Saturday, July 19, 2014

Celtic Concert

I won tickets from Big 2 News on their Facebook page to the Celtic Concert at the Wagner Noel Theater here in Odessa.  I knew that my Dad loved Celtic music because he loves bagpipes so I invited him and my Mom to come with me.  Mike had to he couldn't go.  But Sebrena joined us.  The first hour, a man played Celtic music on two different types of guitars.  He was extremely talented..but I was praying that something exciting was going to happen. Sure enough, it did.  This group called The Rogues performed next.  They consist of two bagpipers and two percussionists.  They were amazing.  They played for a good hour.  My Dad was so cute cause he was knee slapping and tapping his foot.  I loved that I got to share this moment with him and my mom.  He even hugged me and kissed me on my head and said, "Thank you so much for inviting us. I had a great time." I was glad they came!  

Sebrena and I were crushing on this this guy named Jesse, who was one of the bagpipers.  He was so talented and extremely funny...not to mention easy on the eyes.  HA!  Well, Mom went up to him and asked if we could take a picture with him.  We get beside him and he leans over and I thought..Oh, he's just gonna give me a peck on the cheek..No..he kisses me on my cheek..but stays there for a good 20-30 seconds.  I was flattered cause he kissed my cheek instead of Sebrena's..HA (this is why she is looking at us the way she is.

Thursday, July 17, 2014

Sweet Summertime @ the Splash Pad

We invited Ethan, Lillian, and Jillery to join us for an afternoon at the Splash pad here in Odessa.  The kids had fun running a muck and we got to catch up. They are so cute together.

 Traci and her boys met us there, as well.

Wednesday, July 16, 2014

Weekly Randoms

My friend, Traci brought her boys (Koleton & Kian) over to play and visit with us.  They moved to Arizona almost a year ago and we have only seen them a couple of times since.  Zoee and the boys had fun playing and Traci and I caught up on life. I sure love all my special mommy friends I've made throughout this past few years.
 Mike took me to see Tammy and Deliver Us from Evil.  They were both pretty good shows.  I love anything with Melissa McCarthy (soooo hilarious) and I love Eric Bana, too.  He was in the exorcist show.
My goofy girl posing and goofing around.  So pretty.
She's so thankful that her Papaw sent her a subscription to High Five (Highlights) magazine.  She gets them each month and spends several days going through it over and over.
 I love this picture Zoee drew.  She is such an artist like her Daddy.  You can just tell the attitude this girl has.
My sweets!  Such a beautiful face

Sunday, July 13, 2014

Natalie's 3rd Birthday Party

Zoee's friend, Natalie, turned 3 and so she had a birdhouse painting party.  It was so cute and she's absolutely adorable!  We ate cupcakes, popcorn and pizza and the kids painted some birdhouses.  Zoee's turned out really cute.  We even bought some more birdhouses so we can paint them at home for a craft project.  It was a really fun party.

Friday, July 11, 2014

The Eye Chronicles

I have a retinologist I've been seeing in Lubbock for two months now. I really like him. He's been the only doctor out of 10 eye docs that has taken any interest in what is going on with my eye and made me feel like I'm not a crazy lunatic. I've seen him three times in the past two months..mostly for testing and, of course, exams.
He diagnosed me with something called Retinoschisis. The best description of what it's like is for instance if you take a two-ply piece of toilet paper and pull it apart..that's the same thing my retina is doing. I was diagnosed with this the first time I saw him.

Well, he told me something is not adding up though to where my schisis is and the part of vision loss I am reporting. He can't physically see what my complaint is, but he knows it's there (hard to explain)..hence the problem I've faced with other docs looking at me like I'm a lunatic.   So he went through all of my lab reports from the Mayo Clinc and all the other docs I've seen. He asked me if I had ever contracted West Nile because that's the only case he's seen this in that's even similar to mine. I told him..not that I know of..It could of been possible..because sometimes you have symptoms of West Nile and sometimes you don't.
And back when West Nile was really bad around here was when all of this started happened and I lost my vision. But I'll never know. :(

So he wanted me to see another specialist for a 2nd opinion. He works in the same group of docs from Dallas.
There is another specialist that comes to Lubbock once a month from Dallas so he made me an appointment with him.
This is who I've seen most recently.  Last Friday, in fact.
He looked in my eyes..went over all of my records and reports..and he said let me think about this for a minute.
He was stumped!  He said..what we have here is very rare
it's like when I look into your eye or any doctor looks into your cannot tell anything is wrong except for the retinoschisis. but when I do the testing (visual field testing, angiogram of my eye, etc.) it's showing a different thing..but it doesn't show what.
He asked me if I had been on any rare or strange diet..I said, no.
He asked if I had any tumors or masses in my body..not that I know of
He said..well we will have to look into all of this.
So he said there is another test that I need to get done..but it's only done in Dallas
it's called an ERG.
They deaden my eye and put an electrode on my eyeball. The electrodes measure the electrical activity of the retina in response to light. I also have to have another visual field test. This time one that is only done there, as well..cause it's an older machine that shows a broader scan of the field.
He said..after these should tell them if I have what is called AZOOR. AZOOR, called
Acute zonal occult outer retinopathy is a poorly-understood retinal disease characterized by sudden onset of photopsias (flashing lights) and visual field changes in an individual with a normal retinal exam. This disease affects women three times more frequently than men and most people affected are Caucasian, middle-aged, and myopic. A viral illness has preceded many of the reported cases. Initially, only one eye is involved, but the other eye may be affected months to years later.
If I don't have this..then he said they are going to look into me having an antibody disorder.
There is one called AIR, Autoimmune retinopathy. And then there is also the other called CAR, Cancer-Associated retinopathy.  I praying that if I do have the antibody part that it's not CAR.
They will be able to find this out by blood test..but it will take a while cause they have to send it off to the lab in Oregon, I think is where it was.
It's really rare so there is not a whole lot of info on any of it.
The AIR antibody they can treat with immunosupressant drugs.
Not sure about the CAR one.
The only thing with this ERG test too is that with me having the may debilitate the test..meaning not show correct results.  I'm bummed about that.
So I was really down about this.  My 35th birthday is coming up and all I can think about it how I do not want to end up blind at such an early age..let alone at any age. 
I've been dealing with this crap for three years.
I've seen 11 eye doctors for this ..been to Dallas, Fort Worth, Minnesota, Odessa, and now Lubbock doctors. This is the only set of doctors that are really interested in my case and have treated me like I'm not crazy for seeing what I see or don't see
I've had to be my own advocate and I'm glad I've stuck with it but it's been tiring--emotionally and physically draining.

I am going to Dallas on August 20th.he wanted me to go sooner but the ERG isn't given very often and I guess others are in line first to get it done. He arranged for me to do the ERG, get the ERG read by the doc that reads them, and also I am seeing a 3rd specialist who is extremely interested in rare cases of this antibody disorder. He said he's really smart and has done a lot of research about that gives me hope. I'm just praying they can figure it all out ..I can get a final correct diagnosis and we can figure out a treatment plan. They are worried because I've had all these other neurological issues etc going on throughout the years along with it.  I've been hanging in there. I'll post more about what happens in Dallas with an update.  My neurological issues haven't escaped me..wish they had..but I've definitely learned to manage them a whole lot better.  I still tremor at times but have grown use to it.  I just take my medication and go on about my day. I still have non-epileptic seizures..but not nearly as bad as they were.  Thank goodness cause this was the most debilitating part of it all. There is not much I can do but hand it over to God and entrust that he'll do what is best for me and my future. 

 Doctor prescribed glasses because what I see out in the sun is horrific.  Aren't they snazzy??
 This is a picture of the retinoschisis I have.
Here is another image of what it looks like from a different angle.  As you can tell, it's not a small place.  It's the complete bell-shaped area.  This is the blind spot I see in the peripheral area of my left eye.

Cow Appreciation Day @ Chick-fil-A

 Well, it's that time of year again where we need to do some cow appreciating.  HA!  If you dress up as a cow on this particular day you get a free meal from Chick-fil-A.  It's always entertaining seeing how everyone dresses.  We had just come back from Lubbock and ran home to throw on our cow attire and run up there.
 Mike's idea of dressing like a cow.  HA.
 Aren't we a fun-loving bunch?

Thursday, July 10, 2014

Dive-In Movie

 Our city puts on different types of Movies in the Park throughout summer.  They had one at one of our local water parks here called a Dive-in Movie and we had a blast.  It was a nice weekday reprieve.  We ate and swam.  Zoee loves this particular water park.  It's not too big and not too small.  Then they showed Wreck It Ralph.  It was a really cute movie.  Mike and I really enjoyed the movie, too.  We are having family fun this summer!

Tuesday, July 8, 2014

UTPB Stem Academy

Well, it's finally decided that Zoee will be attending the UTPB Stem Academy.  It was back and forth there for a while cause I was really trying to get her into Reagan Elementary, which is a school that excels in academics.  But, after much prayer and after some turmoil with Reagan and how Ector County does their magnet program rules...we will be starting a new venture at UTPB.  It's a brand new charter academy that has a different way of learning.  I'm excited to see where her education goes.
Here is the different kind of learning that will be done.  It's all explained.

Here's what the lottery looked like.   I'm glad she got chosen in the lottery.  She was picked number 10.  They only allow 44 students per grade level.  I'm praying that this will be the best decision.

Saturday, July 5, 2014

Monsters Inc. Movie in the Park

 Family fun night out with Movies in the Park..Monsters University.  They set up a huge screen in the middle of the park and we get to bring food/drinks and hang out for a night of fun.  This was our first one and Zoee really had a wonderful time.  She actually sat and watched the whole movie, even though she's seen it.  Love my family!
 Her monster face.  HA
 Glow Girl