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Friday, August 27, 2010

Where Do I begin?

...I guess the first thing I should say is that Taylor is fine. It is official, T has Recurrent Juvenile Parotitus (JRP) aka the faux mumps. This is a fairly innocuous disease that usually resolves itself by puberty. T's parotid gland (a saliva gland around the bottom of the ear on both sides) may swell a few times a year, accompanied with perhaps a mild fever and general feeling of malaise for a day or two. She'll get tylenol. This disease is very very rare, and is more prevalent in boys than girls.

You may recall that we went for an MRI recently, and were referred to a Pediatric ENT. Our appointment was Aug. 18, the day my mom came home from the nursing home. Also the day of kindergarten orientation and book buying. As I said, the day for the perfect storm. Oy, those words were prophetic.

During the ENT appt, I mentioned to the doc that the infectious disease dr who referred us to him, said it was most likely JRP. The ENT doc said he may be right, but to get a conclusive diagnosis, alot of other scary diseases had to be eliminated first, namely HIV.

The ENT doc said he didn't want to scare me, but he had to let me know that the odds of T being HIV positive were much higher than the odds of her having the rare JRP. Gulp. But she was tested negative in china, and also negative in the US at 11 months. Doc said that was too long ago, he's seen cases wherein children exposed during birth (which would be T's most likely exposure), don't test positive for years. Also, the HIV test is not 100%. A recurrent swollen Parotid gland is usually one of the first manifestations of HIV.

So, Dot and I have been living for the past 7 days with the very real possibility that my beautiful child was HIV positive. While that would in no way change our love for her, it would definitely have very negative affects on her future quality of life. I was very upset but holding it all together for the first few days. Then I made a crucial error...

I decided that if this is a possibility, I better start reading up on it to see what would be in store. While it is not an immeidate death sentence like it used to be in the 80's, there is NOTHING good about it, especially in children. Therefore, since this impromptu internet research, I was a basket case. I also started researching HIV and China. Nothing good learned there, either.

Luckily, the blood test results came in on Wednesday of this week. T is negative for HIV, Lupus, arthritis, Sjodren's disease, and a bunch of other stuff I didn't even understand. She is basically a healthy little girl. Its funny, but it wasn't until after the doc told me the good news on the phone that I truly lost it and couldn't stop crying, actually bawling obscenely for quite a while.

I picked t up from school, went home, and called a friend over. I then proceeded to get drunk on the most delicious and decadent concoctions of Baileys, Kalua, Vodka, milk. Yummy!

I'm also the happiest mom on the face of the earth. All in all at the end of the day, I must say that this experience, though harrowing and awful, has had a silver lining. I am now so much less stressed about my parents' situation. I really do have a much better outlook where they are concerned. I can now truly say that as long as my kid is healthy, I can deal with anything.

Everyone at work was very supportive, and a coworker brought in a delicious chocolate cheesecake today, in celebration of the negative results. So, there you have it. I have emerged from the 7 darkest, most dismal days of my life stronger and emotionally healthier. Who would have thought that?

While I usually support cancer and alzheimer charities, I'm now adding pediatric HIV to the list. I know that the list of deserving charities is endless, but no one should have to live with that terrible disease.

5 Brilliant Comment(s) from Friends:

Connie said...

Tears in my eyes, a lump in my throat - this is just to emotional. I can understand the stress and turmoil you and Dotty have been under this week. Better and brighter days ahead. xox

park it said...

OMG - thank God that all turned out ok - poor you and Dot - I can't imagine ! Yea T - glade that you have a silver lining to look at - and who knew about the whole - lets test again thing...oy as you say!!!
Big Hugs!

Alice said...

I am so happy for you! Maybe this will be a turning point in your life...and things around the corner will be brighter! Enjoy this wonderful news!

Laura said...

Wow. Hugs, my friend. Made me cry too and happy that all - at this moment - is well.

Tammie said...

So glad to hear that things are turning out in a positive way for T. I can only imagine how scared you were.

A marvelous plan was made in the stars,
to create a miracle across the ocean so far....
Then entwine and weave all the hopes and labor,
it would take to bring us this joy called "Taylor"....
Now three lives are blessed and somewhere in the stars,
the planners are smiling, as we all are.
-Anon.




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