Merry Christmas!

Merry Christmas everyone!!! Hope everyone enjoyed their day. We did despite a few hiccups. We managed to make it home around 2 am Dec 24th & got a little sleep before waking up & throwing ourselves into all the normal Christmas Eve activities. We finished off our evening with Christmas Eve church service & a little visiting with friends. I think we made it to bed around 2 am after Santa finally came :) Julia was restless & didn't truly settle down into a good sleep until late. She also had been complaining of a mild headache that went away when she lay down, so we called Nicole @ NIH just to check in & make sure how to proceed. It kinda threw us all for a loop because this was one of the possible side effects of the lumbar puncture but she should have experienced it several days ago if she was going to @ all. Nicole reassured us to just keep her resting, give her caffeine, (this made Julia happy, it's not every day the doctor prescribes Mt Dew for a child :) ) & give her Motrin. Christmas morning she was up bright & early, but proceeded to vomit once right after breakfast & still had her headache only when upright :( We checked in with Nicole once more but she said all is well, as long as Julia doesn't become lethargic or vomit to the point that she can't keep any food down. That certainly has not been the case. Although she hasn't been quite as energetic today as usual she certainly had her share of fun playing with her cousins & her new toys from Santa :) I'm praying tomorrow brings the end of her headache. Hopefully I will get some pictures up tomorrow from our trip, their certainly are lots of nice ones :) Good night all!!

What a Week

It's been a whirlwind week for us. We decided about 5 months ago that for Christmas this year we wanted to go on a family cruise, Jason & I have talked about it forever, but we had just never done it. I am so glad we did, if we knew then what we know now, we would never have spent the money.  But by the time we had our diagnosis & an idea what we were facing the money was already spent. While the cruise wasn't quite everything we had expected we did have ALOT of fun!! We spent 4 days on the ship in the Bahamas.  Everyone was sick the first night & spent the evening in the cabin. But we managed to crawl out the next morning & enjoy the rest of the cruise untill the last night when we were all sick again. While their were many fun parts in between, I can tell you none of us are in a hurry to get back on a ship any time soon :) We stepped off the boat on Dec 19th & drove from Port Canaveral to Tampa got a room for the night & then flew out to MD @ 7 the next morning. We have been in MD @ the National Institute of Health since then. Julia is participating in a natural history study of NPC here @ NIH. Tues Dec 20th was spent mostly on getting checked in & paperwork. Yesterday Julia underwent a an MRI, a lumbar puncture,  & a skin biopsy.She was under for about 3 hours slept for about 2 hours longer after the procedures which kept me a little nervous. But as usual she breezed through everything beautifully, she is one tough cookie. She suffered no after effects of the anesthesia nor did she experience the thing I feared worst, the post lumbar puncture headache. We have been staying @ The Childrens Inn, a place on the NIH campus for families with children visiting NIH. I must say this place is amazing, as are Nicole Yanjanin & Dr Porter. They have taken wonderful care of us during our stay & all of their evaluations have provided us with alot of information for us to go through & things to think about.Imust end this here for tonight, I will try to finish updating in a few days.

Fun Weekend

We had a great family camping trip this past weekend. Julia enjoyed sleeping in a tent & sleeping bag for the first time. Marking that down as a new entry on our list of family favorite pastimes. Julia is doing very well on the medicine overall. She does have diarhea pretty much all the time but, her accidents have been very infrequent, thank heaven, & seem to correlate with increased physical activity. In other words the more she runs around & acts like a kid the more accidents she has. Thank goodness for Goodnights disposables. Hey, it could be alot worse, she's still running & playing & being a kid, in the whole scheme of things I'll take it :) She's one tuff cookie.

Overwelmed

I've been overwhelmed recently with getting this part of the website up & going. I've never done a blog before so bear with me, I guess this will be a learn as I go process. Let me start by saying Thank you, Thank you, Thank you for all the prayers being said for Julia & us. They truly make a difference. God hears & answers every prayer, sometimes the answer is no, or not now, but he still answers. Whatever he is doing in & through Julia it's some pretty powerful stuff, because I'll tell you the response we have had from people praying for us & wanting to help is pretty overwhelming.

Julia's Wish

Where to begin? I'll try to start @ the beginning without dragging it out to long & boring you to death. Shortly after Julia was diagnosed in Oct, 2011 we were encouraged by many family members & friends to apply to Make a wish for Julia. For those of you not familiar, Make a Wish grants wishes for any child up to age 18 affected by a life threatening illness. A lot of these children go on to beat their illness, but it gives them unforgettable memories that can last a lifetime. Ok, so back to her wish, it kind of feels like a dream now that it is over & we are back to reality. Make a Wish sent a limo to our  house to take us to the airport. We had never been in a limo before, so that was a treat all in itself! We flew to Phoenix, AZ where a Make a Wish Volunteer was waiting for us. She welcomed us & helped us to our rental vehicle  & gave us directions to our hotel. We had reservations @ The Sheraton in downtown Phoenix. It was amazing!! Everyone was so nice. They even upgraded us to a 2 room suite with 2 bathrooms, 2 beds & a foldout couch free of charge when they found out we didn't sleep good because of Julia's restless sleeping. Poor Becka got kicked all night the first night  & Jason & I couldn't sleep because we could hear the squirming going on :) We slept wonderfully the rest of our stay with Julia tucked in a bed all of her own in the adjoining room.  We had dinner the first night planned for us @ Sams cafe. It was delicious!!!! The next morning we went on a tour of the Wish house. Interesting fact, the first wish ever granted was in Phoenix AZ in 1980. We visited with my husbands cousin whom we hadn't seen in 18 years. Saturday morning we went to Phoenix International Race way for a tour of the garage. We met another family from Ohio who was there with Make a Wish also, we got to tour together. In the garages we got to go inside Jimmie Johnson's car hauler & see all his extra parts & even his back up car. His crew chief Chad Knaus was in there & we took a picture of the kids with him. The kids got autographs from, David Reutimann, Ryan Newman & Becka got Kasey Kahne. That night we watched some of the nationwide race but it was a cold in the stands (at least to our fl blood :) ) & Julia was tired so we left before it was over. So Sunday morning we were back @ the track bright & early for Julia to meet with Kevin Harvick. This was the reason for the trip, the center of her wish. She got to meet him right outside his motor-coach. He came out & introductions were made. Julia had a list of questions for him, how does he like being a dad, did he always want to be a race-car driver, & the one that made him laugh was "Since we are out west, what driver would you like to challenge to a gun fight" His answer was "If I had the fastest gun, Kyle Busch". That made us cheer ;)  Julia got to give him a hug & we took pictures & he signed a few things for her. Her day was made!! The last thing he said was "What is the objective for today?" She thought about it & said "For you to win the race" & he did!!!! What an awesome day!!! It's getting late so I'll sign off for tonight, but I'll finish telling about the rest of our trip soon. Good night :)