New Music - Out Today
Recent Noteworthy Books
Saturate by Jeff Vanderstelt -- I've been able to spend some time with Jeff the last few years at conferences and Soma School. Remarkable guy with a remarkable (and simple) vision for the church being the church. And the vision, as I have experienced it first hand, is being realized. A book I wish I could gift to every one of my pastor friends.
Blind Spots by Collin Hansen -- "It's easier to associate only with our own. But anyone in the world can have that kind of community....True community results only from a miracle." Hansen explains and why the Church is are divided into three groups and how all three are important and should unite us.
The Reformation Study Bible (ESV) ed. R.C. Sproul -- Gorgeous and very useful. I use the ESV Study Bible every week, almost daily, and the RSB will now be used weekly as well.
Mea Culpa by Kyle McClellan -- I served in a volunteer capacity with Kyle as he pastored a church in Lexington, Kentucky over a decade ago. This is a book about his service as a young pastor who made some mistakes.
Bonhoeffer's Seminary Vision by Paul House -- As a guy who juuust missed having Paul House as a seminary professor (he left SBTS just as I arrived), I always look for chances to learn from him. Here's another opportunity specifically concerning theological education.
17 Bucket List Fried Chicken Restaurants -- Steve is getting HUUUNGRY!
5 Solutions for Churches that are Stalled -- "It's one thing to spout off statistics about stagnant churches, but it's a whole different sack of potatoes to acknowledge that your church has stalled. So I won't tell anyone that you're reading this. Our little secret. Here are five things you do when your church stalls."
- Seth Avett & Jessica Lea Mayfield Sing Elliott Smith
- Twin Shadow - Eclipse
- Inventions - Maze of Woods - Two guys, one from Explosions in the Sky & the other from Eluvium.
- Delta Spirit - Into the Wide $5
- Brandi Carlile - Give Up The Ghost $5
- Sufjan Stevens - Illinoise $5
- Hiss Golden Messenger - Lateness of Dancers $5
- Radiohead - The Bends $5 - It's the 20th anniversary of this album and you should celebrate!
- Brandi Carlile - The Firewatcher's Daughter - A must-buy for my family as she is singing in our house regularly. Every CD is great.
- Purity Ring - Another Eternity - Man, this album is fun!
- Carly Rae Jepsen - "I Really Like You" - Another catchy pop song to satisfy your hook worthy fish lips. Here's her video for it, starring Tom Hanks and a Bieber sighting.
Brief update after Elijah's first infusion of Remicade.
Infusion - Elijah's first infusion went great. Stayed at Ronald McDonald House (RMH) Monday night and infusion was first thing Tuesday at Lurie Children's in Chicago. Given Tylenol, Benadryl, and Remicade. Benadryl made him a grump for a bit, but the Remicade had no visible effects. Seemed to take it great. Very proud of our boy.
We took a photo next to a Lurie pillar (below) so we can track his growth with each visit, if we can remember to take the picture. :) We are believing that God and doctors and meds will get our kid healthy and growing. Praying toward that end.
Ronald McDonald House - E was a little bummed that we stayed Monday night and not Tuesday night because on Tuesday there were free tickets to Northwestern vs Michigan basketball game. More bummed to know it went to double OT!
Next Appointment - We set up next three appointments. Next one is Tuesday March 17. We got the big room at RMH the night before so we can have all six of us there and that will put us in the city for St. Patrick's Day. Big celebration is Saturday and we'll miss that, but hoping the river will still be bright green for the kids to enjoy!
Test Results & Other Health Issues - A bone scan and blood tests have shown Elijah's bones are weak and vitamin D is way too low. We knew this was possible and the doctor already had him on supplements just in case, but now we know these are real issues. He is on serious doses of vitamin D and calcium.
City & Stuff - We are trying to make these appointments fun enough to keep E encouraged. So we saw some sights Monday evening, especially noticing some architecture since E's working on a project about being an architect. He took a lot of pictures. We perused shops on the Magnificent Mile.
After the infusion and before leaving for home on Tuesday, E and I dropped Molly at the parking garage and walked in the rain for a couple of blocks to get to Do-Rite Donuts. Those are the best donuts I've ever had. And as someone who has never been a huge donut fan and NEVER go out of my way to get one, this place will get our regular business, you know, for the sake of Elijah. :) If you are in Chicago, I highly recommend finding a Do-Rite old fashioned donut.
- The Stories We Tell by Mike Cosper ($1.99)
- The Daring Mission of William Tyndale by Steven Lawson ($3.99)
- Imagination Redeemed by Gene Veith ($2.99)
- The God Who Is There by D.A. Carson ($3.99)
- Crazy Busy by Kevin Deyoung ($0.99)
- The God Who Justifies by James White ($2.99)
The key attraction of the suburbs for artists is comparatively cheap and spacious accommodation; the same imperative that drove the first wave of artists who settled in the inner city.
- Experiencing The Trinity by Joe Thorn
Fear of missing out is a problem as old as humanity and has practically become an epidemic in our culture. Some suggest it has to do with social media. Others suggest it’s our fast-paced, technology-heavy lifestyles.
Others still say it’s a character flaw in the “next generation.”
No matter what you say the cause of FOMO is, there is one thing no one can deny and that is FOMO is impacting our lives in a couple of really important ways — namely our productivity.
...to the 21st Century music industry, he is the Antichrist. Love, lust, and sex sell because they are believed to be substitutes, to solve problems, to save you from a boring hell of a life. They are sold as a drug, marketed as a painkiller, a treatment for the culture in which you feel slightly ill most days. Hell, they’ll even give it away for free if they can keep you hooked on it!
- Father John Misty - I Love You, Honeybear - A great album from an artist who is good at saying something when everyone else is saying nothing much at all.
- Screaming Females -Rose Mountain - This album is basically on repeat for me. It's everything I wish I could hear from Sleater-Kinney. And it's just rocking my face off with it's blistering-yet-mannered rock onslaught.
- Sojourn - New Again - New worship album from a church I love in Louisville, Kentucky. Of their last few albums, this might be my favorite.
Happy Birthday, Danny! So proud of you making it a dozen years when THIS is your idea of a good time.
I say man must fall upon this Gospel and be broken to pieces and in deep consciousness lie prostrate, like a man that is powerless, unable to move hand or foot. He must only lie motionless and cry: Almighty God, merciful Father, now help me! I cannot help myself! Christ, my lord, do help now, for with only my own effort all is lost!
Complete Sermons of Martin Luther, Vol 2.1, page 396-397.
“Don’t carry one miserable sin for one miserable second.” David Murray, The Happy Christian, p 56
I've been given the opportunity to give away a copy of David Murray's new book, The Happy Christian: Ten Ways to be a Joyful Believer in a Gloomy World. David is professor of Old Testament and Practical Theology at Puritan Reformed Theological Seminary and pastor of the Free Reformed Church in Grand Rapids. I've reviewed his excellent book, Jesus on Every Page. A book that may not be on your radar but should be is Murray's Christians Get Depressed Too. I appreciate Dr. Murray giving us the flip side book to the topic of depression, The Happy Christian. An important topic and a helpful resource for the many Christians around you who need encouragement.
GIVEAWAY --> I'll keep this simple. To enter to win...
- Tweet and/or share on Facebook --> Tell folks about this giveaway so I can get the word out on this great book and use this link, please: http://bit.ly/gethappybook
- Comment below (be sure to input your real name and email so I can notify a winner) with your guess as to how many brands of pencils I have on my desk. I'll send out of secondary gift to the closest guess and I'll post a picture to show the correct answer visually. I'm a pencil geek so it isn't only a few. I'll use random.org to choose a winner from the comments below on Monday.
BONUS --> If you order The Happy Christian before February 24, you'll receive over $100 of free books and videos. More information on the resources at happychristian.net. Giveaway includes ebooks, study guide, and films. You don't have to buy it anywhere special to get these free items. Just send your online or bookstore invoice to: TheHappyChristianBook@gmail.com.
“Happy is a cheap word nowadays, hardly strong enough to describe the realistic, joyful, triumphant Christian life into which David Murray labors to lead us. His book overflows with earthy, deep-rooted biblical wisdom that many miss but all of us need.”
-J. I. Packer, Professor of Theology, Regent College
Here’s a brief overview of the events of Tuesday and Wednesday of this week, which have been important days for Elijah, his diagnosis of Crohn’s Disease, and the hope for remission through a plan for treatment. Check out previous posts for some context if you need it.
Tuesday Appointment - First to Shriner’s Hospital for E’s rheumatologist appointment. Molly and I took Elijah and Daniel (12). His doctor is wicked smart, not only concerning the arthritis he suffers as a residual effect of Crohn’s, but also because she gave timely advice on steps forward as parents of a child with a chronic disease. Parent’s in our position need doctors who, according to Dr. Onel, are willing to answer every question we have and never treat us as if there are dumb questions. We need doctors who are approachable, available, and who don’t make us feel like we shouldn’t bother them. Words like these made us realize, maybe more than at any point thus far, how serious this is for Elijah.
Ronald McDonald House - We left his appointment and headed to RMH in Chicago, just a few blocks from his next appointment at Lurie Children’s Hospital. Another wonderful experience. RMH Chicago is a lot bigger than the Loyola RMH, and Loyola’s was outstanding! It was fifteen floors of rooms and included meals from volunteer groups, retired NFL players came by signing autographs and posing for pictures, Cubs organization brought volunteers for a meal along with Clark the Cub to meet kids, a game room provided by the Bulls with memorabilia (including Derrick Rose shoes, table made from piece of the floor from 90’s championship teams, etc), and so much more. I’ve said it before but let me emphasize, RMH is a wonderful organization. Drop your change in the donation boxes at McDonald’s and help kids as their families deal with their serious health issues.
Wednesday - Up and out early for Elijah’s pill camera appointment in the brutal cold. He swallowed the large pill easily and watched it for a few minutes on a computer screen as it sat in his stomach. It could be seen because he wore a large sensor device wrapped around his torso and a shoulder strap with a battery pack. It recorded for 8 hours (15,000-18,000 photos) and we removed he sensor device at 4:45pm and turned it in at the hospital before returning home. He passed the camera last night. We should know the results in around a week.
Dr. Jeffrey Brown Appointment - This Wednesday afternoon appointment was the most important of our trip, and we are sure it’s the turning point of E’s health story over the last few months and into the years ahead. I can only give a brief description though we received a ton of information and help and direction from Dr. Brown.
- Diagnosis - Elijah has Crohn’s, though it’s a little atypical. Some Crohn’s patients have certain tell-tail signs that make it a slam dunk, know-immediately diagnosis. Some just don’t have this. Even those who have biopsies in areas of severe inflammation can come up without a clear Crohn’s result. E’s case is like that. It’s the many pieces of his health puzzle, according to Dr. Brown, that prove it's Crohn’s. As we have been learning recently, all the details are connected (eye problem, hip arthritis, gut inflammation, severe growth delay, etc).
- Possible Treatment - There are a handful of potential approaches to treatment. All of them attempt to bring an unhealthy kid to health (remission) and then work to maintain that health for the rest of his life. That means treatment essentially never ends. I’m not going to detail treatment options, but discussing them was the bulk of our very long appointment.
- Age & Growth - Our decision on Elijah’s method of treatment takes his age very seriously. Because he’s 14 we don’t have a year or two to see what works, unless it just ends up going that way beyond our control. There’s a greater urgency because of his size and age. He has age 10 bones. Something needs changing while his body is producing growth hormone off the charts, as it is right now.
- Treatment Decision - So starting in the next week or two Elijah is beginning treatment with Remicade. Treatment can only be done at Lurie, much like you would receive chemo (intravenously) except that he will get treatments every 8 weeks indefinitely. It starts faster than that: 1st treatment, 2nd two weeks after that, 3rd 4 weeks after that, 4th and following every 8 weeks.
This is a heavy weight on our family and we feel the level of commitment this is going to take. But more than anything we are eager and excited to get started. Dr. Brown showed us a growth chart of another patient he saw yesterday (without the personal info, of course) and showed the massive height and weight growth after treatment with Remicade. Dr. Brown walked into the examination room, saw how happy and health the kid was, and told him, “I’m sorry, I have to go see a sick kid (Elijah) in the next room. You are doing great.” We could see on the doctor’s face as he told us this story how much hope he had for Elijah’s treatment. We started to borrow his enthusiasm. The other doctor in the room (Dr. Chantal Lucia-Casadonte) looked at E and said something like, “You won’t even believe how good you are going to feel.”
Now, there are other things that could happen along the way. He may not respond as hoped to the Remicade, or at some point grow an immunity to it, etc. But this is the best, the most often successful, and the fastest way to get him back to health. It’s important we start him now.
Days/Weeks/Months Ahead - We are completing a few more tests for E in the next week and working out stuff with insurance. He will start Remicade treatment as soon as we can get it scheduled, so hopefully in the next couple of weeks. We will be back at Lurie 4 times in the next 14 weeks for infusion and our next appointment with Dr. Brown will occur on the same day as the 4th infusion.
Thanks as always to our amazing church members, friends local and far away, who have been following on the blog, Twitter, Facebook, and Instagram at all we’ve been going through. We appreciate your prayers, thoughts, “Likes,” and encouragement along the way. It’s really a joy during the most difficult of moments to find so many friends who care about E and the rest of us.
Last Couple of Weeks - A lot has happened the since my last update, though I have put other updates on social media along the way. Elijah’s upper and lower GI show Crohn’s Disease. Crohn’s and colitis make up what is called Inflammatory Bowel Disease (IBD). It’s NOT Irritable Bowel Syndrome, which is common mistake. Radically different. This is a chronic, lifelong disease that causes ulcers in the intestines. And his diagnosis is not a “for sure” thing yet, but the doctor is confident that it’s Crohn’s. A pill camera is going to, hopefully, give us an official diagnosis. More on that below.
Crohn’s is likely to have caused his eye trouble last year, hip arthritis now, and his plateaued growth the last few years. Often when diagnosed properly and treated correctly it can go into remission and kids will begin to grow, even go through major growth spurts. E is hoping for that!
Crohn’s is serious and when intestines and other areas of the GI tract are affected over a longer term, it can require surgery to remove scarred areas.
After his scopes E was put on antibiotics (4 pills a day for a month) and he was referred to the IBD Center at Lurie Children’s Hospital in Chicago. A week of antibiotics left him a mess. Growing abdominal pain, difficulty eating much, and even vomiting. It took a few days to figure out the meds were what was causing it. A call to the doc and he got off the meds and now feels MUCH better.
Elijah As Of Today - After stopping meds and having his hip gradually improve, Elijah is feeling just about as good as he did before Christmas/New Years when the hip pain started. He still has a tiny limp and different daily aches, but doing pretty well considering everything. We haven’t seen him laugh and joke and sing this much (yes, he sings LOUDLY around the house at times…which will shock some folks) for several weeks. We are very thankful.
Camera Pill Test - Saturday and Sunday Elijah did an at-home test to make sure he could swallow and pass the pill camera. They gave him a test pill which is the size of a large grape, as they put it. He swallowed and passed it fine so the test is on. I don’t know the company that make the pill, but it’s something like this photo.
Test & Appointments This Week - We leave early Tuesday morning (tomorrow) for Shriner’s Hospital to see his rheumatologist. Then we stay in Chicago at the Ronald McDonald House near Lurie (Danny and I stayed at the RMH at Loyola Hospital near Shriner’s last time) on Tuesday night. Wednesday, first thing in the morning, E takes the pill camera, wears a recording device for 8 hours, and then turns it in so they can view it. We don’t know if we will have results from that immediately on Wednesday or not. The camera passes naturally and doesn’t need to be recovered (whew!). He has his first appointment with his new gastroenterologist, Dr. Brown. <reader can insert joke here>
Sarah (18) and Jack (16) will be home and at school and all that the next couple of days while Daniel (12 this month) will be with me and Molly and Elijah. Thanks for your prayers for our boy and for us. We all appreciate it so much. It’s hard to describe how difficult the last few weeks have been for us. Honestly, we really need a break. But we keep on as the Lord strengthens us.
This Take Away Show (live in public in Paris) of "I Went To The Store One Day" is amazing. It's by Father John Misty and is off of his album dropping tomorrow, I Love You, Honeybear. This is a gorgeous story-song about meeting his wife in a store parking lot.
Elijah's hip has been significantly better. Not completely better, but much better than a few weeks ago. He's had other issues, including problems that come and go with his knees, but nothing earth shattering. He's even taken a few swings at the batting cages and he felt better than he expected. Could be a result of taking Celebrex daily. But still doesn't walk around like a healthy kid.
E has upper and lower GI tomorrow so no food for him today and we are gone much of the day tomorrow for the test (leave early am, 10am test, at home in the afternoon). I have no idea how much we might learn immediately after the test, or if we won't learn much until next GI doc appointment. Prayers appreciated. This test is a pretty big deal for our little guy. Praying for answers.
- God's Glory in Salvation through Judgment by Jim Hamilton $5.99 ($29 in paper)
- God is Love by Gerald Bray $5.99 ($28 in paper)
- Salvation Accomplished by the Son by Robert Peterson $4.99 ($29 in paper)
- The Deep Things of God by Fred Sanders $2.99 ($14 in paper)
- How God Became King by N.T. Wright $2.99 ($17 in paper)
At Soma School a few years back I got to know Chris Thomas. I resonated with Chris' personal story, his family's situation, his dedication to ministry, and his willingness to sacrifice to be a missionary where he lived. Soma and TGC have put out a video and article called "Dope Church." It's well worth your time. Here's a blurb. Go to TGC to read the rest.
Cherie sits on a bed and speaks life into Bill and his girlfriend, Katie, while they eat turkey and stuffing and cranberry sauce. A motel room is a really weird place for a Thanksgiving dinner. It’s an even stranger setting for a memorial service.
We reminisce and thank God for Tom’s life, read the 23rd Psalm together, and sing “Amazing Grace.” That night, a room where people shoot dope and women are exploited became a fitting place for a holy God to do some healing.
Yesterday we took Elijah back to the Shriners Hospital for Children in Chicago to meet with their rheumatologist at the request of the two main pediatricians there who have been working with Elijah and who have thus far not figured out why he has fluid in his hip.
It was rather revealing, though there is no clear diagnosis yet. What we learned we feel finally gives us some solid direction and seems to finally make some sense out of his current symptoms as well as previous problems.
Before Rheumatologist - Molly was doing some reading on the Mayo Clinic website on juvenile arthritis and it revealed that when kids have arthritic problems they can have complications that include eye problems and growth problems. We had discussed with his hospital doctors that a year ago Elijah had a pretty bad but treatable eye problem that happened for no apparent reason and we've been concerned about his growth for years. Some of you know he's been going to various specialists the last few months to figure out why he hasn't been growing much the last few years. This made us more eager to see the rheumatologist.
Rheumatologist Appointment - A younger doctor came in to get the whole story and to give him a preliminary test of his joints and mobility and all that. It took some time. Then she went to discuss with the main rheumatologist. That took some time. Both doctors then entered and here's what we got.
Everything is Linked - While she didn't want to jump to a diagnosis without more tests, she fully believes the growth issue, eye issue, hip, and other ongoing unexplained aches and pains are all related. What's most important is finding out if this is from a possible intestinal problem or juvenile arthritis problem.
Arthritis - She called his hip issue "arthritis." I said, "So it is arthritis?" She said in the broadest definition it certainly is, though it might not be because of a more comprehensive and serious arthritis problem. Any joint inflammation like this is arthritis and a lot of people can have an isolated bout with something like it, often is caused by other health problems. The issue now is finding out the origin of the hip problem to see if it's directly or indirectly an arthritis problem.
Next Tests - We are thankful that the next tests she wants has been on the schedule for a few weeks. Because of his very slow growth he's seen multiple doctors, and most recently a gastroenterologist. He has already scheduled an upper and a lower GI scope to see if there are any abnormalities or signs of intestinal diseases or problems that would cause slower growth. Some blood tests and a stool sample seem to show inflammation, and that could either be coincidental, from the hip inflammation, or something GI related. So the rheumatologist would have requested these tests if not already on the schedule.
IF the GI scopes are positive (show a problem) the rheumatologist is confident the GI issue is the culprit and responsible for the other problems. IF the GI scopes are negative she believes the arthritis issue may be the central problem and that will require more tests as to exactly what the issue is. She explained an example of a kid with an arthritis problem that when finally diagnosed and treated resulted in a massive upswing in his growth. We would love to see something like that!
For Now - The rheumatologist has prescribed a powerful anti-inflammatory. No PE until we figure something out. He couldn't do it anyway. He isn't using a walker anymore and his limp is nearly gone. His range of motion is almost back to normal, but I don't think he could jump or run. Certainly no quick starts or stops or side-to-side motions that put much pressure on the hip.
Schedule - Elijah's GI scopes are scheduled for the first week of February and return visit to the rheumatologist follows on the 17th of February. We should know some immediate results after the GI scopes, but full info won't come until we meet with his GI doctor and then the rheumatologist.
Sidenote - With all doctors in the room yesterday, Elijah unleashed a massive nosebleed. It was an awesomely bloody mess.
If there's something I'm missing or a previous issue I haven't updated, please let me know. I'm trying to be as complete as I can. Thanks again for kind words and ongoing prayers for Elijah.
Getting Home - We got home midday Monday and immediately discovered we were driving on an almost completely flat tire. A large screw was in our rear left tire and I had to head right back out and add air then make an appointment to fix the tire while Molly napped yesterday. A flat tire after a long drive leads to scary what-could-have-happened thoughts! God in His mercy brought us home safely. And the trip went very quickly, probably 75 minutes. When Danny and I came home on Thursday night to resupply, it took four hours after never going faster than 35mph in blizzard-like conditions.
Diagnosis - There is still no official diagnosis other than fluid in his hip. The new MRI's didn't reveal anything new that would help a diagnosis. Nothing in the bone or tissue that tell a story. And nothing in the final analysis of the culture from his hip fluid. The growth in his hip fluid culture ended up being described as a contamination, as I explained Sunday.
What's Next - We take E back to Shriner's on Thursday (yes, in two days) to see his pediatrician there. We return again next Tuesday to see a rheumatologist. He hasn't seen a rheumatologist yet, but without a clear diagnosis they need to keep trying to figure this out.
Elijah is using a walker and will hopefully return to school on Wednesday. He can get around without the walker, very slowly, but the walker gives him comfort because he's nervous about tweaking it as it's still a sharp pain. He also likes the walker because it will help kids at school give him space so they don't bump him in the hallway.
Thanks - Thanks again for all your thoughts, prayers, food, and everything else that has been done to help. We are so blessed.
Good news this morning.
Elijah, barring things getting worse in the next 24 hours, is going home tomorrow. It's still a mystery what exactly is wrong. The growth in the culture from his hip is strange. It should only happen in someone with artificial medical things in his body. So they think it must be contamination. But that doesn't change the problem he's having in the first place. New MRIs and other tests show nothing concerning infection, bone issues, etc.
The doctor this morning wants him to see a rheumatologist. It won't happen until after we've left and are done here, but it's probably what's next. We'll see another pediatrician tomorrow and see what he thinks, but that's most likely. After the two pediatricians see him tomorrow and if he isn't feeling worse, we'll all go home.
If all goes as planned, E will miss at least 2-3 days of school. Danny will go back Tuesday.
I checked this morning on staying one more night at the Ronald McDonald House and they think it might be possible. I have to check back in a bit to be sure. Sarah and Jack made it home safely last night and was at Doxa this morning. They had a blast on their trip! They will go to school tomorrow and we just might make it home before school is out.
We have so many praying, some who have provided help to Sarah and Jack, and many who have offered truckloads of help financial and otherwise to us. You have all been so kind to us. We are thankful to God for you all.
I'm writing this on a public, hospital computer, so forgive any issues with the post. The system isn't letting me update the previous post so it's easier just to add a new one.
Elijah has now been given at least one more night here, and maybe a few more. Still up in the air.
E is leaving with Molly by ambulance (sans sirens) to Lurie Children's Hospital today for another set of MRIs. More blood tests are being done as we speak. The fluid culture from his hip is in process and something is growing in it. That means there's something that's in the fluid and the tests should reveal more about the nature of the fluid and how to treat it. He's still on antibiotics, and hopefully they'll find out it's the right sort that treats whatever he has. If not, they'll change it once they know more.
There's a decent possibility at this point that what they didn't do during the first surgery will be done in the next day or two, which is opening his hip and irrigating/cleaning it out. The doctor this morning thinks that will be helpful, though the new MRIs and cultures and all that will help with that decision. We really hope that isn't necessary, but we'll see. If it happens it will leave him and us here longer.
Pray for the doctors to figure this thing out. For Molly to rest well and that her stay won't aggravate symptoms for her health issues with Chiari that often crop up when sleep is poor and stress is high.
Pray for my church, Doxa, as I'm not going to be there tomorrow. My buddy, Joey, who has helped in a pinch before has agreed to preach last minute. I just LOVE good guys like him. What a blessing.
Danny and I are staying at the Ronald McDonald House near Loyola Hospital, which is an amazing resource. It's 20 minutes away. We may only get one more night because others are coming in who have planned this long in advance. Please pray they'll still have a room for us if we need it. I don't want to go home with Molly still here as it's really helpful for Elijah and for Molly to have us here, for E to be able to play with Danny, etc. We don't have the money to stay somewhere else. But everything has been provided as needed so far, so we trust God with whatever comes next.
UPDATE Friday Morning (1/9) -
All future updates will start at the top with the oldest updates at the bottom. Right now I'm home with Daniel and Molly is with Elijah at Shriner's Hospital in Chicago. Daniel and I will be likely leaving at some point today to return to the hospital. Looking into a place to stay for the night.
Elijah is eating great and walking. He's on liquid antibiotics while in the hospital and has taken his second dose as of 6am this morning.
Molly just called and said Elijah won't be coming home today. Tough news, but glad it's because they are trying hard to figure out what's wrong. About a dozen doctors have been in to see him and they are scouring his medical issues and medical history. He's had a few other medical issues in the past, seemingly no major deal at the time, that may mean something according to the doctors. But we don't know yet. So glad to be at a hospital that's known for orthopaedics.
I've been asked by some why this isn't simply considered toxic (or transient) synovitis. Last I heard, it's possible. But duration of his problem, extent of his pain, his age, and a lack of other tell-tale signs keep the doctors guessing and concerned it's something else. I know that some form of arthritis is being considered, but again, don't know yet.
As I understand it there is more testing going on with the fluid aspirated from his hip as well as a bunch of smart people trying to make sense out of all this. At this point I'd say we are hopeful this is something simple that will go away with antibiotics or by some other means. So far nothing serious found other than fluid. We are also realistic that the doctors aren't satisfied with a diagnosis and we are prepared that this may go on a while before it's resolved. More when I have it.
SIDE NOTE: The nurses are just in love with Elijah. Apparently he is very cute with adorable eyes. So he has that going for him! :)
Original Update Thursday Night (1/8)- Thanks for all who saw updates on Twitter and Facebook about Elijah today and who have shared thoughts and prayers. Here's a late night update on how we got to this point.
Elijah has had hip pain for about 11 days. At different points he could barely walk and has had two sets of xrays, MRI, two sets of blood tests and then our first visit to a specialist today because he's not getting better. The only diagnosis so far is fluid in his hip joint area. After a few doctors consulted together today they decided Elijah needed a hip aspiration to remove and test the fluid for infection, bacteria, etc. There was an expectation that the hip would also need to be opened up and "cleaned out" as well as a possible bone biopsy. This came as a complete surprise to us this morning. All of our conversations revolved around multiple days at the hospital, a possible picc line for antibiotics, a home nurse, and therapy/recovery.
In surgery a few hours later the fluid was partially drained. Tests showed no infection or bacteria, at least upon first check. Good news! So good (and unexpected) that the surgeon decided not to clean out the joint or do a biopsy. Huge relief. The problem is he still finds the fluid buildup as a mystery. So does the battery of docs working on this.
Elijah is starting antibiotics tonight and physical therapy in the morning. We think he'll be able to come home tomorrow (Friday) but nothing is certain. Molly is staying with him tonight and I brought Danny (11) home with me. It was the most dangerous drive I've taken in my life after several inches of snow today, 35+mph wind, and severe drifts. We saw two cars ditch themselves in the last 10 miles. Unreal & terrifying.
Danny and I will have to drive back tomorrow and hopefully bring E and Molly home. We are still very concerned because they can't find a cause to this thing. Maybe it will eventually take care of itself. Maybe the docs will figure something out. I'm too tired to guess what might happen next. Thanks for your prayers. Appreciate all of you.
- Chvrches: The Bones Of What You Believe - $5
- Sturgill Simpson: Metamodern Sounds in Country Music - $5
- The Gray Havens: Fire & Stone - Woohoo! Go get it!
I just downloaded Adam Faucett's 2014 album Blind Water Finds Blind Water. This live version of "Edgar Cayce" is just excellent and getting repeat viewings today. Oh dear, just turn it up.