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.
Tuesday, December 30, 2008
12.30.08
We were so grateful to be together as a family over Christmas. There were 16 of us sleeping under one roof. Yes, it was as crazy as that sounds. Unfortunately, since Steve had to get IV medication, none of us were able to help MaryAnn and Joe with the overnights. That was really frustrating since there is so little we can do to help, but administering the IV meds was such a medically complex process, and they were the only ones who could do it. But as of Sunday afternoon, Steve had his last of the IV antibiotics. Yesterday, a nurse came over to remove the line.
Steve has been feeling good. He had a fevers during the week, but as of yesterday, he had about three days of no high temperatures and was feeling better. We had a couple of scary moment with clots like the one I described at the beginning of the month, but in each case, someone responded immediately and got air to Steven quickly. The morning are still a tough time since he continues to have severe leg pain then. Sometimes he's able to sleep a bit which is helpful, and then he gets up in the chair later in the afternoon.
Thanks to all of your thoughts and notes; I was able to share them with Steve on Christmas night.
I believe that the new year is going to bring great progress for Steve. It's a new start and I believe it contains that one good thing we've been waiting for, whatever it might be, and many others. I believe Steve is going to get stronger and return to his neck, mouth and swallowing exercises. I believe we are all ready to say goodbye to 2008. And I believe in every possibility for Steve in 2009. Positively.
Steve has been feeling good. He had a fevers during the week, but as of yesterday, he had about three days of no high temperatures and was feeling better. We had a couple of scary moment with clots like the one I described at the beginning of the month, but in each case, someone responded immediately and got air to Steven quickly. The morning are still a tough time since he continues to have severe leg pain then. Sometimes he's able to sleep a bit which is helpful, and then he gets up in the chair later in the afternoon.
Thanks to all of your thoughts and notes; I was able to share them with Steve on Christmas night.
I believe that the new year is going to bring great progress for Steve. It's a new start and I believe it contains that one good thing we've been waiting for, whatever it might be, and many others. I believe Steve is going to get stronger and return to his neck, mouth and swallowing exercises. I believe we are all ready to say goodbye to 2008. And I believe in every possibility for Steve in 2009. Positively.
Wednesday, December 17, 2008
12/17/08 Updated
Steve's not doing well. He's been dealing with fevers on and off and pains throughout his body. He's been on a couple of different antibiotics as they try and get the lung infection out of his system and we just don't know if this is contributing to his overall fatigue and discomfort. The doctor came to the house this morning and called for an ambulance to come and take Steve to the hospital so that they could give him and IV for his antibiotics. He was there most of the day and they just got home a little while ago. The IV line will allow him to have a different, stronger antibiotic, which he will be on for ten days. We pray this will eliminate any infections in his system and leave him feeling much better.
For those of you who don't know, Christmas was Steven's most favorite holiday. From a pretty early age he would bug MaryAnn, asking to go onto the roof to cover it with Christmas lights. And so that's exactly what he did to Kris's roof last year. In Steve's mind, there was no such thing as enough lights.
He's been having a tough time these past weeks. He probably needs you now more than ever. If you are reading this, please post a comment. He needs to feel love and support. If what you want to say is too personal, or if you are having trouble posting a Comment, please email me directly at jpannasch@gmail.com. I promise to share all of your words with Steve on Christmas Eve or Christmas day, whenever the moment feels right.
On December 22, it will be nine months since his accident. That is 275 days of silence and stillness. Please bring your words into his space. I want to read until my throat is dry. I know you guys can do it, you've done it before. I leave for Alabama on Tuesday, and I may not post again until I am there. So please just say something to let Steve know that you are still thinking about him. We all appreciate it! And Merry Christmas to you and yours. xo Aunt Jean
For those of you who don't know, Christmas was Steven's most favorite holiday. From a pretty early age he would bug MaryAnn, asking to go onto the roof to cover it with Christmas lights. And so that's exactly what he did to Kris's roof last year. In Steve's mind, there was no such thing as enough lights.
He's been having a tough time these past weeks. He probably needs you now more than ever. If you are reading this, please post a comment. He needs to feel love and support. If what you want to say is too personal, or if you are having trouble posting a Comment, please email me directly at jpannasch@gmail.com. I promise to share all of your words with Steve on Christmas Eve or Christmas day, whenever the moment feels right.
On December 22, it will be nine months since his accident. That is 275 days of silence and stillness. Please bring your words into his space. I want to read until my throat is dry. I know you guys can do it, you've done it before. I leave for Alabama on Tuesday, and I may not post again until I am there. So please just say something to let Steve know that you are still thinking about him. We all appreciate it! And Merry Christmas to you and yours. xo Aunt Jean
Monday, December 8, 2008
Happy Birthday MaryAnn!
I am sorry that I haven't written earlier than now, but I just got back from the airport, that is, back from Alabama! Yup, I flew down for about 48 hours to surprise MaryAnn for her birthday, which is today. I was going to share that with you all before I left, but I was too afraid of spoiling the surprise. And the surprise went like this: I wore a blonde wig and ducked my head into Steve room. I had a scarf around my face, and MaryAnn just stared at me, I think she was actually about to throw me out because she didn't know who I was and what I was doing in Steven's room. And then I spoke and she was thrown, since I sounded like her sister, but we were just on the phone and I told her I was just back from grocery shopping. Finally I revealed myself and told her, "Happy Birthday." She had no idea. Steve knew about the plan the whole time--he said it was a good surprise!
It was wonderful to see them again, of course. Steve looked good, he was feeling a little better than he had been previously during the week. On Saturday morning, the ENT doctor came and had Joe change Steve's trache. Props to Joe, that's a pretty serious deal. The doc said again that his throat was healing well, and that he would continue to change the trache about every ten days so that the scar tissue does not have a chance to grow around it. We are hoping that Steve will soon be able to try a new trache, which would allow air to pass over his vocal cords, possibly giving him the ability to speak. Let's put our collective energy and prayers towards that thought. Please.
We had a scary moment last night. I was talking to Steve, explaining how hairy I find the roads there to drive at night (I had drove my rental car out to dinner with Mare, Ashley and my mom for Mare's birthday) and the road home was windy and dark and I was a little freaked out. Anyway, as I was talking about the new concrete power poles going up on Steger, his vent alarm went off. As MaryAnn had told me to do, I asked Steve if he could breath. He replied, "Get the bag," meaning that his vent was blocked and he wasn't getting air. I tried to use the ambu bag, as I usually do when we suction his lungs, but for the first time ever, when I tried to squeeze it, there was resistance and I couldn't get a breath into him. MaryAnn, Joe, Kris, Ashley and Grandma came running into the room and thankfully, Joe took the bag and forcefully squeezed it to get air into Steven. MaryAnn ripped open a lung suctioning kit and immediately unhooked the bag to put the suction tube into his trache. Within milliseconds, she was able to get and dislodge the clog, and Joe refastened the bag and was able to get breaths into Steven. He was okay.
I can't begin to describe what this intensity felt like. I asked Steve if that was as scary as it gets, and he said yeah. He closed his eyes. I stroked his hair, not knowing what to say. He deals with the possibility of moments like this everyday. As do the rest of the family. As my plane took off, and I headed north, I was overwhelmed by the love that I witness every time I go down there. I have always felt lucky to have a big, loving family. But 265 Chipmunk Circle is a remarkable place that I feel so fortunate to witness. I just feel the need to say that. I am sure that some of you feel the same way.
Steve did not have a fever while I was there. Hopefully, the antibiotic that he's been on is kicking ass against the lung infection. He was still really tired though. His medications knock him out at 5 PM and then he has a hard time sleeping at night. That was the case last night. This morning he told me that he was up from about 3 AM on.
I think that's about it for now. To everyone who has continued to bring food by the house throughout all these months, the family thanks you. I have often benefited from your delicious generosity. I know that it is an enormous help for Mare and Joe. And as always, thanks for checking in. More soon. xo Aunt Jean
It was wonderful to see them again, of course. Steve looked good, he was feeling a little better than he had been previously during the week. On Saturday morning, the ENT doctor came and had Joe change Steve's trache. Props to Joe, that's a pretty serious deal. The doc said again that his throat was healing well, and that he would continue to change the trache about every ten days so that the scar tissue does not have a chance to grow around it. We are hoping that Steve will soon be able to try a new trache, which would allow air to pass over his vocal cords, possibly giving him the ability to speak. Let's put our collective energy and prayers towards that thought. Please.
We had a scary moment last night. I was talking to Steve, explaining how hairy I find the roads there to drive at night (I had drove my rental car out to dinner with Mare, Ashley and my mom for Mare's birthday) and the road home was windy and dark and I was a little freaked out. Anyway, as I was talking about the new concrete power poles going up on Steger, his vent alarm went off. As MaryAnn had told me to do, I asked Steve if he could breath. He replied, "Get the bag," meaning that his vent was blocked and he wasn't getting air. I tried to use the ambu bag, as I usually do when we suction his lungs, but for the first time ever, when I tried to squeeze it, there was resistance and I couldn't get a breath into him. MaryAnn, Joe, Kris, Ashley and Grandma came running into the room and thankfully, Joe took the bag and forcefully squeezed it to get air into Steven. MaryAnn ripped open a lung suctioning kit and immediately unhooked the bag to put the suction tube into his trache. Within milliseconds, she was able to get and dislodge the clog, and Joe refastened the bag and was able to get breaths into Steven. He was okay.
I can't begin to describe what this intensity felt like. I asked Steve if that was as scary as it gets, and he said yeah. He closed his eyes. I stroked his hair, not knowing what to say. He deals with the possibility of moments like this everyday. As do the rest of the family. As my plane took off, and I headed north, I was overwhelmed by the love that I witness every time I go down there. I have always felt lucky to have a big, loving family. But 265 Chipmunk Circle is a remarkable place that I feel so fortunate to witness. I just feel the need to say that. I am sure that some of you feel the same way.
Steve did not have a fever while I was there. Hopefully, the antibiotic that he's been on is kicking ass against the lung infection. He was still really tired though. His medications knock him out at 5 PM and then he has a hard time sleeping at night. That was the case last night. This morning he told me that he was up from about 3 AM on.
I think that's about it for now. To everyone who has continued to bring food by the house throughout all these months, the family thanks you. I have often benefited from your delicious generosity. I know that it is an enormous help for Mare and Joe. And as always, thanks for checking in. More soon. xo Aunt Jean
Wednesday, December 3, 2008
12/3/08
Steve has a lung infection. Unfortunately, this bacteria does not seem deterred by antibiotics, so we've just got to wait for to get well on his own. This is the reason for the fevers and the exhaustion (he's been sleeping more). Mare and Joe have needed to suction his lungs a little more often. Please pray for this infection to leave his system so that he can feel stronger and so that his lungs become healthy. Thanks all.
Monday, December 1, 2008
12/1/08
Steve's not feeling good. He's had a fever over the past few days. He's been sleeping in in the mornings. Morning time for him, from about 8 to 11, is the worst. He's just really uncomfortable. I haven't talked to Mare yet today, but this was the update after speaking with her yesterday.
On a brighter note, Jennie B brought him over a John Deere christmas tree, which is on his dresser so that he can see it when he's laying in bed. MaryAnn was telling me how much she likes having it on in his room. And I'm sure Steve does too. Thanks Jennie.
On a brighter note, Jennie B brought him over a John Deere christmas tree, which is on his dresser so that he can see it when he's laying in bed. MaryAnn was telling me how much she likes having it on in his room. And I'm sure Steve does too. Thanks Jennie.
Thursday, November 27, 2008
Happy Thanksgiving
Steve and his family have asked for me to wish all of you a very happy thanksgiving. They are so thankful for your unwavering support and love throughout these last eight months. We all hope you have a wonderful day with your loved ones. Happy Thanksgiving!
Saturday, November 22, 2008
11.22.08
Hey all! Sorry I have been absent, was waiting to see if we got some news from the doctor. I know that some of you were worried since you hadn't heard from me, so I'll try not to stay away for so long. I understand that even an uneventful post is a worthwhile post.
The ENT doctor came to Steve's house this week to examine his throat and change his trache. He said that he looked through Steve's file, and there is no indication, from previous exams, that his laryxn is crushed. This is great news because it means there is still potential for possibly speaking down the road! He also said that he thought the scar matter in his throat, seemed to be doing well. He is going to be coming to the house to change the trache with regularity, which should help. This is great news!
Steve has been doing okay, he's been infection-free (Yes! more good news),but he's been sleeping a lot and not too motivated to get up on some days. Steve Willet is still able to rouse a smile, as well as small group of Steve's core friends who visit with regularity. He's expecting some company this weekend, so I'm sure that he'll be up earlier than he has been. And on Tuesday, my mom and dad, Joseph, Debbie, Bryan and Patrick arrive for the Thanksgiving holiday. Between Thanksgiving and Christmas, a ton of family is going to be descending on Chipmunk Circle, so Steve won't have much downtime.
When I was about sixteen and quite content to sleep till midday on Saturday mornings, MaryAnn would come to our house with Kris and Steve and they would make their way up the stairs, bursting into my room with all their pint-size,boisterous, blond energy. They'd jump on the bed and there was no other choice but to get up. And I was entirely thrilled to do so--they were my little buddies. Well, you know what they say, "What goes around comes around." So that's pretty much what I intend to do every morning that I am there for Christmas. Pounce into the room well before Steve's ready for me. And I am sure Sadie, Bryan and Patrick will be my pint-sized accomplices!
The ENT doctor came to Steve's house this week to examine his throat and change his trache. He said that he looked through Steve's file, and there is no indication, from previous exams, that his laryxn is crushed. This is great news because it means there is still potential for possibly speaking down the road! He also said that he thought the scar matter in his throat, seemed to be doing well. He is going to be coming to the house to change the trache with regularity, which should help. This is great news!
Steve has been doing okay, he's been infection-free (Yes! more good news),but he's been sleeping a lot and not too motivated to get up on some days. Steve Willet is still able to rouse a smile, as well as small group of Steve's core friends who visit with regularity. He's expecting some company this weekend, so I'm sure that he'll be up earlier than he has been. And on Tuesday, my mom and dad, Joseph, Debbie, Bryan and Patrick arrive for the Thanksgiving holiday. Between Thanksgiving and Christmas, a ton of family is going to be descending on Chipmunk Circle, so Steve won't have much downtime.
When I was about sixteen and quite content to sleep till midday on Saturday mornings, MaryAnn would come to our house with Kris and Steve and they would make their way up the stairs, bursting into my room with all their pint-size,boisterous, blond energy. They'd jump on the bed and there was no other choice but to get up. And I was entirely thrilled to do so--they were my little buddies. Well, you know what they say, "What goes around comes around." So that's pretty much what I intend to do every morning that I am there for Christmas. Pounce into the room well before Steve's ready for me. And I am sure Sadie, Bryan and Patrick will be my pint-sized accomplices!
Monday, November 10, 2008
11.10.08
About time I got a new image up there, right? I have been trying for some time to make it bigger, but I just can't figure out how. And as you can see, it's getting late. I do hope to figure it out soon. In the meantime, I'll let you know that Steve had a great visit with the family. He's been sleeping a lot and he's had fluctuations with his blood pressure, specifically low blood pressure, but that is to be expected with this type of injury. I don't have a lot of news to report, except that all the love and hope is as strong as ever, just in case you were wondering. More updates soon. Love, Aunt Jean.
Monday, November 3, 2008
11/3/08
Steve had another doctor appointment last week. This was the rescheduled appointment with the ear, nose and throat specialist and the pulmonologist. The preliminary news is not good. The doctor feels that there is something similar to scar tissue, suppressing things in the back of Steve's throat. He said that he would need to operate and remove that in order to assess the rest of Steve's throat function. He also wanted to do more research and gather more information and get back to them.
Since Steve's swallowing still results in liquids flowing into his lung, the doctor was not in favor of the double cuff trach tube which can, in some cases, allow speaking. So we are holding out hope that we can find promising information for alternatives and of course, praying that function will just return on its own with time.
Friends were over yesterday to celebrate Johnny's birthday which was great for Steve's spirits. Regular visits from a few close friends are what really sustain him these days. They make a big, big difference. On Wednesday, he'll have lots of company when Uncle Joe and Debbie come to visit--along with Bryan who turns that day, and Patrick who is three. I think it's going to be a great time! The boy are so excited to see Steve, not to mention the big love and smiles from Joe and Deb. Have a great time everyone!
Since Steve's swallowing still results in liquids flowing into his lung, the doctor was not in favor of the double cuff trach tube which can, in some cases, allow speaking. So we are holding out hope that we can find promising information for alternatives and of course, praying that function will just return on its own with time.
Friends were over yesterday to celebrate Johnny's birthday which was great for Steve's spirits. Regular visits from a few close friends are what really sustain him these days. They make a big, big difference. On Wednesday, he'll have lots of company when Uncle Joe and Debbie come to visit--along with Bryan who turns that day, and Patrick who is three. I think it's going to be a great time! The boy are so excited to see Steve, not to mention the big love and smiles from Joe and Deb. Have a great time everyone!
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