Atley's first birthday was quite a milestone. We threw a huge birthday party for Parker and Atley and Parker ate both the birthday cakes. Atley still wasn't eating at all, had severe stomach discomfort, and wasn't even sitting up unsupported.
Life had become an endless therapy session for Atley. We had in home physical therapy, speech therapy and occupational therapy several times a week. Atley also attended the feeding clinic at Children's Mercy in Kansas City. As always, progress was very slow, but he was making progress, especially in PT. By 18 months old Atley was finally crawling, and he walked not long after his second birthday.
And he's off! Atley crawling around 18 months old. He is hooked up to his portable feeding pump.
As Atley started walking, his low muscle tone made it difficult to control his feet. Leg braces were in order, and Atley stayed in braces for about two years. Also, Atley could not walk any distance at all requiring a wheelchair most everywhere he went.
Atley and his physical therapist try some skating to help him walk.
His left foot is almost dragging; this was helped by his leg braces.
Atley always loved a new set of wheels! First grade, his last wheelchair.
At age 4, Atley needed a third heart surgery to close a hold between the top two chambers of his heart. We traveled to Chicago to have the surgery performed at Children's Memorial Hospital by one of the most qualified doctors for this surgery. The surgery was a huge success, allowing Atley to have more oxygen to his bloodstream, and less respiratory infections. In fact, he has not had pneumonia since this surgery.
Atley's heart during is third heart surgery showing the large metal mesh device used to close the large hole between his atria. The wire loop above is part of where his sternum is wired together.
When Atley was five, we decided his health was stable enough to allow him to finally enjoy a very special event, his "wish" from the Make-A-Wish Foundation. Atley chose to visit Walt Disney World and Give Kids the World resort in Orlando. It was truly a magical trip for Atley and his sisters. Make-A-Wish and Give Kids the World strives to give an ill child's family a wonderful time, as well as, the wish child. Atley was showered with VIP treatment at Disney and Universal Studios, but nothing quite compared to private Disney character visits and meeting Santa at Give Kids the World. After all his surgeries and struggles, it was exiting to have a week of pure magic. The only non-magical moment was the Florida humidity which killed Atley's feeding pump the first night. Luckily, the resort had a backup for us to borrow!
Ariel started a "Princess lip print chain" going on Atley's cheek. By the end of the day, he had 6 princess lip-prints and refused to wash his face that night!
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