April update

#TeamLanceMiller update 4/2/2016

Lance called from home today and sang "Happy Birthday to Austin" (my 23 year old son) and told me he had ice cream to eat, at home, not in the hospital, and that he had stayed up but Brett and Emily (my other brother and his wife) were already in bed. He told me there were four baby cows that were twins in the stable on the same floor with his bedroom, and that they were being bottle fed. Then he asked to talk to my husband Greg, he told Greg, "There are a lot of elk out my window here." Then added a huge laugh and, "Happy April Fool's Yesterday."

4/4/2016

Talking to Lance today, he was excited about the baseball teams and their opening days. Very Happy the Pirates won, and trying to insist that everyone in my family had to have a favorite team.  I guess I failed. I did take my boys to see an Angels/Dodgers game several years ago, but it wasn't enough to turn his nephews into die hard sports fans.  Something about living 300 miles from any team is a bit non-conducive to rabid fandom.  He is also in love with the baby cows at the farm this spring and especially that there are so many twins, but our call was cut short when my brother's daughter delivered him some ice cream.


He was also delighted to talk to my granddaughter now that she is almost 2 and will use a phone a bit, and he was telling me which pictures he has on his wall. He has a lot of cards that you have sent him. Thanks for that, and if you think about sending another postcard his way, Lance has a cell phone (540)-359-1413 and you can send cards and pictures and letters to him or to Mom at the same address

  Lance Miller /PO box 865/ Middleburg, VA 20118 

Lance Miller update March 1, 2016

Once again I come to bring an update of Lance Miller, and have to start with saying that Lance is back in the hospital again.  I hate saying that he is basically back dealing with the same thing that put him in ICU on September 1st, 2015  -   6 months go today but that is pretty much exactly where he is.

I talked to Lance 2 weeks ago on Valentine's Day and things seemed to be gong really well. He was happily ensconced in a Motel with our brother, Brett and Brett's wife. They had gone to an evening Church service, and to the beach and to a Horse race and shopping for a jacket because Lance was too cold, not on the beach, but in Church.

I also talked to my Sister-in-law and she said Lance was getting a lot stronger, but still on a feeding tube and a catheter. Still sick but making progress.

Only five days later Lance was back in the hospital for a barium swallow test to see why he couldn't eat but could drink things like Ensure or juice.  The barium test went OK, but once he was home he was violently ill, all night with the heaves but nothing in his stomach. A new Dr. said he might have a narrowing where his stomach entered the bowels and he does, and his pancreas was inflamed so he needed antibiotics, and still the urine leak, "Repaired" in September, is unhealed, as if it had just been done inside, only the skin healing. So the urine leak can be causing the pancreas inflation, and the stomach narrowing needs addressed but at the heart of the matter, most of ll he either needs the kidney bypassed of the leak repaired and that means more surgery. So tonight he heads to UVA hospital and the knowledge that every surgery impacts his blood pressure and breathing enough to put him in ICU.  He still is having issues getting approved for medicare and his hospital bills are outrageous by now of course.

If that isn't enough, Brett's wife has been very sick too, and 

mom's money is running out so they may need to bring her home to their house soon, but she is really difficult to care for too.  Any positive thought, prayers or funny cards you care to send their way would be greatly appreciated I'm sure.

All the other details in life pale beside the fact that they are actually still together, still sounding cheerful and hopeful and not giving up.

Lance has a cell phone (540)-359-1413 and you can send cards and pictures and letters to him or to Mom at the same address

  Lance Miller /PO box 865/ Middleburg, VA 20118

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?