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.

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!

10.27.08

Overall, the results from Steve's doctor visit last Thursday were inconclusive. The specialist he saw was unable to remove the trach tube sufficiently to fully examine the vocal cords. However, he was optimistic, and said that the cranial nerve can take up to 18 months to heal. Therefore, it may be a little more time before Steve regains some abilities in his throat. The doctor did say that Steven's larynx was weak and he explained to MaryAnn some exercises that she could do to strengthen it. So, no bad news and hopefully we will have more details soon. This specialist is setting up another meeting, with Steven's pulmonologist on hand, so that he can better examine the throat area behind the trach.

In other news, Steve had a visit from Pete and Tara (from Montauk) yesterday. Since they have been busy with company, I haven't had a recent check in on how Steve's been feeling. I know that he still battles morning discomfort in his legs. And I know that he has been able to spend time outside, now that the weather is cooling off. I'll write again once I get to talk to MaryAnn in the next day or two.

10.20.08

Steve had a visit from Lex this weekend. Yes, Mr. Luger came with Regina, one of Steve's nurses from Shepherd, all the way from Atlanta and they stayed until after 9 on Saturday night. If you haven't been around Lex, he's something! He makes Steve smile plenty with his endless stories and inspiration. He's exactly what Steve needed. Steve has a big appointment this Thursday with the ear, nose and throat specialist. They will be testing his vocal cords. Lex said that this is what he is going to be praying for this week, and hopefully so will all of you. Steve's ready for some good news. So please put all of your hope, thoughts and prayers toward Steve getting a positive report. Please let the tide turn starting this week.

Now that the weather is cooling off, Steve been able to spend time outside. Over the weekend, he guided Joe through changing a pool pump, which provided some entertainment for sure.

My brother's fundraiser on Sunday brought out many, many wonderful people in Montauk. Below are some photos for you, but also for Steve to see some familiar faces.

10.14.08

Steve got his new glasses yesterday. They improve his vision a little. When they got back to the house, Steve was using the sip and puff to drive his chair in the driveway. When MaryAnn saw him cutting close to her car, she figured he was messing around with her--typical Steve. And then he got faster, heading down the driveway. Again, she thought he was kidding around. But what had happened was that the straw of the sip and puff was too far into his mouth and so he couldn't operate it correctly. He couldn't stop. He got the the end of the driveway, and the wheels on the one side went over the lip--and he fell. The chair tipped and the head piece released his head because it got mangled in the fall and his head came forward. MaryAnn and April ran down to him. A neighbor came over to help. Luckily, his vent tube did not come off and he did not sustain any injuries beyond a scratch on the leg.

It's been a tough week and when that's the case, I don't know what to write. Steve's been down. Very sad. He hasn't wanted to watch movies or television. If you're reading this I know you care deeply about Steven, and I know we all struggle with how to be there for him when we aren't able to be with him physically. And even when we are, we cannot know his experience, which makes it difficult to know what to say. But we try right? That's our job. To bring him hope and all of our love. To at least try, in any way we can.

And on that note, I send my gratitude to my brother and sister-in-law, Joseph and Debbie, and my high school friends Stacey and Gene (yes, Steven's coolness transcends his youthful years and allowed friendships to flourish with friends as old as me) for hosting events in honor of Steven this weekend. The whole eastern end of Long Island will be flush with thoughts, prayers and love for Steve. I 'm pretty sure there'll be enough Long Island volume and power in those crowds to carry south and shine directly on you Steven. I'm sure.

10.08.08

Steve had a good birthday! He was surrounded by friends and family. It was a long day, but he smiled plenty. Thank you for all the comments, cards and company. Kris gave him a jackalope for his Man Cave, and the room is really shaping up.

I was happy to see that Steve's put on some weight since the last time I saw him. He seems to be on the mend with the infections. He's been working on trying to swallow and getting back to his neck exercises since he took a few days off while he was sick. The weather was still quite warm, in the upper 80s. We got to sit outside on his porch the one day, but once he got back inside he didn't feel well and felt that he had been out for too long. His new glasses will be done on Oct. 13. Hopefully they will make a meaningful difference for his vision. The toll of constant overnight duties for MaryAnn and Joe is unbelievable. I just don't know how they have been doing it.

I was glad to get in some girlie time with MaryAnn. We took Sadie to the pumpkin farm, and fetched Kris and Steve some very heavy pumpkins, while the boys stayed home and watched football. As always, the visit ended way too soon. Time goes so quickly and leaving is so very difficult.

10.1.08

Hooray! Steve felt much better today. Yesterday morning he was switched to a different antibiotic, and so far it seems to be working. We are hoping that the cultures confirm that, because if not, the doctors would like to move Steve into the hospital.

Since it was such a beautiful day, Steve got outside for a bit. Yesterday was the last day for the nurse, Tracy. It was a tough goodbye and now the search begins for someone new.

I have been reluctant to share the news of Steve's eye exams. I guess I thought that if I didn't write it here, then maybe it wouldn't be so. But, the exam revealed that Steven has no vision in his one eye, and very poor vision in his other eye. He's legally blind. He did get a new prescription that will aid his one eye, and so we're hopeful that the new glasses will allow him to see a lot more than he can now. Obviously, the next step will be finding the assistive computer technology that will be suitable for his visual abilities.

I fly down to see Steve for the weekend tomorrow, bringing along my husband, Andrew, and my daughter, Sadie, for the first time since the accident. We'll be there for his birthday, which is Sunday. And I've been thinking about something we--his family of hope-- might be able to do collectively for his birthday. I've decided that I would like to request that everyone who reads this blog, think about Steven, sending love, prayers, meditations, chants, hopes, wishes, however you wish to express your support and encouragement, at exactly 12 PM, Alabama time.

And for that, I send you all my thanks and love.