Tuesday, August 21, 2012

College and Cars and Kindergarten... Oh My!

Changes in Lattitude, Changes in Attitude

And to keep the words of Jimmy Buffet going, "nothing remains quite the same."

I can hardly keep up with all the new beginnings going on around my house these days.  I didn't even have time to get my two posts done last week so instead of a peek at my special needs binder, you ended up getting a nice, long look at it.

First change?  My oldest is officially a Liberty University student now.

Ryley and I flew to Virginia on August 12th to get her all moved into the dorm.   This was quite the undertaking, starting with this (that's me and my mom below)...

and ending with this...

Cute and cozy, right?

Her dad understand not a bit of this.  When I told him I needed at least two full days in Virginia for moving in, he actually said, "What's there to do?  Unpack a suitcase, hang a poster, and meet the roommate.  Done!"

Ummmm.... really?

Let's just say it was quite the eye-opening experience for him and he won't question me when it's time to move Reagan to college.

So now my biggest baby girl is a mere 1,359 miles from me.  Thank goodness for unlimited texting, Skype, and FaceTime.  Ryan is going for a visit in September, Reagan is going in October, and then Ryley will come home for Thanksgiving break.  How many days until November???

Next change?  After much family discussion, Reagan has decided to make a change in her schooling as well.  Instead of going to the small private school she's gone to since sixth grade, she will be doing online courses through LU that offer dual credit, meaning you take one class and get both high school and college credit for it.  Saves time, not to mention a bunch of money because online classes are much cheaper than on campus resident tuition.  Ryley did this her senior year of high school and she's actually starting at Liberty as a sophomore with 33 hours of credit.  She can easily have her Bachelor's Degree in three years.

Of course, by choosing this option in her junior year of high school, Reagan could graduate high school a year early.  But if you think I'm sending her to Liberty even one day sooner than I have to, you better think again.

Reagan is also finishing up Driver's Ed and will hopefully soon be on the road, doing all my errands for me.

And finally, life just wouldn't be normal if there weren't some changes on the horizon for the Bird.  Kindergarten starts in a week and I couldn't be more excited.  And petrified.  Starting something new with Lily Bird is always so nerve-wracking for me.  No matter what happens, I'll be glad when The First Day is under our belts.

And just because all of this going on just isn't quite enough, we're starting a new medical journey with the Bird.  We are going to actively pursue an attempt to identify the exact virus (or viruses) present in Lily's body.  Armed with that information, we believe we can more accurately treat it and see better results in regards to her incredibly low white blood cell count.

I could try to explain how this is done but since I'm still learning myself, I'm going to give you a link to an incredibly fascinating article that got my mind thinking in this new direction.  I didn't even know something like this was possible and for those of you with children who developed "normally" and then regressed, it's definitely something worth looking into.  Click here to read the article.

We're starting right here in Austin with an infectious disease doctor who is actively on board with us and committed to helping us get to the bottom of this.  She will also send us anywhere we need to go if she thinks we are limited by what Austin has to offer.

Dr. Goldberg, our California doctor, is thrilled because he has been after us to stop treating Lily like a child with autism and to start demanding medical treatment for what he feels is her correct diagnosis - Neuro-Immune Deficiency Syndrome with Viral Encephalopathy.  It's only taken him a year to convince me that my daughter is physically sick and all the therapy in the world isn't going to correct that.  She needs medical treatment from medical doctors.

Sorry, Dr. G.  Sometimes, I'm a slow learner.

So.  You think that's enough "new beginnings" to last us a couple months?

Let's hope so.


  1. Wow, you have your hands full! Wishing you luck on the medical journey and hope you find answers. And wishing everyone well at school!

  2. Her room is so cute! So does this mean Reagan will be at home doing her courses online?

    I'm going to go read that article now. Praying for you and the docs to find some answers and get proper treatment soon!!!!

  3. Ryley looks adorable and so does her room! But back it up?! Your mom is in that picture with you?! I only see two girls who look like they should be at college together!! Reagan is getting ready to drive- that's a big one. I promised myself that Toots - should he get to drive- will only be allowed to drive a tank- lol- that will keep him safe, maybe!

    So glad you are getting the diagnosis- this sounds so promising! I will be saying my prayers too. Hope all goes well at kindergarten!! xoxo

  4. Wow - you do have a lot on you plate right now! Glad you got Ryley settled in...her room looks great and kudos to you and your mom! Praying for Lily Bird's first day of school as well as the new journey medically you and Ryan will be seeking. How exciting to know there are answers out there for you and treatment for The Bird!

  5. Impressive transformation in the dorm room!! So excited for Miss Lily and all the wonderful opportunities on her horizon. She's lucky to have such awesome advocates as her parents.

  6. What a week and a ton of changes! Of course Ryan would not understand how to decorate a dorm(men):) God Bless You as you continue on your medical journey

  7. Wow! That's a lot of change! Love the dorm...talk about efficiency with style! I'm intrigued with the medical intervention for little bird. I hope it all goes well!

  8. Love all the updates on the girls. The dorm room looks great! Praying that they all have a great year at their new schools!

  9. Wow... that IS a lot! Glad you're keeping yourself busy *wink, wink*

    I'm thinking of you as you get Lily ready for that first day of school -- you can do this, mama!

  10. I am very fascinated by this new idea of Neuro-Immune Deficiency Syndrome with Viral Encephalopathy. It will be exciting for us all to hear what they may find. Good luck!!!


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