Well we have always know there was something unique about Porter’s arms but we just weren’t sure what it was. They have always sort of turned backwards a little too easily. When we were in Texas they used little soft braces on him at night to help him gain some flexibility in his arms which helped. At Porter’s last dr appointment the developmental specialist noticed that it appeared that a bone was sticking up more than it probably should. This was only the second time in 6 months that she had seen him so to her it was alarming, to us it’s something that’s been there forever- maybe just a little more prominent now that he’s not so edematous. She suggested we take him to an orthopedic dr to have his arms examined and set us up with a dr at UNC. We saw him yesterday and they took some x-Rays of Porter’s arms. As it turns out, his arms never developed correctly and the radius bone is dislocated in both elbows. Luckily the two other bones that are in his arms are connected properly and those are the bones that give him the most support. The dr said there isn’t anything that can be done about it at this time but occupational therapy will be adding some extra things to their list of exercises for lil P.

Other than that he is doing well. We’ve had to bring the O2 back on and off throughout the day but he’s making more and more sounds with his Passy Muir Valve on. He is sooooo close to crawling- it won’t be long and he’s putting more weight in his legs than he ever has so look out world- we’re almost mobile!!!
We are preparing for an overnight stay in the PICU For a sleep study Thurs and Tubes, biopsy of Porters throat and abdominal ultrasound on Friday. Busy week!!!

Oliver just loves playing with Porter and helping with some of his care. He truly is an amazing big brother. We were at the pool the other day and Oliver heard a little girl ask me what was in Porters belly. I told her his g-button and that’s how he gets his food- Oliver stopped mid “swim” and came over to the little girl and said- “his name is Porter and he’s my brother.” We are truly blessed.