Tag Archive - Lily Rush

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.

Lily’s Medical Biography…

Our youngest daughter, Lily Anne, has sort of dominated ourlives with her medical adventures in the last three years. I’ve transfered over our postings during that first year of life, because they share so much about us – and about how God has been faithful. The adventure is certainly not over, but I wouldn’t trade Lily for anything… and I’ve learned to be content in all circumstances.

Jan 2, 2008 Update on Lily

Dear Friends,

The last time we shared with you about Lily’s medical condition, we told you that we were waiting until January of 2008 to do some follow-up testing on Lily’s kidneys. You might recall that the doctor in Boston gave us hope that there was a small chance that her reflux could improve on its own, and he wanted to give her the rest of the year to try.

On Monday (New Year’s Eve), we went in for a follow up VCUG, and received the results this morning from Dr. Jolet. Here’s what we discovered: when children have grade 4 and 5 reflux (5 is the worst, and Lily had a 4 on one side and 5 on the other), the hope is that over the course of time it might improve to grade 3 or maybe even 2 if everything goes very well . This would allow us to continue in hopes that it would improve on its own, or be treated without having to go through another surgery. She told us that the results don’t just show improvement – they show that Lily’s problem is completely gone! Dr. Jolet said that we shouldn’t be surprised if the doctors in Boston want to re-test because the results are so impossible, but we have no reason to doubt that God has answered our prayers with a miracle!

Thanks to all of you for your many prayers in the last year. The Lord was listening, and we are eternally grateful.

Lily took her first steps on New Year’s Day, and we heard this news on January 2, so 2008 is off to a fantastic start. Hopefully, this will be the last CarePages update you receive from the Rush Family. Nevertheless, I doubt you’ve heard the last of Lily Rush. I can’t wait to see what God has in store for her in the coming days, and it’s only fitting that this chapter of her life would end with something only God could do.

Sep 25, 2007 Update on Lily

We’re glad to report that Lily is feeling better and back to her old self. We are now ready to celebrate her birthday!

Lily Anne’s first-year birthday party (postponed from last Saturday) has now been rescheduled for this coming Sunday, September 30, at 6:00pm. We want to invite you to join us at Bannockburn Baptist Church in the Banquet Room of the Abington Center.

More than anything, this will be a chance for the Rush Family to express our gratitude to you for all of the prayers and encouragement you have offered on behalf of Lily Anne this past year. As we mentioned previously, we also want to take the opportunity to say thanks to the Ronald McDonald House – a wonderful charity that blessed us so much during some very difficult days. We plan to deliver a large gift basket to the House; so, in lieu of a gift for Lily, please consider bringing something to include in the gift basket. The most needed items are travel-size shampoos, conditioners, soaps, razors, shaving cream, lotions, toothpaste, and toothbrushes. Another idea is individual servings of non-perishable snack foods, such as goldfish crackers, granola bars, fruit snacks or cookies.

I recognize this is last-minute, but we hope you’ll consider being with us if you’re able. God is good!

Sep 22, 2007 Update on Lily

Dear Friends,

We regret that the birthday party scheduled for a few hours from now will have to be postponed. Lily spent the day like we have so many other days this year – trying to diagnose a medical mystery. She is covered from head to toe with big red welts, and is running a fever. So her birthday included two blood extractions, a chest x-ray, an echocardiogram, a urine catheterization, and one IV.

After all of that, we are grateful to have now ruled out endocarditis, a very dangerous bacterial infection around the heart. This is common among heart patients, and that’s what caused most of the fear today. Later this evening at Dell Children’s Hospital, our cardiologist stated that he felt confident it was something else. After three doctors have looked her over, no one knows what she has. They believe she has some strange virus – perhaps something of a “pox” strain – and they will watch her closely for the next few days.

The doctor who released us from the hospital told us that we should assume that she is contagious, and try to isolate her as much as possible. So that means no Lily at the party, and we’d rather have Lily there to show her off. The whole point of getting together was to thank all of our wonderful friends for their faithful prayers and encouragement. We still hope to make that happen, and I promise to post the time and date of our new party by Monday morning. It will most likely be some time next weekend.

Lily’s first year has been a lesson in perseverance and flexibility. Why would her first birthday celebration be any different? Tough day or not, we are very grateful that she’s with us, and grateful for friends like you. We will keep you posted.

Sep 8, 2007 Update on Lily

Dear Friends,

Lily Anne turns one on September 21. It’s hard to believe all that has happened in these twelve months, but we can’t tell you how grateful we are to get to that milestone!

We want to invite all of you to join us on Saturday, September 22 to celebrate Lily’s birthday – and all of the answered prayers.

Because of your continued prayers and support, we would like to invite you to:

Lily’s First Birthday Celebration!
When: Saturday, September 22
Time: 3 PM – 5 PM Come & Go
Where: Bannockburn Baptist Church
3rd Floor – Abington Center

We would like to use this milestone as an opportunity to say thank you to the Ronald McDonald House. We will be delivering a large gift basket to the Home from the Rush Family. So in lieu of gifts for Lily, please consider bringing something to include in our gift basket. The most needed items are travel size shampoos, conditioners, soaps, razors, shaving cream, lotions, toothpaste, and toothbrushes. Or you might choose to contribute individual servings of non-perishable snack foods, such as goldfish crackers, granola bars, fruit snacks, or cookies.

I hope you’ll join us, so that Lily can say thank you in person!

Apr 27, 2007 Update on Lily

We just returned from Boston – exhausted, but grateful. We spent yesterday at Children’s Hospital of Boston, including a long meeting with Dr. Hiep Nguyen. Dr. Nguyen is the Co-Director of Robotic Surgery and Assistant Professor of Surgery at Harvard Medical School. He specializes in kidney cases such as Lily’s, and we learned a lot. The most important news thus far is that he thinks there is a 40 to 60% chance that she could outgrow the condition. In January when she was originally diagnosed, she was given almost NO chance of outgrowing this condition!

At CHB, they maintain an enormous database of patients with Lily’s condition (over 4,000 kids). By comparing patients, they can ascertain with much more certainty what the next step should be. They gave her a DMSA (a nuclear test on her kidneys to measure effectiveness), and found that her right kidney is not functioning fully, but that the left kidney has compensated for it, and we should not anticipate future problems.

The next step is… waiting. Dr. Nguyen recommends that we wait until January 2008 – a year from the original kidney diagnosis – to test the reflux again and measure progress. By then, they will be able to know whether the body is healing on its own. If she winds up with a urinary tract infection between now and then, the plan will change, but until then we’re not doing any damage in the delay.

Lana and I left Boston with a lot more peace of mind about waiting, a better understanding of kidney reflux, a better reason to wait, and a lot of gratitude for a much better outlook and some hope for no more surgery. Thanks for all your prayers for our Lily! We’ll keep you posted!

Apr 21, 2007 Update on Lily

We would appreciate your prayers for Lily this coming week. We are headed to Boston, MA from 4/24- 4/27 to meet with a urologist there regarding Lily’s impending kidney surgery. As you know, because of kiney reflux, we have been told this is imminent. Through internet research, we found that they have been doing this procedure robotically since 2001 at Children’s Hospital of Boston. If this can work for her, it would mean only five small incisions rather than the large opening and subsequent scar we were told to expect. That, in turn would mean a less painful process of recovery and a more rapid one as well. We vote for that! I’m sure that we’ll be answering a lot of the same questions over again and probably repeating some of the same tests, but we are praying for a definitive answer. I am also hoping that the procedure could be done sooner than later. The older she is, the more she’ll be frustrated about immobility and recovery… and we’re more than ready to move on with her life.

One of the greatest blessings of watching Lily’s situation continually improve in recent months has been to hear how many little children have been drawn to prayer – fervent prayer – on a consistent basis for Lily. Testimonies of whole classrooms of children, and little ones at home every night before bed, calling out to God on Lily’s behalf. The prayers of children, I believe, are a huge part of where she is today.

Mar 23, 2007 Update on Lily

Thanks to all of you for your continued prayers, cards, notes, and… patience with us as you’ve waited on a webpage update!
Lily went to the doctor today for her six-month check-up and all is well. We have now hit the fifteen pound milestone. She still has a little bit of fluid on her right lung left over from heart surgery, but they are just monitoring that and don’t seem concerned.

Lily actually has a big weekend coming up. She is release to go to church for the first time! That also means mom is released for the first time in a long time, so we’re really thankful. Lily’s development is right on schedule, and she continues to fill our lives with joy and adventure. But for the past month, the adventure has been the fun variety. Thank you, Lord.

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