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Tuesday, January 29, 2013

A NEW New Normal

Just about a year ago I wrote a blog called "A New Normal" http://jennifer-ohfortheloveof.blogspot.com/2012/03/new-normal.html where I talked about being blindsided by Claire's diagnosis with asthma.  And truly I was blindsided.  I felt like I won and lost and won again the title of "Mother of the Year" when the doctor told me she had asthma.  How could I, as her mother, not notice the signs and symptoms of such a debilitating condition ~ the cough, the wheezing the labored breathing.  I just didn't notice. Was I that oblivious?  I never thought I was oblivious, but there was the diagnosis, in black and white, telling me I missed so many symptoms.

It's been almost a year since I took her to the doctor to find out why she couldn't breathe at swim practice or at meets.  And in this past year I, we, have noticed no improvement in her ability to breathe.  There have been no vast changes in her as she swims at practice and in meets.  She has still had scary episodes where she desperately needed her inhaler.  I don't like it when I don't see progress in my kids after they have they have been diagnosed with anything ~ from ear infections to ADHD to asthma.  I want to see improvement and with Claire there was none.

Little alarm bells started ringing in my head when I talked to my girlfriend whose child has asthma.  They sounded even louder when I talked to my girlfriend whose son has CF.  Claire was being treated by her pediatrician, whom I absolutely adore, but after talking to my girlfriends I decided it was time for a visit to someone who specializes in breathing disorders.  The alarm bells weren't getting any quieter as time went on and there was no improvement, it was time for a trip to the pulminologist.

God love this man.  He spent two and a half hours with us or working for us, and he got to the bottom of Claire's breathing disorder.  So, no, she doesn't have asthma.  And thank God!  Because as you know, it's all about me, and I can't accept the fact that I won and lost and won again mother of the year with Claire's asthma diagnosis.  After tests and chest X-Rays and a thorough exam of Claire.  Dr. Elliott, to me the world's greatest doctor, told me that Claire has Vocal Cord Dysfunction.  OK, not exactly what I was expecting but, truly, I had no idea what I was expecting so at least Vocal Cord Dysfunction gives us a diagnosis we can use to move forward and away from meds that weren't doing any good.  I hate over medicating, so my love for this doctor, who I have to say looks like Santa, knows no bounds.

I know now that we have a NEW new normal.  And I can't tell you how very thankful I am that I listened to my gut and went ahead in trying to get to the bottom of what is really wrong with Claire's breathing (I won't bore you with all of the details but it's fairly interesting disorder that has been under-diagnosed or misdiagnosed with asthma which is why it's not heard of often).  I don't like medicating my kiddos when I don't have to.  I don't like not seeing improvement when they are medicated.  And I don't like it when I think I've totally screwed up and missed seeing something I think I should have seen.  So, I guess I'm feeling a bit vindicated.  I didn't miss something.  I was right to think we were over medicating and that something wasn't right with an asthma diagnosis.  We might have a NEW new normal but at least we're on the right path and can get Claire the proper help she needs.  My girlfriend whose daughter truly has asthma said that diligence is good when it comes to our "motherly gut instincts."  I have to say I think she's right and now we can move forward.

For the love of Claire....

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