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.

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.

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.

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.

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

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

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.