So, on Thursday... after not sleeping AT ALL the night before and throwing up, Sammy was given the opportunity to get out of bed. He loves the wheel chair and thats just what he went for. He rode around the hospital hall ways for about a half an hour. He was much more alert and eyes wide open on Thursday which was comforting to all of us. Towards 6 o'clock, I was lying in bed with Sammy and watching TV and he kept pushing my hands against his head (a previous trigger for when we knew he was getting headaches). Although we alerted the nurses that we thought he was feeling discomfort (I guess they didn't think we knew since he was Autistic), they took their time. Only until he bite my finger practically in half did they come running with pain meds! Poor guy... The only other thing we noticed was that he was favoring looking to the right and didn't seem to want to move his neck in the other direction.
However, on Friday... he was up in his wheel chair for the majority of the day and was turning his head in all directions to see patients, visitors, doctors, etc. walk around the cafeteria and the hall ways. He was most fascinated by the revolving doors. He also was able to take his few first steps in the room and has been scarfing down any food he can get his hands on -- specifically chips. Our guy's appetite is back! It's great to see Sammy looking and doing much better from when he came out of surgery. I was so worried. Along with thanking all of you for your prayers -- I am so thankful for all of the kind people we have met in the hospital; the doctors, nurses, Child Life, Sammy's one-on-one's, and many of the patients also dealing with Chiari's.
I've also been reading a lot of the pamphlets the doctors gave us on Chiari's. One of the biggest issues associated with it is development issues. Although, we know it may not cure his Autism and we are so thankful his surgery went successful, I can't help thinking what if this Chiari had held him back all these years? Maybe he'll be able to improve on his iPad or toilet training or other skills in ways that he never had been able to before? So please continue to pray!
Aside from the obvious discomfort and pain, Sammy has been making sounds and smiling every so often which is nice to see! He is also down to one arm of IVs... and he is so happy for that since he's been trying to pull them out since he came out of surgery. Also, the little sneak leaves his bandage alone all the time and doesn't seem to mind it... until all of us have our back turned and off it comes. He's managed to do this twice now. Even when in recovery, he's still a little shit.
Our service is terrible in the hospital so we aren't ignoring you! Try emailing me, writing on the Contact page, or calling the room at: (717) 531-0006, ext. 281966#
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.