Big News

Ok so I can finally share our big news & the decision we came to. It's scary but super exciting. In January Julia will start a clinical trial of a new medicine called cyclodextrin. It is going to require monthly 5 day visits to NIH in MD, so I am taking an intermittent leave of absence @ work. It is also going to require surgery (this is the scary part) to install a port in her brain called an ommaya reservoir that will be used to deliver the medicine. We have the utmost trust in the doctors & faith that God is in control. This gives us renewed hope for Julia's long term future.
Prayers would still be appreciated as we continue on this journey :)

The Rest of the Story

Sorry couldn't resist with the title. So where was I? Well we had an absolutely awesome time in Phoenix & at the Race track & meeting Kevin Harvick. But in reality there was much more to our trip. We left Phoenix on Monday Nov 12 in our rental heading to a few sightseeing areas. The first place we stopped was the Tonto Natural Bridge State Park. It was breathtaking. The hike down to the Natural Bridge was a little challenging but it was so worth it! Be sure to check out the pictures I've uploaded on the family photos page. We left there & didn't quite have time to make it to the petrified forest like we planned so we headed west into Flagstaff to stay the night. The next day we headed up to the Snow bowl, a skiing resort. It was closed but there was plenty of snow on the sides of the road so we stopped & Julia completed her mission of making a Snow-angel. That made her day! We also stopped along the way & had a snowball fight, not something we usually get to do in Fl. The coldest temperature we saw was 21 degrees. That's too cold for me :)   Next we drove to the south rim of the Grand Canyon, snapping lots of pictures along the way, as you can see. The Grand Canyon is beyond words, it's so large it's almost incomprehensible. If you've been there you understand. At the Grand Canyon it was still pretty cold & the wind was blowing so we didn't stay as long as we would have liked, but we did stop & see the Grand Canyon I max movie on the way out. It was pretty cool. Our next planned stop was Hoover Dam. As we drove & it started to get dark we were thinking about getting a hotel for the night, but when we realized how close to the Dam we were we decided to drive a little while longer so we could see the Dam @ night. That was very neat. Then we realized we weren't too awfully far from Vegas & as this was the girls & my first time in that part of the country we said what the heck! LOL. We drove a few hours more & cruised down the Las Vegas Blvd to witness all the lights. Wow!! That was cool. We ended up getting a hotel just outside Vegas that night. The next morning we had plans, Jason's cousin whom we hadn't seen in 18 years had payed for a helicopter flight over Hoover Dam for us. I was soooo nervous!!! But it was soooooooo awesome!!!! We were so amped after that we wanted to go back to the Grand Canyon & do a helicopter tour there. Instead we started making our way back towards Phoenix. Julia had a date on Thurs with a cute Fireman :) Tommy was a Make a Wish Volunteer & a Firefighter. Him & his guys offered to make lunch for Julia @ their fire-station. It was so awesome!! They made soft tacos just as Julia requested :) They gave us a tour around the station & let the girls water the grass with the fire hose. Julia got to get all decked out in a fire-suit  too! We all had so much fun! Our last night in AZ we went & got reacquainted with Jason's cousin Tammy & her husband Frank. They live just outside Phoenix. They had never even met our girls so it was really quite a reunion. We left Phoenix the next day & headed home. hen our plane landed Make a Wish had made sure we had another limo waiting to bring us home. We were extremely tired but our hearts were so full of beautiful memories.  So that is it in a nutshell. I just want to make sure everyone knows what a wonderful organization Make a Wish is. All of the Volunteers we met on this journey were awesome!!! I can't thank them enough. They truly provided us with the Trip of a Lifetime :)

Julia's Wish Came True!!!

The Make a Wish Foundation is so awesome!!!!!! We had such a wonderful time during Julia's wish fulfillment. Her wish was to meet Kevin Harvick, her favorite Nascar driver @ the Phoenix International Raceway. It came true a few weeks ago. I want to tell everyone all about it but I'm pushed for time right now. I will try & get back on here during this next week & give everyone some more details as well as pictures. Hope everyone had a wonderful Thanksgiving!

Beautiful Spirit

That's what Julia is, a beautiful spirit. When I listen to her say her prayers @ night I am reminded that Jesus said that "Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” Her prayers reflect the innocence of her soul. She doesn't ask God for things, she tells him how much she loves him & how much she loves worshiping him @ church & she says "I  hope you enjoyed listening to us worship you."  She accepts Jesus with all her heart & soul, there is no question in her heart or mind that he loves her & has nothing but good things in store for her. The fact that she has no idea what those things are doesn't have any affect on her. She inspires me to have faith & trust God even when my mind & heart don't understand.

Exciting News!

We got confirmation today that Julia has been approved to have a wish granted by the Make A Wish Foundation!!! This is super exciting!!! We get to meet 2 volunteers in about a week & they will talk with Julia & find out what wish she wants them to grant. I can't believe this is really going to happen. The emotions are overwhelming. I am so excited for Julia!!!!

Amazing

Just witnessed the most beautiful thing in the world. I heard something strange so i went to check & Julia was in her room strumming away on her Hannah Montanna guitar singing these words      "I'm so happy, but kinda sad, cuz you died on the Cross for me. It's amazing, so amazing, you're my amazing God" She is amazing, I am teary eyed & speechless right now :)

Catching Up

Wow, I have a lot of catching up to do on here. We have been busy busy. The Poker Run Spaghetti Dinner back in march was very successful. Thanks to everyone that participated.  We met a gentleman there that has turned our sights to a new medicine for Julia. It is called Cyclodextrin, we have been waiting on the NIH in Md to get a trial of this medicine going. We are now considering going to the FDA individually & applying to have her new doctor @ Shands treat her with it. The only problem with that approach is we don't know how much insurance will cover because it is investigational. Other families have gotten the FDA to approve the treatments but not insurance, so they are having to pay out of pocket to the tune of around $30,000 a year. I'm not counting my chickens here just yet. At least we have a couple of different paths before us though rather than a wall. Even though some days I don't see the difference with the slow speed that everything moves. I know everyone is working hard on their end, it's just frustrating. Julia continues to do well, she is loving summer. We took her camping last weekend, she loves it! We have a little pop up camper & she enjoyed every minute. Another positive note is that her body seems to have adjusted to the Zavesca & we haven't had to use the pull-ups in several months now. That is a blessing all in itself. Ok, I must go for now, but I pledge to get on here & update more often in the future :)

Stay Focused

It's been difficult to stay focused this last week, so much is happening. On the bright side it's all good stuff. The Publix Niemann Pick awareness event was a success. We got a lot of brochures out there & made a lot of people aware of a disease most had never heard of. We also celebrated Julia's  12th birthday Wednesday & again on Sunday. She had a lot of friends & family over to play with & we had a bounce house in the backyard. It was a beautiful day. I was so glad to see her running around & enjoying her day, just like every 12 year old should. By the end of the day though she was definitely worn out. She went to bed @ 7pm!!!!!! We also went out to the Forest Eagles Event on Sat. They had a lot of people there enjoying the Chicken dinners & ribs as well as the yard sale. That event was also a success. We are so appreciative of the support we are receiving, so many people are reaching out to us & trying to help. It does get a little overwhelming though. So to anyone who has emailed or sent notes lately I am working on responding to them, it's just taking me a little longer than usual, please bear with me. Much love to everyone!!

I didn't realize just how long it's been since I posted on here. We've been extremely busy helping with the planning of the Poker Run & Spaghetti Dinner on March 31st. Be sure to go to our events page & check out all the cool things that will be happening soon. I'm especially excited about the NPC Awareness event on Feb 29th @ all the Ocala Publix's. It's pretty cool that World Rare Disease Day falls on her birthday this year :)
 Already this year is flying by. Julia is doing well. She did fall @ school today. I've recently started a log of her falls @ school because I'm having difficulty getting her any services such as PT, OT & speech in school. Basically she has to lose skills before they will help her. What they're not understanding is that if we wait until she loses the skills there will be no chance of her regaining them as it will be because of cell loss. Try explaining that to a cash strapped school system with rigid guidelines to follow as to who qualifies & who doesn't. Well, what they don't realize is I didn't get his far in Julia's diagnosis & medical condition by laying over & playing dead. I just have to find the right people & the right approach. We'll get it eventually, it just won't come easy, but I don't think I would know what to do if anything did :) Good night all, God Bless.

Not Ready for a New Year

We finally got rid of Julia's headache!!! Apparently she was dehydrated from all the traveling & not drinking enough on the run. After talking to Nicole @ NIH we made it our mission to make sure she was getting enough liquid intake. We made some fruit juice slushies to keep her from getting bored with too much water. It worked like a charm :) In less than 24 hours headache conquered!!! 
Last night we had a family gathering to see in the New Year. I think everyone had fun, I know Julia did, she spent the whole evening like a mother hen running around watching over all the younger children. She loved every minute of it, she loves kids & babies so much :)
I think I'm having a tougher time right now with a New Year stretching out in front of me & so much seeming uncertain. I'm not sure I'm ready to embrace the future & all it holds just yet :(   I guess I better get ready though because for some reason God seems to think I can handle it, sometimes I wish he wouldn't trust me so much :)