has to be approved by the doctor so I can certainly say, she will be getting one. She will wear a softband, because she can not be implanted until she if 5. I do still have some unanswered ?'s about this so a visit to her specialist is in order before I make a final decision.

In the past 24 hours, I have paid more attention to the "words" she uses and now I see so clearly what I can't believe I missed! 

Duckling is an amazing little girl and she knows no challenge too great to overcome.  We have our work cut out for us and this changes my life direction at the moment...it's just a small hurdle and this too shall pass!

Bittersweet doesn't get better than this!!!

Emu has been on his daily growth hormone shots for almost a month now! 

A few weeks ago, we finally made him his "Growth Board" that I promised him.  Initially, it was going to be just for him, but as it ended up...we are using it to keep track of everyone's growth (we are still debating growth hormone therapy for Duckling).

Our first measurement was on June 23.  Emu was so excited to about making his Growth Chart and he couldn't wait to get his first measurement marked on his board!  He stood so proud, really having no clue the importance of this new piece of wood!

Just 5 days later...we measured him again and to our surprise...he had actually grown in just those 5 days and not just a little either!  Concerned that he may actually be growing too fast...I put a call into his Endocrinologist, but never did get an answer.  A few days later, we found ourselves in the Pediatricians office with our crazy bird Macaw (she has always had a facination with putting things in her ears).  While we were there, I asked the Dr. to measure Emu, as I wasn't too confident in our home measurement.  Amazingly, he had grown a full 2 INCHES since his last visit there!   

Today, just 10 days after we first started measuring him, we decided to have a little fun and see if he had grown again.  He has gained another 1mm since 5 days ago when we first measured him!  He is growing 1mm every 5 days!!  Today, he has reached exactly 3/4 of an inch since we started measuring him!  He has been on his shots for 25 days and at a rate of 1mm every 5 days that equals the 2 inches that he has grown since his Dr. had last seen him. 

1mm every 5 days!!!

 

WOW!!!!! 2 INCHES in just 25 days.  This little guy had only grown 3/4 of an inch in 2 1/2 years on his own.  Bittersweet doesn't get any better than this!  I am amazed and I now know that I DID make the right decision!  Seeing that this has proven successful for Emu, now, the Peditrician is pushing growth hormone for Duckling as well so we will be heading back to the Endocrinologist for a possible growth hormone study for her (I had previously declined the test for her, as her case was different than Emu's).

Success...in our house...sometimes it is measured!
:D