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!

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!

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.