Friday, August 12, 2011

What does this blog have to do with Galactosemia?

You may have asked yourself that question and I tell you that it has everything to do with Galactosemia. It is also our life story on how we deal with Galactosemia. This is our story...

Our first child Alena was born on a rainy November afternoon, in Portland, Oregon. It was the Saturday before Thanksgiving and everything was smooth sailing. In the hospital I saw a brochure that talked about Newborn screening and metabolic disorders. I had never heard about the test, nor even thought about metabolic disorders. I showed the brochure to my husband. Vividly I remember him smiling, and saying what are the chances...come on now. There is nothing to worry about. - For those of you who do not know me, I tend to worry - a lot. In any case, when we were ready to leave the hospital - all packed up, Alena already in her car seat I remembered that little brochure. I asked the nurse whether her heel had been pricked, she double checked and you know what?! It had been forgotten - no problem. We took her out of the car seat for the test and off we went.

We took our baby home. She was a fussy eater - threw up a lot. We kept records of how little she ate. The Friday after Thanksgiving Day we went to see our pediatrician. Something was wrong. Alena was unable to keep any food down. She was dry heaving. - our pediatrician saw us and had a gut feeling that something significantly was wrong. She sent us to the hospital and that is where we were that Friday evening, on Thanksgiving weekend. That is what saved our child! She was immediately whisked away for a spinal tap. The infectious disease physician met with us and started her right away on three different types of antibiotics. Wow - we were stunned, shocked, and in absolute disbelief. Our daughter was diagnosed with what? Classic Galactosemia? We had no idea - the only thing we knew at that time was that she was at risk of developing E.Coli Meningitis...our pediatrician told us to not search the Internet - which Ron still did. By morning Alena had a seizure, the culture grew, and it was confirmed that she had E.Coli Meningitis. Here was our beautiful baby girl on her one week birthday in the Pediatric I.C.U. It was the most scary time in my life! Writing this post puts me back in the same mood and I swallow back tears. There she lay - my little girls - with I.V.'s coming out of her, a catheter, she needed blood platelets...we did not know whether she would survive. I never left her bed side. It what at this time, exactly at this time that Ron and I decided that if our precious baby survived that dealing with Classic Galactosemia would be NO BIG DEAL and we make it manageable. This is what it is manageable and NO BIG DEAL!!! Compared to the other option, even dealing with potential complications is a BREEZE. One can certainly differ with me, however this is my opinion and how we deal with this disorder.

Now back to our story - eventually I also did some online research and one of the most important things to me was to find pictures of older kids living with Galactosemia, and understand what kids with Galactosemia eat. I really did not find much. Things I did find were simply quite frightening - which is why our pediatrician told us to stay off the Internet! So this is the basis of my little Blog. Yes, a diagnosis of Classic Galactosemia is scary, but it is manageable. A diagnosis then gives a couple of options. Stick the head in the sand, become a victim, thrive on things that are not possible; take the bull by the horns, run, dance with it and embrace it. Learn about it, stay positive, and empower. So this is our story, and what this Blog is about. The sky is the only limitation!!!


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