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Blessings In Disguise

Paving the Way…

One Step at a Time

Tonia Drake

Constantino Tejeda

Two weeks after our oldest daughter's first birthday, the eight EPTs I took and the doctor's blood test said I was pregnant. I called the doctor right away. We worked out a plan, and my husband and I saw a genetic counselor and got the Amnio as soon as possible.

I think it was late summer or early fall of 1997 when we got the phone call from our genetic counselor. She happily announced "You're having a girl!" I smiled and wondered what was next because her voice didn't sound like she was done. "Tonia, I need to let you know the new baby does have salt-wasting CAH, just like Abby." The rest of the conversation was a blur. I left my office, promptly cried and asked my boss if I could go home.

When my husband got home from work with our one-year-old, he found a blubbering mess. I told him the news. We were both overcome with emotion. Not because we thought there was anything wrong with Abigail ("father's joy") but because we had been so overwhelmed with the care she took—the worrying, the doctor and ER visits, and the financial strain. How would we do it with two! After we put Abby to bed, we prayed and prayed—hard—together.

The months went by and finally Gabriella ("gift from God") was born. She was beautiful—a shining light! Things were tough at first. Many times we would be at the hospital with two children. But we noticed something as the girls got older: their bond with each other. They seemed at an early age and even at eight and ten to develop their own secret way of communicating and supporting each other.

In July of 1999, Ellie woke us at 4 am with a gurgling cry. Her temperature was 106.7, she was convulsing and threw up on herself. Brett called our (volunteer) fire department and they told us it would be 10 to 15 minutes before they could get to us and could not administer any medications or IVs. I injected Ellie with Solu-Cortef and drove her to the hospital myself, knowing I could get there sooner.

Ellie was admitted immediately into the PICU and it was determined she had an ear infection that had spread to her blood stream (septic) and was resistant to everything but the strongest antibiotic available at that time— vancomycin. On her second day in the hospital, I was awakened by the nurse very early. She said, "Your husband is in the ER…" I was trying to wake and figure out why he would be there! Then she finished her sentence, "Abby has a very high fever and is vomiting profusely. I can stay here with Ellie if you want to go down." I went down and there was my Abby, looking just like Ellie did two days before. They made an exception in the PICU and put the two together in the room.

It turned out, after testing everything under the sun, that there was nothing diagnostically wrong with Abby! The endocrinologist had a theory that the stress of her sister being in the hospital and their connection with each other, sent Abby into a full blown crisis. I was glad to hear she was okay.  They eventually downgraded the girls and kept them together in a room (even though Abby was fine) and they were discharged together. It did wonders for Ellie's well being.

This is one of many similar stories, but the one that stands out in my mind the most. When the girls get blood draws, they hold hands and do rock, scissors, paper to see who will go first. When one is sick, the other takes a quiet place to pray. When one needs an injection, the other is getting a popsicle and holding her hand with encouraging words.

I look back to when Brett and I thought we couldn't do it, and realize God gave us the gift of two because He knew not only could we but they could. My friends ask me all the time if they fight and drive me nuts. For the most part, they don't. They continue to have a bond that is unexplainable to most.

And I realize that when I was questioning, I was given a gift and a blessing in disguise!

Now is a good time to make mention of the magnificent conference that CARES hosted on November 12, 2006 in New Jersey. This event surpassed my expectations of CARES and their ability to organize an international conference of this level. In attendance, were the medical experts within the fields of endocrinology, gynecology, and psychology. Each speaker displayed skillfulness in their specialty, and it was amazing to see the enthusiasm of each parent to learn more about CAH and give their children better care. We were fortunate to instantly reap the benefits of this conference; within three days after the conference our little son, Alan, had an adrenal crisis and was

on the verge of death. Fortunately, my wife who also attended the conference learned the steps to take in case of emergency. Our eternal gratitude goes to the CARES Foundation – through this conference, their constant guidance, research, and services, we today have our beloved Alan Scott Tejeda back home safe and sound.

Haciendo Camino Al Andar

Constantino Tejeda

“Por sus frutos los conoceréis,” es  na frase bíblica que con el paso de los años adquiere más notoriedad. Y tengo la certeza que forma parte de la filosofía y misión de CARES Foundation. Es digno de admirar y reconocer el papel que esta jugando esta fundación dentro de la comunidad de los niños afectados de CAH. Sin lugar a discusión CARES Foundation se ha ganado un sitial preponderante en la sociedad porque a pesar de tener poco tiempo a llevado a cabo una labor amplia y grande a favor de los niños afectado con CAH y sus padres; y porque su misión a tras pasado fronteras y su brazo humanitaria se ha extendido a una gran parte del planeta.

Oportuno es el momento para hacer mención de la majestuosa actividad que llevo a cabo la fundación el día 12 de Nov. 2006, en el estado de NJ. Donde se dieron citas las grandes autoridades medicas dentro del campo de la medicina endocrinológica, ginecología, y psicológica. En este evento se puso de manifiesto la capacidad de la fundación y de si material humano para organizar un certamen internacional de esta magnitud; también la pericia exhibida en el manejo de los temas de cada conferencista; y el entusiasmo de cada padre de saber mas sobre CAH para darle un mejor cuidado a sus hijos. Para fortuna nuestra los resultados de la actividad surtieron sus efectos al instante; pues a los 3 días después de la actividad mi pequeño hijo, Alan, presento una crisis adrenal y se vio al borde de la muerte. Gracias a la destreza de mi esposa que estuvo en la conferencia y aprendió como proceder en caso de emergencia. Nuestra eterna gratitud a CARES Foundation; pues por medio de esta actividad y el trabajo constate de orientación e investigación que están propiciando por diferente medios; hoy tenemos a nuestros querido Alan Scott Tejeda de regreso a casa sano y salvo.

**Originally in Spanish. Translated to English by Mariel Vargas.

Letters:

NEW Medical Alert Card Really Works

I wanted to thank you so much for the Medical Alert card for adrenal insufficieny and steroid dependence. I went to the hospital yesterday due to projectile vomiting and high fever. I was able to advocate for myself with the card. Without the card I would have waited for 3 hours to get into the ER. I got in right away. Thank you so very much again. The organization can truly save lives.

- Robyn

(Maryland)

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