Hearing Test

On the 29th, Eva went for a hearing test.  This particular test was different from the others because she was seen in the ER department of the Children's Hospital and was put to sleep.  The test was for an auditory brainstem response evaluation (ABR).  I am going to summarize her report.  Eva was under conscious sedation.  A standard tympanogram was completed prior to testing.  Responses from her test is as follows:

Stimulus	Right Ear	Left Ear
500 Hz	30	20
1000 Hz	20	20
2000 Hz	15	20
4000 Hz	35	20

Results conclude that she has a mild hearing loss for the right ear and is recommended that she have a regular hearing test every 6-12 months during her regular ENT appointment times. 

What this means to me: Well, her hearing can be like anything else, it can either get better or worse so we will continue to monitor.  I was concerned with what the term "mild loss" meant.  Defined by the John Tracy Clinic (www.jtc.org) "mild hears most speech sounds from a close distance".

I must share, when she woke up from her unconscious state, she was very irritable.  They best way to describe her was green slime.  She had no physical muscular body control unless she was contained, hence the green slime.  I was happy to take her home and place her in her car seat.  I knew she would be safe in it.  When we were home, I placed her on the floor.  She was very unstable.  She wanted to walk but her feet and legs could not hold her.  She wanted to stand but her arms and hands could not pull her.  It was hysterically scary, If that even makes sense.  I could only laugh at her lack of ability but consciously wondering how long this would last... an hour, two hours, 6 hours, a day, a week?!? 

Well, eventually, it did go away.  But it took a light lunch, a long nap (4.25 hours), physical therapy (which was actually renamed to laugh therapy for everyone), then dinner and finally, after she was up the next morning, she was back to her normal self.  YEA!

Appointments Update

Thursday we had the pleasure to visit with two different specialist.  The first was with the audiologists.  It was just a follow-up to look into the ears to make sure the tubes were in good standing.  They were and away we went.  Our next specialist was our genetic doctor.  This is a required appointment annually.  We spoke with the doctor and his first question was if the letter we received was accurate.  This letter was dated from last November.  The first item I noticed was that Eva is diagnosed with C17q21.31 microdeletion syndrome.  I told him that the name has changed and it seemed that his reaction was shocked.  He didn't seem to be interested in the new name or wanting to hear about the changes and new findings.  I stated that I was going to email him the recently updated Unique pamphlet.  I will be certain to get that to him tonight. 

Caged marble design

I need to realize and rationalize something.  As pointless as these appointments seem to be, our child must continue to see them because of our healthcare system. And because we want to have these appointments in a timely matter and we get annoyed to resubmit all of our personal information, we continue to go when asked.  And of course because as a parent, we want answers to questions only these doctors should know the answers to.    We want our local doctors to have the power, time, and patience to learn about our children.  Our intentions expect that.  Unfortunately, our experience is otherwise.  Our system is just broken.  As a parent, I have expectations from our "specialists".  As a specialists, I expect you to be able to have that magic glass ball and to predict, from his experience, what our children's future may become.  But, as reality hits, I know that science is far more advanced than our healthcare system.  Doctors now do not seem to have the time to research new material if it was not required to attend or read. 
I will continue to educated my specialists.  I will continue to fight for your right to get services.  And,  I will always let the medical professionals know how much you are changing along with your personal accomplishments and triumphs.