Moving Forward with Spectrum

The Spectrum Pediatrics Team evaluated Joy in April and deemed her medically stable and ready for tube weaning.  This was not a surprise since Joy no longer vomits during her feeds and has been eating some formula and pureed food.  She just doesn't have the interest or drive to eat a lot.  They also remarked how Joy was receiving WAY too much formula through the tube, which suppresses her appetite.  We already knew this when Joy was at Georgetown Hospital.  The doctors were pumping 30oz of high concentration formula/day through the feeding tube, despite the fact that we told them she was gaining weight at 18-20oz/day of regular concentration formula. The feeding team at Children's Hospital also came to the same conclusion.

With the support of many of our friends and family, we have secured a spot in the Spectrum Program that will be begin on June 24.  One of the program requirements is that we stay close to their office in Alexandria, VA.  We will be staying with our friends, Gabe and Erica Yu, who have kindly let us live/crash at their place while they are on vacation. Amazingly, they live ~5 min from Spectrum.

Months prior to making this decision, we told our doctors and therapists that we would enroll Joy into the Spectrum program if she didn't dramatically improve with traditional feeding therapy. Joy has made tremendous strides but still needs more time, which is unfortunate because our insurance coverage for feeding therapy is coming to an end. The good thing is Dr. Chatoor from Children's Hospital has heard of Dr. Marcus Wilken, the child psychologist/health educator who is part of the Spectrum Pediatrics Team, and other members of the Children's Hospital Feeding Team have also heard good things about Spectrum. We know we have their support and we are also thankful that Dr. Weich, our pediatrician, will serve as a medical advisor to Spectrum during the tube weaning.

We prayed about it and ultimately made the decision to move forward with the program because we are convinced that Joy needs an "intervention" to correct her relationship with food.  Through months of food-associated pain, gagging, reflux, and vomiting, Joy learned that food is the reason for her suffering.  There are times when she is really excited for her food but most often she seems to "tolerate" eating.  Other times, she looks scared and anxious.

We need Joy to learn that food is a wonderful thing to enjoy.  Based on what I've read and heard from other mothers, it will be intense and rough for everyone.  Joy will be starving, whiny, cranky and her sleep cycle will be off.  We will have to love her even more while at the same time, stay calm and avoid fighting with each other through the sleep-deprived days/nights and stressful situations.

We believe Joy is smart enough to figure it out.  As of now, she drinks about 3-6 ounces of diluted formula per day, in contrast to the 25+oz for babies her age and weight. That's already a major improvement.  Before therapy, she would not even open up for anything and would gag at any attempt to feed her.  She has even mastered the skills for a sippy cup and loves water!

Please pray for us as we prepare for this program.  Pray that Joy will learn to love food and that we can be strong for her.