The Official Diagnosis...

It only took 32 years of waiting for me to be diagnosed with:
Autosomal Recessive Ectopia Lentis et Pupillae! 

That's what the geneticists call it, but I will always call it:
Googly Eye Disease!

Let's face it, I'm special and I now have a crazy random label to slime people with. Yeah, I said slime. I miss you Double Dare and You Can't Do That on Television!

You are all so jealous. Don't even try to hide it. You want these jello jiggly eyes and disconnected connective tissue so bad!!!!

So here's the lowdown.

John and I went to the geneticist again to hear about what the amazingly brilliant and most likely glasses-clad geniuses in Oregon found in my one vial of blood.

Source:http://jurassicpark.wikia.com/wiki/Mr._DNA




"DNA's in your blood!" (Jurassic Park reference)

This time they tested the AdamTSL4 gene and for this appointment we got to hear the results. Here's the post about the last appointment where I boggle their mind with questions...
The testing -which by the way this particular gene was discovered DISCOVERED only 2 years ago- showed that I had a mutation (small deletion) in the coding of it and therefore has caused my proteins that deal mainly with the zonules (those guys that hold your ocular lenses in place) to be all jank.

Some where along the genetics line, things got messed up. And I love the part where sweet Tracy said, "Your body just had to do the best it could." She is so sweet!

And it did, I mean I didn't go blind in my left eye until college! Then the right was like 9 years after that! Amazing. Thank you Lord. 

Hearing her say "tested positive" sounded strangely good. I've never heard those words before. It was kinda like finding the end of the rainbow for me. So many years. 

It looks like it may affect the rest of my joints/connective tissue as well. But of all the people tested, I think it's under 20?, I'm the only one showing those results so far. And yes, my hip still hurts every now and then and now my joints are very "worn out feeling" when I sit and change positions.

BUT THANK GOD I CAN STILL WALK!!!! 2010 really sucked.

So what does this mean?
1. Leelah is a carrier, bless her heart.
2. She may or may not be affected. She's got a 25% chance. Which reminds me, I need to make her another eye appt! But she looks like she is doing absolutely fine. By her age, I had cataracts and my nose was against the TV to see.
3. Leelah will pass it on to her children and they might be affected depending on the future hubby/daddy. So pick him good God!!!
4. I learned things.
5. My cardiovascular system, a common concern with ELEP peeps, is ruled out to be unaffected at this point.

And we have a fancy name to this way that God made me.

Eye update: Well you know Left Eye is always dancing to 'Wobble' like it's at a wedding reception. Right eye, Champion, is doing great.
To those peeps that tell me they are still praying for my eyes, I love you. Thanks so much for that. You are part of my miracle!

And I have new glasses with better lenses!

I do apologize for my Ice-Truckers hair do.

Psurgery Psyche!

Went on down to Baylor Eye Clinic for my 9:00 appt with the husby who just loves to drive Miss Crazy around the town, and saw Dr. #1. Dr. #1 proceeded to really be concerned with my shakylaky vision in my left eye, so much so that she didn't want to dilate them (I have crazy tiny pupils so they can't really see all up in there without dilation) because she was afraid the lens would further drop. She feels that Super 8 (Left Eye) might need surgery. I mean I dropped 2 lines of vision since August.

So she worked us in to see my surgeon to see what his opinion was/is.

The husby and I were prepared for this like Doomsday Preppers prepared, and we had our Kindle Fire and John left and got lunch (Chipotle- when will I learn to stop getting the chicken there. Stop it Gillian!) so when I did get in and see him at 1:20, it wasn't like a wait at all. In fact, I got so comfortable there that I considered taking my shoes off.

 Have I mentioned I have stinkless feet? It's truth. And it's amazing in the real sense of the word "amazing." If I ever ran a marathon- wait, I need to stop and insanely cackle right now- okay, I'm back, sigh, but if I ever did- wait, hahahahahfhfahfahsdfhfhahahahahahh!!!!- would my feet smell?

I guess we will never know.

Dude, I can't run long distances! What part of googly eyes don't you understand!!!!!!!!!!!!!!! I'm not gonna run an eyeball out and make this crap elective!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 Where was I?

Oh yeah, so we were holed or is it wholed? up in BEC. I get called in my Dr. #2, this time a "Fellow."

Can a doctor type person explain that to me please? What a Fellow is?

The Fellow gets all kinds of confused, but in an intelligent way. He almost seemed to rebuke me. I give in and begin the Eye Timeline to fill him in. I could say, "Fellow, look at the vast scrolls- I mean chart." But I don't. He digests it. Then takes a look. Proceeds to talk about surgery options that Dr. Hammy will possibly consider. I know full well that no, he probably won't.

We get in to see Dr. Hammy, who I haven't seen since January- Praise Jesus!- and he takes a good look.

We are now friends, he and I and the husby. And I will forever be his patient patient.

He says no go for surgery. So I ask my usual questions:

"But when will it drop out?" (The Lens).
Dr. H: "You could be hit by a meteor. Or the Earth could swallow you up."
Me: "But I mean, is it close and what will you do then?"
Dr. H: "Stay away from you or get a shovel."
(For his sarcasm alone, I'm going to remain a patient you see.)
He continues: "It could slip in 3 weeks, then we go in and take care of it."
Me; "Is there something I can..."
Dr. H: "There is nothing you can or shouldn't do to help with it. Have a Merry Christmas!"

We prayed and so many others did. This was God's answer and His timing and we have to trust that it's not the right time.

So I adjust with the shakiness and decreased vision. This is where the mental kicks in. The patient patient I need to be that I pray I can be and I increase the zoom to 200% on everything. I start the winding down earlier and go out less.

Kind of like when I was in Kindergarten and I NEVER wanted to nap. So much that I led Nap Revolts amongst the class.

God is the Teacher who is saying, "Now, Gillian you know you need to rest."

Thank you Lord for my jello vision. Please help me to rest in You.

Thanks for your prayers beloveds. 

Googly Eye Strikes Back

First and most importantly, the commercials are total cheese BUT Gevalia is my new fave coffee.

Period. I'm drinking the house blend and I can't wait to breathe my new coffee breath on people with complete disregard. What? John and I stumbled upon this goodness because it was served at his Office Christmas Party, or as he likes to call it: "Meet the Wives Night." I'm all like, "Whatever homey, you know there are lady engineers and drafters! What about meet the Spouses night!?"
His does have a better ring to it. I love my husband.

What I really should call it, "Asphyxiate myself with spanx and try not to fall down and break a cheese plate Night!"

Second. My left eye (Super 8 as in 8 surgeries (({still bragging}))) is a wiggle-waggin'. Drats!

Source

So yep, heading down to the med center tomorrow morning with the Johnicles. With joy I might add because it's really a hop, skip and a toll road away from us and that makes me blessed. Finally, we can roll up in there with electronic devices. No more attempting to crochet with one eye ball for 6 hrs. for this chick!
I'm "seeing" an associate of my top-dog surgeon. I don't know what that means. I'm grateful that I was able to be worked in on account of my specialness. Would y'all please pray for her sweet heart? Lord knows I am going to freak her out and I just don't want her to run out screaming.... Although, I know she has seen worse like forks in eyesocket worse, but maybe not seen as rare... I'm totally an eye-disease snob at this point.

What am I talking about?
Here's the skinny.
I have 2 eyeballs.
Inside your eyeballs are your natural lenses which help you focus and um, see and stuff.
 But you see, on account of the Autosomal Isolated Recessive Ectopia Lentis et Pupillae  or "Googly Eyes Syndrome" as I refer to it as, my lenses are jank.

Thanks Star Jones on Celebrity Apprentice, circa Spring, for giving me a new adjective to describe my mess.

Jank, meaning they are not held properly in place by my stupid, lame zonules (teeny, tiny lens holder uppers) and thus, ergo, henceforth, my lenses dislocate or subluxate or wiggle. Thus causing several "big gun" surgeries to sew synthetic lenses in place and pray that it doesn't drop and doesn't cause infection. Both of which have happened and praise Jesus, I'm still seeing!

Etcetera, etcetera....
Due to the current jankness or as my 6 yr old says "junked down"ness of my lenses (which are now synthetic after 10 operations), my vision is distorted and shakes every time I turn my eyeball.

So the left eye is the jello-jiggler shakin' it.
My right eye is now twitching all the time because it apparently cannot cope with the stress. WEAK I yell at it!!!!

Hey, zonules, I'm sorry I called you lame. You held my natural lenses in place for 22-28 years. Way more than the original docs ever said you would.
 
I'm so very thankful for many things in this situation.
1. That I have Jesus and He has already figured this out for me.
2. My husband takes time off of work to shuttle me and make me laugh and encourage me.
3. I'm still driving and photographing.
4. That I even have vision period!
5. That I'm so close to the best eye docs in the world!
5.5. That I've only been 3 times this whole year to the eye doctor!!!!! 
6. That I found some awesome coffee.

I will post an update and I do appreciate your prayers. My guess is they will hold off on surgery, but just check me over.

My 3 fave verses that I treasure in times of uncertainty with my vision or health:
"But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up."- Daniel 3:18

"Though I have fallen, I will rise. Though I sit in darkness, the LORD will be my light."- Micah 7:8

"He will have no fear of bad news; his heart is steadfast, trusting in the LORD."- Psalm 112:7

Here we go again...

Dudes.
So.
Blurgh.
Let me start over.
"They will have no fear of bad news; their hearts are steadfast, trusting in the LORD." Psalm 112:7.
No fear of bad news.
Steadfast.
Sigh out loud and type...
For a little while I've been seeing some odd things in the left eye. I thought nothing of it, because hey I've had 10 eye surgeries right? I'm good now. Apparently, not. On Friday lefty started up with some pain. For real. It took me a little while to realize what was happening that the left side of my face, no wait, my left eye hurts AND it's seeing weird- better call BAYLOR EYE CLINIC STAT!
So I did and was immediately seen by a retina doc and will always be seen by one because "someone like you" that would be me has to have that go down everytime. Let's face it, your retinas are important. If stuff goes down with them, you have problems!!! Thankfully, they checked out. Thank you Jesus. No endopthalmitis again. Phew. That was scary.
HOWEVER.
The lens implant is acting up and has "shifted thus causing chafing of my iris" ergo, OUCH!!!!!!!!
Dr. Hamill, the "Big Guns" surgeon was unable to see me due to an emergency surgery he had to do- always need to pray for those people! And I was planning on going to see Dr. Lewis, the "flubber smart" detective doc on Monday anyway so now I get to go see both of them Monday morning. At least I was allowed to wait right?
Will post more on what is to come. Really hoping it won't require another surgery- it'd be the full enchilada knock me out kind. But also trusting in the Lord and what He has planned. Thank you for your prayers.

Seeing Clearly- Praise!!!

Can I share some good news with you?
For many years (really since I was born) I have had low vision in both eyes, no sight in either eye, experiencing pain in one eye daily, retina damage, severe infection, etc.
Today after years of opth visits, 9 eye surgeries, and many glasses prescription changes- including the last one we picked up at eye masters yesterday--
I can see clearly with glasses out of both eyes and my vision is stable.
PRAISE THE LORD!!!
Honestly, I never thought I'd be able to see out of both eyes at the same time clearly. Thank you for praying me through this journey. Thank you for your dependability as prayer warriors in being there for all the updates and prayer requests.
There will be future lens surgeries as I have been informed the lenses will not hold- they should for 5-10 years. They may wiggle out of place due to my condition sooner than that as they have in the past. I still struggle with depth and peripheral vision loss.
But I am so thankful for today. It was beyond shocking to pick up my glasses yesterday- a full week and a half early from when they said- and need absolutely no adjusting to them. I felt so normal for once! It was plum weird, but I could get used to it!
Now on to a chiropractic appt to help me start walking again today. And next month, Mayo Clinic for the diagnosis- which John and I are claiming as a vacation!
Please know, God is so good! He has helped me see so many blessings. Vision or not!
"Though I sit in darkness, the Lord will be my light."- Micah 7:8
Love you all dearly.

The Eyes have it!

Or should I say, have HAD it!

The newest development in my eyes-saga is that the right eye is rapidly worsening. We all knew this day would come when the cataract would close in and the lens would dislocate further, but its happening sooner than I thought. Hello Gillian ever heard of God's timing?!!

Last week we got a BOGO deal at the Baylor Eye Clinic- 2 docs for the price of one. Dr. Yeu dropped the d-bomb in front of Leelah after I told her my right eye is drifting and acting all sorts of cruddy. She then apologized and left for a long time to bring in Dr. Hamill. Then I just straight up got moved back to Dr. Hamill- just like that. Tossed around like a salad. Dr. Hamill then saw me (quicker than ever I might add!) and he got puzzled too. He was acting a lot more serious then usual which disturbed and relieved me all at once. Then they decided they would have to all 3 meet with Dr. Lewis (genius doc) to have "a conversation about where to go next with my eyes." I took this as a blessing that I have a team working on it and went home to wait for a call back from Dr. H. I got it yesterday morning.

"SO we have all talked and have a gameplan." Great! Key word I enjoy hearing: "gameplan" was used! He said they are leaving the left eye (sucksworth) alone as they feel it has gotten to as good as it can get corrected 20-35/40 on with glasses (which I'm still waiting on to come in). Okay. I am happy with leaving the left eye alone. Then he said, we need to operate on the right eye.

And so it begins...

My right eye (champion) is really acting up because surprise! I have freakish small pupils - pinhead sized - and if anything, i.e. cataract, comes in the way then my vision goes south asap. Which is happening. Which concerns me somewhat. Thank the Lord for the Lord and His Word! I'm clinging and could always cling more to it. So I go to see Dr. Hamill as Dr. Yeu has dumped me - well not really- back into his charge. I feel good about this b/c he is the guy that did the first 5 surgeries including the big guns one that is coming up for the right eye. I see him on July 20th to set up the surgery date for the right- the lensectomy and the lens implant. This is where he will basically sew a new lens in place and you better believe me when I type- with teeth gritting- IT WILL BE ANCHORED IN PLACE. We're not playin' that game of loosey-goosey lens. I've already brought it up to all 3 docs. I will have to have the vitreous doc on hand during the surgery in case anything detaches- retina- for emergency fixing.

I'm thinking this "big gun" surgery will go down in August. And hopefully not anytime sooner as July is and will always be full every year from now on. If it's anything like the left eye's it will be brutal to recover from, but hey at least it's not my first rodeo but 9th! Plus, the medical margarita- y'all know I'm a fan! I hope to not see everything in yellow and upside down for 2 wks, but it's possible to be like that again. Also prayers for no endopthalmitis again.... Eeehhh... I will also be patch-fabulous for a good while I imagine. THank God for my bedazzled patch! It's the little things.

My EYE-Bad

Trying my best to make it sound like IPad. Hey if you have to explain it doesn't it make it more funny? No? Are you sure? Yeah, you're right.

Last week we saw the fabulous Dr. Lewis- freaky deaky eye doc- who hung out with us until past 5 talkin' bout cataracts and fancy gold medallions. Well, just cataracts and loose lenses.

I learned that these next couple of months for me will be challenging vision-wise. Which is fun! Dr. L said that "unfortunately" I must wait until the left eye (sucksworth) is stabilized and that I "will not like it at all". I asked him if that's even possible to stabilize. He said he thinks I will begin my right eye surgeries at the end of the summer since the cataract in the right (champion) is really moving in (I've dropped 2 sight lines in less than a month) and that the lens is becoming even more dislocated in the right. The left still has some "capsule" on it that needs to peel back more and some blood droplets in that vision.

It's so funny because yesterday at church, I really felt as if God was giving me practice yesterday at talking about a physical problem that in all honesty may never be resolved and staying positive. By the 4th person I was telling I think I finally got it right. I'm okay. Yeah, my eyes will have surgeries from here on out. Not one surgery will fix everything. Yeah, it's going to get pretty darn blurry here in the right eye soon. Yeah I've got a 3 in thick file at the Baylor Eye Clinic. You know what, so what. I've been healed already. Spiritually I'm healed. So with that knowledge and with HIs grace, what do I have to complain about? Complaints are so 2008. Again, I'm so thankful that we are even able to meet with doctors at all about this. There are people that do not have that luxury.

Today I meet with Dr. Yeu(know it)-lens surgeon- and she will hopefully give me a timeline of what to expect. If that is God's timing, plan, will, etc. We are off to the town of Fort Worth. I should say, 'city'. My college apt-mate is getting hitched!!!! If you knew her, hitched is not a pairing with her coolness. She is one of the coolest. I'm praying I won't dork out as a bridesmaid. But I'm excited about seeing her and seeing my sidemate too, Ashley! John and I are pumped about having a vaca together. Leelah is staying with his parents in Huntsville. I don't know if they allow that kind of fierce dramattitude there. We'll see...

It worked!

Writing with my left eye's newfound vision! Praise the Lord! So had the procedure yesterday complete with a crazy-almost-torture-y contact suction cup stuck to the eye to keep it from blinking, which caused major pain afterwards. Once I got the refresh gel- best drops ever- it was feeling better. Then at around 8:00 I went down the hall and noticed how bright the lights in our home were. I asked John if he had switched lightbulbs and he said no. Then I went back into our bedroom, again major brightness everywhere. That's when I realized- HEY MY LEFT EYE IS WORKING! Or at least it's clear!!!! Whoop! John finally understood why I kept saying how dark our home was and why I constantly opened up the blinds in every room to let the light in. Now I'm all fancylike with one clear eye. I really do not know what I will do when both of the eyes are completely fixed. Probably cry, shoot I'm crying now!

It's just amazing. It's comparable to adjusting the brightness and contrast on your computer monitor. THat's the best way I can describe it. Now all I have to do is get my prescription changed again and then I can really start seeing out with it. I return to Dr. Yeu(know it) on the 14th. So thankful! Boy was I a hot mess prior to the surgery though... Yikes. Major praying sesh in waiting room.

Now I just got to get the right eye's cataract and lens fixed, but I know God's timing will be best for that.

The Ocho... Eye surgery tomorrow...

Yep you read that right!

Yesterday we saw the always-glam Dr. Yeu(know it!) for my post-YAG visit. In all her experience of doctorness she's never seen a wrapper/capsule/membrane grow so fast over an eye. One week since I was there, in fact.

What is a YAG laser?
That Kind of explains it- remember I've got cataracts and Ectopia Lentis et Pupillae and my membranes grow SUPER fast not years but 1 week!

If you recall, and you shouldn't unless you're John, I had my 7th left eye surgery, 3rd YAG laser last Tuesday to remove this thing that my eye likes to grow everytime it gets surgery to repair/reposition the lens (which is quite often). This wrapper causes pain and fogged over vision similar to looking through vaseline. While the visit was supposed to be rejoiceful in hopes the YAG last week, which feels like big surgery for the rest of the day, was supposed to have cleared away the membrane; it was not successful because my eye grew ANOTHER wrapper on the back part of itself.

So tomorrow I go in at 3:30, get lasered around 4ish to hopefully have this be the last step in a long, long road. I am so thankful for all of these attempts to get clear vision. I know the Lord is using this in ways I cannot imagine! Whether it's Leelah watching how to handle setbacks and physical limitations or John practicing his God-given gift of dependability, we are thankful for these trials building perserverance. They even jokingly asked me to work there with them as a tech since we go every week or so. At least I've gotten some new friends.

Hopefully I will have good news to report! Oh wait, we already have good news. How about clear news!?

Thanks again for your prayers. May God be with you friends.

Number 7 procedure

Thanks so much for your prayers for my eye YAG surgery today. I'm just now regaining the mobility of my eye, which is good. It was as usual very sore afterwards, but there's nothing like 4 motrin to help stop that and start a nap!
The vision is still incredibly blurred. Perhaps it will get better tomorrow or not. Whatever the case, God has me at peace and I'm thankful for any attempt at all to regain vision.

Inspiration!

What an inspiration! I know I'm late on the bandwagon as I am just now learning about her, but I can't wait to learn more. Especially from a Christian who struggles with seeing, but doesn't struggle with SEEING. If you know what I mean.

The other night John and I watched the Blind Side. Again, late on the bandwagon! But it was so great. I love me an underdog, rags to riches story. They're my favorite really. I don't know how it came up but I was so upset afterwards. I felt so limited and yet so unlimited all at once. I was experiencing spiritual warfare right there in my bedroom. I just got all out of sorts. Poor John. I'm one of those "crumpler" people that are a teensy bit sensitive (sarcastic too...). We started talking about adoption. "But John, we can do it!" I can! Does the Lord want us to adopt? Or is my answer no because of my vision. It is extremely difficult to go to playgrounds without John or close friends to see what and where Leelah goes. That is just one particular example.
How could I keep up with two? Is the enemy putting this in my head or common sense from the Lord?
Sounds like I need to pray more and listen to the Lord. Isn't that the answer for everything? Well, it should be. If the Lord wants us to have more children then our only option is adoption and then it would have to be private or seriously a basket/someone standing (age range doesn't matter) on a door.

But I just had this nagging in my heart. People with physical limitations, in some ways we almost see more clearly than anyone else does.
Excuse me, there is this nit-wit who buzzes his over-loud motorcycle every morning at 7:21 am on our street- today it's at 7:27- he's late!!! ARRRGHHHH that cannot be streetlegal. Where was I?
I mean think about it. When you have cancer or have a family member that does, you really see a lot. You see compassion. You see the Lord in all sorts of ways and people. You see what people think and do when the earthly end is near for them or someone they love.
What have I seen? So many things.
What is pressing most now at my heart to say is that I've seen the Jesus in people. Being a person with low-vision and having a dad graduate to Heaven has helped me do that. Maybe I wouldn't have seen Jesus in people and things as clearly as I did with better vision. It's helped me learned to rest, because honestly I have to. It's helped me learn to take help from others. Did you know not taking help from people is actually not letting the helpers be blessed? You wouldn't want that would you? And boy, are we blessed by it too~! Thank you blessing friends- you are precious to me!
I've learned that when you need rides for a lot of situations, you can learn all about someone simply from being chaffeured. My friends probably think I'm writing a book when they drive me around!
I've learned to be kind, or try to, to every single person. The techs, the nurses, the docs, the receptionists, the waiting room friends, the parking attendant lady, the cleaning crew, etc. Why not? If they can't see someone going through a hardship with God on their side, then what am I doing with this?
I've also learned to not be easily offended. So many people just don't know what to say or do. We, people with the vision, should go easy on them!
Thank you Lord, for your (pro)vision!

A verse that is my friend, "Though I sit in darkness, the Lord will be my light."- Micah 7-8.
p.s. eye procedure number 7 is happening MOnday- please pray for restored vision in the left eye if that is the Lord's will and my acceptance of whatever happens! Thank you!

Eye Told You Sew!

DUDES. SO the other day, Monday to be exact, I had gotten a little perturbed at my left eyeball- aka "drama queen". It had been hurting. Now you know it just had the killer-painful op about a month ago, so I was beginning to get a little nervous thinking that it might be infected. I've been down that road before and let me tell you- yikes, stripes, Fruit Stripes gum- it's not fun.

So I called the doc at 2ish. Can you be in at 4:15? Yep. So I called the husb, "Hey John gotta run me down to the BEC- Baylor Eye Clinic- again.

Mind you, I had places to be- it was Moms @ Second's last meeting which I really didn't want to miss. So we hightailed it only to wait. Not 3 -7 hrs as in past with Dr. Hamill, but for about an hr. Thank goodness for John's blackberry - Leelah totally disney channeled up that thing.

Dr. Yeu comes in after they checked my vision. She then checks it out and says she'll have to remove the suture. What the what what? When is that going to happen I nervous-laugh-ask- "now". Then I asked, "how?" and she said "with a needle and tweezers." Oh okay, no problem. WHAT!>!>!>!?!?!?

Wait. Here's what I saying to my self, "Self, she's gotta be tired. It's 5:40. And now she's going to poke my eye with a needle and then tweeze out a stitch?"

So I keep stalling her and making stupid jokes about the board game Operation. It wasn't my best set, I was tired and in pain. But she gets out the needle and I to refer to an old cheerleading term, "squeezed the penny" and held still like a well person getting their eyeball sewn! I looked left like you wouldn't believe. It was gross y'all. But Dr. Y is a champ. Pulled the sucker out like seam-ripping. It didn't feel great, but it was numbed.

No joke, my m@S mtg was across town at 6:40. John dropped me off at the church at 6:39. I had totally had an eye suture removed in less than an hr all freaky-deaky like and managed to go to my meeting.

Tales from the opthamologist office. Gotta love it right? Oh and let me tell you, last time we were there John saw a bottle of "Eye lid cleanser". No one should have to see that.

YAG laser got moved up to the 24th. Still seeing blood vision- gross and now the membrane is making it foggy. Will continue to keep on keeping on!

Sock Hop and a Post, Post Op

What joy!!! Does it get any better than a Dads and Dolls Sock Hop? Our church put on this precious event last Friday for all the little girls 3 - 6 yrs old and their daddies. It was to-die-for cute! Ice cream served by classic old-timey fountain hops, glitter time with the older girls, hula hoops, dancing, and fun! Plus, they got to take a pic next to a pink Cadillac- how cool is that? And make bottlecap necklaces and the cutest little message board. I was in tears of joy when she came home (moms not allowed-i.e. pedicure time at home!) and she was non-stop chattering about the fun she had with her dad and of course her sweet buddy in crime, Rebecca! In case you were not wondering, I made her bubble-gum poodle skirt. I had to get some color on there since she picked out dark blue. I shouldn't have let her choose the color. So I made a bubble gum applique with polka dot fabric and wonder under and felt. All with one eye mind you!


That Friday afternoon we had to jet home from the post,post op asap- well after gorgeing ourselves at the Chocolate Bar on University. OH MAMA was that goodness!!! We all 3 got ice cream. So yeah, Leelah had 2 ice cream servings in one day. Yikes.
The post, post op went well.
Dr. Yeu (know it) was overjoyed at how stable it looked on her end. Now me, I'm still not seeing clearly out of it- stupid half drop of blood dissolve already! Get this, Dr. Hamill- doc I switched from- came in and admitted to John, Leelah and I how he was wrong! Whoa. Awkward. I just sat there thinking WWJD? So I just was quiet. But that was nice of him to concede to the lady! YOU GO GIRL!
So procedure number 7 has been set- May 14 next YAG laser. Then, clarity we pray. Oh man would that be nice. I have to admit, sadly I did see the left eye wiggle a little yesterday. Drats! Hoping that was just the blood droplet messing with things and not the lens dropping yet again. I think God gave me googly eyes by mistake. Like the craft ones that jiggle. "Here, use these for her eyes from Gabriel's art project. He won't miss them."

Eye'm Tired

Thank you so much for your treasured prayers! They were felt this past Thursday as I underwent eye surgery no. 6! Hey you've got to be proud, right? THe prayers were needed and felt, particularly the hungryness issue. I didn't feel that hungry prior.

The doc said the surgery went really well. My sight doesn't show it at this point as a drop of blood has hindered me from seeing anything. It's all freaky-deaky-microscopic looking at this point. The doc said it did need to be stabilized since all my zonules (little strings holding lens in place) had weakened, thus the wobbling. So she sutured in another anchoring point this time on the right side of the lens in the left eye.

When I woke up I was a bear. I cried and cried when I got home. IT WAS PAINFUL TO THE EXTREME. The suture was apparently sticking out and not buried far enough. So imagine that "something in my eye" feeling magnified by a 1000. Ouch. But I couldn't touch it or remove the patch until Friday. When I saw the doc on Friday for the post op she get this- clipped the suture on top of my eyeball with a pair of little sharp scissors while I was sitting in the chair!!!!?!?!!!! Whoa. She must be killer good at the MB game of Operation. For real. I was praying silently- PLEASE DON'T MOVE. PLEASE DON'T MOVE, SNEEZE OR BLINK. over and over again. IT worked! That drastically reduced the pain level- whoop!

Today: still seeing blood vision, but it has improved as now I can see shapes and light.
So I go in for next appt this Friday. The blood should be gone in 2-3 wks. Yay.

Thankful that it is over... For now. I'm struggling with infection fears since the vision is not clear. Please pray I would not "give way to fear". Thank you!

Oh and good news we got to leave for a sweet vacay to New Orleans with the Vining Family. It was some good food and fun!! Pics to come...

Number 6 Surgery...

Tomorrow!!! Eek gads! Not really. I'm cool. It's cool. I mean, come on, it's my 6th surgery in that eye alone. Like how I'm keeping track?

Thanks in advance for your prayers. Please pray for no infection (do NOT want this again) and that if it's God's will- this lens stabilization will return that awesome, glorious vision I had for a month. Oh wouldn't that be nice! Since Righty is pooping out on me. So glad God has steered me in this direction tomorrow with my fantastic new surgeon, Dr. Yeu. Should this not work, please pray for me to be accepting and content in every situation. Oh and did I mention the surgery is at 12:15- or at least that's when I go into get prepped! Yeah. I'm going to be one hungry mama by then.

See you later wobbly vision!

Good News!

This week has been all about hope for our family. Firstly, hope in the Lord as we celebrate his resurrection. I have to say I adore this truth. Easter is my favorite holiday to be celebrated year-round. A time of hope. I love that I get to share the truth with Leelah about our Savior being alive! Talk about a good-ending!?!?! I'm so thankful Leelah knows this story as best as a 3.5 yr old can. The joys of teaching your kids all about Jesus everyday. I must admit, with my background I am having to learn along with Leelah most times and she teaches me too! And that's okay.

John and I had a wonderful trip to meet my new eye doc Dr. Yeu (know it!) at Baylor Eye Clinic this week. She is so great. She's a Christian. She's caring. Sympathetic. Kind. And a whole mess of smart!! She took a look at the ol' googly eyes and determined (after bringing in a big-wig in a bowtie) that my left will benefit from one (two with inevitable YAG laser) more surgery to stablize the eye - meaning no more jello vision and hold on to your hat "have my quality of life restored"! PRAISE THE LORD!!!! And that when my left eye gets stabilized- on April 15th surgery- after that she'll take out the right eye lens, which is now loosening and cataract growing more and implant a new one, - and that wait, wait, "I won't have to go through as much trouble as I did with the left because we have a gameplan." WHAT!?!?!?!! You mean I might actually have BOTH eyes working at the same time!? That I can even be fixed? This is truly the most hopeful news I've heard in a long, long, long time. Joy! So April 15th- lens fixation and I go under for it. Number 6 surgery. Then I will most likely have another YAG laser surgery (number 7) to break the capsule that my eyes like to grow after surgeries. You can betcha I gave her a big ol' hug with a little crying on the side. She probably thinks I'm a hot mess of "4 kinds of crazy" now. Plus, I recommended Captivating to her which she said she'd check out. Which by the way, I got to finish while my eyes were dilated just in time for our last Cookbook Book Club on my Kindle with the text to speech capability- yay!

God is so good friends! That I can even go to the doc's office, that we live so close, have insurance to cover most of it is such a blessing. I don't care that I sometimes wait from 8am to 5pm. It is worth it to see! Such great news. I was preparing myself to live a life of legally blindness and now there is hope that I can get my eyes to see with the help of some surgeries. At the chance alone I am elated. If this healing is not God's will, then God will lead my heart in acceptance of what is. Because you see the true healing of my heart and mind has already taken place. Seeing clearly is just a bonus! What God has shown me with poor vision: friends' love, His love, etc. has been so clear to me.

Enjoy your Eastertime- HE IS RISEN!!

Wheyening. (Whining)

Darn it all to heck!

Lord, what is going on? Why is the screen I'm looking at moving this way and that! Was there peyote in my carnation instant breakfast today? No. I know that much. Father, what is up? Did I mistakingly pray for patience or something!? I don't recall doing that... I guess I will trust you then. Heavenly Father God, please give me heavenly patience in my affliction. Thank you in advance for shaping me through this. Let me not be a complainer, but an advacator of your grace which is sufficient. I may not understand why I'm going through these vision woes, but I will consider it pure joy! You obviously are not done with me yet! Thank you Father, for my husband who loves me and rolls with the punches better than Evander Holyfield. He is my earthly rock. I can't believe he still answers my calls! Thank you for making him so good. May my eye maintenance that is so high maintenance be used for your glory Lord. In your son's name I pray, Amen.

Friends I have to stop, drop and pray right now. Do you take these moments? Where you bank-chute your worries to God. My bank-chute tube is crammed with junk. But God is the ultimate bank teller of my life. Thank goodness.

Left eye be a wobblin'. It moves slowly from side to side like a baby swing. Dang it.
Right eye has started shakin'. It moves jerky like I'm shaking a pepper shaker.
WHY.
Okay, I know why- ectopia lentis et pupillae. But I don't really know why so I'm going to Dr. Lewis (flubber smart mad eye doc) to get some answers tomorrow. Which means I'll have both eyes dilated most likely. Heaven help me. I get to experience legal blindness in both eyes again for several hours. Oh well! At least I won't see the shaky vision right!?

Today I called Leelah's preschool and notified them we most likely won't be able to finish out the year due to my vision issues. I told a "kinda know" (Safety 1-2-3 video rocks!) person all about my freak eyes and explained to her how yes, I haven't a clue what is happening with my eyes, but that God has given me such great peace. She then said something about a great attitude that I had; which I quickly shot that the glory up to the Lord on that one. I also told her, "I have to". I have to have a good attitude. What else would I do? Be mopey? Gross. That doesn't mean I didn't subsequently cry it out to Johnicles on the phone. Oh sweet man he is.

I feel better. Thank you blogspot. I just wanted to share with you a little come to Jesus moment that I was having. I hope this prompts you to do the same with whatever storm you are dealing with in your life. It can be a category 1 storm even or a kill storm level 8- God can take it.

Gift from God through a Friend!!!

God totally answered a prayer (see below post) I had through a sweet friend of mine today. Just when I think oh there's no way I can pray for that or that totally won't happen, God blows me away.
Check out what we at the Nichols' home are celebrating today:

So John comes home with the pizza box and on top of that box is this box:

And this was what was inside!!!

THE BACKSTORY:
My eyes are whackadoodle most days. I'm going back to the surgeon next week in fact because the lens is wiggling- out of place again in the left eye so we will set up another big surgery to reposition it. The right eye has a cataract that is growing daily. My computer is zoomed to 150%+. I have TRIFOCALS on the way. TRIFOCALS!!! But whatev, it's no biggie until you mess with my reading abilities. Which have been the case- especially when I go to the eye doc for HOURS at a time and have both eyes dilated and so I sit there with John- who can read. I sit there and make jokes and sleep. UNTIL TODAY
THE STORY:
When we opened the box I gasped!!! And said, JOHN!! To which he said, "I didn't buy that!" and then we read - John had to because I was too busy happy-weeping at this point- the sweetest note from an amazing friend, Lezlie. Thank you Lezlie for listening to what God put on your heart. I pray you have joy knowing that you personified the "love note" (Captivating book) from God to me. I can't tell you how amazed I was to see this answered prayer in my kitchen tonight! The coolest part is that God had totally been telling her to look into getting some kind of reading contraption for me and then I posted the below post yesterday and it was as if God reaffirmed it for her. WOW! Isn't our God amazing in every sense? Words cannot do this justice. So I must chronicle this Nichols Style: Get ready to laugh... Hopefully...
The Kindle and Me:
Talk to the hand real books!!!

Dining with Ms. Thang:

Fireplace Time with Kindlito:
(white grape don't judge me!)

Us watching Project Runway:

Ahhhh... Nighty Night! What a day- we're tuckered out!


Seriously guys. This is the best. The Kindle for those that don't know is a reader that you can have books on- I know I'm terrible at describing this. Go to Amazon.com. It's so great for low vision people because you can increase the font size to huge and a lot of books have the text to speech option available. I've already been using it up!!! It's just so great. I had been talking with John the other day about my "if I only had a Kindle" dream. And I knew we could not afford it (hey we do Dave Ramsey and aren't ashamed). For what it does, the price is very reasonable especially compared to some low vision devices. And so I prayed. I have never prayed for an actual object like that before and I felt a tinge of guilt about it. But God like the perfect Father He is knows what blessings you need.

Lezlie, again thank you. Thank you Lord for your love that was shown!

Update on Eyegate

All is good on the homefront. Tonight is our 4th installment of the Cookbook Book Club, and let me tell you it's oh so good this book, Captivating!!! What a blessing!

Leelah is coming off of bronchitis- third month in a row. But golly gee, you wouldn't know it as she is a trooper and then some. They finally decided to give her an inhaler. Boy. Those things can really hype a kid up. Whoa. But it helped a lot!

And you should know, that the eye is a jigglin' again. Yes, yes. Gasp! But yeah it appears as if the lens is going to fall for the 3rd time. THis will mean more surgery. Like we didn't already know this was going to happen come on folks! But seriously friends, God's all-transcending peace is upon me full strength. I am good. It is good. And in Heaven I will have some (pardon my crassness) kick-A vision. I'm just sayin'!!!!

I do want a Kindle oh so badly. We do such a good job around here. We don't have GPS's. We don't have an I-anything. We have convex televisions. It's just that I straight up love to read. Love. To. Read. And these whole eyes they just aren't so hot- pending surgeries and new glasses. Oh well, I will dream...

But I do have a special announcement to make: We saw Avatar this weekend!!! See above reference to our lack of technology.
Here are my observations:
Thing of the first:
Those aliens are big. I didn't realize that.
Secondly:
Totally a "party for the eyes" (Thanks Lesly!)
Thirdly:
I never met some glow in the dark that I didn't like. I felt like I was at the roller rink again when they turn off the lights and play "Ghostbuster" by Ray Parker Jr.
Fourth:
I love me a good battle and realistic CG. It was outstanding. Loved it.
Fifth:
I was having issues with the Navi's attire situation or lack thereof. It was distracting. I know I'm lame sounding. But all I could think about was, "How do they battle and fight and ride on horses and such with a thong?" Really.
And Lastly:
Did James Cameron just emotionally punch George Lucas in the face with that movie or what? Just had to say it. Not talking about Star Wars Episodes 4-6 but 1-3. Come on.

will fill you all in on when the next big surgery will be...

I flipped out.

Yesterday was not the best day ever.

Neither was Monday to be full out honest.

Today was nice- it was spent with buds frosting cookies and not at the eye doctors' office as were the two aforementioned days.

I can't write for long, but I know I need to share that yesterday I broke down.

My life is so small. Especially compared to that of what people are enduring in Haiti and all over the world or the U.S. for that matter. I know that. My woes are hardly relevant. So please know I'm aware of my pity party posty. There are truly more important and worse matters out there that we all need to pray for daily.

It should be a spirit of thanksgiving that I write this in, but it is not. I am fearful. Or I was.

So we go to the eye surgeon on Monday to check up on how the YAG laser went. Not well. He says since the capsule is the texture of "leather". The left eye vision is foggy and there is still some pain. The new plan is to wait until April to see if it retracts itself (slowly). That's all we can do. Okay, no problem. It's not what I would want, but it's not in my hands and I'm thankful.

I've been noticing a slight change in my right eye for some time. We go see Dr. Genius (Lewis) my best bud, he says "we can now hear the hoofbeats of the cataract in that eye". So they dilate both. And yes, the cataract is a comin' on in over the right. Okay, no problem. It's not what I would want, but it's not in my hands and I'm thankful.

Um, no. You see yesterday was a taste in the life of what a bilateral legally blind person lives with. And I flipped out. I HATED it. With both eyes dilated for several hours I could not do anything. I am so sorry Lord for complaining before. I am so sorry Lord I'm complaining now. Thank you for loving me through this. I couldn't cook, sew, drive, read, look at the computer, watch T.V., etc. All I could do was eat my feelings in Doritos (Spicy Nacho of course!), cry, and sleep. It was bad folks. Thanks to Mom in love for talking me down. Thank you Tina for cheering me up and driving me and the kid to and from school. You are the best.

I realize now I fell right in the enemy's plot of fear. Face first in. I got so scared. Is this what it will be like for me one day? Will the left eye doesn't heal in time for the right eye to get fixed? Will I ever have to be at this point for an extended period of time? Is this why God made me so over optimistic? I DO NOT WANT TO ENDURE THIS LORD. What do legally blind people do all day? How would I live? I might be being dramatic here, but it's really got me thinking. A great friend and personal mentor of a Christ follower told me today: "You can wonder, but don't worry." GREAT advice. She said that Jenny Owen, blind Christian singer, said that. So I will chew on that nugget of wisdom.

The doc brought up again that my eyes are very "special". That someone with ELeP (Ectopia Lentis et Pupillae) doesn't walk in every day. Well, that's nice I guess?
I'm being smarmy now. Smarmy AND dramatic.

But isn't this what Beth Moore tells you (well if she says it it's got to be Biblical!) to do when faced with a possible trauma in your life? Or when you're living with insane worries? Go there. Say you are afraid of losing _________ or dying. Go there and picture that happening. And then what. God will be with you in that. Keep the Kingdom vision. Stay in the Word.

"In ALL THINGS we are more than conquerors through him who loved us."- Romans 8:37

My prayers are that I would have one eye working the best it possibly can at all times. My fears are both will go bad at once. The enemy knows this. If you let God reveal your fears to you through prayer and the Word, you will know what the enemy will prey upon and go after. THus, you will know that when it feels you are being hit where you are the most vulnerable your fears (marriage, money, family, death, kids, etc.)- you know where it is coming from. Fight back. Stay strong in the armor of knowing the truth. You can either be manipulated or armor yourself with God's help. I know I'm not fully articulating this. I'm not one to preach. I just have to let you know any God given wisdom from personal trials. Hopefully you will hear God speak to your heart over the loudness of your fears.