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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.

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.

Feb 24, 2007 Update on Lily

Lily has had a fantastic week. She is completely free from the virus symptoms she brought home from the hospital, and the soreness from surgery seems to have passed as well.

We saw our pediatrician, Dr. Jolet, on Wednesday. Lily has actually gained two pounds since her surgery – she’s over 13 now! Those are huge steps for us.
Thanks for all the continued prayers. Every day with no events is a wonderful day, and we’re starting to string together quite a few of those.

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The possibility of gaining a good friend is worth the risk.
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I am grateful for the things I have been given.
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When I am facing a difficult situation, I feel like I can solve problems on my own.
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When bad things happen, I feel like I am getting what I deserve.
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My faith practices are more about routine than relationship.
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