Christmas 2015

Merry Christmas 2015 and May A Happy and Healthy 2016 Be Heading Your Way.

This was a year of changes for our extended family, it was a scary and emotional roller coaster at times, but we are finding ourselves at the end of it with a lot to be thankful for.

First of all, as we have had so many of you asking about Mom

and Lance,                         

 let me update you on what has been happening with them this year.  Lance and Mom were living in Virginia with Brett and his wife, Emily. Mom’s dementia got really bad and she was hallucinating, and paranoid and unable to take care of basic hygiene. She tried to run away and got lost, so she has been in assisted living, not far from Brett and Emily’s home, for over a year. The first home really made her worse and messed with her meds, changing her from just insulin and blood pressure meds, to 27 different medicines a month later.  The home she is in now, she likes, but she fell in June and broke her hip and was in a hospital and rehab before getting to go “home.” She is weaker and needs a wheelchair and once when Brett went to talk to her and asked her if she was worried about Lance, she answered, “I’m worried about him, but I don’t know who he is. Did I meet him here?”

 

The reason Brett asked about Lance is that he has been really sick since mid August, and in the Hospital, in ICU and a Rehab Hospital again and again ever since September began.  He was nearly dead (not an exaggeration) before the Dr. decided to do emergency exploratory abdominal surgery starting at 10 PM. He came out of surgery around midnight, and they had found his bladder blocked and holding 800 ccs of urine when a normal adult male would be uncomfortable with 300 ccs. They cleaned out the infection and put in a drain, but that only began the journey.  He has kept getting sick when he leaves ICU and they reduce antibiotics.  He has had his gallbladder removed and had a bad case of staff infection in his lungs.  He still has need of the Rehab hospital, the staff infection in his lungs is gone, the gall bladder cured the need for the drain in his abdomen, but he still can't eat much beyond ice cream without vomiting and he still needs a catheter, so he still has an appointment for micro-biotic robot cameras to scan his abdomen in the end of December. He can walk, but has no stamina so needs a wheelchair when Brett takes him out. Three months now has been a huge financial drain on Brett's family. He'd be able to take mom out too, if he had a wheelchair Van, but of course that would be another big financial hit, so probably won't happen. Anyway, Lance sounded excited to be out of ICU, happy to talk and more energetic than I've heard in ages when he talked to Greg and me on Thanksgiving. Brett had sprung him from the rehab hospital to go eat Turkey with Mom at her Assisted Living Center.  Mom doesn’t really talk on the phone anymore, but Lance has a cell phone (540)-359-1413 and you can send cards and pictures and letters to them at the same address

  Lance Miller /PO box 865/ Middleburg, VA 20118

Then in October we had to face the death of the daycare grandma who had helped us raise our boys when they were toddlers. Nadine was a large part of who they became and of why we have a family of daycare cousins and their parents here in Crescent City. It was such a blessing to have had her so long.

So, now for news about the rest of us.  Greg and I have not changed as much as the other people in our families.  He is teaching again up in Brookings, OR. (year 10 I think.)  He only has choir this year, and with a local choir on Monday evenings is working with kids age 9 to High School.  He is also singing in the adult community Choir in Crescent City.  In February he flew a bunch of kids to Spokane for the All Northwest Choir Festival, while I went to Gold Beach for a writer’s conference.  I am still substitute teaching, and writing, and finished my sixth book this November which I hope to have edited and available by the beginning of February. This summer he tried his hand working with Special Ed. and taught a summer school class before we drove to Wyoming to visit his family.  Mimi and Harvey were both doing great, and had celebrated their 65^th anniversary in June. All of Greg’s surviving siblings were there, but the only one from our children’s generation (The grandchildren) who made it, was our niece Remi, at age 15, just back from touring China with the Tucson Girls Choir.  Mimi and Harvey have three great-grandchildren, but none of them could be there either. We did manage to get to Laramie, and saw our nephew Colton there as well. 

Emerson and Lula’s daughter, Daisy turned 1 on April 28^th, and we were able to spend a lot of time with her between April and September when she was living part time with Emerson and us, and part time with Lula. Now we are happy to say that Emerson and Lula are back together and Daisy is happy being with both parents, but selfishly, Greg and I miss having the little Miss Daisy here on a daily basis. She has totally stolen our hearts. Emerson and Lula both work as assistants in the School District where I sub, and they both had summer jobs as well.

Austin and Trisha seem happy and busy but we don’t ever see enough of them either.  It has been hard going from being Mom and Dad to being empty nesters for Greg and I. Still we are lucky that they live in the county here, so we do see them a couple times a month at least.  They have been keeping us in firewood, and have gone to dinner, or celebrated a holiday with us occasionally.  I am excited to see Trisha’s baby bump growing and to welcome our second grandchild in May of 2016.  Austin is still working with the crew he supervises at G & H outreach, a group of handicapped adults. He seems to enjoy the fact that a lot of their work is outside and active. They appear to be happy and that is really what parents want most of all I think.

So that is the news, and I hope next year is less newsy and more peaceful. Merry Christmas!

Love,

 

 

Dixie and Greg

 oh and PS. I did get my novel finished, at least the first draft, in the NaNoWriMo month of November. Yes!

Lance Miller Update to be Thankful For

remember, if you have a moment, a photo, card or postcard can make his entire day.  and Thank you again.

Lance Miller /PO box 865/ Middleburg, VA 20118

 team Lance Miller update 11/26/2015
Today Lance Called to Say "Happy Birthday, Greg!" And he was in Brett's Truck on their way to Mom's assisted Living Center to eat Thanksgiving Lunch with her. He is still in the Rehab hospital, the staff infection in his lungs is gone, the gall bladder cured the need for the drain in his abdomen, but he still can't eat much beyond ice cream and he still needs a catheter, so he still has an appointment for micro-biotic robot cameras to scan his abdomen in the end of December. He can walk, but has no stamina so needs a wheelchair when Brett takes him out. Three months now has been a huge financial drain on Brett's family. He'd be able to take mom out too, if he had a wheelchair Van, but of course that would be another big financial hit, so probably won't happen. Anyway, Lance sounded excited to be out, happy to talk and more energetic than I've heard in ages. Thankful he is my brother and has so many who care about him!

Lance Miller Update November 3rd 2015

 From September 1st to November 3rd should be long enough that I no longer have to worry about my brother, Lance Miller. But of course life isn't in my hands and I don't get to decide that the most joy filled, giving person I have ever met, should be healthy and not have to suffer.  Even the most wonderful life has suffering. We all learn that eventually.

 But even ill and in and out of hospitals and rehab and the ICU for two months, Lance has the ability to look forward to the holidays with joy.  He says "And in November is Thanksgiving, and after that, Pretty soon now, is Rudolph the Red Nosed Reindeer and Frosty The Snowman and Christmas."  If you can imagine what life as a child with Down's Syndrome is like, and you remember the "we're all misfits" theme of that old Rudolph show, you will understand why, even at 40, Christmas begins and ends with watching the show about the Reindeer who just doesn't quite fit in, but leads the way to Joy.

remember, if you have a moment, a photo, card or postcard can make his entire day.  and Thank you again.

Lance Miller /PO box 865/ Middleburg, VA 20118

So what is the most recent news? Well he was sent home with a drain in his abdomen and still on a catheter. He was supposed to wait a month and then see a specialist in another hospital with some high tech, very non invasive, micro robotics camera that could scan his abdomen and figure out where the problem is that keeps him failing every time antibiotics are stopped.  But he didn't manage to make it the month.  He kept getting weaker and stopped eating anything but a few grapes, so he was readmitted and a new scan revealed an inflamed Gall Bladder.  That had apparently been blocked by the more urgent leaking kidney and the blocked bladder, but with those dealt with, and him still ill, they decided to remove the gall bladder.  The surgeon told my brother Brett, that this was the worst gall bladder he had seen in his career and hopefully it would solve the mystery.

That news was one time when being the worst might be good news, but very soon after that surgery his blood oxygen levels bottomed out.  The medical team couldn't get him to stop trying to take off the oxygen mask, so had to insert another breathing tube, which meant that, four days ago he was readmitted into the ICU from the surgical recovery area.  Soon, as in within half an hour of putting him on a ventilator he was doing much better and they diagnosed pneumonia, which is scary, but at least doesn't mean that something other than the gall bladder was causing the abdominal issues.

Today, Brett says that they had him out of bed yesterday, standing for awhile and he is strong again, but his breathing tube is still in and therefor I can't call and talk to Lance.

Sadly, on the other worry, My Mom's dementia means that when Brett asked her is she was worried about Lance, who has been the center of her world for 40 years, imagine permanently having a ten year old, she said, "Yes I am worried about Lance. But I don't think I know a Lance.  Did I meet him here?"

News for Team Lance Miller, Oct. 8. 2015

For a week, I haven't posted here, but I have been talking to Lance on his cell phone in the Rehab hospital. Every day he sounds stronger and happier and now he doesn't talk much about how he feels at all.  He is caught up in living life again.  The conversation today told me that our niece is living and going to school at the High School Lance Graduated from.  A fact that makes him very proud, and he reminded me, "You too, Dixie Miller Goode, You graduated Cody High School like me."  He also told me he rode the exercise bike and used a medicine ball and had to do laps in the hallway using a walker, not canes.  He told me pretty soon is his birthday and then he can be a murder for Halloween.  Not sure if he wants to be a victim or a killer but he knew what he had planned.  He wanted to hear every detail of where my family spent the day, and what each of us ate for breakfast and lunch nd he wanted to tell me that he was in room 109 in "Your Mom's Hospital, Dixie."  which I think means that he is still at the rehab center where she was, after breaking her hip early this summer, but could possibly have meant he was visiting Mom.  I really need to talk to our other brother because Lance can tell me a lot, but can be very stubborn and unclear when he'd rather talk about something else.  He knows exactly where he is and how he is doing, and is kind of bored by that, so he wants to talk about Thursday night Football, and if I should be Groot or Spongebob for Halloween.

 He has a bit longer attention span for the phone as he is feeling stronger, but still, when I press him on when the Dr. says he will be well enough to go home, suddenly he is telling me, "Oh yeah, I have to go. I'll call you tomorrow."

 Cards can still be sent. And since October 24 is his 40th birthday, Hopefully he will be home by then.  He sounds excited about his birthday, and almost as excited about Halloween but then he becomes quite eloquent as he starts reminding me, "And in November is Thanksgiving, and after that, Pretty soon now, is Rudolph the Red Nosed Reindeer and Frosty The Snowman and Christmas."  If you can imagine what life as a child with Down's Syndrome is like, and you remember the "we're all misfits" theme of that old Rudolph show, you will understand why, even at 40, Christmas begins and ends with watching the show about the Reindeer who just doesn't quite fit in, but leads the way to Joy.

Lance Miller /PO box 865/ Middleburg, VA 20118

Edited later the same day after talking to my Brother Brett.

I called Brett just as he was getting home from 2 weeks out of town for work, before he even walked in the door of his house.  He had been in North Carolina and in Kansas trying to catch up on details that slip while taking care of sick family.  What he had to say is tempered by the fact that he wasn't there last week to talk to Lance's Dr. but the news from the week before that wasn't the best.  I guess that even though Lance is in a rehab facility, the repair from the abdominal leak between his kidney and bladder appears not to have been totally successful. They are not certain what is still leaking, but Lance is still on a catheter and they were considering moving him to a specialty hospital (I think he said in North Carolina?) that specializes in Robotic surgery because those cameras and incisions are small and therefore a lot less difficult for Lance to recover from, since each surgery has been really hard on him.  Anyway, It sounds like he isn't in the clear yet, and his insurance is getting pickier too, with time limits on his stay where he is.  So when Brett lets me know more, I will let you know what I do.

Lance Miller up-date Oct. 2, 2015

 I talked to Lance today in Shenandoah center in Charlestown, West Virginia where he is still spending time in rehab/physical therapy to regain his strength and confidence to take care of his own day to day tasks.  He tells me they have been making him ride an exercise bike and have given him canes to walk with.  He says he Had a chicken Sandwich for dinner and if I let him go soon he can have ice-cream for dessert. He tells me to call every day, but when he gets tired of talking that is it, "I have to go now, talk to you tomorrow."  CLICK

Today he also says Brett is in North Carolina at the beach but Emily is still there in Virginia to keep an eye on him.  Emily is my incredible sister-in-law.  I feel more reassured by this news than almost anything else except the happiness in Lance's voice.  I know Brett wouldn't be leaving for anywhere, any amount of time unless Lance was doing pretty well.

 Mail can still be sent to his home address below  and I've said so many times that Lance loves getting mail.  So thank you, several people have let me know that they sent him cards and packages. He says "Thank Your friends, Dixie, they are nice cards, I am reading cards and one is for Wendy's for french fries and hamburger and ice cream." so I know someone's gift card pleased him. I told him, they are not just from my friends, they are from his friends.

 Cards can still be sent. And since October 24 is the 40th birthday, Hopefully he will be home by then.

Lance Miller /PO box 865/ Middleburg, VA 20118

One of Lance's pride and Joy moments was when he was recognized in the Cody Enterprise for 19 years of good work.

Who wouldn't Smile for Princess Jasmine?

Update on Lance Miller, my brother.

September 23 update: Good news for Lance today as he is leaving the Hospital and headed to Shenandoah center in Charlestown, West Virginia to spend time in rehab/physical therapy to regain his strength and confidence to take care of his own day to day tasks.  Mail can still be sent to his home address below

5:00 PM (eastern Time) 9/23/2015 I talked to Lance on his phone in his new, temporary room in the Rehab. Center.  He was ordering a real meal, Mac and Cheese, and excited to have "Mom Priscilla's Doctor's" which means he is comfortable being in the place he visited mom in this early summer when she was recovering from a broken hip. Lance was out of bed and walking a few steps for the first time since 9/1/15 and it scares him to think of going home but he is glad to be getting stronger.  If you are a friend and want his cell phone number let me know.

Team Lance Miller has been wonderfully supportive and the update is positive but the road ahead is still a long one, so if you feel moved to send him a get well card, Lance loves getting mail.  

 cards can be sent. 

Lance Miller /PO box 865/ Middleburg, VA 20118

Among his favorite things are Ninja Turtles, Pro Football, The Steelers of course but any team too. He adored working at Walmart so Walmart and Cody, Wyoming memories make him really happy.

This is the best because he is well on the road to recovery and delighting in the mail he has received 

This was after the first time that he got out of ICU when they allowed him to have his first food or drink in a week and it was chocolate ice cream

and this was the scary time in ICU when they had to have a machine breathing for him and were saying, It is a matter of life and death and could go either way.

The best news has come in recently.  After Lance went into the hospital 3 weeks ago, when his body was so infected it was shutting down and he needed life support and emergency exploratory abdominal surgery, things looked desperate.  Then when they knew the problem was a tear in the tube between Kidney and bladder, there was no way to do the surgery to repair it until Lance was stable, and he kept doing things like getting blood clots in his lungs, and ending back in ICU. But the medical staff never gave up.

I am happy to report that they have completed the repair surgery so that he should not need to have any more surgery but then he got an infection still he is slowly recovering. His next step once the hospital determines he can leave their care, will be three weeks in a rehab center and then home with our other brother.  He now is alert and has his cell phone on him, so I can call him directly and he sounds stronger all the time. Still his birthday is October 24 and he is afraid he won't be home by then.  Keep the prayers coming.

Updated for those who know I love my brother with Down's Syndrome

Edited to add in an update at the bottom of the post

Lance, Mom and my Dad's sister

Twice I have written about my brother Lance on this blog.

http://echo-echosvoice.blogspot.com/2013/07/my-brother-is-so-up-about-his-downs.html

on this post which begins by telling about the other post

My Brother is so Up about his Down's Syndrome

Lance and Our Grandmother's Brother

Once I was 12 years old and my Mom had a baby and my world changed. Prior to his birth we had never even heard of the children, called "mongoloid" at that time in our lives, so we thought his "condition" was a "tragedy" which would make his life painfully difficult. We already loved him enough to not be thinking about how it would change us, and we'd never have imagined the joy it has brought.

I wrote about Lance earlier in a post here

http://echo-echosvoice.blogspot.com/2011/10/my-brother-has-downs-syndrome-and-i.html

My family visiting just after Greg and I were married in 1984

But now I have to write that things are not going smoothly for my hero,  A couple years ago Lance and my Mom had to leave their home in Wyoming to move to Virginia to live with our other brother, Brett.  Brett is between Lance and I in age and has been amazing at stepping up to make a home when my Mom began to suffer from memory problems and confusion that kept her from doing necessary things like taking her diabetic blood sugar pills, or paying the phone bill.  At first the depth of her problems were camouflaged by how competent Lance is.  He kept her attending their daily and weekly routines,

 "Time for work, Mom."  

"Dinnertime" 

"It is Wednesday, we have Bingo tonight."

but the things Lance didn't know about, he couldn't remember for her.

So Lance and Mom now live 3,000 miles from me, and I don't see them much.  The fact of expense and time and work and kids have all given me excuses to think a phone call and letter and occasional package were all I could do at the moment.  Then yesterday afternoon I  got a call from Brett, and he was in tears, saying, "I'm not calling with good news." so I assumed it was Mom, and was stunned when he said, "it's Lance." I guess several people in Brett's house have been sick with the flu, so they thought that was what was going on with Lance, but out of the blue, getting ready for a shower, he collapsed and needed an ambulance and is now in Valley Medical, on IV and antibiotics and getting MRI and CAT scans and they do not know what is wrong, but the Dr. shook his head at Brett and said, "This is life threatening."

Lance driving to feed the animals on our brother's home ranch

a couple hours later Brett texted me: "they found a football size fluid in his abdomen. They still do not know what is wrong but that is what we do know. He is so sick."

Then I thought we were losing him. Brett sounded totally distraught in his next call, he said in the last hour he's gone really far down hill and there is internal bleeding, and fluid filling his abdomen and they are putting him on life support with a ventilation tube. Brett has been told he can only stay in the room with him until 10 PM eastern time and then has to move out to waiting room.

But by 10 they knew Lance would not survive the night and rushed him in for exploratory surgery. He came out of surgery around midnight, and they had found his bladder blocked and holding 800 ccs of urine when a normal adult male would be uncomfortable with >300 ccs . They cleaned out the infection and feel positive that he has a chance to survive now but they still don't have all the issues figured out.

the last bit that I know came in this morning

Ok, 9 AM here Noon, where Brett and Lance are. Brett just left Lance's room to go get some food and called to tell me what he knows. Lance is awake and giving the thumbs up when asked how he feels, but can't talk as he still has a ventilator tube breathing for him. They know the infection started in the kidneys or urinary track somewhere, but are not sure exactly how or what it is. They are giving Lance a ton of broad spectrum antibiotics and keeping him hydrated and on pain medicine so he is drowsy and still going to be in ICU for quite a long time, maybe weeks. No flowers are allowed in ICU but cards can be sent. 

Lance Miller /PO box 865/ Middleburg, VA 20118

One thing I need to add here is that my earlier blogs mention the hideously cruel treatment Lance faced from medical "Professionals" in the first years of his life.  That has not been the case here.  Brett says the Dr.s and nurses have gone out of their way to explain that they have friends and family members with Down's Syndrome.  Higher than the average population even because many medical people wait until they are older to have children and that increases the risk.  Lance was born in 1975, and is turning 40 in October this year, God and the wisdom of these professionals willing. One thing I know with absolute certainty, is the attitude of the world toward these people and their extra chromosome has changed in those 40 years, and the love and compassion coming back to him now, is a reflection of who he always has been.

Prayers welcome of course.

Lance and I in Virginia, July 2013

Mom and Lance at the Smithsonian Museum of the American Indian

With cousins at Thermopiles, Wyoming

Riding Red Devil at Hell's a roaring outfitters

http://www.hellsaroarinoutfitters.com/about-us/

On a trip to build homes in Santiago Atitlan in Guatemala

Latest Lance Miller update from Brett on Sept. 2 at 6AM


"Lance has not been making the improvements necessary to consider him on the mend quite yet.  He will be going in today for a second surgery.  The good news here is this surgery is solution oriented.  They have found the source of urine leakage into his abdomen and will be placing a tube from kidney to bladder. Lance is still very, very sick.  His white blood cell count is 4 to 5 times that of an average person who is very sick.  I believe he will come through all of this and be back to terrorizing the local restaurants very soon."

Team Lance Miller update: 9/02/2015 12:15 from Brett 

Lance's surgery is postponed for at least today. They are giving him some more time to heal and get a bit healthier before performing surgery again. This surgery is necessary but not an emergency this time. Lance looks good and is getting back to his usual sassy self but gestures that he is happy to be in the hospital getting better. Leaving him rest now. He had 12 IV bags running earlier today.

9/4/15

My phone was down with the rest of a large part of the Northernmost of CA on the third so I didn't get the update until today when our brother got through to say he had no real news. Just rest and recovery in the ICU yesterday and that will probably continue today. Today's also our Dad's Birthday and I still have to remember that with a sad little smile because even though I've been missing him for 18 years, I'm really glad he was born. Happy Birthday, Paul Miller.

Last on 9/07/2015
Lance is off life support and down from 12 IV lines to one.  He has been taken out of the ICU and allowed to drink and may have his follow up surgery for repairing the leak between Kidney and Bladder on Tuesday