Trains for Thomas

Trains for Thomas Thomas is a 9 year old 4th grader from Pittston who on January 5th will be undergoing a major surgery at Childrens Hospital Of Philadelphia.

Thomas was born with a rare chromosomal disorder called Sathe Chotzen. This caused Thomas's skull to be malformed. His skull did not grow as a normal child's would. His skull is to small to hold his brain. Right now his brain is pushing against his skull. This surgery is going to relieve that pressure and expand his skull pulling his forehead out so his head will be the normal size of a 9 year olds. This disorder also causes other issues like heart defects (which Thomas does not have) spine and bone issues which Thomas is being evaluated for right now since he has a very severe limp. The constant pressure is causing him headaches. After surgery Thomas will be in ICU for about 5 days. Thomas also has a bleeding disorder that has caused several complications with prior surgeries. This surgery will be number 10. Thomas is a very happy loving little man who loves playing football ( he likes the Eagles even though Mommy is trying to teach him about the Steelers) he loves building with legos, riding his scooter. He has a long road ahead of him but bounces back quickly. He was just operated on in July and even though we had a complications he was back to playing football 2 weeks later.

03/23/2016

We haven't posted anything in a while. Just wanted to let everyone know that the doctor is very pleased with Thomas's hips and he was cleared to play soccer. ☺

12/01/2015

14 days post op and Thomas went back to school today. He wasn't happy about getting up early but he was happy to be back

When he's comfortable he's mobile. Day 3 post op. He has periods of pain and spasms that break your heart. But when he's...
11/16/2015

When he's comfortable he's mobile. Day 3 post op. He has periods of pain and spasms that break your heart. But when he's comfortable you would never know. Evenings and early mornings are the worst times but he is working right through it. One tough cookie

Home and still smiling like the champ he is
11/16/2015

Home and still smiling like the champ he is

Thomas is officially discharged!!!!!!!
11/16/2015

Thomas is officially discharged!!!!!!!

11/15/2015

The pca pump was removed. Which is a step closer to discharge. He had a bath and is waiting for physical therapy . He isn't eating all that well today but he is trying to keep his fluid intake up so the fluids don't start again.

530 am and someone is up
11/15/2015

530 am and someone is up

Thomas got out of bed for a third time tonight and did excellent. I'm pretty sure he wore himself out though
11/15/2015

Thomas got out of bed for a third time tonight and did excellent. I'm pretty sure he wore himself out though

Someone is beyond proud of his recovery. 1 day post op and he was out of bed twice
11/14/2015

Someone is beyond proud of his recovery. 1 day post op and he was out of bed twice

11/14/2015

Thomas got out of bed to a wheelchair. He was able to tolerate that for a little over an hour before a major spasm hit. He worked very hard through obvious pain to get back into bed, but he did with almost no assistance. He is very proud of himself . He said its a lot of pain but I can do it.

11/14/2015
11/14/2015

Thomas is doing good . He was up most of the night. Spasms have started 😥 but he was able to stand up with physical therapy

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Pittston, PA

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