October 2003 Update

by Manny (Angie’s Dad)

“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying.

There shall be no more pain, for the former things have passed away.”

Rev. 21:4 (NKJV)

          It has been a year since our last update, and what a year it has been! We thank the Lord every single day for the miracle of Angeline in our lives. She brings so much happiness into our every day existence and she constantly reminds us what life is all about. She has grown so much, both physically and intellectually; so much that at times I find myself having “mature” conversations with my three-year-old daughter. What a blessing has Angeline being to our lives!

          She is now attending pre-school at Virginia Shuman Young Elementary School, a Montessori magnet program here in Broward County. She loves her new teachers and classmates, although she misses her friends and teachers from the Family Center Preschool, which she attended until June of this year. Angie faithfully attends church every Sunday and Wednesday and is a proud member of the Pioneer Girls, a Christian girl-scouts-like group held at our church, Calvary Chapel Ft. Lauderdale. Cognitively she is an average to above average little girl, still facing some gross and fine motor challenges due to her spina bifida. Nonetheless, Angeline is now able to walk with and without her AFO’s and is getting stronger every day. Praise the Lord!

          Regarding Angeline’s health, the Lord has blest us with an uneventful year. No surgeries, no illnesses, no hospitals, no infections, no shunt problems. I don’t even remember the last time we took her to the pediatrician (hopefully we didn’t forget any appointments). She continues receiving OT and PT both in school and privately, as well as doing Yoga once a week. We started using the TES machine, but we discontinued it after a couple of months since we could not keep up with the consistency needed to follow the TES program. Nonetheless, during the time we used it, I noticed some increased muscle tone as well as marked increased sensation regarding Angie’s bowel movements, to the extend that for four-five consecutive days she was initiating going to the bathroom letting us know that she “had poops.” We plan to start using the TES machine again later this year now that Angie is older and hopefully she (we) will be able to use the program more consistently.

          Emily and Angie have been busy lobbying in Washington, DC for the Spina Bifida cause. Together with other families living with Spina Bifida, they were instrumental in the formation of the Spina Bifida Caucus in the U.S. Congress as well as in the formation and funding of the National Program on Spina Bifida at the CDC in Atlanta. You can read more about this on the September/October 2003 issue of the publication INSIGHTS Into Spina Bifida.

Angeline’s story was portrayed during this year’s 15th Annual Spina Bifida Roast in Washington, DC, honoring Don Hewitt, producer of the news show 60 Minutes. The Roasters were Tom Ridge (Sec- Dept of Homeland Security), Leslie Stahl, Andy Card  (Chief of Staff -White House), and Senator Ted Kennedy. We had a great time and that evening the event raised $350,000.00 destined to fund research to help those living with Spina Bifida. Also, the South Florida Sun-Sentinel published a story featuring Angeline and her mom regarding the importance of folic acid in the prevention of Spina Bifida, especially in Hispanic women.

          We ask all of you to keep us in your prayers and never loose faith, especially during your darkest hours.  Thank you for checking in and we will keep you posted.

God Bless You All,