Great news! Sammy is doing very well and will begin going in for half days to school tomorrow! It has only been 3 weeks since his surgery and it is so exciting to know that he will already be returning to school. Of course, it isn't for full time but it definitely better than nothing... or even waiting the full 4-6 week term of recovery.
He has been in great spirits and has continued to get better each day. He spends more and more time out of his bed and is obviously perking up. This makes me so happy, even only hearing it over the phone, but knowing that Sammy is making such progress is so great to hear. Knowing that he was in pain was a horrible feeling (and still is when he experiences it) but also seeing him so sad and down everyday, was even harder to watch. That's not the Sammy we all know and love.
But, he will officially start back into school tomorrow and we are all so excited for him! Thank you again to everyone who has been there for us throughout this experience. We look forward to seeing Sammy continue to progress, go back to school full time, and be out of pain completely. Also, a special thank you to Patty and Tom Dalgleish.
Well, Sammy is back in action! Today, two people from his school came to the home to do some activities with him. We had set this up before the surgery, so Sammy wouldn't get too far behind on his goals and education.
Sammy goes to the Vista School, a private school in Hershey, PA, for children with Autism. The lovely Andrea and Jason came to see him today to help him with some work. It is great to know our guy is doing well enough to sit at a table and complete some tasks! It's even greater to know that his brain is still working! That was definitely something we were all concerned about. How do you know what's going on in there if he can't talk, if he doesn't understand the simple "exercises" doctors ask you do to make sure the certain parts of the brain are still functional?
For the remainder of Sammy's recovery, he will continue to get some "at-home schooling." Just like anybody else. When most people will be out of school for a prolonged period of time, a tutor will come to their house to help them with their school work. Of all people, Sammy definitely needs this. Time is money when it comes to his education and the more time that passes, the more things he may forget or digress. Plus, the brain is plastic and can only be as good as it is used. Especially in brain surgery recovery, it is important to stimulate it and keep it awake.
Sammy had a great day and continues to show good recovery! Thank you again to everyone who is helping with meals, supporting our family, and keeping him in your thoughts!
Sorry the picture is blurry, mom took it with her dumb phone. :P
So, this weekend, I went home to help my mom with taking care of Sammy. Sammy's hospital bed is in the living room right now and my mom sleeps on the couch next to him. I volunteered to sleep on the couch for Friday and Saturday night so she would have the chance to sleep in her bed, for at least 2 night of the 4-6 week recovery. Sammy is doing really well with his recovery, however, about 2 times a day, he gets VERY upset. He cries with tears and audibly. i know it must sound weird that I'm explaining how he's crying, but the boy hasn't cried since he was little. It is SO SAD. He puckers his lips, gets all red, and balls his eyes out. When this happens, you have to drop everything to help him. The whole time he wants you to rub his head so there is obviously some pain or discomfort going on there. You can tell it must be pretty painful, because he bends our fingers backwards and scratches us in the attempt to pull us closer. I want to just die when he starts crying -- I hate seeing anyone unhappy, but Sammy being sad is the most devastating thing ever.
Sammy is getting better with standing and walking around, although he is still pretty wobbly and dizzy. He sits at the table to eat and was even able to go out with us to dinner this weekend! Although, there was a melt down. He did great the entire dinner and then became upset and starting pulling on my mom and me and biting his hands. First my mom tried to take him for a little walk while I finished dinner, but he just got more upset. It eventually ended up with me sitting with him in the car while my mom finished her dinner.
What's going on in his head? What does he understand? We "assume" he understands and try to explain to him that the pain is only temporary and everything will be fine. But what if he's thinking -- "what the hell?!?! I was up a week ago doing whatever I wanted and now I'm stuck in bed all day!?" I mean, if I didn't understand that and I woke up like this, I'd be pretty depressed. Can you imagine if you went to bed tonight after exercising, getting your own food, being able to walk around the house, bending over to pick something you dropped... and then tomorrow, you woke up and were stiff, sore, and couldn't get up from your bed without someone guiding you? Then, I wonder, is that what he's crying for?
I cannot even imagine what its like for him or my mom. I adore my mom for all of her efforts and dedication she has put towards Sammy and his recovery. She spends her entire day catering to him, giving him medicine, not sleeping, listening to the same songs over and over, watching the same episodes of Spongebob, making sure he gets enough to eat, checking to make sure he doesn't have accidents, bathing him, etc. I don't know how she's doing it and is still sane.
I was only home for two days and all I was able to give my mom was a night of relief and help her bathe him. Which was another whole different experience. He's getting big so giving him a bath is already tough, but when he doesn't want to move, is protective of his head, and we are trying to keep him comfortable and get him clean. We had to undress him, slowly take him up the stairs, guide him into the tub, and then awkwardly move his teenage body around in the tight tub in order to try and get him completely clean. His incision looks great though and is completely exposed now, no more bandages!
Thank you to everyone who has brought food, volunteered their time, and been there for us. It means SO MUCH!!! But, a special thank you to Collin Messics -- Sammy is in love with the lizard you brought him and it seems to really comfort him when he's having melt downs. Love you!
I have been back in MD since Monday, and Sammy was officially home on Tuesday. It has been hard for me not being able to see him everyday after I was just there spending almost every hour with him and my family for a week. I wish I could be there to help my mom, cook my family dinner, run errands, sit with Sammy when she needs a rest, watch TV with Sammy, hang out with Jack, etc. But I can't, I have to go back to school and work.
As much as I'd like to, I don't have the money or time to go home every night or commute to school while Sammy is recovering. So, I find myself wondering what I could do to help from two hours away? I want to be there for them as much as I can. Recovery is 4-6 weeks long.
Many of you have asked what you can do to help and I have come up with something we all can help with -- my mom is constantly watching Sammy and giving him meds... she has little time to sleep, let alone to cook and clean. I admire her dedication and love for Sammy. How is this woman still functioning after no sleep and all of this stress? Especially when she isn't just sitting around with Sammy, she is giving him meds, washing him, changing him, getting him up moving around, feeding him, etc. Anyways, I was wondering if there was anyone interested in bringing meals to my mom, Sammy, and Jack? I will be home this weekend and will be able to cook or go out and get them something, but I was really hoping some of you closer could help while I am away.
If anyone is interested, please coordinate/sign up on the Meal Train site
Click on the date you wish to make dinner and sign up by selecting "Book this date." You can sign in using Facebook or a quick registration. If you have issues, contact me through the "Contact" page on my blog and I can sign you up for an available day. Any drop off time is perfect and we aren't really that picky of eaters! Thank you SO MUCH to Kelly Pallis for helping organize all of this!
I cannot thank you enough for all of your prayers, thoughts, and everything you all have done.
Sammy has been sleeping since 8am -- thank god! The boy is finally getting some rest! He will eventually have someone from his school to help with lessons and will have OT and PT. He also has a special hospital bed so the boy doesn't pee on everything my mom owns (as if he already hasn't) and it'll make it a little easier.
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#
Needless to say, when we woke Sammy up this morning, he knew something was up. He was very resistant to getting dressed, getting out of the car, and he was refusing to sit in his bed at the hospital. Before they began to get him prepped, Sammy insisted on sitting in the wheelchair to watch some TV. Never had this kid sat and watched TV (let alone the news) for a prolonged period of time -- but today he did. Since he refuses to let IVs stay in his arm, he was given medicine orally to try and calm him down. He refused to have his blood pressure taken or heart beat listened to. When it did come time to insist on something being done, it took 3 of us to hold him down -- none of the nurses were willing to. None of the nurses understood Autism. They were giving him commands like "look over here" or "open your mouth." Even when we told them he didn't understand, they would continue and say "well maybe if we try this way." Really? Cause we don't know what he can and can't/will not do.
The surgery lasted until around 1pm. We got up at 4am and he was checked in by 5:30am. It was a LONG day. The doctor told us there had been a little more scar tissue than he an anticipated but was able to do the surgery successfully regardless. When he was out of surgery, my mom was called up to see him and he was very agitated coming out of anesthesia. My mom had to hold him down the entire ride to his new room. For the next 4 hours, 5 nurses and the three of us held Sammy down so they could get all of his IVs in and restrained him. As soon as one would be stabilized, he would rip the other out. Sammy never cries because he has such a high pain tolerance, but he was crying this entire time.
The boy was stubborn throughout the whole day, insisting on keeping his eyes open even though you could tell he just wanted to drift off to sleep. However, he did manage to get someone to be giving him a foot rub every second of every moment. It was so sad to see how uncomfortable and sad he was. I wish I could take his pain away.
I am so thankful for each and every one of you who thought of him and kept my brother in your prayers. It is because of you Sammy had such a successful surgery. We are so glad to have him back with us and hope that the recovery process will go just as well. It'll be tough but we know that we have all of your support and we are so thankful.
*If you wish to get more frequent, text updates regarding Sammy... please text "@mstalh" to the number: 717-516-6917. Also, if you wish to send Sammy or our family a message, please visit the Contact page which can be accessed at the top of my blog site. Thanks! :)
Sammy's surgery will take place tomorrow, October 9, 2013 at the Hershey Medical Center.
I have come up with a way to keep you all updated as much as possible and so I don't have to send out a million copies of the same email, text, etc. If you haven't noticed, there is a "Contact" page now that you can access on the blog site at the top of this page. Please go there to fill out the form and find out more about my plan.
Basically, I want to update the blog daily and send text messages as frequently as possible. You can subscribe to Sammy's updates by texting @mstalh to the number: 717-516-6917
If you fill out the Contact form and do not receive anything by tomorrow night, October 10th -- please contact me again so I can figure out the issue.
Also -- the Contact form goes directly to my phone so if you want to communicate that way or send Sammy a message -- please do so! Just remember to include your email address if you want a response.
Thank you to everyone for being here for Sammy and my family. It means so much to me that I have to set something like this up because there are so many of you that are interested to see how he is doing. Please keep him in your prayers.
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.