The Road to Three Miracles
Light at the End of the Tunnel
“I feel so privileged to be here,” said Summer a week before returning to Arkansas. “Last night Matthew fed himself a whole green bean when he used to only want a bottle. It’s just a miracle.”
Dr. Clawson also is thrilled with the children’s progress. She said the boys progressed toward more age-appropriate skills like self-feeding and eating table foods, mom and grandma were able to feed the kids and manage meals without power struggles, and Rebekah learned to chew and swallow, skills she didn’t have when she arrived in August.
Although patients must be medically stable, including having good airways and a safe swallow, Dr. Clawson said the program has accepted children, like Rebekah, who have never swallowed before. “I’ve seen kids do amazing things in this program. You never know until you give them a chance.”
Once the family returns home, they will still have access to the Feeding Program’s staff and expertise. Phone calls and e-mails are encouraged, and video teleconferencing is available for follow-up consultations. Children’s Hospital of Richmond also has a training tape for out-of-state therapists to teach them how to continue working with the children.
Summer plans to continue reinforcing the techniques she learned at Children’s Hospital of Richmond to make mealtimes more pleasant and help her children grow and thrive. “I see light at the end of the tunnel. I feel like such a weight has been lifted.”
Editor’s note: In Oct. 2006, Rebekah started a pre-kindergarten program in Arkansas where she eats lunch five days a week. Matthew and Jacob have maintained their weight since returning home and are continuing to eat the foods they learned to eat while in Richmond. “Because of kids like Rebekah,” said Summer by e-mail after returning home, “and all the heartache we as parents go through with and for them, others learn and learn what works. Jacob and Matthew are milder in terms of Pierre-Robin because we had her as an example. I have great comfort in knowing that even though my kids have been made the example, not the exception, that it was not for nothing.”
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