Monday, October 31, 2011

Who's With Me??

First things first - I need to brag.

I just finished Workout Two of the Couch to 5K program.

Second thing - I got so many comments on Friday that I thought I'd start a little online Couch to 5K group. If you're ready to give this thing a try and want a supportive accountability group to run along with you, here's what to do:

  • Leave a comment here or on Facebook or Twitter by Thursday, November 3rd, telling me you want to participate.  
  • Give me your contact info - either email, blog address, Facebook name or Twitter "handle".
  • I'll publish a list of all participants on the blog on Friday, November 4th. 
  • I'll periodically send out reminders to encourage you, keep you motivated and offer accountability.
  • Being in charge of keeping you motivated will be very strong motivation for me!
For those of you not wanting to spend the entire workout looking at your watch, keeping track of seconds and minutes, I highly recommend the C25K app.  It'll keep track of what workout you're on and will let you know with a beep and a voice-over when you should be walking or running.  You can also put a playlist on the app so you'll have so music to run by.

Here's the C25K app for those of you with an Android phone.

Visit www.c25k.com or www.coolrunning.com for more information on the program.

I'm excited about this!  I feel kind of like a peppy aerobics instructor, leading her faithful followers in the quest to get fit.  So when you get an email from me, just picture this.... 


your very own personal trainer, complete with legwarmers and side ponytail. (No, that's not really me for any of you who might be wondering.  Or worrying.)

Now go Team Bird!  Get off that couch and run!  

But don't let the picture frighten you - let me know you're on the team!

Thursday, October 27, 2011

The Ramblings of a Crazy Lady

Something has been simmering in the back of my mind, lately.  And it keeps resurfacing at various moments throughout the day so that's usually my cue to pay attention.

Let me preface what I'm about to say by asking you a question:  What do you do when you're feeling a little stressed out?  Or when you're having a bad day?

When I get some bad news or am feeling overwhelmed, my first reaction is often a strong desire to escape. To hit the sheets for a nice, long nap.  Or to read the kind of book in which no learning of any kind takes place.

In other words, my first reaction is to simply run away.

But not to physically run.

As in putting two feet in front of the other at a quick pace.  Or as Merriam Webster defines it, to go steadily by springing steps so that both feet leave the ground for an instant in each step.

That kind of running away sounds like sweating could be involved.

And I'm not a big fan of sweat.

In fact, about the only way I'd be guaranteed to actually run is if you put a belt made of bacon around my waist and released a pack of hungry dogs.

But lately, when I'm feeling a little stressed, mixed in with my feeling of escape is a tiny, tiny twinge of pent-up energy that needs a release.  And it feels like I need to release it through running.

And Lord knows that since I passed the big 4-0 marker two years ago, I could certainly stand to do some kind of moving.

So here's the deal.

I'm seriously considering doing the Couch to 5K Program.  It's for nine weeks and only requires you to exercise three times per week.

My oldest daughter is interested in walking/running along with me and I thought it might be fun to celebrate the end of our nine week adventure by actually running in a real 5K. (who is this person writing today's post??)

Why am I telling you this?

So that you can have the freedom to hold me accountable.  To ask me how the program is coming.  To request to see the medal I'm going to receive when I win that 5K race.

Oh, I jest.

But maybe you can ask to see my participant ribbon.

So, how many of you are runners out there?  Or at least movers of some sort?  Do you think I can do this?  Keep in mind I have 42 year old knees....

And for those who aren't, what do you do when you need a little escape from life?

Wednesday, October 26, 2011

Am I The Last To Know This?

I think you'll be relieved to know that today's post will have nothing to do with Lily's new diet.

Nope.  Not one thing.

Instead, today, I have a pop quiz for you.

Quick - what is this a picture of?


Do you need a hint?

It's a medical device.  

Pretty low tech, pretty inexpensive, but medical equipment all the same.

Are you ready?

It's a..... pill crusher.

Maybe I'm the last person on earth to know about this handy little device.  Maybe you looked at the picture and knew what it was immediately.  Maybe you think I've been living under a rock.  

But I'll tell you something - this cute little thing is already a game changer at my house.  

When Dr. Goldberg had Lily start taking an anti-viral, I was dismayed to find out it was a rather large pill.  Not a liquid or a chewable or even a capsule I could open up and dump into some juice or yogurt. Just a big, solid pill.

So I've been crushing it the old fashioned way.  

I found a meat mallet I've never used.  I got a new cutting board.  And I proceeded to whack the pills into powder.  But the first few blows would cause the pill to shoot some little pieces off the cutting board so I knew I was losing some precious medication.  So I started creating a barrier around my cutting board crafted out of silverware.  It helped but I still felt I was losing little shards of the pill.

So I conducted my own medical research by googling "pill crusher".  And lo and behold, a device that actually crushes pills exists.  And according to Google, would most likely be available at my neighborhood Walgreens.

Tonight I was able to crush Lily's pill by simply removing the top of the crusher, like so:


Oh!  Right now, I'm thinking this might have made a quite gripping video.  I'm sorry I didn't think of it before I took all these artistic photos.  Oh well...

Drop the pill in the clear cup.... 


Twist the cap back onto the clear cup and voila - a pill crushed into a nice, fine, contained pile of powder.


Maybe this all old news for you.  

But I for one am constantly amazed by the marvels of modern medicine.

Tuesday, October 25, 2011

One More Thing About the Diet and Then I Promise to Stop For a While

Last Friday, I sent yet another email to the doctor with questions about foods that Lily can and cannot have.

This is my original email:

Sorry for being such a pest but I'm really trying to get this figured out so I can quit bothering y'all!  We've got too much invested in all this to ruin it by feeding her the wrong stuff!   I want to come up with a week's worth of foods and then just rotate them around.

Can Lily have -

Spices & Baking:
allspice
nutmeg
ginger
cloves
Splenda brown sugar blend
flaxseed meal
Ideal no calorie sweetener (xylitol)
ideal brown sweetener (xylitol, maltodextrin, molasses, sucralose)
cornmeal

Fruit:
jicama
peaches
fruit leather (apple puree concentrate, natural lemon juice, natural apple flavor)

Snacks:
Tings crunchy corn sticks (Corn meal, contains one or more of the following: sunflower, expeller pressed canola or corn oil, nutritional yeast, salt)

Dairy Substitutes:
goat butter (made from goat milk)
buttermilk (made from goat milk and lemon juice or vinegar)

Breakfast:
Grits
What other hot cereals can Lily eat?

Thanks so much!

Lana Rush

Since I wasn't home when the nurse called to give me the answers to my questions, my husband took it upon himself to record the phone message in an email and forward it to my phone.

Here's Ryan's interpretation of the doctor's response:

Dr Goldberg said:

There are no hot cereals that Lily can eat.

He said no flaxseed, no allspice, nutmeg, ginger, cloves, cornmeal, jicama, sunflower, grits, brown sugar blend brown sweetner molasses 

Lily may eat air and water. (I made this part up.)

And there you have it.  

Air and water.  

Two things I know I can safely feed my daughter.



Monday, October 24, 2011

Houston... We Have A Cookie. And We Are Happy.

On the way to pick Lily up from school Friday, I was sneaking in a Skinny Cow chocolate bar.

By the way,  have y'all discovered these yet?  They're called Heavenly Crisp candy bars and they come in chocolate and peanut butter.  Now, I've only tasted the chocolate ones because I don't like peanut butter interfering with my chocolate but I can tell you this: the Skinny Cow does not lie.  The milk chocolate ones are most definitely heavenly.

Skinny Cow Heavenly Crisp Candy Bar Milk Chocolate

Anywho, as I said, Lily wasn't with me so I thought I'd take advantage of the opportunity to eat a little chocolate, since her new diet limits chocolate intake and I'm not so cold-hearted that I would eat it in front of her.

Instead, I sneak around, eating it when she's not home, then brushing my teeth so I don't have chocolate on my breath.  What can I say?  That's just the kind of mom I am.

But my cell phone rang so I set my candy down on the console and proceeded to yak it up all the way to her school.

I got out of the car to meet Lily at the sidewalk.  I opened the back seat car door and let her climb in while I was chatting with one of the therapists.  All of a sudden, I saw her make a quick, darting move towards the front seat about the same time that I remembered the candy.

On a normal day, my kid is quick.  You must eat your Wheaties and wear your running shoes to keep up with her.

But let me tell you - when she saw that chocolate, she was fast as lightning.  She grabbed that candy up, shoved it in her mouth and started chewing like a chipmunk.  As mentioned above, I am not a cold-hearted person (and I like having five fingers on each hand) so there was no way I was going after that candy.

I buckled Lily in her car seat and laughingly told the therapist what just happened.

She then proceeded to tell me that Lily had been consistently using her iPod Touch to request candy.

Repeatedly.

As in, every time she got her hot little hands on that device, she was asking for candy.

And when she was told to request something else, she would go to the emotions page and press MAD.

Also repeatedly.

Mad.  Mad.  Mad.

So now I'm not laughing anymore.  Because that just makes me SAD.

Sad. Sad. Sad.

So I drove straight home, handed the Bird off to my husband, and headed to the kitchen, determined to find a cookie my sweet girl could eat.

After a little experimenting, I came up with a cookie that fits Lily Bird's new diet and is actually tasty.  In fact, everyone in the family likes them, which is an unexpected plus.

And the best news of all?

There's chocolate in it.  Dark chocolate, mind you, which isn't that delicious on it's own, but wrapped around yummy cookie dough, it's quite delectable.

I packed two cookies in Lily's lunchbox today.  I'm hoping when I pick her up from school this afternoon, instead of hearing my girl was mad, mad, mad, I hear that she was happy, happy, happy.

And then I will be, too.

For those of you who might be interested, here's the recipe.

Dark Chocolate Chunk Cookies

2 cups enriched white flour
1 tsp. baking soda
1 tsp. salt
12 tbsp. Earth Balance vegan buttery sticks, softened
1/2 cup Splenda brown sugar blend
1/4 cup white sugar
1/2 cup NuNaturals Stevia Baking Blend
2 large eggs, room temperature
1 tsp. vanilla extract
1 1/4 cups dark chocolate chunks (I used Whole Foods 365 Brand)

Positions racks in the center and top third of the oven and preheat to 350 degrees. Line 2 large baking sheets with parchment paper.

Sift the flour, baking soda, & salt into a medium bowl, set aside.

In the bowl of a stand mixer with paddle attachment, cream butter and sugars/stevia on medium speed until well-blended, about 2 minutes, then scrape down the bowl.

Beat the eggs & vanilla in a small bowl, then add to butter mixture and blend well. Scrape bowl again.
On low speed, add flour mixture and beat until just mixed, scraping down the bowl.

Stir in chocolate.

Drop rounded tablespoons (I used a medium size cookie scoop) onto prepared sheets.  Bake about 6 minutes in the first position you placed them in the oven, then switch the sheets and bake another 6 or so minutes.

Cool on wire cooling racks.

Store in airtight container.

Now before you get all "picky picky" on me, remember we just have to limit her sugar intake, not eliminate it.  Thus the 1/2 cup of Splenda brown sugar blend and 1/4 cup of white sugar you see above.  The original recipe called for 1 cup of brown sugar and 3/4 cup white sugar.  So I would call this a successful reduced sugar cookie.

Friday, October 21, 2011

I Bought The Book!

Exactly what book am I referring to, you ask?

Why, this one, my friend:



In case you can't see the title quite clearly, it's called Wit and Wisdom from the Parents of Special Needs Kids: Mostly True Stories of Life on the Spectrum.

I haven't had a chance to start the book yet, so I was going to put the Amazon review here for you but I found one I liked better so here goes (and I hope this isn't plagiarism or something illegal):


This review is written by Bobbi Sheahan who gave it a 5 of 5 rating.
What a great idea for a book, and well done! Editor Lynn Hudoba brought together dozens of bloggers who are parents of kids with autism and turned them loose. Reading Wit and Wisdom was like settling down with a cup of coffee and a roomful of friends. It was also a great introduction to some really great writing. I can tell I'm going to be addicted to some new blogs.

I am a fast reader, and I thought I'd get through it in a night. I was wrong. It took me several days to read because I had to stop and savor so many of the chapters. It would be impossible to pick out a fave, but I'm going to mention some of the ones that really hit me straight in the heart. I'm sure I'll miss mentioning some excellent ones, but here are a few that have stayed with me:

Jenny Herman made me cry with "The Gift." 
Ashley Pooser made me cry with "Sleep Tight." 
"Stick to the Script" by Amanda Broadfoot and "Blending In" by Karen Asplund Veled made me smile. 
I saw my family in "Like Mother, Like Son," by Amanda Griffiths. 
In "Familiar" by spectrummymummy, a mom finds one of her own tribe in the park. 
I wish I'd read Kathy Kresin's "What, No Instructions?" and "The Third Degree" by Dawn Hentrich five years ago. 


And Kara Wilson's "Welcome to Asperger's Island" is something I'll re-read on the days when I need a laugh. So is "My Kid is on the Spectrum, but Your Kid is Just Wierd," by Flannery Sullivan. 
My favorite just might be "Mompetition," by Heather St. Clair. You just have to read it.

The essays are bite-sized -- not one of them is over four pages -- and the authors make it look easy to pack so much meaning, warmth, humor, and information into the pages of this book. There wasn't a bad one in the bunch, I tell ya. I could list every single chapter in the book this way, and I probably should, but you get the idea. Now get the book. Yes, stop reading this review and get the book. And a nice, big cup of coffee to go with it.



Now doesn't that make you want to read it??

I'm looking forward to spending some time in the pages of it this weekend.  What will make it even more fun for me is that I've gotten to know several of the contributors through their personal blogs.  It'll be fun to see my online friends in real print!

And it's always nice to spend some time with people who just "get it", even if it's only through the pages of a book.  Knowing you're not alone is a good feeling.

One more thing - if you haven't visited the Favorites page lately, you should give it a look.  I've added some more blogs to it.  Eventually, I'm going to need to put those blogs in categories.  But not today!

Enjoy your weekend!



 

Thursday, October 20, 2011

The Diet That Just Might Kill Me

I've been putting off this post because while I consider myself a pretty savvy person, I can't seem to find the rhyme or reason behind this new diet designed by Dr. Goldberg.

I haven't been able to pick up a food label and figure out if it's good for the Bird or not.  Every specialized diet Lily's been on up to this point has been fairly easy to decipher.  I could look at an ingredient list and determine if there was something she wasn't supposed to have in it.  I knew all the words for casein, all the words for wheat, and that kind of thing.

This diet?  I can't find that common thread.

I'm afraid it's going to end up being a long list of Yes Foods and No Foods that I'm just going to have to memorize.  And Lord knows, my capacity for memorization is exceedingly low at this point in my life.  I'm pretty sure the useable space in my brain for taking in additional knowledge is about "full up".

At first glance, the diet seemed to be fairly straightforward.

These were the first instructions I was given:

Avoid all dairy (milk or bovine protein), chocolate, whole wheat/whole grains - while limiting sugars.  Push the protein. Restrict starches.

OK - so the dairy's not a big deal for the Bird.  She's not much of a dairy fan other than yogurt.

Eliminating chocolate and limiting sugars will be harder for me than for her.

Whole wheat and whole grains?  This just seems to go against any kind of nutritional thinking out there nowadays.  The bread I'm supposed to feed her is plain ol' white bread with no dairy in the ingredient list.  Like Wonder bread.  I didn't even know they made Wonder bread anymore.  I figured the whole grain industry had put them out of business.

Dr. Goldberg acknowledges that white bread is not the most nutritious product on the shelves and that's why she's not supposed to have much bread. It's really just an excuse to sneak in protein, like in a sandwich.

Pushing protein will be easy for the Bird as she would be perfectly happy to go the rest of her life eating meat.  And she doesn't need bread to make the meat attractive.  For example, last Labor Day, we invited some friends over for steaks on the grill.  Lily sat next to me and ate my entire ribeye.  I got not one bite of beef.  So protein will not be an issue.

Restricting starches will be harder because she loves pasta and rice as much as she loves meat.  Maybe offering more meat and less starch will keep her happy.

But after several phone conversations with the office staff, I'm discovering that the instructions I've been given up to this point are kind of Phase I of the diet.  There's more and this is where I'm starting to have some trouble figuring it all out.

Here's a list of No Foods per my last phone call:

nuts of any kind (including nut butters)
seeds of any kind (including seed butter, like Sunbutter)
no goat milk yogurt (but she CAN have goat's milk in place of dairy)
no tropical fruits (coconut, pineapple, mango, guava, etc...)
no berries (especially red ones, but no blue either)
no red, yellow, or blue food dyes
no oats
no cream of wheat or cream of rice hot cereal
no cinnamon
no Bisquick (it has a cottonseed oil in it - see no seeds above)
no GFCF chocolate chips (even though there's no dairy & technically no chocolate - it has evaporated cane juice, another name for sugar)
no pretzels

Excuse me, but HUH??

I am confident that Dr. Goldberg knows exactly why each and every thing is on this list and I trust him. I just can't figure out the common threads among these no foods.

But, not to only focus on the negative, here's some Yes Foods:

enriched white flour (that I can use for breading or baking)
meat of any kind (but look for grass fed or range fed rather than simply relying on organic)
popcorn (salted, no butter flavoring)
soy milk and soy milk yogurt
flour tortillas
plain potato chips
dark chocolate
Splenda or Stevia/Truvia
eggs (as long as there's no eczema, but again, from grass fed, free range chickens)
white rice (no brown)
potatoes (small servings)
pasta (again, small servings)
most vegetables
most ordinary fruits - apples, grapes, bananas, raisins, pears, oranges (if not affected by citrus)

Here's what I'm discovering as we're moving through this first week of diet implementation: mealtimes are not that difficult.  A meat, couple of vegetables, and a small serving of some starch.

It's the snacks that are killing me.  Kids like to snack.  Lily has two snack times, five days a week at school.  Fruit, popcorn, and chips will work a few times but it's not going to cut it all week.  The girl is going to want a cookie or a granola bar, for goodness sake.

So I'll be doing some experimenting over the next few weeks.  And I'm calling in some baking assistance, too.

Ryley has a friend, Morgan, who's going to culinary school in the fall and I'm hoping she'll help me out with trying to create some cookies, quick breads or muffins, and "granola" type bars that fit the diet.  Something made with white flour, dark chocolate, bananas, raisins, fake butter, and Stevia?  Or white flour, fake butter, apple chunks, and Splenda??

Ugh......

Help. Me. Now.

Wednesday, October 19, 2011

California Fun

After finishing up all the medical chores on Tuesday, we decided to spend Wednesday doing only fun stuff. 

I don't think I've mentioned this yet but my mom and dad were with us in California.


We rented bikes in Marina del Rey and rode them all the way to the Santa Monica pier.  It was a nice, flat, easy ride of about seven or eight miles.

Of course, Ryan might disagree with the easy part as he was towing an extra 45 pounds.


After the bike ride, we headed off to meet up with my cousin Kevin, his wife Rachel, and their adorable son, Owen.  They live in Los Angeles where Kevin is an attorney.

The Farmer's Market is right by their apartment so we met them there to catch up and eat.


Here's me and Owen, just hanging out.  


I told you he was adorable.

I would've liked to have held my sweet cousin a bit longer but I was busy making unsuccessful attempts at getting Lily to not spill large diet cokes or fling spaghetti to and fro.

My mom and dad got in a little "Owen Time", too.



Of course, Ryan had to take a turn since he doesn't get too many chances to hang out with baby boys around our house.


While at the Farmer's Market, there was one of those little photo boards where you stick your head through the holes.  Ryan held Lily up so she could pretend to be a scarecrow.  Can you tell just how thrilled she is?


For some reason, this picture just makes me laugh out loud.  You can totally tell by the look on her face that she has no idea why we're shoving her head through this hole.  I can just hear her thinking, "What. Ever."

We ended the day back at our little beach house, just in time for a beautiful sunset.


Doesn't this look so peaceful?  

Well, lest you think that lovely sunset just lulled everyone off to sleep like a lullaby, let me remind you that Ryan and I were sharing a bed with the Bird.  

Which meant we ended our day laying in the bed, wrestling a pre-schooler resembling a kick-boxing greased pig until she finally fell asleep.  

Just wanted to make sure you got the real picture.


Tuesday, October 18, 2011

Beach Bums

Since we didn't take a whole family vacation this past summer, we decided to take the big girls out of school and turn California into a little family get-away.

We stayed in a cute little house in Playa del Rey.  It was right on the sand and you could just walk off the back porch and be on the beach.

We all know how much Lily loves water and I thought she might like the sand, too.  But she wasn't quite sure what to make of it all.  

The first time we introduced her to the sand was on an evening walk, too cold for swimming.


In the middle of the sand and before you reach the ocean, there is a 22 mile bike path that runs along the shoreline.  Lily preferred walking on that to trudging through the sand.


Maybe it was the chilly temperature or maybe it was an attempt to avoid walking in the sand but she was feeling extra snuggly.





Ryley even got in on the cuddles.


I think Lily's overall feeling was that beach sand is some weird stuff.



Reagan, however, thinks that the beach is great.


Lily did play about 20 minutes in the ocean one warm afternoon but the water was freezing.  It felt like wading in ice water.  She loved the waves and would run back and forth, even sitting in the cold water. Then all of a sudden, she jumped up and headed back to the beach house, like she was done with that activity, realized she couldn't feel her legs anymore, and decided enough was enough.

It was a good trip but I don't think anyone in the Rush family wants to live on the beach.  We love Austin just fine, thank you.




Monday, October 17, 2011

An Attempt to Explain it All

Now that we're back home from California, I feel like my head is spinning.  There's lots of information circulating around in there and I just keep trying to latch onto a piece and figure out what to do with it.

And you know how the doctor will ask you a dozen times, "Do you have any questions at all?" and you say, "Nope.  Got it all here in my head and on my notepad".

And then you get home.  And can't remember a thing he said and your notes look like they're written in a foreign language.

That's kind of where I'm at right now.

I've already had three phone conversations with Dr. Goldberg's staff and am gearing up for another little chat today.  I feel certain these sweet and very patient ladies will be added to my Christmas card list before this is all over.

First things first - here is my very, very, very basic explanation of what Dr. Goldberg thinks is going on with Lily Bird:

Once Lily got past her first year of medical adventures (pyloric stenosis repair, open heart surgery, GERD, low platelets and kidney reflux), it seemed like things were settling down and she was overall a healthy baby.

But these unexplained viruses would pop up occasionally, just like most of you have experienced with your own kiddos.  Those kind that are never treated with meds, just allowed to run their course.

Once we started down the autism path, we had bloodwork done on the Bird on a fairly regular basis, it seemed.  The nutritionist wanted some, the allergist wanted some, her platelet count needed to be checked and on it went.

It seemed like anytime the Bird had any blood drawn, the doctors would always tell us it appeared she was fighting a virus but it was no big deal - these things resolve on their own, blah, blah, blah....  Coupled with the fact that she was experiencing absolutely no symptoms of being ill, we never thought about needing to pursue it.

Fast forward to California - Dr. Goldberg immediately points this out to us, citing about eight or nine times in Lily's medical history that this virus (or viruses) showed up.

Basically, he believes that Lily has a virus that has settled in the frontal lobe of her brain.  And by feeding Lily things like whole grains, dairy, chocolate, and sugar, I've been unintentionally feeding the virus right alongside my baby girl.

Now, before you get worried about me, I don't feel guilty about this.  Dr. Goldberg was actually quite complimentary of the interventions that Ryan and I have pursued for the Bird up to this point.  He reassured us that there was really no way we could've known to pursue the virus issue when even Lily's medical doctors and specialists weren't.

But I do have to tell you that I'm thinking of that virus in terms of that nasty, disgusting toenail fungus commercial on TV.  You know the one I'm talking about, right?  Click here if you don't and make sure you're not eating anything.  

Gross, right?

Well, I keep thinking that "brain virus" must be like that toenail fungus and I will do whatever it takes to remove that disgusting mass from my daughter's brain, you can rest assured.

So Lily is now taking an anti-viral three times a day.  We started it last Wednesday at the half dosage recommended for the first week.  Then this Wednesday, we'll bump it up to the full dosage.

Today, we'll begin the diet recommended by Dr. Goldberg.  It's quite interesting (or at least I think so) so I'll post about it later.

The anti-viral combined with the diet should take care of any of Lily's symptoms attributed to a virus on the brain.

There are other steps to follow, most of which I don't know about at this point.  I do know that if attacking this as a virus doesn't give us the results we're hoping for, there are other things Dr. Goldberg will do.  It's not like if it's not viral, he'll be stumped and send us on our merry way.

Plus, he took a boatload of blood so I'm betting something will show up in there that will give him even more information.

One other good thing - because of Lily's colorful medical history, Dr. Goldberg mentioned several times how much he'd really like to get a Neuro-SPECT (a very detailed picture of blood flow in the brain - think MRI times 1000) of Lily.  Evidently, not every child he sees has this procedure.  So I told him that we were in California for the week and if he wanted a SPECT, we were on board for it.  He got pretty excited and we were able to get that taken care of as well.

Sometimes, it pays to have a child like the Bird with an awesome medical history.  Every now and then, a doctor takes a special interest in your kid for "research" purposes.  Which means that your child maybe gets studied a bit more, gets looked at a bit more frequently, and is remembered by the doctor.  To which I say, "Research away, buddy!  Write papers about my kid.  Give lectures about my kid.  Do whatever it takes to make my kid your success story!"  What parent wouldn't do that?

Lastly, we do not have to travel to California on any kind of regular basis.  There is a set protocol for follow-up.  I have a form that I fill out weekly and fax or email to Dr. Goldberg.  Once a month, I speak with the office staff.  (or right now, once a day is more likely!)  And every two months, I have a phone appointment with the doc himself.  He sends me paperwork for any requested testing and I can have it done here in Austin to be sent to him.  It's all very regimented and meds are withheld if parents don't hold up  their end of the bargain.

I think that's enough information for today, what do you think?  I'll be back tomorrow and will fill you in on the diet stuff.  Plus, it wasn't all medical, all the time so I have some fun pictures from California to share with you, too.

Have a great Monday!

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:  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.

Thanks for checking in - enjoy your Wednesday!


Sunday, October 9, 2011

Goin' Back to Cali

Well.

We're off.

The big trip to California is upon us.

We're taking the Bird to see Dr. Michael Goldberg, a pediatrician specializing in the treatment of autism. I discovered him by reading his book, The Myth of Autism.  I'm looking forward to hearing more about his unique approach and hopefully, we'll be heading home with a new treatment plan and plenty of optimism.

I'll try to post some updates along the way this week, to let you know what's going on and what I think of everything.  Because, you know I'll have an opinion.  Or two....

But don't be surprised if I miss a day here and there this week.

If any of you out there are familiar with Dr. Goldberg and want to shoot me a comment, I'd be much obliged.

And, as always, prayers for the Bird are much appreciated!

P.S. Props to those of you who recognized a little LL Cool J in the title.

Friday, October 7, 2011

Thank You Mr. Steve Jobs

If you follow my blog somewhat regularly, you'll remember that I've mentioned Steve Jobs here a few times.

Mostly just hoping that he would adopt my family, shower us with Apple products, and allow us use of the private plane that I'm sure he owns.

But with his passing yesterday, I was reminded of what an impact he has had on my whole family.  I type blog posts (and other things) on my Mac computer.  I make phone calls, text, tweet and take lovely pictures on my iPhone.  I listen to my favorite music on my tiny iPod.  And last Christmas, both of my big girls each got their own iPads.

But I will be forever grateful for his impact on Lily Bird.  The iPad has opened a whole new world of discovery for my sweet girl.

Without the iPad...
  • how would we have ever know she could do this
  • how would she have discovered some of her favorite youtube videos like Rhino, It's a Big World, Baby and Disney Little Taps?  
  • how would we have endured lengthy car trips? 
  • how would Lily know how much fun it is to crawl totally under the covers and listen to music?
  • how would we be able to actually see with our own eyes just how smart our daughter is by watching her take to an electronic device so easily, like she was born to do so? 
But most of all, I appreciate Steve Jobs because he has given my nonverbal daughter a voice. 

Lily may never speak in a traditional manner, simply opening her mouth and using her words.

But because of Steve Jobs, I don't have to worry about Lily never being heard.

And for that, he has my eternal thanks.

Wednesday, October 5, 2011

Living in the Bubble... Or Not

I was meeting with my mothers of special needs kids group last month and we got to talking about  methods of not only educating our children but helping them find their "place" in life.

Back when I was teaching school (and before that), mainstreaming was the term you heard to describe special education in the schools.  Mainstreaming meant that special needs children were typically educated in special classrooms according to their level of ability with the goal being to prepare them for participation in the regular classroom one day.

Mainstreaming began to get a bad rap because it seemed that the concept implied that special needs learners must change in order to become "ready" or deserving of education in a regular classroom.

In education circles today, inclusion is the big thing.

Inclusion is simply a fancy term that means that special needs children spend most or all of their school day with non-disabled students - sitting right there in a regular classroom with typical peers.  The concept behind inclusion is every child has a right to participate and the school has a duty to accept the child.  It's all about full participation and the respect for social, civil, and educational rights of all students.

In a perfect world of inclusion, there would be no special schools or classrooms to separate students with disabilities from those students without disabilities.

It sounds lovely.  But I'm not sure that I'm fully on board with inclusion.  And here's why:

I went to school.  I taught school.  I come from a family of teachers.  I know kids.  And I'm just not sure that kids have respect for the social, civil, and educational rights of each other, let alone a kid with special needs.

Bottom line - kids can be flat out mean.  Sometimes without even trying or without knowing.

One of my blogger friends recently wrote how her daughter, who we'll call LM, has such a hard time approaching and speaking to peers.  LM recently managed to get up the courage to ask a little friend if she wanted to swing with her.  The friend's answer?  No.  Now I don't think that little girl was intentionally being mean.  She probably just didn't want to swing.  But that little friend had absolutely no idea how hard LM worked to get that out.  And then to be told no.  Devastating.

I know that all kids need to be taught respect and value of life and that we are all no better than anyone else, but I just don't think that forcing inclusion is the answer.

Here's what I mean:

Take a neighborhood, for example.

Now, I'll be honest, I'm not known as one of the friendliest people in my neighborhood.  I'll smile and wave and that kind of thing.  But if after visiting a few times while mowing the grass or whatever, I realize that my neighbor and I really have nothing in common, I'm not going to pursue a friendship.  Just because we happen to live next door to each other is not enough to build a relationship.  Right or wrong, that's how I feel.

I tend to look at the inclusive classroom as a "neighborhood".  Just putting these kids together in the same room does not mean that everyone is going to be accepting and nice and friendly.  Oh sure, there may be smiling and waving, but relationship?  I'm just not sure.

Maybe I'm not expressing enough confidence in today's typical kids.  I really do know lots of nice kids who are respectful and don't bully or make fun of others.

But I'll tell you this:  Lily is not a easy kid to play with.

I would imagine that most of her peers in a regular classroom would give her about two or three opportunities to participate in something with them, like playing tea party or painting, and then simply give up when they see she's not paying them any attention, won't talk to them (because she can't), or not playing the way they want her to.

Nor do I really expect them to keep trying.  I know that Lily needs to learn how to be a good playmate. How to take turns.  How to play appropriately.  And that a friend may not always want to play the same thing you do.  I know all this.

Of course, ideally, the teachers would be there to help guide this process along but we're talking about kiddos.  How many five year olds, even with the help of a teacher, are going to be patient enough to see a task through to its conclusion when it takes twice as long because Lily gets so distracted?  And teachers can't possibly see, hear, and do everything that needs to be done in an inclusive classroom.

And teenagers?  Wow.  I just don't know.  I haven't had to deal with this yet.  Can't even think about this yet.

So we're all trying to get special needs children included.  And I'm in agreement with that.  I certainly do not think that special needs children need to be sequestered away in some kind of special environment and have no contact with the outside world.

But at the same time, one of the moms in my groups shared something that stuck in my heart.

This particular mom has a child with severe epilepsy and he is also blind.  He recently informed his mother that he wants to attend Texas School for the Blind as a student in their daytime program.  A special school full of students just like him.  No typical kids around to serve as peer models.  No inclusion.  In fact, the polar opposite of inclusion.

Something that us parents also have mixed feelings about because we so long for our children to be an accepted member of society.

Can you feel my wishy-washiness?  Do you think I'm talking out of both sides of my mouth?  Inclusion? Separation? Acceptance? Rejection?  What's the answer??? I don't know.... I'm open to hearing your thoughts.

Anyway - this sweet mom shared a story that changed her mind about letting her child attend the Blind School.  She heard a 20-something year old man speak, who also happened to be blind.  He said that while he did have friends, he had always struggled along, trying so hard to prove that he could do everything that his peers could do, trying to find his place and be "included". But, after college, he ended up with a job at the Blind School, the very one my friend's son wants to attend.

And here's what this successful young man said:

"For the first time in my life, I felt like I had found the place where I belonged."

Isn't that what most of us want in life?  A place to belong?  A place where we feel like we're loved and accepted for who we are?  A place where we don't always feel like we have to prove that we belong there as much as anyone else?  A place where we don't always have to work so hard and we can "just be"?

I don't know the answers.  And I'm not going to get hung up on inclusion or mainstreaming or special schools or...

Because one day, years from now, Lily will find that place where she belongs.  And I'll be happy if she's happy.

But for now?

She belongs with me.

And her dad.

And Ryley and Reagan.

And that's the best kind of inclusion I can think of.







 

Tuesday, October 4, 2011

Name That Tune

Most of you know that I have a younger brother.  He's the one who uprooted his entire mostly Texas born and all Texas bred family and moved them to Virginia.

Sheesh.  What some people will do just for a good job so they can feed their family.

I'm not bitter or anything.

But like the saying goes, "You can take the boy out of Texas but you can't take Texas out of the boy". Or something like that.

So like a true Texas boy, my little brother is a big fan of country music.

And Merle Haggard, better known around these parts as, "The Hag" is one of his favorites.



So much so that on his wedding day, at the reception, he actually sang "Walkin' On The Fightin' Side of Me".

Only two problems with this:

  1. "Walkin' On The Fightin' Side of Me" is not a most requested wedding song.  In fact, I'm afraid some of the guests thought he was publicly threatening his new wife.
  2. My little brother is known for many things, but his singing voice is not one of them.
While I wouldn't call it a touching moment, it was definitely memorable.

For those of you unfamiliar with the song, click here to give it a listen.


So when Lily did something for the first time yesterday, I couldn't wait to share it with my little brother.

While riding home from the podiatrist visit yesterday, I heard "Fightin' Side" playing in the backseat. I turned around to see Lily, holding the iPad up to her ear where the speaker is, and humming along with The Hag.

I just know if Alan had been in the car, he would've had to wipe a tear from his eye.

You see, the music on Lily's iPad is made up of all the songs on the whole family's iTunes account.  So it makes for quite an eclectic playlist for a five year old.

It's not uncommon to hear a little Go-Go's followed by some Coldplay.  Then some Foster the People, Billy Joel, Taylor Swift, and INXS.  A bit of "Hotel California" followed by some "Man in the Mirror".   And maybe a little "YMCA" thrown in for good measure.

In fact, yesterday when they called us back for Lily's MRI, we walked to the room listening to "Dimelo" by Enrique Iglesias.  The Hispanic family we passed on the way in looked at us a little strangely.  (For those of you needing an interpreter, that's "Do You Know", also known as The Ping Pong Song.)

I've had several comments from Lily's therapists who say they don't mind when Lily earns a break and gets to use the iPad because they like her taste in music.

So let's talk about music today.

How about your kiddos?  What music is on their playlist?  Do they have a favorite artist or band?

And, of course, the obvious question, any other five year old Hag fans out there?
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