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Tommy2 My name is Sue Bates and my husband, Tom, and I live in Middletown, PA.  We have two great kids, Emilee, 18, and Tommy, almost 15, with RTS. Tommy was born on March 28, 1984, a healthy 6 pounds 11 ounces.  Even though I knew something was not quite right, nothing was even suggested.  He was born with the broad thumbs and great toes, but they were not angulated.  He did have a difficult time sucking.  We were sent home thinking everything was fine and left to deal with his feeding issues ourselves.  I nursed Tommy and he gained weight slowly. At 3 months, he started having severe diarrhea and the pediatrician recommended soy formula.  It was thought he could be allergic to milk products. He did very well on the soy, so I discontinued nursing.

Tommy had several ear infections in the first two years. He sat up at 7 months and walked at 15 months.  At 18 months we took him to Hershey Medical Center for an evaluation.  They examined him and ran every test possible without deciding on a diagnosis.  They had sent records to other doctors and still could not agree on any one syndrome.  We decided a diagnosis was not that important since he was healthy and we took one day at a time.  He was such a happy little boy and a joy to the entire family.  He could make anyone smile! 

When he was almost two, he started going to Easter Seals where he continued until age 4.  Then he started in a pre-K class run by the Intermediate Unit, but in a classroom in our school district.  He continued in the IU, in classrooms leased from area districts until age 7, when he returned to a class run by our district.  He's remained in a self-contained learning support classrooms within our district.

Tommy1 Finally, when Tommy was 10 years old, his pediatrician recommended we take him to see a pediatric neurologist. This doctor walked in, looked at Tommy and told us he had RTS.  We had our diagnosis and were fortunate enough to find the support group and the email group.  What a difference it has made in our lives.

Tommy is now in the eighth grade in a self-contained learning support classroom in the middle school.  He enjoys school and we're in the proces sof planning for high school.  We are very fortunate that Tommy is verbal and has needed no surgeries.  He has had one elective surgery, a VP flap was done by a plastic surgeon associated with the Lancaster Cleft Palate Clinic to help reduce the nasality in his voice.  His dental work was also done under anesthesia.

Next year will be an adjustment for us as Emilee will be going off to college and Tommy to high school.  There is never a dull moment around here, Tommy keeps us stepping, hopefully one step ahead of him!  He loves Nickelodeon, jigsaw puzzles, hidden pictures and (unfortunately) ripping magazines.  Having Tommy has certainly been a learning experience for all of us, a positive one for the most part.  No matter what your mood, Tommy can make everything better with that huge smile and a big hug. We cannot imagine life without him!

Tom, Sue, Emilee and Tommy Bates

We can be reached at tlbates@paonline.com