A Prayer Request for Lily

2015-08-04 14.43.00

Friends,

 

Lana and I would like to ask you to join us in prayer for a specific need we’ve encountered with Lily Bird.

 

Since Lily was very little, we wondered whether some of her inability to speak and interact had to do with a problem hearing. We had everything tested several years ago and confirmed that she had only slight hearing loss – which everyone agreed would not be enough to impact speech development. We moved on to other areas of focus related to her health, and haven’t been back to address her hearing since 2009. When a child has Autism-type behavior, it often makes you wonder what she can really hear and what she just fails to acknowledge.

 

A couple of months ago, Lana pointed out that Lily seemed to startle when Lana walked into a room with her – even though she had been talking to her before entering. That led us to schedule a sedated ABR – a hearing test in which doctors put her under anesthesia and test her brain’s receptivity to sound prompts. That took place about a month ago, and kick-started our latest adventure.

 

After the exam, the doctors led us into a conference room – which we’ve learned by now usually means we’re going to get some heavy news. Sure enough, the test revealed that Lily had lost a significant amount her hearing. She has mild-to-moderately-severe hearing loss in her right ear, and profound hearing loss in her left ear – meaning that she hears virtually nothing out of that one. They recommended that she receive hearing aids as soon as possible, and then follow up with another hearing test in six months to see whether the condition is getting worse or has stabilized (and in case you’re wondering, they have no idea what caused it). After that test in six months, she’ll meet with a doctor who specializes in cochlear implants to see whether she is a candidate.

We anticipated hearing about some measure of hearing loss because of the observed behavior, but the magnitude of her loss was a big blow. We haven’t shared it with many people up to now because we needed some time to collect our own thoughts and pray about what comes next.

 

Once you have all of the information about something like this, it’s easy to look backward and see evidence that she could not hear: Many of you know how much she likes to watch the Backyardigans on her IPad. For some time, she has been holding the IPad up to her right ear rather than watching it so she can listen to the music. Looking back, she’s only held things to that ear for a while now. As you can imagine, such revelations make us feel awful that we didn’t investigate sooner, but we’ve remembered two things: we did ask our doctors about it and ran tests on these things, and wouldn’t have imagined that the hearing loss would grow worse for no apparent reason. Second, all of Lily’s challenges tend to combine with such an overwhelming set of needs that it’s easier than you would imagine to miss the clues for one specific problem.

 

On the other hand, we see this as an opportunity for tremendous breakthroughs in her development. Who knows how much of her speech development – or ability to learn – has been hindered by being unable to hear?

 

Lily will receive hearing aids this afternoon (October 8). The doctors have made it clear that they will have a profound impact on her life right away. They have also shared, however, that the hearing aids can only offer amplification; they cannot offer clarity. That means, depending on the damage, it’s possible that she only hears a louder version of muffled sounds.

 

So as she receives the devices today, would you join us in praying for two things?

 

  1. That she would have CLARITY as she begins to hear again.
  2. That she would not lose any more of the hearing that she has right now.

 

God has brought Lily through some tremendous challenges in her young life, and we have no doubt that He can bring her through this one. We’re praying that this new obstacle could actually be the key that opens the door to a new world for the Bird. Thank you for joining us in prayer!

 

PS: If you join us for the “Arbor Fun Walk” on October 24, we can celebrate Lily’s “new ears” together as we raise funds for The Arbor School – a wonderful organization serving children with all sorts of disabilities in West Houston. You can register here for “team Lily”: http://www.arborfunwalk.org/event_info.php

 

Hope for Egypt

Ryan and Sphynx

Last Wednesday, we drove by the pyramids and Sphinx, and I was amazed to witness something man-made that has lasted over 6,000 years. And it made me wonder: how often do we really concern ourselves with what will matter generations after we’re gone – and into eternity? Egypt has a president who is trying to bring freedom to people of all faiths – at the cost of tremendous opposition. Egypt has an economy on the continual verge of collapse. And Egypt has a lurking presence of radical Islam that is constantly threatening takeover.

Asmi w Kids

In the midst of all the turmoil, there’s a new school and medical center available to the Zabballene people – some of the poorest of the poor – thanks to the funds raised by the children of Kingsland Baptist last year at VBS. This new work carries the hope of offering something better to future generations of Egyptians – not just economically, but spiritually as well.

David & Pastor Ryan

When God Calls…

2014 is a year of transition for the Rush Household. Today, I announced to my congregation that I sensed God calling me to another church. Bannockburn Baptist Church, the wonderful congregation I’ve had the privilege of pastoring for the past decade, has been as good to me and my family as any pastor could hope for. They have cheered us on, laughed with us, cried with us, celebrated our victories, and encouraged us during our weakest moments. 

I’ve always admired pastors who stayed in one place their entire ministries, and had every intention of being one of those leaders. However, I’ve been reminded that I have a calling from God – not a career. And that means I must follow His lead. 

I’m excited about the future, as the Rush family moves to Katy, TX – just west of Houston – to connect with another wonderful group of people and share Jesus’ message of grace and hope with the world. But I cannot put into words the gratitude I have for ten years of sharing life with such an incredible, loving group of people. I’m also excited for the future of Bannockburn. God has raised up an amazing staff and an entire church of servant leaders who are passionate followers of Jesus Christ. I have the firm conviction that the same Good God who is calling me away is Good and Faithful to bring someone amazing to be the next shepherd of this miracle church. 

Yesterday was a sad one, because I began the month of goodbyes with friends I love. But today is already better…

Because God is faithful. 

and His plans are better than mine. 

and the very best place for any of us to be is in the center of His will.

and in just a little while, because of Jesus, we can be together again anyway for a reunion that lasts eternity. 

 

A Few Thoughts on Fasting

Plate

 

On the last Sunday of 2013, I shared a message on one of the most powerful tools of the Christ-follower: Fasting. I feel God leading me to kick off 2014 with a 21-day fast – something that some others in our congregation have felt led to do as well, and something a number of other local churches in Central Texas are also doing.

You can click here to watch the message when you have a few minutes. In the meantime, here are some of my favorite resources online:

My Very Favorite: Bill Bright’s Guide to Fasting and Prayer. The late founder of Campus Crusade for Christ (now “Cru”) put together the most comprehensive, easy-to-use guide I’ve ever seen – and it is absolutely free to anyone online. Check it out by clicking here. 

One of the best books of all time on fasting, in my opinion, is Fasting for Spiritual Breakthrough, by Dr. Elmer Towns. You can purchase it online, but the study guide is available free – and you can get a sense of the principles he shares. Click here to access the study guide.

I mentioned two interesting recent articles about fasting in secular media that you might want to check out as well: one from Scientific American, and another in the Chicago Tribune

Finally, let me share a few brief pointers for anyone ready to try an extended full fast (liquids only) that I’ve learned in my own experience:

- Day 2 is the hardest. That may be different for different people, but by the evening of day 2, I have a headache and I’m starting to get HUNGRY. By day 3, the headaches linger, but they start to dissipate. 

- By day 4, I’m not starving. That sounds counterintuitive, but if you hang on, you’ll find that you’ll experience an amazing freedom from your appetite that is powerful.

- I’ve had several people warn me through the years to avoid caffein of any amount during your exended fast. I’m not a doctor, but I’ve heard enough warnings to know that it could be really bad for you. Beyond that, you’re not going to need it with your heightened mental acuity by the fourth day. I am wide awake when I’m awake, and I sleep wonderfully when I rest. 

- Finally, I really encourage you to keep a writing pad and pen nearby throughout your fast. I’ve received some of the best ideas and insights of my life during times of fasting. I’ve written entire sermons and songs during times of prayer, retreat, and sometimes just moments throughout my day. 

Get ready for an adventure you’ll never forget. And let me know how it goes!

Lily’s Third Trip to New York City – November 2013

Lily in NYC 11.2013

We had our second face-to-face appointment for Lily with Dr. Najjar today in NYC. It went very well. I have the highlights in bold (for short attention spans like mine) and details following (for those who would have asked me to clarify.)

Dr. Najjar was thrilled with her progress – both from the reports we had from her teachers of cognitive improvement, and observations about improved eye contact and awareness. To put the changes into perspective, the last time we were here, Lily ignored the doctor and peed on the exam table. This time, she got up and gave him a hug.

He is increasing her primary meds now that we have had a positive response for 90 days. This includes her dosage of Namenda, the med he put her on this summer. He also ordered additional IVIG infusions for “at least six more months,” given the progress we have seen.

He is beginning to take her off of the meds from our previous doctor, which we were really hoping for. She’s currently on six different meds, counting the IV infusions. Dr. Najjar did not want to adjust anything previously, because he did not want anything to adversely impact her system as they were making adjustments. None of the meds she has been on are harmful, but we felt that all of them together could be impacting her negatively. He’s still only taking one off completely right now, and then we’ll check back in a month and a half, but it’s progress.

Dr. Najjar gave us a lesson on balancing addressing symptoms with addressing cause. For example, we inquired about her increasing one medication that assists with her attention span, since the dosage has been the same for two years and she has grown significantly in that period. He declined to address it until January – for the same reasons listed above, and then said something interesting: Dr. Najjar reminded us that, while addressing symptoms is okay (which is what this would do), his priority was to address the cause of those symptoms – the neuro-inflammation of the brain, the resulting over-stimulated neuro-receptors, and the low immunoglobulin.

This is so significant because just about every other doctor Lily has seen has focused on the short-term behaviors (in other words, the symptoms she displays), in part because they didn’t know what to do with the long-term solutions, and in part because that makes everyone’s lives easier. Lily’s aggressive behaviors have at times actually increased this school year, in part because she’s more aware of what’s happening around her and, as he reminded us, because her brain is working overtime because of the brain condition. (That doesn’t give her an excuse to be a brat all the time, but he reminded us to expect her to have more irrational behavior than your average kid because of what is going on.) Why is this important? Because what he’s treating won’t help her behavior. It will help the condition that’s causing the behavior. So if making our lives easier in the short term makes it more difficult for the brain to respond to the long-term cure, we can certainly deal with some aggressive behavior every now and then.

• Along the same lines, he reminded us not to measure improvement from one day to the next, because that would fluctuate. We’re to measure improvement from 90 days ago to now, and 90 days in the future. When we look at it that way, her changes have been remarkable by all accounts.

Dr. Najjar reminded us that this is a “long haul” solution. It may take years for her to be completely over the neurological issues she’s dealing with, but given the improvements we have seen, he has even more confidence we’ll get there.

One other note: Remember the hug Dr. Najjar got when he came into the room? Dr. Najjar hugged her back, and said, “I love you, Lily.” Lana said any doctor who does that immediately becomes her favorite, as if he wasn’t already. But that’s worth something!

The Rush family is thankful tonight for God’s provision, for Lily’s progress, and for praying friends like you.

Ryan’s Story

Rush Fam 2012

Ryan has been ministering to families for almost two decades. He served as Senior Pastor of Bannockburn Baptist Church in Austin, Texas for a decade from 2004 to 2014, when God called him to Katy, Texas to serve Kingsland Baptist Church as their Senior Pastor.  Pastor Ryan has led the implementation of a comprehensive, cross-generational effort to connect church and home life.  The “Faith Breakthroughs” process that serves as the centerpiece of this strategy has become a launching point for other churches across the country, and he has become a national voice for the growing “Faith at Home” movement.

 

Prior to returning to Texas – the place of his upbringing, Ryan served as the Family Pastor of Thomas Road Baptist Church in Lynchburg, Virginia.  He has hosted numerous radio and television programs on the subject of family life.  He has authored two books. Home on Time: Life Management by the Book is a look at Psalm 90 that is helping lead families away from the chaos caused by living within the framework of a disorganized life.  Ryan’s second book, Walls: Why Everybody’s Stuck (and Nobody Has to Be), was released by Tyndale House Publishers in 2011, and shares the principles and stories of Faith Breakthroughs that have become an extraordinary part of church life at Bannockburn.

 

Ryan also serves as Adjunct Professor at Liberty University.  He teaches a course entitled, “Theology of the Family” he helped develop for undergraduate students in the School of Religion. Ryan and his wife Lana have three daughters: Ryley, Reagan, and Lily.

 

Ryan is a graduate of the University of Mary Hardin Baylor and  Liberty Baptist Theological Seminary.  He and his wife, Lana, have three daughters: Ryley, Reagan, and Lily.

An Open Letter to Those Who Practice Medicine

Medical Symbol

Note: If you’re just dying to know an update on Lily’s New York saga, you can skip down to the end of this post.

An Open Letter to Any Doctor Who Will Listen.

Dear Medical Establishment,

I first want to thank all of you for the work you do. Where would we be without dedicated doctors, nurses, and all of those who support them? Some of the most amazing, compassionate people I know are doctors and medical professionals. The church where I pastor is blessed with some of the best. That gives me reason to believe that the many I don’t know are likewise great people.

I appreciate the sacrifices all of you make, but events in recent days have caused me to shake my head at the way some of you do things. And the way you do things has become very personal to me. My six-year-old daughter’s life depends on it.

Lily was born with a host of medical problems, but we discovered over time that almost all of them were solvable problems if we could only get in front of the right physician who would listen long enough to improve her health. Lana (her mom) and I have learned through painful experience to listen skeptically and push back – regardless of whether you roll your eyes or shake your heads.

We have never tried to be the kind of know-it-all parents who spout off Google findings to you, but we have found that we can understand a lot more than you think we can. We may not know everything you do, but we know the entire breadth of Lily’s medical history, and we know our daughter – better than any doctor could be expected to know her. And that is why we are asking you – pleading with you – to listen more.

This is where the breakdown seems to happen. We believe your world is full of brilliant doctors who are hindering the progress of their patients because they have tunnel vision when it comes to treatment. You tend to have one – and only one – protocol for solving a certain problem. If our issues happen to fit your profile, we are headed for healing! But if we have any unique detail, well, that’s our problem. I could write a book of examples, but let me briefly offer four:

– Our oldest daughter Ryley was diagnosed with Type 1 Diabetes when she was five years old. At the time, we felt like life was over. Now that she is a vibrant, healthy nineteen-year-old, we have learned that she can live a full life with the condition. In the first year of her diagnosis, we did extensive research to find the best treatment possible.

Ryley 5 Years Old

We became convinced that this would be insulin pump therapy – something that was relatively new technology at the time, but used almost exclusively when blood sugar regulation was deemed critical. For example, pregnant diabetics were almost always placed on a pump. We determined that, if we wanted the best treatment for our daughter, we wanted a pump. But our doctor said he thought it was “overkill,” that we as parents would end up having to manage the pump (as if we weren’t having to manage the shots of a five year old!), and that it wasn’t going to happen. It seems ridiculous now, but we were declined for pump therapy by multiple doctors in multiple states until we found a doctor in Charlotte, North Carolina who was on the cutting edge of pump therapy for children.

Looking back now, this journey really prepared us to ask the hard questions and keep trying until we got the answers we needed – a lesson that has proven to be very significant in our lives. She’s been on an insulin pump ever since, and it has been life-giving to her. Incidentally, most children who are diagnosed with Type 1 Diabetes today are strongly urged to consider insulin pump therapy. Pump therapy for children was just as logical in 1998, but doctors were used to moving in a different direction.

And they weren’t listening.

– Our youngest daughter Lily was born with a large hole in her heart. The Cardiologist who treated her said that she would need surgery as soon as possible to repair the defect in order to survive. However, he shared with us that it would be even more dangerous to do the surgery until she weighed at least eleven pounds.

Lily Newborn

So we found ourselves in a race against the clock, with a child who couldn’t gain weight because her little heart was working so hard to stay alive. And painstaking weeks passed until we sought a second opinion in Houston, with a surgeon our research had shown to be among the best in the world. He immediately scheduled the surgery – sharing with us that they could accommodate for her small size with technology, and openly questioning whether she would have ever lived to attain the eleven pounds we were waiting for. The first cardiologist wasn’t necessarily wrong. In fact, he was a very nice man who we have kept in touch with through the years. He just didn’t have all the information. But couldn’t he have done what we did – a little more research? We asked whether there was any other alternative to waiting, but he had his timeline to maintain.

And he wasn’t listening.

– On another scary occasion, Lily couldn’t hold down any food. She was admitted to the hospital for constant vomiting and concerns over dehydration. Lana and I had a deeper concern, as this seemed to be more than just an average illness, and it appeared that she wasn’t able to keep any food down at all. The attending physician in the hospital explained to us in very condescending terms that “new parents usually misunderstand the volume of substance that is being spit up. It’s probably only a tablespoon of liquid.” Of course, the fact that we weren’t “new parents” and had raised two others was not important to him. He moved on to the next patient with his “collaborative team,” leaving us begging nurses – anyone! – to please probe further. By the grace of God, Lily projectile-vomited that evening in front of one of the residents on the floor, and he was shocked at the magnitude of what had just happened. He started researching, and by the next morning, returned with orders for an intestinal ultrasound to verify his suspicions. Sure enough, Lily had Pyloric Stenosis, which is a closing off of the intestines. The food could only move so far down the line before being forced right back up. All of it – not a tablespoon. One would imagine that someone would have listened before she died from malnutrition or potassium poisoning, but we’re grateful for one man who listened before we got to that point (even if he only listened because he finally saw what we were reporting with his own eyes.) Lily was scheduled for immediate surgery. The first doctor may not have been wrong about spit-up volume and new parents.

But he wasn’t listening.

– In that dramatic first year, we learned that Lily also had Grade 5 Kidney Reflux – the most severe degree of the condition. This can cause all sorts of complications, infections, and eventually kidney failure. We visited a specialist in Houston while we were there for Lily’s heart surgery, by now assuming that the secret was just to go to doctors in the bigger cities. It’s not that simple, though. An older specialist brought in all of the charts and x-rays and then explained to us that “with such a severe condition, there is only one option. As soon as she recovers from open heart surgery, Lily needs to have kidney surgery right back here in Houston.” This was not the news we were hoping for, but we were also ready to do whatever it took – so long as it was necessary. Lana’s concern seemed silly to the doctor, but makes sense to every mom we’ve shared with since. She wanted to know about the scar. Lily was already going to have to go through life with a massive verticle scar on her chest from the heart procedure, and now she was destined for a matching horizontal scar on her abdomen. So when we got back home, I went to work searching the country for less invasive surgical procedures on kidneys. That led us to a specialist in Boston, Masachusettes who was using an innovative robotic process to fulfill the same need as the Houston surgeon. Off we went to Boston to meet with an amazing doctor who also taught at Harvard. Except we didn’t talk about the robotic process. Instead, this doctor said he had read her entire report (what a great idea!), done some more research related to the possibilities, and concluded that we didn’t need to do anything for at least a year. Instead, he proposed that we place her on an antibiotic to prevent infection in the meantime and see whether Lily would grow out of it. And guess what? Nearly a year later, when we went back for the follow up exams, Lily didn’t have Grade 5 Kidney Reflux anymore. She didn’t even have Kidney Reflux anymore. But we would have done an unnecessary third surgery in Lily’s first year had we not located one doctor in Boston who listened to us, and who gathered as much information as he could. The first doctor may not have been wrong about the severity of Kidney Reflux, but he seemed to be marking off boxes on a checklist rather than looking at the details of our daughter’s condition. And when my wife asked about the concerns over surgery, he was too busy with his flow chart.

And he wasn’t listening.

To make a long story short, Lily is now a beautiful, six-year-old fireball who has been navigating for five years what turned out to be the biggest challenge of her life.

Lily s First Birthday

At about eighteen months of age, after getting through all of the physical demands mentioned above, she began to develop normally. We read books with Lily. We sang and played “Itsy Bitsy Spider” with Lily. She called us “Ma-Ma” and “Da-Da.” We treasure the way she should say, “Hi dare!” when she greeted people who walked in the room.

And then she stopped talking. She stopped relating. And she retreated into a world all her own.

Prayerfully, we started a new journey of doctors and fact-finding and tests to discover the problem and accompanying solution. The answer that kept returning was a common one today: Lily must have Autism.

But when we did our homework, we found major discrepancies between Lily’s condition and Autism. Most importantly, Classic Autism is a condition, from birth, that causes children to have an inability to connect in many of the ways Lily had connected. She had been a typical child, and then she regressed.

But no one seemed to be listening.

We asked our Pediatrician how Lily could somehow lose abilities and then be labeled with a disorder characterized by, “the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth.” She responded that, while it might seem that she was losing abilities, she likely was just “moving on to other skills.” Does that make sense to anyone? We responded by “moving on to another doctor.”

One who would listen.

We have since learned that some of the amazing children who have been given the Autism label may clearly have an issue related to the spectrum. They are vibrant people who will adapt in life and make life for everyone around them richer. We do not seek to demean or dehumanize those who really own the diagnosis.

However, we’ve grown convinced that thousands (perhaps millions) of children are given the diagnosis of Autism because it’s a convenient label that explains away symptoms and requires no attempt at recovery by the doctors who treat them. It’s a disease that doesn’t require the doctors to listen. While I seriously doubt it after years of learning more, Lily may very well have some form of Autism. And if she does, we will embrace who she is and what she can become. We will not, however, surrender to a lazy label given by physicians who are in too big of a hurry to look further into her needs.

Since Lily regressed in 2008, we’ve been on a journey that has included over 200 blood tests, 100 doctors, 12 specializations, four states and 10,000 miles of travel, dozens of therapeutic strategies, and at least six special diets in search of something that might help. Lana has read or studied over 150 different books on the various issues that Lily has presented.

As a result of a relentless search, we’ve come across some really great people in the medical field for which we are grateful. Dr. Michael Goldberg was the first doctor who openly questioned her Autism diagnosis and set about seeking treatment. While he didn’t get her to where we hoped, he opened the door to new and innovative questions to ask from a scientific perspective.

And now, we have found Dr. Souhel Najjar, our Neurologist from New York. Dr. Najjar is the Head of the Neurology Department at Staten Island University Hospital, and the Associate Professor of Neurology at New York University Hospital. He’s written extensively on diseases of the brain, and become famous for solving some seemingly incurable cases in the past decade. And Dr. Najjar, through an immense five-day battery of tests last month, has already gathered more useful information about Lily than we had to this point. He shared this with us in a conference call yesterday:

– Tests indicated that Lily has dangerously low levels of IgG and IgM immunoglobulins in her blood – essential elements in our immune system that help us fight off infection. We knew this already, but he was the first one who showed why this could not have been circumstantial evidence, nor the result of a birth defect. Something is causing these levels to drop. He demonstrated how it is causing her body to react with corresponding low levels of white blood cells, “p-cells”, and manifested infections of skin conditions and brain dysfunction. She will travel to NYU Hospital again next week for a week’s worth of IgG ifusions through an IV, and then we will follow up with additional IV IgG’s every two weeks for the next two months – finally giving our little girl the tools she needs to fight infection.

– We will continue with the same medication she has been on to help with symptoms related to her condition, but because he is a brain specialist, he wants to address the issue at the source. Apparently most meds never impact the brain, because of the powerful BBB (Blood Brain Barrier) that is intended to protect our control center from foreign bodies. So he immediately prescribed a drug that is specially designed to cross the BBB.

Dr. Najjar was careful to say that he is not guaranteeing this will be the correct treatment, but said he felt strongly this is what we should try first. He said that he would do everything he can to help her – and if this doesn’t work, he has next steps in mind that would be based on what we observed between now and then. In the meantime, he would be closely watching and listening.

Much of Dr. Najjar’s published journal research is available online, and I had already read through parts of it. When I asked if there was one in particular that we should go over to get a better understanding of what Lily was going through, he said something that I can’t get out of my mind because it is so unlike what we’ve heard all these years:

“You can read them, and there are a lot of interesting papers. But there is no reason to get caught up in any one of them. Because every brain is different. And Lily’s needs will be different from anyone else’s. There is only one Lily.”

And that’s when it dawned on me. Why is this one New York Doctor so adept at finding answers and solving complex medical mysteries when no one else can? Why has he appeared on The Today Show and Katie Couric and Oprah because of what he’s done? Is he a genius? Maybe so. But his VERY BEST attribute is the one that many doctors seem to have forgotten…

Dr. Najjar listens.

He pays attention to every detail.

He ties those observations all together.

And he bases treatment on the patient rather than the protocol.

So if you are in the medical profession, I have one plea for you: you may have all the degrees in the world, and you may have brilliant ideas. But until you learn to listen to your patients, you may be robbing them of exactly what they need.

I’m hardly a perfect listener myself, and in my own work as a pastor, I am trying to apply these same principles. But if Lily begins to recover in the weeks ahead, I will be tempted to pay a visit to a Dermatologist who said Lily just had ordinary skin issues rather than looking for an underlying diagnosis for why they were constant and pervasive. And I will go see an Immunologist who never did IV IgG’s because she decided that, while Lily obviously had low levels, she “seemed to be adapting to those levels okay.” And I will go see a Pediatrician who said Lily was just like lots of other kids who seemed to be progressing normally but never really had the ability to function to begin with. And then I’m going to write to anyone who will listen that their condition, like Lily’s, may not be as hopeless as they thought. They only need to find a doctor who will do the one thing that can change everything.

They need to find a medical professional, as busy as he or she may be,

who will listen.

Sincerely,

Ryan and Lana Rush

Proud Parents of Lily

Update from New York

We’ve been overwhelmed with gratitude for all of the messages from friends (and former strangers!) praying for our little girl this week, as we traveled to New York City to see a specialist and seek some answers – the latest in a six-year journey in search of hope for “The Bird.” It’s been such a wild week that neither Lana nor I have had time to share much, so I thought I would list a summary here for those who want to know, and then a detailed report below that for those who have the interest. Thank you for standing with us in prayer. God is able!

Lily Hospital NYC 1

SUMMARY:

Lily had a great visit with Dr. Najjar and his staff on Tuesday, July 16. After examining her thoroughly and looking over her existing records, he shared that he thought she was dealing with a microscopic swelling of the brain. We knew we would do some blood testing while in the City, but he was sure enough of the diagnosis that he wanted to admit her to the hospital immediately and begin testing. She has been doing that all week, and gets out of the hospital this (Friday) evening after one last sedated exam. So New York has amounted to the hospital and subway trips to and from the hotel. The “Big Girls” flew up Wednesday when we knew about the hospital so they could help out – and so our hotel on the Upper West Side didn’t go to complete waste. We have learned not to get too excited too quickly about what we hear, but there is a sense right now that this medical team has a stronger grasp on what is happening physically in Lily’s brain than anyone we have seen in her six years of life. Dr. Najjar has given us reason to be optimistic as we head home, and of course, hundreds (thousands?) of prayers have been prayed on Lily Bird’s behalf. God is up to something!

Photo

DETAILS:

Visit with Dr. Souhel Najjar in New York, July 16, 2013

After reviewing Lily’s records and giving a thorough physical exam, Dr. Najjar expressed great optimism that what she was experiencing was not Autism. He said, “Doctors tend to lump everything into that diagnosis because of common symptoms, but it doesn’t mean she has Autism. In fact, according to her symptoms and physical indications, I don’t believe she does. Her pathophysiology is different from Autism.”

Dr. Najjar believes that Lily indicates the presence of microscopic inflammation of the brain. This does not show up on a regular MRI, but there is lots of literature on the condition. MRI’s only show gross abnormalities. There are other tests we can do to verify.

This gradual onset of inflammation since early age is causing neuromotor impairment, compromised immune system, and delays.

He saw the iGg numbers as VERY significant (something our Austin Immunologist did not address). He agreed with her that the body may be accommodating for them in some ways, but it doesn’t mean she doesn’t need them to be up. He said the low numbers are not the problem, but symptomatic of a greater problem. He also noted that the iGe’s were elevated, which causes dermatitis. She has had some sort of rash consistently for at least 5 years.

Dr. Najjar also said she has greatly elevated levels of Glutamin, which make the “nerve sells work day and night, increasing blood flow.”

He wants to see the actual report for her neurospect (a brain blood flow scan) from 2011, as he found it very significant that her blood flow varied. It should normally be “Hot” all over or less blood flow all over, depending on activity. But she had significant “hot spots” in certain areas while there was very little blood flow elsewhere. He compared it to trying to take a test with a loud person in the room. It would be very difficult. She has parts of her brain that are “on fire” and her other areas, which may be fully functioning, aren’t operating because of the distraction. The key is to have simultaneous high and low blood flow.

While our California doctor focused on the frontal lobe, he thinks that’s symptomatic of a problem in the thalamus. “If the Thalamus is broken, nothing works right.”

He has seen very similar symptoms before, and has treated the condition. He doesn’t have a name for it. In fact he said, “I’m not worried about discovering things. I’m worried about treating them. I don’t care about giving it a name.”

The results of inflammation on the brain: affected immune system, excema, hyperactivity.

He found it interesting that Lily was on Antibiotics from 5 months to 16 months, as this may have been helping. Certain antibiotics could make the infection better.

He said, interestingly that the inflammation has varying expressions. It is often falsely diagnosed as Autism in children, but as severe depression (or even psychotic behavior) in adults.

What’s Next?

– Dr. Najjar is admitting her to NYU immediately for testing. He wants to verify his suspicion about the inflammation with an additional Neurospect, a 48 hour EEG (Lord Help Us!), and a total blood work up.
– We will have the test results back in about two weeks.
– Following the confirmation, he would like to treat her with Minocycline to reduce the inflammation. This is a drug that is often given to Alzheimer’s patients. Very few drugs will work directly on the brain, because they don’t make it through the protective blood/brain barrier.

Photo 1

Some other notes:

– For the most part, Dr. Najjar agreed with Dr. Goldberg (our California doctor) that it is an immune issue, that it’s not Autism, and that we have to address the infection. He felt as though the meds she’s taking now are “fine, but only addressing symptoms.”
– He wanted to know where the Dermatologist we saw was in practice. He seemed shocked that he did not investigate further with all of the indicators. (rashes, warts, calcium like deposits under the skin) He even asked whether he was affiliated with a university, as if he was going to contact them and complain.
– He was surprised that no IV IgG’s were given. When we explained that the Immunologist had done the “dead vaccine experiment” to see if the immune system was working even with the low levels he was unimpressed. He gave a lot of doctor jargon to basically say, “of course the body will adapt to a certain extent, but they are still dangerously low.” Additionally, he was shocked that, after we received three iGg injections, they just gave up. He said giving the iGg’s subdermally wouldn’t normally work anyway, and then shrugging if it didn’t work is silly.
– At the end of the visit, Dr. Najjar said, “I want to tell you a personal story. I have a son who was given a diagnosis of Autism at a young age. Even as a doctor, my wife and I were devastated. We decided to do everything we could to help. We knew that he might always be that way, but we were going to make sure that we had done everything we could first. This past year, he graduated from High School and enrolled at NYU. He is perfectly fine.”

Update from Friday, July 19

Lily has been in the hospital since Tuesday afternoon, the 16th of July. We had to change our flight to Saturday evening, because she will not get out until late tonight.

She had a Video EEG for two-and-half days. This entails 23 wires measuring impulses at different parts of her brain while they observe/ record video of her behavior during that time. They don’t necessarily think she is having seizures, but this rules that out and gives them significant data, apparently.

This morning, she finally ended the EEG and got the connectors off. She has a sedated Neuro SPECT scan at 2PM, so she’s had nothing to eat all day and an IV – which is a dangerous combination of hungry, grumpy girl and medical equipment to pull on.

Dr. Najjar called to tell us that he has reviewed the additional reports we had delivered (there were some recent blood reports and other items he wanted to see that were not delivered with the other records we sent to him). He is more convinced that we’re on the path toward identifying the specific problem. He reiterated that she has “significant deficiencies with immunoglobulin, and this is reinforcing our thoughts.” He said the SPECT scan results will get to him on Monday, and he’ll call us Monday afternoon.

Then, when all of the blood tests and other items return in two weeks, he wants to meet with us and go over treatment options. He said there are “a couple options to choose from, and we will look at the pro’s and con’s of each. But none of them are risky.” He said that we can cover most of the treatment by phone, but hinted that he might want to sit down with us when we go over the results in two weeks – back in NYC. We will go anywhere to get what Lily needs, but we’re praying for wisdom there. Dr. Najjar has a very strong accent that makes phone calls pretty challenging, and he wants to show us the results and create a treatment plan.

Finally, Dr. Najjar gave me his cell phone number and said he would be available to Lana or I “day and night” if we needed something. He said he would make it his mission to see her get better, and promised “to give her the very same level of treatment I would give my own child.”

I can’t overstate what this means. This man is sort of a legend in the field of Pediatric Neurology, and in as a “solutions-finding doctor” in New York in general. And God seems to have given him a special affection for the Bird.

A Story of Prayer

I have to tell you an amazing story of God’s Hand at work.

This past week, Lana and I were in New York with several pastors to discuss a movement of prayer in the City of Austin – and of course, we were also praying for the City of Austin! We came to NY to do that because of the Brooklyn Tabernacle, and their longstanding Tuesday evening prayer service – a place in the inner city where thousands gather for this mid-week opportunity to seek God together.

If you haven’t read Fresh Wind, Fresh Fire, Jim and Carol Cymbala were called to this dying church forty years ago. With no funds, few members, and as new leaders with no formal training, all they knew to do was cry out to God, and the Lord began to move. The Brooklyn Tab has over 20,000 members today and is a beacon of light in the midst of the inner city. I have never witnessed so many so passionate and expectant for God to move. As you can imagine, part of the reason for their fervency is the desperation of living in a very dark place. Their church, in fact, is in the heart of an area inundated with drugs, gangs, crime, and prostitution.

Today, they worship in a renovated theater that seats 5,000. On Tuesdays, every seat is taken by people coming to pray. The service begins at seven, and people begin to trickle in at 5PM to pray at the altar. Our primary reason for coming to New York was to sit in on this service.

This trip was planned months ago.

But there’s more to the story…

Two weeks ago, we received a long-awaited call from a Pediatric Neurologist we’d been trying to see for months for our little girl Lily (also known as “Lilybird” or “The Bird” to those who love her most ☺.)

Lily Bird

This amazing six-year-old had a brutal first year of life that included two major surgeries. Lily was developing normally when, around age two, she began to regress – losing her ability to talk and largely sinking into her own little world. She hasn’t yet recovered. After years of research and appointments, we believe that Lily has a viral infection in the frontal lobe of her brain that is stalling her development.

Dr. Souhel Najjar is one of the most widely sought after specialists in the world, and books have been written about his treatment of rare brain viruses. You can follow this link to see a story on the Today Show about another one of Dr. Najjar’s patients, and if you click on the “Brain on Fire” story to the right of that one, they show a clip of the doctor himself. Just to get in to see this man was incredibly difficult. But God answered our prayer. And on top of that, after he finally said that he wanted to see her, we were offered an appointment on the 16th of July – the very next week after our Brooklyn Tabernacle trip.

But there’s more to the story…

Back at the Brooklyn Tabernacle, when Pastor Cymbala heard we were coming, he invited us to meet with him before the service to update him on what was happening in Austin. It was a pleasant half-hour conversation, and right at the end fellow Austin Pastor David Smith mentioned that Lana and I would be back in the City next week with our daughter. Jim graciously asked for more details so he could keep her in prayer. We were glad to share and of course grateful for his sensitivity and compassion.

The prayer meeting began with people lining up for one-on-one prayer with deacons and prayer leaders at 6:00. Hundreds of people lined up – extending to the very back door. It was incredible to witness the expectation these people had for God to move! They somehow prayed for everyone in line – without rushing anyone – and finished with about five minutes to go before the service started. It began with some incredible worship and praise before Pastor Cymbala came to the podium.

Prayer Meeting

Just being reminded of the power of prayer when we were on the verge of such an important appointment for Lilybird was worth the trip for me. It was as if the Spirit of God was telling me, “I am big enough to bring you all the way to Brooklyn and remind you that I delight in answering the prayers of my people. I have heard you. Don’t lose hope!”

The reminder of God’s presence in such a clear way would have been reason enough to be in New York this week.
But there’s more to the story…

Jimcymbala

When Jim Cymbala came to the podium, the first words he said were, “I would like to ask Lily’s Mom and Dad to come right here to the front. I believe the Spirit is calling us to pray specifically for this little girl in Texas tonight.” He repeated Lily’s story to the congregation, asked his pastors to surround us, and asked everyone to cry out to God for Lily. And for fifteen minutes, 5,000 people prayed for a miracle. Pastor Cymbala wept for our little girl. People of all ages, races, cultures and backgrounds cried out to God for Lily by name. For Lily in Texas to speak.

The service continued with more music, specific prayer requests distributed on cards to everyone in the audience (who then divided into pairs to intercede), and a brief message from the Book of Acts. Toward the end of the service, Pastor Jim reminded the crowd about Lily. He then shared that he realized Lily’s family wasn’t the only one in the room with an urgent need, and he asked others in crisis to come to the altar for prayer. At least 500 filled every space at the front and we sang and prayed.

As hundreds gathered at the altar, I couldn’t help but think that God had set aside a time just for The Bird to be prayed over. And He did it a mere subway ride away from where she’ll see a doctor next week that we didn’t even know about when we planned this week’s trip. I won’t presume to know what God is up to. But a God who is great enough to bring all of these things together is certainly capable of saving His best for last, and we’re expecting Him to do something great – whether He heals Lilybird completely or has something better in mind.

We can’t wait to see what God has in store!
And there’s more to the story…

Serving as a pastor in Austin, Texas is unlike any other place on earth. The Lord has connected many of the pastors in our city with deep and lasting friendships across improbable denominational and racial lines. Some of my best friends are people whom the world might see as “competitors,” but that’s hardly the case. We long to see the people around us know how much Jesus loves them, and it’s a thrill to share that message together!

Last year, I mentioned in passing during one of our meetings that one day I would love for these friends to pray over Lily. One of them picked up on it and set a date for this to happen. And on a Sunday evening after everyone had wrapped up the ministries at their churches, they gathered in South Austin at Bannockburn to surround our girl and pray for her. Witnessing all of those men and women of God calling out in unison for a breakthrough was one of the highlights of my life. We actually came together on another occasion to pray for her a few months later, and when they received word about our upcoming appointment, my friends set a date for prayer this Sunday evening – the night before we take Lily to NYC.

These pastor friends have allowed me to choose who to invite to these gatherings, and Lana and I decided on both previous occasions not to announce these prayer times to our church or to anyone else. We kept it quiet for three reasons: we wanted our pastor friends to be able to focus on prayer without thinking we had an “audience” watching the prayer, we didn’t want to get so many in the room that not everyone had the freedom to pray as God led them, and (probably the primary reason) I am sensitive to the fact that our church is filled with urgent needs of hurting people. I don’t want our congregation fixated on the problems of their pastor’s family, or to bring special attention to our needs.

But as I have heard from so many people this week who received word about what’s happening in Lily’s precious life, those reasons feel silly. I was reminded that, while we’ll pray for healing and insight, the focus of our times together is not on our family at all, but on the majesty of Jesus.

So I want to invite you to join us in prayer this Sunday evening with some very special pastors from around Austin. We’ll be praying for a little girl that has stolen my heart and grown my faith. And we will give thanks to a God who cares more than any of us for The Bird.

We will gather at 6PM in the Worship Center at Bannockburn in South Austin – at the corner of William Cannon and Brodie Lane.

We realize that there is still more to the story. God is already using one six-year-old girl to show Himself faithful and connect the hearts of people in prayer. I can’t wait to see what the days ahead will bring.

He is able!

What Bothers Me Most About the Scout Debate

280px Boy Scouts of America corporate trademark

In the past forty-eight hours, my email inbox has been flooded with alarming warnings about the historic implications of the decision by Boy Scouts of America leaders to admit young men who openly claim to be homosexual. To be fair, I share the concern of many Americans that the sweeping change in public opinion is bringing forth swift and at times irrational decisions in this area. Still, I think the seemingly sudden shift in sentiment for all things related to gay rights has revealed a flaw in much of Christian thinking:

We shouldn’t be against gay rights because we are against homosexuals. We should question gay rights because we don’t believe homosexual tendencies or lifestyle define any person. Period.

When it comes to the Boy Scouts, just because a young man believes himself to “be gay” doesn’t mean parents, Scout leaders, or others should believe him to be so. He may have some tendency to be attracted to young men, or something in his past that drew him away from the heterosexual norm (and by norm – for the sake of this blog – I mean the lifestyle that over 98% of the population claims, according to a recent study.) According to Scripture, God’s plan for everyone is either to enjoy a single life or to marry someone of the opposite gender. So why do so many in the Church seem to be identifying people solely on this particular preference – as if we agree that they were born this way? Instead, why wouldn’t we treat homosexual tendencies as one variable of a person’s choices rather than his or her core identity? When we exclude someone from a congregation, or family, or Scout troop, because they claim to be “gay,” aren’t we acknowledging the lie that they are who they are and cannot change?

With all of the publicity over the gay agenda in the past six months, I think a lot of people are missing the point: in at least a half century of attempting to do so, no one has offered any substantive evidence that anyone is born a homosexual. No one.

In fact, one recent headline grabber related to gay rights unintentionally makes my point about the myth of the homosexual identity. It came from the announcement of NBA player Jason Collins that he was gay. Ironically, he might have been more honest to say he had chosen the homosexual lifestyle, since he actually had been engaged to a woman as recently as four years ago. Of course, he instead argued that it was his heterosexual behavior that was the choice, and his homosexual behavior was his true identity. But lost in the story was what I would deem the most important part: that Jason Collins has a straight twin brother. If homosexuality was a genetic part of one’s nature, after all, wouldn’t one’s genetic twin have the exact same nature? This is exactly why homosexuality twin studies have been a consistent “best kept secret” among the homosexual population: they consistently disprove a genetic factor. (See Schacter, Daniel L., Gilbert, Daniel T., and Wegner, Daniel M. (2009) “Psychology”. Worth Publishers: 435.)

I believe that much of the current debate is the result of decades of mistakes in the American Church. Instead of facing the issue of homosexuality with healthy conversation and an honest look at the factors that may have led people into this lifestyle, many reacted with anger, rejection, and cruel jokes. It’s as though we – and not them – really believed that participation in such activity completely defined who they were, and left them beyond redemption.

I also fear we will make the same mistake again with Boy Scouts. Our church hosts a troop, and has for many years. If a young man wanted to participate who was struggling with his sexual identity, I hope our leaders would welcome him with open arms – and refuse to accept that this is the only aspect of the young man’s identity. I’m not talking about coercive reparative therapy happening during Scout meetings. I’m talking about sharing the love of Christ with a young man. And I have tremendous confidence in the powerful influence of Godly male mentors.

When the next Scout debate comes along – the one over allowing Scout Leaders who participate in the homosexual lifestyle – I will be far more interested in the outcome. This is not because I hate anybody, or I am falling into the trap of core identity based on choice. It is because, apart from all of the PR efforts thrust upon us to the contrary, there is evidence that this could be a risk to children.

In the meantime, I challenge you to join me in looking beyond the labels and see the people all around us who are longing to hear about the love of Christ – regardless of the choices they have made or are making.

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The spiritual barriers people face are countless, but they can be categorized into Eight Primary Walls. These walls correlate with the 8 primary breakthroughs that everyone needs.
1 of 48
When I am facing a difficult situation, I feel like I can solve problems on my own.
2 of 48
I believe God wants what is best for me.
3 of 48
I try to avoid temptations that would bring me harm.
4 of 48
I feel strong relationships are hard, but worth it.
5 of 48
I believe the Bible has answers for today's circumstances.
6 of 48
I tend to expect the worst to happen.
7 of 48
I spend too much of my energy pursuing material things.
8 of 48
I have too many of my own problems to deal with the problems of others.
9 of 48
I am willing to serve others for nothing in return.
10 of 48
I observe things that make me wonder if I should believe the Bible.
11 of 48
I have been wronged in the past in a way I cannot get over.
12 of 48
I think that God will meet all my needs.
13 of 48
I have witnessed things that make me wonder if God is in control.
14 of 48
It humbles me to think I can know God.
15 of 48
I think God cares about the details of my life.
16 of 48
When looking back on my life, I tend to focus on all of the things I did wrong.
17 of 48
I am amazed at God's power.
18 of 48
I believe in an all-powerful, all-knowing God.
19 of 48
I am grateful for the things I have been given.
20 of 48
I don't believe anyone can ever know what is absolutely true.
21 of 48
I am intentionally seeking to grow in my relationships with others.
22 of 48
I am confident God has forgiven me for my past.
23 of 48
I know a lot of people, but don't feel very close to many people.
24 of 48
I believe God is willing and able to answer my prayers.
25 of 48
I have a hard time trusting people.
26 of 48
I have to guard against judging people when I learn they are dealing with tough circumstances.
27 of 48
My faith practices are more about routine than relationship.
28 of 48
I worry that God is angry with me.
29 of 48
I question why God allowed certain things to happen in my life.
30 of 48
I find myself more focused on the things I don't have but wish I did.
31 of 48
When bad things happen, I wonder if God can make things better.
32 of 48
I believe truth is the same for everyone.
33 of 48
I find myself drawn to things I know are bad for me.
34 of 48
It troubles me that God has not answered my prayers.
35 of 48
I am so busy that I find myself ignoring the most important things in my life.
36 of 48
I feel I can turn to God for direction.
37 of 48
People would describe me as a giving person.
38 of 48
The possibility of gaining a good friend is worth the risk.
39 of 48
I worry about the problems that the future holds.
40 of 48
I believe God loves me in spite of who I am.
41 of 48
I look forward to good things in my future.
42 of 48
When bad things happen, I feel like I am getting what I deserve.
43 of 48
I feel compelled to make the world around me better.
44 of 48
People who have hurt me in the past cause me to avoid some relationships today.
45 of 48
I believe God is loving and kind.
46 of 48
I am willing to sacrifice immediate gratification for something better down the road.
47 of 48
I feel with God's help, I can face any situation.
48 of 48
I feel there is a disconnect between who I really am and how I act in front of other people.
Great you have finished the evaluation.
Ready to see the results?