Cone Dystrophy

Okay...this post is long overdue...but it needs to be posted. It's gotten to the point where all friends and family need to know and understand a little bit about Cone Dystrophy.

Two and a half years ago, in the middle of finals at CCMS, Jacob went to see an eye doctor to up his prescription and the doctor noticed that something was going on with his vision. He had horrible vision for a 29 year old. So the Dr sent him to a specialist, who sent him through numerous tests and after weeks of getting wires put in his eyes, electric scanning and other nasty tests Jacob was diagnosed with Cone Dystrophy. The diagnosis was awful to say the least, as little is know about it, and there is basically no treatment. And the Dr told us to stop having kids and be sure to get Kaylie tested....well we had Aaron anyway....and life goes on.

So the reason we are coming out about this, is that it appears to be getting worse...and it is only a matter of time before Jacob will have to pass up his driving privileges, which is devastating to say the least....especially because he is such a huge car fanatic.

Here is a little run down of the disease:

Cone dystrophy is inherited....meaning our kids are at risk, Jacob's siblings and their kids are at risk too.

Symptoms of cone dystrophy are: vision loss, the onset can be anywhere from teens-sixties. Sensitivity to bright light, and poor color vision. Jacob sees the best at dusk, or on overcast days, and he has to wear special sunglasses for watching TV and working on the computer, and just being outside or in bright lights. Also he has to wear a second shade on his sunglasses so he can drive.

Vision usually deteriorates slowly but it can get as bad as 20/200 rapidly in some cases.

It is a type of macular degeneration, which is usually an age related disease (he has the eye sight of a 70 yr old.) It is located on the back/ inside of the eye....so no laser surgery or any surgery for that matter will help.

The only thing that looks promising is gene therapy (inject genes into the eye)....but cone dystrophy has yet to be explored . Right now, we are just trying to get him to his eye Dr regularly, and we stay on top of vitamins and herbs....and we are constantly looking into alternative treatments.

So...just so everyone knows....if you see Jacob and he seems to be ignoring you...he isn't, he just can't see you, and he is very self conscious about this. He would like you to just walk up to him and talk to him...and if he can look at you long enough he should be able to figure out who you are.

This picture is basically what he sees (I'm not sure his is this bad)....but of course it varies from day to day and in different lights he can see much better:

It's humbling to tell everyone about this...just because we don't want anyone to worry about us. I will be honest and say that this is a huge struggle for both of us, but what can we do?

This whole eye thing further complicates our whole unemployed situation...as we always thought we would just go to another mortuary or open our own after getting laid off, but as his vision deteriorates it's obvious that it is a field that we probably will have to abandon (as it requires a lot of driving.)

We're still trying to build a couple businesses, between mine ( www.bedbuggs.etsy.com ) and his website ( http://bad-a-body.com/ ), and he is helping my dad build his business. If all else fails, we may end up going back to school.

Un-employment is long gone....and we are literally living off of faith...day by day. A lot of people question me as to why I just haven't gone back to school and gotten a job, well....I know that I am supposed to raise my kids....that means being at home with them. And with my shop we've been able to barely pay bills and keep me home. So our prayers our answered in that aspect! I want to thank everyone who has kept us in their prayers...we can defiantly feel them...and if it is alright, I would like to ask that you keep praying for us over the next few months...while life plays out. We are still living in my grandparent's home while they are on a mission, but as time gets closer to them coming home (August)...the future becomes much more uncertain...and naturally, my anxiety gets a lot worse.

Other than that we are okay...yes we are struggling....but we are surviving. Heavenly Father works in mysterious ways...and this one is certainly still a mystery, but the lessons that I have learned over the course of the last two years are priceless, and I wouldn't trade them for the world....nor would I wish the experience and process of learning them on anyone.

I will try to do better about keeping everyone posted on what is going on! Thanks Again for all your love and support...you have no idea how much it means to us!

Car Wreck!!!

I know...it has been forever since I've posted...most of that can be attributed to being super busy with my Etsy Shop....which has been a significant blessing, but a lot of work. Up until today I've been working 12-16 hours a day! (only wish I was exaggerating)

Life is crazy as is....but just as I thought it was finally time to relax....but we had to have a car accident. I've never been in one before...but of course the one time in our life when it would be just horrible to have a car wreck....yeah it happened!

So Sunday we went up to visit Jacob's family (we hadn't seen them since Thanksgiving...so it was time). We tried to head back as early as possible as we knew that a storm was coming in. We left his parents house at about 7:30 pm and it took us about 30-40 minutes to make it to Rexburg (usually a 10-15 minute trip). We were going 45 mph on the highway due to slush and rain/snowy conditions. We pulled off on the North Rexburg exit and started our normal journey into town. We noticed the pickup infront of us was going really slow...and we understood we were going about 30 mph in a 50 mph zone. As we got closer to the pickup I realized that they were stopped but their brake lights weren't on. I yelled at Jacob to stop and he was already braking and then we slid (with 6 inches of slush on the road....it's hard not to)....it didn't take long to realize that we weren't going to stop in time. Jacob started to steer to the right of the pickup hoping that we would miss (I'm sooo glad he was driving because I would have steered to the left...as I was sooo worried about the canal ditch on the right side of the road.)

Well we barely tapped the pickup's back right bumper and felt the crunch of our fender and that was just enough to knock our sliding car right into the ditch. We rolled onto the passenger side of the car and it was quite the roll and drop as the canal was just as deep as our car is tall. I was super tense (Jacob says I was screaming at him....but I honestly don't remember, I just remember freaking out about the kids) I was pushing with my right arm against my door and pushing my right foot down as hard as I could (as if I was slamming on the brake) I really didn't want to roll into the ditch because I was afraid that there might be some water in it.

When the car finally stopped...Jacob turned off the engine (it was revving like mad) and he tried to open his door (as it was the top of the car now). It wouldn't open so he put the key back in and got the window down. Kaylie was in her booster behind the driver seat and she was just hanging there she had the upper strap on which she never does but ironically did this time. Aaron was on my side of the car and he had been asleep until we landed and he was just looking around like "why am I sideways?" Jacob helped me get out of my seat and he climbed in the back to get the kids. We passed both our kids out of the window to some guys that were helping us (it was a horrible, helpless feeling and I hope no one ever has to do this). I got out after the kids and picked Aaron up out of the snow that was up to the poor kid's knees....(he had no idea what was happening). Jacob got out of the car and then I could finally breathe. Then the paramedics pulled up and so did the fire department and police. They closed down the road and it was a mess. I can't explain the panic to you....but it was there. We are all fine...with the exception of myself, I couldn't feel it at the time but I had whip lash and had to go to the ER for x-rays and all that fun stuff. I'm a little sore...but just happy that it ended the way it did, as it could have been so much worse.

Our car shouldn't be totaled, oddly enough the only damage was the crashed drivers side fender and headlight and the car has no damage from landing on the side other than a broken mirror. The truck we hit only had a piece of their tail light broken and that was it! Moral of the story...always wear your seat belts! Don't panic.... Insurance is not a waste! And Never say Never.... unfortunately it can happen to anyone!

I hope to get some pictures up soon!

Halloween 2010!

We were the Wizard of Oz for Halloween. Jacob was The Wizard of Oz (his costume happened literally about 5 minutes before trick or treating.) I was Glinda the Good Witch (even though every little girl that saw me thought I was a "beautiful princess". Aaron was the Cowardly Lion...I think the more appropriate word for him would be "Board to Tears Lion". He got sick of trick or treating and being dressed up pretty quick.

And Kaylie was Dorthy...and she loved every minute of this Halloween...she really thought we were the most awesome family on the block!

~Trick or Treating was Perfect....yes perfect in Rexburg!!! We didn't need coats...it's a first!
Aaron and his Aunt! ~In case you were wondering....no I did not make the costumes (Jacob made his). But other than that we got all the costumes on Ebay and Etsy for a steal! And I've been so busy I wouldn't have had the time to even think about making costumes!
The beginning of Kaylie's week long sugar high.....oh joy.....
Super Girl and Dorthy...aka....Brynnlee and Kaylie posing for the camera.
The Whole Clan on Halloween Night! What Fun!!!

SURPRISE!!!!! David's Home!!!!

Yay!!!! David came home on Tuesday and we drove all the way to Utah to pick him up (and back in the same day....don't recommend it for two small kids...just in case you were wondering)

And so here's our funny story....we get to the airport about a half hour before his flight comes in and we have this whole skit planned out (Saturday Night Live Skit:"Surprise: I'm so Freakin' Excited Surprise Party). If you haven't seen it I've included the link for you to watch it.

~So anyhow...we follow my dad to the economy parking....in the middle of nowhere so we have to wait for the shuttle to get to the airport itself. And then the shuttle driver made several stops including to pick up a new driver which was fun.

So by the time we get in the airport to meet David is coming down the escalator already...problem because we had to put on ugly sweaters to preform our skit (it was 95 degrees outside) and the whole baggage claim area was covered with other families waiting for their missionaries. (aproximately 40-50 people there at least).

I hurry and throw my sweater on and then I realize that my family isn't going to get their's on in time and they aren't really doing anything....and poor David has this look on his face like "they're late (typical Fluckiger Style) So I ran like an idiot between a random family standing there with balloons and and posters and I yell....."SURPRISE.......I'm just so freakin' excited". And yes I made a HUGE scene and everyone was looking at me some laughing but most were concerned or confused.

David got it right away...and was laughing his head off. The reason we chose this skit is it was his favorite SNL skit before he left on his mission, and he wrote about it in several letters.

We're just so freakin excited to see each other.
Still making a huge scene....I was laughing so hard I was crying....it was pretty fun!

So here's the link....http://www.hulu.com/watch/16388/saturday-night-live-surprise-party Please go watch it....it's pretty funny!

So it's Been a While!

Okay...so I need to update a little. My sister just emailed me and told me that my blog was pathetic so here we go.....

August 12th Aaron turned 1!!!! And these pictures were taken on his B'day! So he's even bigger now! Right now the little stud is learning how to walk he's so cute about it because he will take a few steps and then clap and say "I did it, I did it!"

Okay so I've been pretty busy these past few months and for his Birthday dad was gone and it was just me and the kids. So we threw together an owl cake (look familiar??) And this was Aaron before the cake and.....
This is Aaron after. Kaylie was having a fit because he made such a mess. It took three bath tubs full to clean the 1 inch thick layer of frosting out of this guy's hair!

Catchin' Up!

Okay...It's been a month since I last posted....so know it's time to play Catch Up!

After a week of not having my computer (it crashed.....yes, I know Jacob and I have the worst luck in history...only $200 to fix) This Computer Crash was the icing on a Fantastic year!

Any hoo......I'll start from the latest and work backwards.

~Here we are at the 4th of July Parade....which was freezing! We had to show up in our coats and blankets, fireworks were the same too.
~This was the first 4th of July Parade that I can say I had Hot Chocolate. I usually have a Popsicle or smoothie, but it was so cold that when Great Harvest (who was just across the street) posted a "Hot Chocolate" Sign.....literally half the people on our side of the street ran across to get some.

Kaylie is wearing her Red, White and Blue Tutu....everyone kept calling her a 4th of July Princess (which she loved).
Here's a random picture of Aaron at Kaylie's Dance Recital in June. This poor lil guy has been teething like mad.

As of now, he has all 4 front teeth and is working on number 5....hence the face.

I'll try to post some video of her dances, as soon as I can figure out my basically "new computer".
Here's Kaylie just after her Dance Recital. She did so good....which was a sigh of relief for me, I've worked so hard over the last 6 months to help her learn her dances....and no matter how hard I worked she never seemed to get it. But once she got on stage in front of all the people, she lit up and let it out. She did so good on her first dance that it made me cry. The second dance...well she did okay, she was just really focused on the Balloon that she wanted.

I'm so proud of her, she's such a good girl, and she's been my sanity through all these awful trials.
And say Hello to my "living nightmare"....yet Jacob's "Dream Come True'. For the last several months Jacob has been working like crazy on building his Dad's GTO, which has been in pieces since before we got married.

They wanted it finished by his Dad's Birthday in May, but that didn't happen so they got it almost finished (just not running) by Father's Day. We tried to surprise his Dad with it.....but I don't think his Dad can ever be surprised....oh well. It's running now of course.

And I'll admit it is very nice....but I still hate it
(I call this car 'the other woman', as Jacob disappears for days at a time to work on it).

Oh well, I'm glad it's done and running. And Jacob and his Dad have been like kids in a Candy Store ever since.

Oh So Blessed!

Even though the past couple days haven't been the best.....

• Sunday: I was as sick as a dog....thank you allergies.
• Monday: Kaylie bit another girl in her dance class on the eye....nice.
• Tuesday: It rained, like it has been for the last several days.
• Wednesday: Kaylie spent 3/4ths of the day in Time Out.
• Thursday: I was puked on by Aaron, very randomly.
• Friday: I held a sick, crying kid all day long.
• Saturday: Aaron's still sick, and I'm a week behind on laundry, dishes, cleaning and just about everything else in my life.

Even though all these and more happened this week, I just feel blessed!

I guess it was cause I got to meet up with a few of my High School girl friends.....and they always brighten up my week. Thanks gals...love ya!

Sure we still have no idea where exactly life will take us in the next year, and there's a million other problems in life, I'm content...I feel like I'm where I belong.

So thanks to all of you out there who are keeping us in your thoughts and prayers...we still have a LONG way to go, but we know that sooner or later we will get there.

Hope life is being kind to all of you!