joelevangreen.com

We are only just beginning to make plans, but we expect Joel’s Memorial service to be Tuesday March 18th.  We will announce the exact time and location as we settle those details, possibly tomorrow.  Everyone will be welcome.

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Amy and I did not get much sleep last night. As the hours flew by faster than I could catch them, we prayed, we grieved, I cuddled my sweet son as tightly as I dared, examining his face and hands and toes and belly button, taking pictures of us that I will never show anyone else, and sweeping the hair across his forehead over and over again.
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Joel fell asleep at home. Surrounded by his family and friends, only hours after we had filled our home with songs of worship to our God and prayers for mercy and healing for Joel and for ourselves from the voices of our church and friends and family.
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As I awoke this morning after an hour of sleep, I lingered in the early morning light of our room, his body cradled, as always, in the crook of my arm. Except instead of the sweet sighs of comfort and the warmth of his little body against mine, the moors of death had tightened, leaving Joel’s earthly tent, cold and breathless.
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And so now we mourn, and we weep, we rage and we argue with the God who knows how the story will end. And we laugh with our family and friends, and sob in the quiet moments, and wrap ourselves in his blankets and wrap ourselves in His peace. The kind that passes all understanding as we make the decisions that will lay Joel to rest.
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We continue to contend; For a miracle of Grace; For resurrection life, in this life and the next; for our hope.  Hope that the story of our love for each other and the story of our Father’s love for us, will be more real and more true than it has ever been before.
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With all the fullness of emotion that makes this human experience so utterly beautiful, thank you for your love.
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-Ryan

Joel took his last breath at 1:52 am.
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We took Joel to Children’s Hospital today, and it was so good just to be able to ask all our questions and get solid, directional answers. Not knowing what the declines we were seeing in Joel meant or how to handle them was becoming pretty stressful. Our wonderful nurse who we have known for over four years now, asked us about our time in San Francisco, and how Joel was doing, and then she told us that to her it was pretty obvious that Joel was really uncomfortable. She watched the way he hit his head with his hand and how he moaned and fidgeted, and told us she thought he really needed to be on continuous iv pain medication. Honestly this is a pretty big jump for us, it skips oral morphine and other oral pain medications altogether. She said that for the first 12-24 hours the iv pain meds, which are both sedatives, might make him groggy but that after that he should perk up and be more himself.
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She told us we could take out the ng tube and not give Joel any more feeds through the tube. She said that usually when people stop swallowing it is to protect them from food their bodies can no longer tolerate. She said if he seems to want something we can give it to him and if he drools it out or coughs it up that’s fine. She said we could come off the steroids over the next few days, because at most the steroids would give Joel two or three extra days, but that they are toxic, painful and cause aggravation so the extra days aren’t worth it when he could be more comfortable instead.
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She told us we could take him off the oxygen, and stop monitoring his heart rate and oxygen saturation levels but just watch him and give him oxygen for comfort, or if he seems to need it, but that it’s ok for him to be breathing less.
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We pulled out the ng tube and we agreed to the iv meds, but we stopped short of taking him off the oxygen. It was just a tough leap for us. We want Joel to be as comfortable as possible, and it’s hard to imagine that he doesn’t need the oxygen. We took him off for a few minutes and walked him around the room, but his lips turned blue pretty quickly, so we put him right back on.
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We aren’t sure about the ng tube either, even though we pulled it. We are fine with not giving him feeds anymore, but we are worried about him staying hydrated. Hospice told us they don’t usually do iv fluids, and we don’t think Joel will be able to drink enough fluids to stay hydrated on his own. Our goal isn’t to try to keep him from dying, we know that, in the end, only God can give Joel the kind of life we would want him to have, but at the same time we worry about accelerating anything by letting Joel become dehydrated.
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We asked our nurse how long she thought Joel had left, based on what she had seen and we had described, and she told us a week. We are not surprised. His decline has felt pretty rapid to us in this last week. We have talked to the children more about why we want to help Joel be as comfortable as possible, and that we know we can’t do anything now that would bring back the Joel we have enjoyed so much for the past five years, but that God could not only restore Joel to what he was, but also give him the life he has never had yet, a life that would let him run and play with his brothers, talking to them and learning to read like other 5-year-olds. We told them they can ask us any questions they have at all, even though we may not know the answers to some of them, we will always tell them the truth. They cried a little, asked a few questions, and tonight they roller-bladed and razor-scootered through the house in costumes, pulling along an inflatable t-rex. They are taking things in stride, probably better than we are.
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I wrote everything up to this point a couple hours ago, and then waited to make a few phone calls to family. In the meantime, Isaac brought Joel some water and thought he might want it. Sure enough, Joel seemed really interested. I made Isaac get him a very small cup and fill it with very little water. After Isaac left I let Joel have some and he took a few minutes but eventually drank it with interest. When he finished drinking he began gasping and choking and coughing and gurgling and it was truly terrible. I called Ryan down and we held him together and prayed that he would stop choking and be able to breathe. Eventually the choking stopped and Joel fell asleep. All of this to say, we definitely will not give Joel any more water, even if he seems to want it. As he was recovering from his choking fit Ryan and I talked more about whether or not we would give him IV fluids, and we did not come to an agreement. We will talk with our hospice nurse about it more, and hopefully come to a conclusion together.
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We know that nothing we give Joel now can bring to us the life he had, but that God can, with a word, give Joel a life he has never yet experienced. Right now, things can not go back to being ok anymore, but there is a possibility still, nearer than it has ever been, that things can be unbelievably amazing. For at least three years now I have suspected that if God was going to give us the giant, crazy miracle that I have longed for, it would be right at the very end, on Joel’s death bed. Since I have felt this way for so long, the things I see now do not make me any less hopeful than I have ever been that Joel will be healed. These hard things we are facing are not accompanied by despair. They are sad, but not horrifying, and that already feels pretty miraculous. We can’t lose more than we are losing already, but we stand to gain a great deal, in a very short amount of time, if God moves on Joel’s behalf now.

Yesterday was kind of a rough day. Joel had a few hours when he did really well, and then a period where even though his tylenol should have just kicked in he seemed like he was in pain and very frustrated. When this happened he would only calm down if Ryan would stand up while holding him. We decided to give him morphine and then realized we had left it in San Francisco, in the hour we waited for hospice to get us new morphine we decided to put Joel in his stroller and take him for a walk. The walk perked him up completely and he no longer seemed to be in any pain or have any frustration. It’s hard to know when he hurts or when he’s just bored or annoyed since he can’t tell us.
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We started doing anti-nausea medicine before his feeds since he wasn’t tolerating them well. The first two went great and I thought we had a good solution, but his third one, an hour and a half after a new dose of anti-nausea medicine resulted in vomiting. Since the muscles Joel uses to swallow don’t work well he doesn’t vomit well either, he coughs and formula comes dripping out his nose and he gurgles and chokes, and it is really terrible. It seems pretty unsafe for him to vomit like this we since it is likely he is having vomit come up into his throat and then down into his lungs. Today we are going to try to do three feeds that are just half the size of his normal feeds and see how he tolerates them. If this doesn’t work I suspect we’ll begin a conversation about iv nutrition.
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It is hard being so unsure of what Joel needs, and when to take the next steps. I suspect when we’ve been home a little longer and working with his hospice care team more we’ll feel more confident about how we take care of him. We are about to take him to children’s hospital to have his last appointment there, and see if they can get his port working again. We will also ask them a lot of our more pressing questions about his pain and his feeds.

We have arrived home safe and sound. I was pretty nervous going into our travel day home. I don’t like to fly anyway, and I was nervous about all the things that could go wrong as we tried to get Joel home to the Denver airport. Before we could leave the hospital, they tried to draw blood from Joel’s line and it didn’t work. We tried re-accessing his port two times, once with a longer needle, and then we gave him TPA (a drug that helps dissolve clots in the port, and nothing worked.) They finally gave up on getting his counts and let Ryan and Joel leave anyway, but I imagine we will need his port working, since he is likely to require pain medicine before too long. Tylenol is working fine for now, but we want to be ready, and part of being ready is being sure we can administer iv drugs if we need to.
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Once Ryan and Joel left the hospital, Joel perked up a little. On the walk back to the hospital Joel pointed at a few dogs they passed. They arrived at the family house just five minutes before our shuttle arrived to take us to the airport, but I didn’t have time to stress out about it, because the kids and I were only ready to go ten minutes before the shuttle arrived anyway.
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We had four suitcases, two boxes, and three car seats to check, but it went smoothly and easily. Security was a breeze, and we got to the gate three hours early. (We didn’t want to take any chances.) As we waited for the plane Joel was very calm. I was just so relieved to see that he was not getting upset or anxious, even when Ryan left a time or two.
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With about half an hour to take off we got a big surprise, the entire flight crew came out to meet Joel and us. They brought Joel a crown made of airplane peanuts, a toy airplane, and a basket of snacks and toys and activity books for all the kids. They took photos with us, then they escorted us onto the plane and gave us all ice cream bars. They let all the boys go up into the cockpit of the plane. Just sitting on the plane Joel perked up. He was looking all around and really paying attention to what was happening. He seemed so excited about everything, then Ryan took him up to the cockpit too, and as soon as he sat in the pilot seat he reached for the steering stick (not the official name, I’m sure.) He really loved seeing all the lights and monitors. As the plane began to taxi he really watched the lights on the runway. For the entire first hour of the flight he was very engaged and energetic. It just amazed us.

I honestly could never have expected that our flight would go so well and that we would be treated to such a special surprise. My boys felt really special. Then our pastor and worship-pastor picked us up from the airport in a super slick bus from Summit Limousine in Fort Collins, who has blessed our family abundantly again and again. As we pulled up to the house and I stepped off the bus, and saw our van already waiting for us, I marveled at how, in the end, the entire trip home was completely stress-free, every detail was worked out for us, and we were just taken care of so completely every step of the way.
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Then we stepped into our home. Everything was so clean, nicer than we left it for sure, and as we walked around we saw that our bathroom had been painted and re-decorated, our cupboard, fridge and freezer had been filled with food, our table had fresh flowers on it and giant basket of treats. Then we went upstairs and discovered a nursery for Zoe. The room had been painted, there was a brand new crib (our old one, used when we got it, was not likely to make it through one more Green baby, as it was in pretty sad shape) decorations and things I had bought years ago for Zoe (who turned out to be Isaac) had been found and set up, along with new decorations that just delighted me. Zoe’s clothes had been placed in the closet. It was amazing because with just six weeks until Zoe comes I have really had no time to focus on getting anything ready for her.
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Then we went in the boys room and found that all their clothes had been organized and put away and there were new pictures on the wall, and things set up for them. Our room too had new surprises, a dresser from our basement had been brought up, and our closet was completely re-organized with all our clothes in-order and established. I don’t remember who saw our basement first, but they called me down and it was amazing. We had left our basement a complete disaster. When we left, there was so much dirty laundry and things were just an all-around wreck, and when we returned every single thing from our crazy basement was in a labeled bin. All our clothes had been washed and put in rooms or bins in the basement. I looked around amazed because it looked like the product of 100 hours of work, and it was something I never could have hoped to do. The boys ran around the house gasping and declaring their amazement at every new change they found. Caleb was overcome and kept saying, “it’s so nice, it’s all so nice, they did everything, I just want to cry.” Today they have loved finding their bike helmets in the “sports” bin and costumes in the “costumes” bin. They know exactly where to put their things away, and they’re excited to help their messy parents keep things nice. My understanding is that many people helped do this for us, and I am still in complete awe that our home can feel so settled, and pretty and organized. Several of my friends from church and other areas of my life worked so hard while we were away for two months, knowing that whatever conditions we returned home under, having a stress-free, clutter-free home would be important.
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They have done something for us I can never re-pay or even express enough thankfulness for, and the truth is, it is not the first or even the second time my amazing friends have done something like this for us. Ryan and I have always been so messy, and as the years have gone by, God has done an incredible, and very slow work in us, as we have learned little by little how to maintain our home better, and teach our children to live an ordered life. It is still a struggle for us, and we go through rough patches where the mess gets overwhelming again, but when I compare our life now to ten years ago I see victory everywhere, but only because our friends, many of them these same ones, have again and again, and again, so many more times than we deserved, helped us, cleaned our home, taught us little by little how to keep up with tasks we both dislike, but know are important. I’ve never seen sacrificial love on display more powerfully than the way our friends have loved us through our disfunction, always having grace for us, never growing weary when we need help again. We returned home to the most amazing gift, and I look around my home and see love and support on every wall, in every organized drawer and bin.
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We went to church this morning and it was hard to walk in the door. Everyone loves Joel so much and their emotion over him made us emotional. We cried through the first half of church and gave an update about where things stand now. When church was over people gathered around us to pray for Joel, and they lingered so long, continuing to pray, not wanting to quit, and it was such a picture to me of all the people who have persisted along side us, praying for Joel, never quitting, ready even still to persist further in faith for Joel.
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We are loved more than we deserve, and it just doesn’t stop. Our church has lined up meals for us for the next two weeks. People we have never met have deposited money into our paypal account, an amazing help since Ryan has not worked for a week now and we are unsure how long it will be before he starts working again. We are loved at every turn, provided for before the needs can even present themselves. We left for San Francisco, having received such an outpouring of blessing from everyone around us, and I never imagined we would return home the same way. God has provided abundantly for us, through the people in our community, our children’s schools, our church, our friends, and people around the world who follow Joel’s story through his website or his facebook page. I am amazed at how big our God is, it is easy to believe that nothing is impossible for Him.
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Joel remains about the same as before we left from San Francisco, we noticed a new muscle twitch in his forehead yesterday but we don’t see it today. He was not tolerating his feeds, but now we give him zofran before them and that seems to help. We have begun to work with our local hospice, but so far tylenol still seems to be enough for managing pain.
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Ok here are a million pictures of our flight and the nursery, I thought of also posting photos of our basement, but I know that doesn’t have the same crowd-pleasing cute factor of a nursery, and peanut crown.
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It is 4:30 in the morning, and I am in a hospital room with Ryan and Joel, awake. It reminds me of all the other times I’ve been here, with the world frozen, nothing important happening but the three of us together in a hospital room. Everything happening outside this room can wait. It won’t wait long. In a few hours I will go back to my other children, and my friend who is staying with them. We will clean the room where we’ve been staying and make lunch and put together airplane snacks. But, for right now, there are no decisions I need to make, no one who is waiting to hear back from me, there is no one I must reach out to at this early hour. There is just the almost silence, interrupted by the whir of machines, Ryan’s gentle snoring and the occasional whimper from Joel that tells me he’s not really sleeping, but he’s not insisting on being awake yet either.
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I remember so many early mornings awake in the hospital. Over and over again, I would wake up between 4 and 5 am, and God would give me something to say and time to write. This is how everything began, over four years ago: dire circumstances, colored more by the expectation of a living and active God about to move, than the grief I knew was “supposed” to be framing my vision.
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I have spent the last two days working to get ready to go home, interrupted by quick trips to the golden gate bridge, the academy of sciences, and the hamon observation tower with the kids and my friend, because we didn’t really know when we were leaving anyway and it was the last few days of our time in San Francisco, and no matter what happens with Joel, my children are still children, and they run and play and laugh and that is beautiful. Admittedly, the field trips were foolish and left us more tired by the afternoon than we should have been with so much to do and so many decisions to make, and such weighty emotion waiting for me each night, when I have left them and come to my quiet, stark oasis with Ryan and Joel. During the day I am physically drained and at night I am emotionally drained, and it is almost too much, but isn’t. The one relieves the other somehow.
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Last night Joel and Ryan and I crowded together into his hospital bed and took photos and videos and sang the same worship songs that have been on my “Joel play list” for over four years now. We sang “Your Hands” just like we sang endlessly the first week we spent in the intensive care unit with him, we sang “Hope Now,” the song I returned to again and again one-year-in when Joel had “run out of medical options” for the first time and was “about” to die, we never even got to the songs that have been added to my list since then, the ones like “furious” that have held the weight of my heart and reminded me that God is even bigger than this hope that roars inside of me, daring the darkness to just try and thwart the plans of the Almighty God, and see how He will defend us! (I went ahead and hit play on that one just now.) These songs remind me that God has been leading us, every step of the way, showing us who He is, teaching us how to walk with Him.
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In this hospital room the interminably long last four years with all their ups and downs feel short, so short, (and even though you would not believe it, sweet.) This fight is really ending after all, and it was the blinking of an eye. I feel like I have caught glimpses from the corner of my eye of the picture God is painting, I have heard whispers in my spirit, and could almost discern the words, I have remembered the melody of a song whose lyrics I can’t quite recall but I know that the theme is always life and glory. I will finally see the finished work, and I am excited to see it, even though I know people don’t understand.
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I’m sure my expectation looks like denial, but seeing Joel dying does not make me any less certain that he will be healed. In some ways I feel more certain, not because the same doubts don’t come to me, but because I know they will not be entertained much longer, because this chapter is almost finished and we will have an ending, one way or the other. So the doubts and fears, that make me re-affirm that “even if I’m wrong” this is where I stand, become less and less powerful. People’s conciliatory words of comfort, meant to reassure us and help us accept Joel’s death, don’t sit well with me. They aren’t offensive because I know the heart behind them is good, but they are weak words, because it is so obvious to me that death is the given, I don’t have to work to be ready for it, or accept it. It is coming whether I would accept it or not. It has been coming slowly for so long. I don’t have to work to understand that Joel is dying. It is obvious. Heaven is amazing, and so I’m not worried about death, it will come regardless of where I stand and wait, but now death is circling close enough for redemption to finally feel closer. This is the part of the story where a daring rescue can thwart death’s intentions just in time, perhaps when it looks like it is already too late. I want to watch for that. I don’t need to focus my eyes on death, studying it and its slow progression, its course is clear already, but there is a glory that is coming and its journey to us is wild and quick and frightening, and I want to be watching for that glory, I want to stand trembling in Awe before God and His power, not sure that this thing we’ve asked for is something we can quite manage, but trying anyway. Death is the given, but the life that is possible now for Joel, the miracle that could come, now that death is so close, is something worth pursuing, worth risking everything to see with my own eyes. There have been many words spoken to me that remind me that this is all I want, to see God’s glory here, in this life, for my son, and that maybe just maybe the chapter whose words I can see come to an end just a page or two from here, ends with that glory. Those impossible words of expectation are what comfort me, and remind me I’m not the only crazy one!
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I can’t help but think of all the false-alarms we’ve had, all the times I’ve written similar words about Joel not having much time left, but those words before were based on expectations placed on him by his medical prognosis at the time. This time I don’t have to be told Joel is dying, I see it clearly. His temperature is low now. I no longer hope we can get him off oxygen. I see him now and know that the long phases where Joel stares blankly into nothing will come more and more often now and last longer each time. I used to hate all the false-alarms, all the times I would declare that either God will save Joel or Joel would die, knowing I had said that before, and in the end that stark fork in the road had never quite materialized. I don’t resent all those false-alarms now. They were practice for this moment. I know what it means to have Joel on pain medicine around the clock. We’ve done that already, the grief of that moment isn’t new, so it will not startle me when it comes. I know how it feels to stand in this place already, this time I just have to stand a little bit longer than before, but I’ve practiced my stance so many times that it feels comfortable now.
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This may be the last early morning I spend in a hospital room typing away while Joel and Ryan sleep. When we go home he will be under hospice care in our home. I suspect we will not admit him to the hospital anymore. For better or worse Joel’s fight with cancer is about to be over, and even though it looks foolish, I am excited, because I’ve already lost what there is to lose of Joel, death would just mean I can’t hold his body while I long for what he used to be, but a miracle now would mean finally getting the chance to know this boy that I love, and watching as the world is introduced slowly to a man with a calling and a destiny, rescued from death for a purpose that makes the devil tremble.

It has been an exhausting few days.  I am physically worn out from all the work we’ve done to be ready to go home.  I’m emotionally worn out from all the waiting and uncertainty.  Ryan is drained from spending three days almost exclusively in a hospital bed holding Joel, who is both needy and not really there at the same time.  We are so ready to be home, but if I’m honest, I’m dreading tomorrow and all the travel we’ll be doing.  It will be the first time Joel has been out from under hospital supervision since Wednesday, and we will be traveling to an airport, flying, and getting back to our home.  I’m usually pretty good about not worrying in advance about things that might not happen, but I can’t quit wondering what we would do if things became difficult on the flight home.  I’m not just worried about Joel not breathing, but I’m also worried about how agitated he gets when he’s not comfortable and when he doesn’t get what he wants.  I worry about him having to sit in his own seat for take off and landing.  I worry about too many things, forgetting so quickly that no matter what we face tomorrow God’s grace will go before us, more than I can imagine when my imagination runs wild now.

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Joel did not get any feeds all day Wednesday, with his respiratory problems they didn’t want to risk anything going wrong.  On Thursday afternoon they started his feeds again, but then this afternoon, after they gave Joel a feed he coughed and spit up his feed through his nose.  This concerned everyone, so they stopped his feeds again and have decided just to keep him hydrated through IV fluids.  We probably won’t risk giving him feeds again on our own until we are at home under hospice care.  Hospice is already set up for us and will meet with us when we get home, and set us up with oxygen at home and medications.  So far we have only given Joel tylenol tow times during his hospital stay, but I imagine once we get home his pain medication will increase somewhat.

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We should be getting into Denver around 10pm, so hopefully we will by home between 11 and midnight.  Our van just left for Colorado, generously driven by some incredible people, who probably had no idea what they were in for, so I suspect it will arrive pretty quickly after we do.

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Please pray for endurance for us as we are both pretty physically and emotionally stressed right now.  Please pray for Joel that he would have a very easy day of travel tomorrow and that God would give him (and us) a peace that passes all understanding.

Joel with his birthday card, March 7, 2014

We’ve received word that our insurance will not be covering a medical flight.  So in order to get home, we’ll need to assume the risk of a commercial flight with Joel and our kids.  The hospital is taking care of arrangements for special oxygen supplies.  Unfortunately, that equipment takes time to acquire and so we’re looking at having it delivered to the hospital tomorrow by noon.  This means we will likely be on a 6:30 evening flight tomorrow night.
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Please play that Joel remains stable, that his lungs are clear, and that he will not need more intervention than we can provide via our lone oxygen tank tomorrow on the flight.
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Of course, most of all we ask that you pray for a creative miracle in the land of the living. One that destroys this monster in his body and restores what it has stolen from our little boy.
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-Ryan

We are still waiting to hear the final plan to get us all home. The last we’ve heard they’re having a hard time getting the medical flight approved by the insurance. If we took the southwest flights home, Joel would need oxygen, but to fly on an airplane you needs specially compressed oxygen which costs around $500. Since we know the insurance won’t pay for the specially compressed oxygen, the social work team at the hospital here said they would pay for the oxygen; however, the earliest they can get the oxygen is Saturday. They also said that if Joel and Ryan fly separately on a medical flight that my friend who came out to help us could fly home with me and the other boys using the ticket we would have used for Ryan, so I would have enough help to feel confident about the flight home.
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Yesterday evening, as the kids and I were leaving, Joel became upset, and about 30 seconds after we left he cried until he held his breath and passed out again. Ryan was much calmer this time since we’ve seen this happen a few times this week, but the nurses were pretty concerned as Joel’s oxygen saturation levels dropped down to 10, and a nurse was just beginning to insist that they call the doctors when Joel woke up and began breathing again. Even though Ryan was not as panicky this time, it did make him realize just how fragile Joel is right now, and it made him really want to take Joel home on the medical flight, so we know that if he has special needs while we’re flying there are people available to help him.
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Joel seems mostly calm and happy. He has really loved holding his tiny stuffed dog, and watching Barney. When the boys and I were visiting yesterday we played in-room bingo and Joel won a craft kit, and spent a lot of time after that playing with markers until his hands and belly were covered with colorful streaks. Eventually he got frustrated that he couldn’t quite control the markers as well as he wanted to and threw them on the ground. His kit had a small bottle of white glue in it and he picked that up and pretended to pour it into his hands and then rubbed his hands together to “wash” them a few times. Joel also has moments where instead of wanting to play he stares off, very still. We don’t see him sleeping more than usual, but he does have his calm wide-eyed moments. Fairly often he will make little sounds and point his finger up in the air, the sign for “where” that he used to use a lot. He used to point his finger and say “where’ditgo.” He doesn’t say any words now at all, but he seems to point his finger up in the air anytime he wants to chat with us and communicate back and forth. So, when he points his finger up, I tell him about things in the room, or just talk to him more, and when I pause he points his finger up again, fulfilling his end of our conversation. He is still very adamant about wanting to be held in certain ways and wanting to have his arms scratched. I’m no longer convinced that Joel will be able to come off of oxygen as he seems to need it, and even this morning his saturation fluctuates between 92 and 95 instead of staying steadily at 100 like he did all day yesterday with the same amount of assistance.
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We will post here when we hear any plans for getting us home. We still hear talk about today or tomorrow, but it wouldn’t surprise us if it gets pushed back again, even though we know people are working hard to put a plan together for us.
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