Hi, it's me, Steve.
I want to thank you for the endless support and love that you have shown me through this blog over the past year. It's been so meaningful and I look forward to continuing to hear from you. However, I think the time for this blog has run its course, so this will be the last post. Please keep in touch with me via email, my address is stevecj5@mchsi.com.
I really can't say thank you enough for your support and encouragement, and I look forward to hearing from you via email.
Wednesday, April 8, 2009
4.8.09
Steve's doing all right. He's feeling okay and he continues to have a steady flow of friends come by on the weekends, telling stories and bringing the love. The whole family is gearing up for Kris and Ashley's wedding, which is on the 25th. I can't believe it! There will be a mass exodus south to celebrate, and I will be sure to post some photos here for all of you to see.
As the weather gets warmer Steve is able to be outside more often. He will definitely enjoy that window of beautiful weather before it gets too warm to be out. Yesterday I got to tell Steve the story about an intern asking me if my Steve-O bracelets were in support of the the rehab efforts of Steve-O from Jack*ss. WHAT? Steve got a kick out of that. Perhaps you too have had the same experience.
Anyway, that's it for now. I am so eager to get to Alabama; it's been too long.
As the weather gets warmer Steve is able to be outside more often. He will definitely enjoy that window of beautiful weather before it gets too warm to be out. Yesterday I got to tell Steve the story about an intern asking me if my Steve-O bracelets were in support of the the rehab efforts of Steve-O from Jack*ss. WHAT? Steve got a kick out of that. Perhaps you too have had the same experience.
Anyway, that's it for now. I am so eager to get to Alabama; it's been too long.
Sunday, March 22, 2009
March 22, 2009
We are so lucky to have Steven with us. One year ago today, at 8:07 p.m., I got a phone call from my sister. Steven was in an accident. It's been a year that cannot be put into words.
But it's also been a year where I've seen Steve laugh, smile and show his deep appreciation for the enduring friendships of those who've stood by him. And to be beside him as he makes jokes or perhaps even makes fun of you, you see the measure of his indomitable spirit. He's given us a profound lesson of courage and hope. And although a year has passed, I am compelled to point out that this is still the beginning. We were told early on, that it could take as long as 18 months for the swelling to go down, due to severity of the trauma to the body. It's still early.
This past week was a reminder of the instability of Steven's condition. Twice he was taken to the hospital. The issues were related to his stomach. He had to have his feeding tube changed and he's still feeling discomfort. We don't know yet if he will need to have the tube changed again, which could require a medical procedure.
Perhaps you, like me, find yourself struggling sometimes to find a way to bring optimism to Steve. Words feel empty; how can you speak to his experience having no idea what it might be like to not eat, speak, move or really see for a year? But as I write this, I am reminded that the message is not in the words, it's in the act of talking and being there. The act of expressing or even just trying to—even if the words are awkward—is giving. What can we give Steven? Time, friendship, encouragement, and love, always with recognition of the severity of his last year. It's our job to remind him that light is ahead, perhaps not visible yet, but waiting in tomorrow.
In the midst of such an intense week, Steve also had a meeting with his pulmonolgist. The doctor told Steve that in just examining his lungs, he would never know that he was on a trache. His lungs are in great shape. Awesome news.
I know that some of you check this blog everyday. Thank you. Know that every message here has been shared with Steve. MaryAnn and Joe asked for me to thank you today for your ongoing prayers, love, and support.
xo Aunt Jean
But it's also been a year where I've seen Steve laugh, smile and show his deep appreciation for the enduring friendships of those who've stood by him. And to be beside him as he makes jokes or perhaps even makes fun of you, you see the measure of his indomitable spirit. He's given us a profound lesson of courage and hope. And although a year has passed, I am compelled to point out that this is still the beginning. We were told early on, that it could take as long as 18 months for the swelling to go down, due to severity of the trauma to the body. It's still early.
This past week was a reminder of the instability of Steven's condition. Twice he was taken to the hospital. The issues were related to his stomach. He had to have his feeding tube changed and he's still feeling discomfort. We don't know yet if he will need to have the tube changed again, which could require a medical procedure.
Perhaps you, like me, find yourself struggling sometimes to find a way to bring optimism to Steve. Words feel empty; how can you speak to his experience having no idea what it might be like to not eat, speak, move or really see for a year? But as I write this, I am reminded that the message is not in the words, it's in the act of talking and being there. The act of expressing or even just trying to—even if the words are awkward—is giving. What can we give Steven? Time, friendship, encouragement, and love, always with recognition of the severity of his last year. It's our job to remind him that light is ahead, perhaps not visible yet, but waiting in tomorrow.
In the midst of such an intense week, Steve also had a meeting with his pulmonolgist. The doctor told Steve that in just examining his lungs, he would never know that he was on a trache. His lungs are in great shape. Awesome news.
I know that some of you check this blog everyday. Thank you. Know that every message here has been shared with Steve. MaryAnn and Joe asked for me to thank you today for your ongoing prayers, love, and support.
xo Aunt Jean
Tuesday, March 17, 2009
3.17.09
I know I said that I would be back in two weeks, but with the upcoming on year mark since the accident, Steve has just been on my mind pretty much non-stop. I got to chat with him a little tonight, I told him about the drunk revelers overflowing (literally) from the St.Patrick's Day parade. I hope I made him laugh.
Steve's been comforted by a consistent flow of company recently. It seems that every time I talk to MaryAnn, there is someone there visiting with Steve. It's awesome. Unfortunately, he hasn't been feeling great the last couple of days. He might have a little of the stomach bug that's been going around. And Mare and Joe have needed to suction his lung much more frequently. Hopefully, it's just the spring air getting to his sinuses.
Okay, I'll be back on Sunday. Thanks everyone. xo AJ
Steve's been comforted by a consistent flow of company recently. It seems that every time I talk to MaryAnn, there is someone there visiting with Steve. It's awesome. Unfortunately, he hasn't been feeling great the last couple of days. He might have a little of the stomach bug that's been going around. And Mare and Joe have needed to suction his lung much more frequently. Hopefully, it's just the spring air getting to his sinuses.
Okay, I'll be back on Sunday. Thanks everyone. xo AJ
Saturday, March 7, 2009
Second of two posts for 3.7.09
President Obama will announce Monday that he is reversing Bush administration limits on federal financing for embryonic stem cell research. Keep an eye out for a presidential address on the issue on Monday around 11 (check local listings). The really thrilling aspect is that, if researchers are able to submit grants by September 2010, they can try to obtain some of the $10.4 billion given to the National Institute of Health as part of the economic stimulus program, according to the New York Times. HOOOOO YAAAAAA! The sun is shining and there's promise on the horizon.
3.7.09
Hey all, I was waiting for Steve's dentist appointment yesterday to give you an update. I'm sorry for the delay, I know you've been so loyal.
Unfortunately, Steve seems to have a little bug right now; his stomach was bothering him yesterday. He went to bed early last night. I just got off the phone with those guys and he's feeling better this morning.
As for the dentist, we learned that the tooth that was recovered by the surgeon (found lodged in his esophagus immediately after the accident) cannot be fit back into his mouth. However, they will be able to create a crown which will restore Steve's beautiful, tooth-filled smile. Of course, he's a handsome bugger either way, but I'm sure he's eager to have a full set of pearly-whites again.
Steve's been having a steady flow of company recently, which helps pass the days and lifts his spirits. And he loves hearing how everyone is doing and just staying connected to friends.
Steps are being taken to obtain a different trache for Steve. We are all so hopefully that this trache will work. Please, please, please, pray for this.
New parts are expected for his wheelchair. The powered leg rest that's expected soon will hopefully relieve his leg pain and allow for easier transport in and out of the van.
Maryann was able to visit Lynn Fanning last week (this was the school that she used to work at). It was wonderful to see everyone again.
You've been an amazing crew with the comments here, please keep them coming!
Unless anything changes, I'll be back with a new post in two weeks. xo aunt jean
Unfortunately, Steve seems to have a little bug right now; his stomach was bothering him yesterday. He went to bed early last night. I just got off the phone with those guys and he's feeling better this morning.
As for the dentist, we learned that the tooth that was recovered by the surgeon (found lodged in his esophagus immediately after the accident) cannot be fit back into his mouth. However, they will be able to create a crown which will restore Steve's beautiful, tooth-filled smile. Of course, he's a handsome bugger either way, but I'm sure he's eager to have a full set of pearly-whites again.
Steve's been having a steady flow of company recently, which helps pass the days and lifts his spirits. And he loves hearing how everyone is doing and just staying connected to friends.
Steps are being taken to obtain a different trache for Steve. We are all so hopefully that this trache will work. Please, please, please, pray for this.
New parts are expected for his wheelchair. The powered leg rest that's expected soon will hopefully relieve his leg pain and allow for easier transport in and out of the van.
Maryann was able to visit Lynn Fanning last week (this was the school that she used to work at). It was wonderful to see everyone again.
You've been an amazing crew with the comments here, please keep them coming!
Unless anything changes, I'll be back with a new post in two weeks. xo aunt jean
Friday, February 20, 2009
2/20/09
I apologize for my delayed post--I was away last week. But as always, I appreciate your continued presence here.
Steve's doctor appointment on the 11th went well. His lungs sound good. No news on a different trache which could allow Steven the ability to talk, but we remain hopeful. Steve's been doing okay; medically he's been stable. And we remind him to stay positive, that things will get better.
I hope to post more soon. Thanks all.
Steve's doctor appointment on the 11th went well. His lungs sound good. No news on a different trache which could allow Steven the ability to talk, but we remain hopeful. Steve's been doing okay; medically he's been stable. And we remind him to stay positive, that things will get better.
I hope to post more soon. Thanks all.
Friday, February 6, 2009
2.6.09
Happy Belated Birthday Kris!! Kris's birthday was Wednesday and the family celebrated together with lots of laughs.
Steve's been doing well, feeling pretty good, and weathering the emotional ups and downs as best he can. He shared some laughter with Sharon earlier in the week, an old friend of his parents from their Long Island days. Sharon has twin sons Steve's age, and a daughter just a bit older (hi Lisa, Steve and Jeff!). The families spent a lot of time together growing up. Keith, Sharon's husband, and Joe volunteered at the fire department together. (I can still see that photo of you two suited up and smiling.)
On the doctor front, Steve has an appointment with his pulmonologist next week. We're eager for that visit.
Thanks to everyone who continues to write in comments. They are shared with Steve and we're always so grateful for the support.
Steve's been doing well, feeling pretty good, and weathering the emotional ups and downs as best he can. He shared some laughter with Sharon earlier in the week, an old friend of his parents from their Long Island days. Sharon has twin sons Steve's age, and a daughter just a bit older (hi Lisa, Steve and Jeff!). The families spent a lot of time together growing up. Keith, Sharon's husband, and Joe volunteered at the fire department together. (I can still see that photo of you two suited up and smiling.)
On the doctor front, Steve has an appointment with his pulmonologist next week. We're eager for that visit.
Thanks to everyone who continues to write in comments. They are shared with Steve and we're always so grateful for the support.
Monday, January 26, 2009
1.26.09
The new year seems to have finally kicked in.
For one, Steve's feeling a little better and his mood is a little brighter. That could be thanks to the weekend visitors: Melissa, Amanda, Austin, Boomer, Jim, Courtney, Brandon, Jeremy, Melissa and Sydney; and then he rounded out his Saturday with Kris and Ashley taking the overnight. This weekend Steve also got back to his neck exercises, something that he wasn't able to do between the discomfort and infections in the last number of weeks.
And as most of you have probably heard (or read in the comments), the FDA approved clinical trials for stem cell research, which could have HUGE implications for Steven's future. Yes, yes!
And, (yes, there's more) the Christopher and Dana Reeve Paralysis Act was passed which will work toward the support and enhancement of paralysis research (expands research on paralysis at the National Institutes of Health), rehabilitation (builds on research to enhance daily function for people with paralysis, including a Clinical Trials Network, to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation, and quality of life programs (works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities).
So, things are looking a bit brighter, a bit better. And we are so grateful. As always, thanks for checking in. Hope is a powerful thing and I know Steven continues to have a solid family of hope here. Thank you.
For one, Steve's feeling a little better and his mood is a little brighter. That could be thanks to the weekend visitors: Melissa, Amanda, Austin, Boomer, Jim, Courtney, Brandon, Jeremy, Melissa and Sydney; and then he rounded out his Saturday with Kris and Ashley taking the overnight. This weekend Steve also got back to his neck exercises, something that he wasn't able to do between the discomfort and infections in the last number of weeks.
And as most of you have probably heard (or read in the comments), the FDA approved clinical trials for stem cell research, which could have HUGE implications for Steven's future. Yes, yes!
And, (yes, there's more) the Christopher and Dana Reeve Paralysis Act was passed which will work toward the support and enhancement of paralysis research (expands research on paralysis at the National Institutes of Health), rehabilitation (builds on research to enhance daily function for people with paralysis, including a Clinical Trials Network, to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation, and quality of life programs (works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities).
So, things are looking a bit brighter, a bit better. And we are so grateful. As always, thanks for checking in. Hope is a powerful thing and I know Steven continues to have a solid family of hope here. Thank you.
Thursday, January 22, 2009
1.22.09
Steve's having a tough time. He's been in a lot of pain. From what I've read, it seems that chronic pain called neurogenic or nerve pain, is very common with paralysis. Unfortunately, his pain medication does not seem to be offering much comfort. It's been very difficult.
Uncle Joe and my parents arrived last night for a short visit. Hopefully the company will be a good distraction and bring Steve some laughter. I know that his buddies from Shepherd, Lex and Lorenzo, still call and offer inspirational pep talks.
Please keep the prayers and love flowing. May Steven find comfort and ease soon.
Uncle Joe and my parents arrived last night for a short visit. Hopefully the company will be a good distraction and bring Steve some laughter. I know that his buddies from Shepherd, Lex and Lorenzo, still call and offer inspirational pep talks.
Please keep the prayers and love flowing. May Steven find comfort and ease soon.
Sunday, January 11, 2009
1.12.09
Steve hasn't been feeling well over the last few days. He's got a UTI. He felt so badly yesterday, that he remained in bed. He had a good deal of company on Friday--which always lifts his spirits. Especially when it's his friends. And he enjoys talking to Heather, a friend who is in nursing school, and who comes to help out over the the weekends.
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