DX Trisomy 21: Sean’s Success Story

Sean’s Path to Wellness in Dad’s Words

Sean age six months

One Saturday morning in August six years ago, my wife and I were blessed beyond measure to welcome our 4th child, Sean Michael. He was about 2.5 weeks early (unusual for us), weighing in at 6.3 pounds and adorned by lots of strawberry blond hair!   He had a really sweet disposition, huge cheeks and was just plain cute.

Over the last few months of her pregnancy, my wife had several ultrasounds and there was an increasing murmur from the doctors about possible complications, chromosomal abnormalities (e.g. sleep and digestive system, Down Syndrome.)  It was all theoretical until Sean was born and we could pretty quickly see that some of his features were a little different. The attending pediatrician confirmed suspicions that Sean had Down Syndrome.  This was a surprise to us but not shocking given some of the feedback we had received in the last 2-3 months.

Baby Sean had cardiological complications

Sean has also had a few medical complications that were a lot more troubling to us.  In particular, there were two areas of Sean’s heart that the doctors were watching closely – so closely that they transferred him and his mother to a Children’s Medical Center to be under the closer eye of pediatric cardiologists.  Just when it looked like surgery was imminent, a bit of a miracle occurred and Sean’s heart corrected itself naturally. Once that happened, he started to feed better, regulate his own temperature better, etc.  A week after he was born, Sean and his mother were able to come home to our amazement and delight!

We started on an optimistic journey

We had done some research on Down Syndrome before Sean’s birth and had read many incredibly inspiring stories about children with Down Syndrome and their parents which give us a lot of optimism in this journey into an entirely new realm of God’s world. Although we gave Sean his name thanks to his reddish hair, we have come to learn that it means “gift from God” and we truly feel that he was brought to us for reasons that will continue to reveal themselves.  Certainly he has already brought our family closer together.  His brothers, sister and our dog, Montana, are eating him up and enjoying his company immensely.

Our wish is that Sean is blessed by good health, surrounded by love and given every opportunity to experience this amazing world.  We expect him to be skiing, camping, biking, traveling, praying and learning alongside the rest of us.

The Early Days

At age six months Sean was still not moving

Since mom is a physical therapist, she knows a lot about the normal developmental sequence and getting kids moving.  Because of this, Sean was always on his belly and often on the floor.  We also took advantage of physical therapy provided to us by our local birth to 3 program, once per week.

Despite being prone for extended periods of the day, Sean’s mobility remained limited without much progression.  His hypothyroidism was becoming more apparent with subsequent lack of energy.

Sean skipped crawling

During the first year of his life, he was also treated for liver congestion.  Once his thyroid was treated, Sean’s energy levels increased and some mobility started happening.  Much to mom’s disappointment, Sean skipped crawling and then developed a three point creep just after he turned 14 months old.

Realizing normal creeping helped to develop trunk stability, and to shape hip anatomy, mom became increasingly concerned.  Research began on how to help children with Trisomy 21 to advance physically and intellectually.   This led her to a book titled, “Naturally Better,” written by a mom whose child had attended The Institutes.  This child had experienced a lot of success with the program in Philadelphia. The Institutes stood out for its holistic, natural and aggressive approach.   A whole new world was opened up to us!

Sean learning to hang from the overhead ladder in preparation for brachiation

Soon thereafter, we bought lots of books from The Institutes including “What To Do About Your Brain Injured Child” and “How To Teach Your Baby To Read.”  Through these initial learnings, we started the intellectual program just after Sean turned one. We had more consistent help when Sean turned two which allowed us to pattern Sean more consistently.

Sean began to creep normally

To our surprise and delight, his creeping normalized!  It was very exciting as a building block to additional movement and we were thrilled!   We can vividly remember watching him creep normally on the beach for a rather long distance; some of our friends were around and we were all elated!

As we continued to see gains from our initial involvement with the program, mom attended the What To Do About Your Brain-injured Child” course at The Institutes just after Sean turned 3.  She wanted to dig deeper and to gather more information.  After attending the course, mom felt we were moving too slowly and was excited to ramp up the program. She also made some great friends who we are regularly in touch with to this day.

Sean devoured all of his new material.

Sean becomes a confident walker

My wife realized she was moving too slowly with the reading program and so upon return she increased the production of books and bits.  Sean devoured all of this new material. Around the same time, our pediatrician approved the initiation our oxygen enrichment program and we immediately saw gains in Sean’s language ability.

Sean loves to read, here he reads a book about geology

After Mom attended the second lecture, we were inspired to take Sean to The Institutes for a full evaluation.  We loved the interaction with other families. As part of the evaluation, they noted he had gained 20 months of development over the past 10 months – we were thrilled!

Solid gains in language, intelligence, physical abilities, sleep and the digestive system.

We continued to pursue the program consistently every day and saw solid gains with his language, intellectual and physical abilities.  Implementation of the food rotation program, focusing on his dietary issues and sensitivities, has had a great impact on his sleep and digestive system.

For more than a year now Sean has been on our home program.  He has been thriving with his running, jumping, hiking, brachiating as well as his intellectual program.

Now that is brachiation – well done Sean!

For the past several months, we’ve been following a program with Sean running 1 mile each morning and hiking or walking a mile every afternoon. We do this in virtually any weather and Sean has adapted himself remarkably.

Sean is physically strong and fit

In fact, in recent weeks for the first time he broke a 13 minute mile and hiked for two hours straight. His balance has improved significantly. His footing on varied types of hiking terrain whether rocky, filled with roots, muddy, uphill or downhill…is very solid. It’s exciting to think about the future.

We have received great support for our program efforts from our three other children as well as some very enthusiastic mother’s helpers.

The family is the answer: Sean’s team

Sean loves to read and is a whiz at geography, knowing the capitals of each of the United States, as well as every country in South America, Latin America and Europe with Asia and Africa on his hit list. He loves to sing along with music and it is great to see the improvements in his language. Sean loves to play board games, card games and electronic games, when we give him the opportunity.

We are excited about the future

Our implementation of the program has not been without some challenges and struggles but it has all been worth it in the end.  We are so grateful that we found The Institutes, the great professionals who comprise it and the wonderful families we have met along the way.  We are excited for the future and very thankful for the support we have received along the way.

Sean teaches dad how to use the tractor to mow the lawn