Just a Bump in the Road :)

Duckling entered into an unfair world of uncertainty, in more ways than one!

Since the day she was born, she has overcome every challenge that has been laid before her and those who know her know how MANY obstacles she has had thrown her way.  Just when she overcomes something, a new detour is put in her path and the bigger she gets, it seems the bigger her challenges get. 

At a quick glance and to those who do not know her, you would never know that she is any different from any other little girl.  Even to some who do know her, they are too blind to see the difference.  She looks and acts just like everyone else, although, she seems much younger than her actual age and most everyone forgets that she is as old as she is and often, I've had friends or family members say to me "Are you sure she is deaf"? simply because she is capable of reacting to sound.  It's extremely difficult for people to understand her hearing loss.  She is deaf in one ear and currently has normal hearing in her other ear...they think that means she has normal hearing.  

She has had many other health issues unrelated to her syndrome and she has been in and out of different therapies since she was born.  She is currently followed by 9 different types of specialists, so needless to say, she keeps us very busy! 

She was fitted with a traditional hearing aid when she was 5 months old.  A little more than a year ago, she began refusing to wear it and in addition to that, her general safety had become a growing concern (she was unable to hear us warn her that she was getting too close to the street and it was difficult for her to be fully aware of our whereabouts when we are out in public).  A few months ago she underwent further evaluations.  Her hearing test confirmed that she no longer had any usable hearing on her aided side, so there was no way to "make" that ear hear.  She also underwent an updated speech and language evaluation and it was determined that she was severly delayed in her language.  At 41 months she was testing at a 19-24 month level. This severe of a delay is not typical for children with a unilateral hearing loss or for children who suffer from her syndrome.  Recently, she was fitted with a bone anchored hearing aid.  The hope was that she would be more aware of her surroundings, her safety would not be as big of a concern and that with extensive therapy, her language would improve.  Initially, she did wonderful with the bone anchored hearing aid.  We noticed a remarkable improvement immediately.  Her hearing was tested and she tested in a "normal" range.  This was a very short lived experience and it seems that we have taken a step backwards once again.  She has a great deal of difficulty when we are in a public place.  We are becoming more in tune to her behaviors and others people who spend a lot of time with her are beginning to notice things as well. 

Yesterday, she was evaluated by an Auditory Therapist and a lot of things came to light!  After 2 1/2 hours of testing and being fed valuable information, so many things began to make sense.  A lot of the things we went over were nothing more than review as we have dealt with these things for almost 4 years now, but there was so much new information as well.  We know that she "can" hear with her Ponto system, however, it has been discovered that there are issues with her Auditory Processing.  Her biggest challenge is that she is unable to hear adequately in a noisy environment and this often compromises her safety, both at home and away.  She is already losing independence and is lacking confidence and the ability to handle outings in our normal daily life.  No hearing aid will ever "fix" this problem.  We are exploring the possiblility of obtaining an FM System, but since we are not sure if she would be able to process the information she hears, this may not be the answer, so a service dog may possibly be in her future! 

 

It is always difficult to hear what we already know!  I watch my daughter everyday and I have always known that she lives in her own little world...but when a specialist tells you "she lives in her own world"...it really hurts!  In the process of normal developement, children hear what is going on in the world around them.  As parents, we speak differently when we direct conversation to our little ones as compared to when we are speaking to someone else.  Children take in everything they hear.  Duckling does not have that same advantage.  Duckling only hears some of what is directed towards her and what she does hear isn't properly processed.  We are now learning that some things we may have thought were behavioral are actually problems with her ability to process what she hears.

 We have to keep moving forward and learn all that we can along the way. It will be quite some time before we will know if she actually has an auditory processing disorder.  For now, what we do know is that her brain is unable to block our unimportant noise so that she is able to hear what she needs to, she is unable to correctly process all of what is being said to her, she is unable to recall information and she is already having problems with subject/object reversal, etc. and the odds are against her because statistically, she is 10 times more likely to fail a grade in school than a child with normal hearing and over one-third or up to 40% of children with UHL fail one or more grades.  Luckily, as homeschoolers, we will be able to cater to her every need.  We will continue to be aggressive with doing all we can do for her and to ensure that she will develop to the best of our ability! 

   

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!