Thiago's first week in Utah

After a long flight and so much wonderful help from so many people, Thiago finally arrived in Utah! The past week has been super busy and overwhelming. Thiago was accepted to be seen at Shriner's hospital, and we have already been working with Dr. Carey, the geneticist that specializes in treating rare conditions like Thiago's. Besides Dr. Carey, we have seen a nutritionist, neurologist, orthopedic specialist and physical therapist. They have also begun several tests to evaluate his bone density and blood, an EKG and x-rays to check up on how his previously broken leg is healing. The hospital staff has been great, and we are so grateful for all they are doing for Thiago. We owe a huge thanks to all those that have helped Thiago get to this point, so THANK YOU!

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Después de un vuelo largo y tanta ayuda maravillosa de tantas personas, Thiago finalmente ha llegado a Utah! La semana pasada ha sido ocupadisima. Thiago fue aceptado en el hospital Shriner's, y ya hemos visto al Dr. Carey, el genetista que se especializa en la patalogias de Thiago. Ademas de Dr Carey, hemos visto a la nutricionista, neuróloga, ortopedista y fisioterapeuta. También comenzaron con unos análisis de densitometria ósea y sangre, un electrocardiograma, y rayos-x para ver como se esta recuperando su pierna que se quebró en Mayo. El personal del hospital ha sido buenísimo, y estamos tan agradecidos por todo lo que hacen por Thiago. Debemos el agradecimiento también a todos quienes han ayudado a Thiago a llegar a este punto, entonces GRACIAS!

On my way to Utah! - Airport Welcome

Well, it's official, we have begun our long trip to Utah, and what a way to start. 

It was incredible to see how much the American Airlines employees prepared for Thiago to make his trip special. They decorated an exclusive check-in that was set up just for him. All along the way to the plane there were decorations, and at the gate, there was a balloon arch. Inside the plane were more surprises like a bed with his name on the pillows and blanket, along with balloons and other decorations. 

They also gave Thiago a special card signed by the pilots and the other employees too. It was so moving to to see all the special things they did, and how happy and excited everyone was as they interacted with Thiago. 

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Es oficial! Comenzamos el viaje largo a Utah, y que mejor manera de hacerlo. 

INCREIBLE todo lo que han preparado y como se interesaron por Thiago los empleados de American Airlines. Prepararon un Check-in exclusivo para Thiago, hicieron carteles con su nombre, globos, entre otras cosas. Cuando llegaron al Gate de acceso al Avion hicieron una arcada de globos y todo el camino hacia el avion estaba decorado, cuando entraron al Avion tambien tenian muchas sorpresas... le hicieron una manta/frasada/colcha, que tiene el nombre de el, tambien les hicieron alguna almohadones con su nombre, globos y muchas otras cosas dentro del avion. 

Tambien, los pilotos le regalaron como una carta especial con unas palabras para Thiago y la firma de todos los empleados de la compañia. De verdad que fue emocionante llegar al aeropuerto y ver todo eso, lo contentos, animados y entusiasmados que estaban esperando a Thiago.

Decision to go to Salt Lake City

Thiago has made huge advances, but his condition and risk of dying still remain. He continues to surprise us and the doctors that treat him, and that keeps us going. In Uruguay, we know of only 2 trisomy 13 cases and no one trained in treating his rare condition. Thiago's next step is to visit specialists in Salt Lake City, Utah. We are nervous and excited all at the same time for Thiago. Our current plan is to arrive in Salt Lake at the end of August, and stay for a month to see as many specialists and therapists as we can. We have so much to do to get ready!

Physical Therapy in Chile - huge steps for Thiago

Additional visits to Chile were instrumental in helping him sit up by himself, stand by himself, and take his first steps. The advances he has made may seem small to some, but for us they are amazing feats. Simple things like being able to sit by himself on a chair without falling over are small victories that improve his life so much. Over the years we have made several trips, and each has helped so much. Each trip costs several thousand dollars, so we are so grateful for all those that have helped us make it a reality!

Thiago begins to travel to Chile

Physical Therapy has been instrumental in helping Thiago. When Thiago was 3, we traveled to Chile to see a therapist that helped Thiago a lot. Before traveling there, Thiago was very weak and unstable, but by the end of our first trip, he was already supporting his own head. This was a huge step for Thiago!

The Early Years

Until Thiago was 2 & 1/2 years old, he had a feeding tube in place. This was very uncomfortable for Thiago, since the tube had to enter his mouth and reach down to his stomach. He grew, but his developmental steps came very slowly. Thiago is very loving person. In the beginning, he didn't move a lot, but once he learned to move his hands, the first thing he does when someone approaches is to reach out for a hug.

Thiago's 1st Birthday!

In our family, each birthday isn't just another year gone by, but another year that Thiago has prevailed. 90% of children born with Trisomy 13 don't make it past the 1st year. For whatever reason, we have been blessed to continue to have Thiago in our lives.