Wednesday, October 12, 2011

We Did What We Came To Do

Here we go with the first official update from California.

Lily did super on the plane - even the flight attendant said so!
We got lucky and were able to book a nonstop flight from Austin to LAX which made everything so much easier.  We took her car seat on board because she's comfortable in it and can't undo the seatbelt.  We put Ryley and Reagan on the row in front of Lily so if she kicked the seat a few times, we didn't have to worry about getting hateful looks from strangers. 

But what made the flight most easy for me is that Ryan sat beside her the whole flight!  We were on one of those smaller planes that only seats two people on each side of the aisle.  I sat behind Ryan and was the official giver of snacks and toys.  Even though Lily did great, my flight was easier than Ryan's, I promise you.  

I have an awesome husband, in case you didn't already know that.

My parents had arrived in California the day before so they picked us up at the airport and whisked us off to our lovely little beach house.  My mom had already gone to the grocery store and stocked the fridge, which was a nice treat.

The first day was spent just kind of lazing around, getting our bearings and eating some wonderful seafood.  

Tuesday, we headed out for our appointment with Dr. Goldberg.  We were there for about two hours, and then we headed to Huntington Park for a Neuro-SPECT.  

Ryan sent an email to our church congregation with details from the appointment so I'm just going to post it below rather than writing everything all over again.


It's been a very long day in L.A., but we're glad we came.  Lily has had lots of blood taken, has undergone a sedated Neuro-SPECT, and a thorough examination, and mom and dad have been flooded with new information.  We spent the morning with Dr. Michael Goldberg - the man we came to see.  He is a medical doctor who is convinced that many children who are given Autism labels have been misdiagnosed and instead have treatable medical conditions.  Dr. Goldberg is a leading researcher in Neuro-Immune Deficiency Syndromes and is finding that many children who have Autism-like symptoms - especially those who developed them later in life after developing normally - are actually fighting a virus that is affecting brain function.  As you might imagine, because there are so few medical doctors giving hope for treatment of Autistic children, it is very difficult to get an appointment with this man.  Most of you know that we discovered through other means this summer that Lily had issues with her brain that concerned doctors enough that she was hospitalized for a couple of days and that facilitated two MRI's in two months.  This was followed soon-after by a call that we had, in fact, been accepted to see Dr. Goldberg.  

Because of Lily's long medical history the extensive blood work, MRI, and EEG history there was to examine, Dr. Goldberg already had a significant body of data to study prior to our visit.  When we sat down with him, he pulled out the huge stack of papers from these medical records and flipped through to 9 or 10 places that he had marked with post-it notes - showing us multiple examinations in her past in which test results had indicated significant viral activity taking place in her system that seemed to go untreated.  Dangerously low platelet counts in her first six months were certainly noted by our doctors, but no one indicated to us that this is commonly a strong indicator of the presence of viral infection.  Some of you remember her first birthday party being canceled because she got very sick and broke out in a rash all over her body - something that her hospital stay indicated was an "unexplained virus."  He said it most certainly was, but that the course of action of just letting us walk away with no treatment made no sense. With the change in brain function discovered over the past few months, Dr. Goldberg said it stands to reason that she is dealing with a Frontal Lobe Neuro-encephalopathy (a viral infection that is presenting itself in the frontal lobe of the brain).  Do you remember the inconsolable, unexplainable pain this summer?  Before we even get the results back from today's testing, he saw enough evidence in her current chart to indicate that she was (and is) most likely experiencing headaches.  He said that she is hitting her head probably in part because of frustration, but he would not rule out her trying to deal with discomfort.  

Dr. Goldberg has some recommendations related to dietary change that can make a difference long-term in helping to strengthen her immune system and has asked us to make some changes (I'll spare you the details - if you want to know more I'm sure Lana can fill you in).  But immediately, he put Lily on an anti-viral medication which begins in the morning.  He believes that Lily will begin experiencing relief from her condition - and cognitive improvement - in the near future.  Of course, we have gotten our hopes up because of other treatments in the past, but never in Lily's life (other than her heart condition) have we heard such a clear and sensible diagnosis with such a clear treatment and such a short-term expectation for improvement.  

A Neuro-SPECT is a fairly new procedure that measures blood flow in the brain.  We'll know later in the week a little more about how her brain is working right now, as blood-flow is not measured by MRI or CT Scan. So the rest of the week in California, we are just on "stand-by" in case they need more tests.  If the anti-virals work, Dr. Goldberg said we can actually expect Lily to get very irritable toward the end of the week as the virus reacts to the meds.  She was in a rotten mood today (which is pretty expected now - she knows what doctors offices look like, and she knows what they mean for her).  So there was lots of wrestling and fussing and biting.  When we finished up, Dr. Goldberg said, "I'm sorry she's having to get so angry, but I take solace in the confidence that the next time she visits this office she will be a different child."

So that's our prayer, and for the first time in a long time, we have significant reason to think the answer may be within reach.  

If you want to know more about the work he's doing, you can check out the website here:

Thanks so much for your prayers.

That may be more details than you ever cared to know!

We are debating on starting the anti-viral medicine while here in California or waiting until we get back home.  The first several days of taking the meds begins a "die-off" period which can cause some fairly intense headaches and just general irritability.  I'm a little concerned about the flight home if she's not feeling well.  We're getting the prescription filled so we'll make a decision about that later today.

Since yesterday was such a bummer of a day filled with doctors, nurses, and other medical staff, we plan on taking it easy today.  We're renting bicycles and planning to do some nice, touristy riding.  There's a 22 mile bike path right in front of our house that meanders along several southern California beach towns.  While we don't plan to ride all 22 miles, we're going to do a little exploring.

I know that many of you have been praying for us for a while about this very trip.  We are so appreciative of each and every one of you.  Now we start praying that this new plan of action is exactly what the Bird needs and that maybe one day in the future, we'll see our sweet girl emerge from this "shell" and hear her sweet voice again.

Thanks for checking in - enjoy your Wednesday!


  1. This is very interesting. I hope the anti-virals work. I'm so, so sorry that she is going to experience the headaches and pray for you that this treatment is everything she needs. Such a beautiful little girl should not have to go through this! You are beyond wonderful and caring parents. I know the feeling of hope and I'm cheering you on! Try to enjoy some of the beautiful scenery while you are still here in California.

  2. That is so interesting. I am praying for all of you that this works and that this treatment is exactly what she needs and what God led you to. Enjoy your vacation time!

  3. Wow what an incredible update. Praying for yall.

  4. Thank you SO much for this update! Praying expectantly . . .

  5. Wow. I miss a week with your blog and I miss a lot!

    I am so happy to hear that Dr. Goldberg has given you new hope and I truly hope that this hope leads to some dramatically life-improving changes for Lily. Gosh darn, after all your little one has been through... She deserves a break!

    I'll be thinking about you as you try to enjoy some of that trip and I hope you have a safe and uneventful flight home!

    P.S. Your husband really *is* a saint for giving you the entire flight off! Hold on to that one!!!

  6. I'm so glad for the update! Give Ryan and the girls a hug and tell them there are quite a few of us out there praying for Lily and the entire family.

  7. Wow, what an amazing thing to hear! I pray that this is just what Lily needs. What an amazing miracle that would be!!! Praying continually for all of you. I hope that you are able to enjoy some wonderful family time while you are there.

  8. I am thrilled to hear such good news about Lily! How exciting to find out this may be solved with anti-tviral meds! The doctor sounds really encouraging and no doubt he really sounds like he knows what he is talking about. I can't wait for these changes to start taking place....she may even begin to talk! Praying and expecting great things from God for Lily and your family! I still believe in miracles and God is definitely in the process of giving you one. Now that all the dr stuff is taken care of for now, enjoy the rest of your week doing the touristy stuff. :)

  9. I'm crying. Hope is such a precious, precious thing. We place our hope in God and pray that He is using this doctor and will use these meds to provide more answers for Lily. I pray expectantly and pleadingly, and I ask Him to encourage your hearts and to remind you that with Him all things are possible and that hope in Him is never, ever misplaced.

  10. I am in tears (sorrow and joy) reading your blog. I just discovered it today! I attend SHPC on William Cannon and we are part of the breaking down the walls campaign. I am SO happy you are getting this help and I SO hope that the virus is the cause of your daughter's pain and suffering. I have a son who had some similar issues (although possibly not as severe). We have been fortunate enough to work with a doctor here in Austin who has similar beliefs as Dr. Goldberg. We have followed her recommendations which have included dietary changes and seen great results!! I am SO happy you have found Dr. Goldberg! I would love to sit and share our stories sometime once things have settled down for your family. I am certain we can learn from one another and continue to lead our children down the path of healing. Feel free to email when you have the time


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