Tuesday, July 21, 2009

Happy Birthday, Alyson Re-Post

Please read for some important health information.

(I want to re-post this entry. Sometimes I'm in a hurry so I don't take the time to read all the post, and this is sort of a long one. I just glance at the photos and on I go. But today, please know this is not just me showing pictures of my girl, it's important medical information that can save a life. So now, the rest of the story...)

Twenty-nine years ago today, we were living in San Antonio. We left Missouri to be "grown-ups", on our own, except it was hard for me because I missed my family so very much. While we were there our little Texan was born, Alyson Leigh. I remember thinking about names for the baby. At that time, sonograms were not the norm, so we didn't know the gender of the baby. I would look through the newspaper every Sunday in the society section and all the beautiful engagement pictures, weddings, graduations, all seemed to be about the elusive "Allison". Not wanting to TOTALLY follow the crowd, we chose "Alyson", a different spelling, but still the quintessential "society" name.

My favorite senior portfolio picture.
1997




Alyson and her cousin, Spencer, at her wedding, August 2003.



This photo above is one of my favorite random shots.
Sorry for the fuzziness. I had to enlarge it.

The picture below is with Grandpa, my dad,
at Mom and Dad's home here in Missouri.

It looks as if she has a little boo-boo on her head. She was very active.
Always jumping and bouncing and often ending up hurt, because of it.




An Easter photo in her little sailor dress.


This post has a little serious side to it, which I want to share because this affected Alyson's life and wellbeing, along with the rest of us. I"ll try to keep this as short as possible. PLEASE read the rest of this post, as it might save the life of someone you know or love.

Alyson was born 5 weeks early and weighed a little over 5 lbs. We took her home 2 days later, but she had problems feeding and keeping formula down. At one point after a bottle, she choked and turned blue. We called the paramedics, but she would not have made it had I not just washed out an old nasal syringe. I cleared her nose and throat, and she recovered her breathing. Because she was so early I didn't have her room finished, nor any baby items in place. I had had a really rough pregnancy, and I felt lousy most of the time, so God timed my one day of early preparation, when I found a box of some of Erin's baby things, washed them and put them away.
She vomited daily, and we took her over and over to the pediatrician, but they said, early babies sometimes had problems with their digestion, so it was dismissed.
Fast forward 26 years and many distressing times. Aly had many upsets in her life, and growing up complained frequently of digestive problems, nothing ever showing up at doctor's visit.
Three years ago another problem started. She had numerous skin rashes; problems with eczema on her hands and face, which at times looked as if she had been burned with an iron.
She had to quit a job because she felt so horrible all the time, but remained a "trooper", trusting God for healing. She saw doctor after doctor with tests, tests, and MORE tests. I started going with her to talk with them, hoping they would take this more seriously, and that maybe I could shed some light on some of her "history". So finally we got to an Endocrinologist who was baffled and ready to give up. By this point I was "mad, and I'm not going to take it anymore"!!! I was hurting for my baby, and I was darn well going to get the answer! Finally, an obscure test was done as a "last resort" sort of thing.


Praise the Lord, an answer.

Apparently "House" was the only doctor who knew the answer to this medical mystery, as we saw on TV last year. Alyson was diagnosed with a blood disorder called "Hemochromatosis", which is hereditary. (our older daughter, Erin, does not have it) This physically causes her not to be able to process iron in foods and supplements. She literally was being poisoned because of it, as the iron build up starts to corrode organs and tissues. This diagnosis answered so many of the questions concerning her health through the years.
Untreated, the prognosis is early death, usually in the patient's 40's or 50's. Undiagnosed, this condition causes illnesses that begin to cause doctors to tune them out, or just think they are hypochondriacs. This condition has only been known about since the early 90's. Until then, people would go through their lives miserable, sick, hurting, and not knowing why.
So don't give up on getting an answer to your medical and health needs, stick with it and pound on the doctor's door. And if a child has serious vomiting that lasts, look into this medical issue.
She now is much better, as she limits drastically her red meat, and takes vitamins without iron. Occasionally she needs to have blood drawn, which helps remove some of the iron. All in all, she's back at a job, feeling good, and loving her life.

Thanks for letting me share. I love my beautiful daughter and know she wants others to be aware of this condition for diagnosis and management.

BE RELENTLESS in getting the answers you need.
Debra

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