Monthly Archives: August 2010

The Year of Thomas—An Update

October 1, 2009 Thomas was 13 months old.

“Is everything correct?” the receptionist at Boston Children’s Hospital asked me while checking in. Thomas was scheduled to see one of the many specialists we would get to know so well over the next months.

I quickly scanned the medical information sheet:

Name correct. Check
Birthdate correct. Check
Address/Phone correct. Check
Insurance correct. Check
Reason for visit: Failure to thrive. Not check.

I wanted to say, “No that is not correct.” Reading those words made it the most real to that point.

I have to say, reading that was heavy. Thomas, who had weighed a whopping 15 pounds at 9 weeks had stopped growing months ago.

Many months and dozens of tests and hospital visits later, Thomas was diagnosed with growth hormone deficiency. We were actually somewhat relieved to hear the news as there were much worse (fatal) possible diagnoses. Growth hormone deficiency is treatable with very high success rates. Thomas is now doing so well. His low muscle tone, growth and weight are improving with nightly growth hormone injections (administered at home by Mom and Dad) and weekly physical therapy.

A List of the Specialists, Health Care Providers, Cheerleaders that have helped Thomas get to this point:

Dr. Qian Yuan, our pediatrician and GI Specialist, who touches foreheads with Thomas at the beginning of each visit. He helped us navigate the vast medical fields on our journey seeking help for Thomas. He would often call to see how Thomas was doing and to get updates. 
Erin Rosner, our physical therapist, who came to our house weekly, month after month, and lovingly encouraged Thomas to crawl and eventually take his first steps. She thoughtfully taught us (Mom, Dad, Stewart and Ella Sophia) so we could be better advocates for Thomas throughout the week by encouraging his exercises. She is forever endeared to us.
Dr. Nina Ma, our Endocrinologist who patiently assisted and educated us.
Neurologist and a gentleman, Dr. Robert Wolff
Geneticist, Dr. James
Cardiologist, Dr. Susan Saldeb
Orthopedic Surgeon, Dr. Seymour Zimbler
The gentle nurses at Boston Children’s who administered the Argenine Test and the clowns who entertained Thomas during the 7 hour long test.
Stephanie Regan, our delightful Speech Therapist.
Susan Webb, the Endocrine Nurse at Boston Children’s who taught us how to mix and administer the growth hormone. She was warm, funny and just whom we needed to introduce us to our new daily routine. Liz doesn’t like needles and blood. In fact, she took an EMT class in college to help her get over it. Apparently she needed a little more exposure to complete her tolerance. 
Thank you Heavenly Father for supplying peace along the way. You told us that Thomas had an important mission on this earth and would thrive. Thank you grandparents, aunts, uncles, cousins and friends around the world praying for Thomas.