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: http://www.nids.net/
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.