We are A NIH right now for our 25th consecutive monthly visit. Crazy! What's even crazier is that this could possibly be our last visit for awhile. They are working on Phase 2 of the trial & when it gets up & running we will be going to gainesville for the medicine & only coming to NIH yearly! Julia continues to do well, she had her first dose of 1200mg on tues. She only had a slight affect on her hearing, & we are hopefull that it will bounce back. She is still in school full time when we are home & loves school! She's in the 10th grade & got A/B honor roll on her first progress report of the year. The picture above is of her most recent fishing trip with her Daddy & friends. The last time the guys went out without her they didn't catch anything & they told her daddy they wouldn't go again without her. I guess she really is thier good luck charm because they had a good day with her on the boat :)
It's been awhile since I posted an update on the trial. Things have been going fairly good. Julia has slowly moved up in her dosages over the last 6 months. She is currently @ 900 mg a month. When she reached 600mg she had a small shift in her hearing that recovered slightly & again @ 900mg she had another shift & a small amount of recovery during the month following. Other than the hearing there has been really no changes either good or bad. We fly up again tomorrow for our March visit. I will try to do another update following this visit.
Have to say a huge THANK YOU to Mr. Bob Hampton @ Bi-Lo sales. Mr. Hampton assembled a small army of people that pooled their money to buy Julia's pig @ the Youth Fair. Below is link to an article our local paper ran about the purchase of Julia's pig. We appreciate each & every person that worked together with Mr. Hampton to make the purchase happen. The money raised goes a long way in helping pay for Julia's medical bills.
Julia looks like a prize fighter after her run in with a weight machine @ school. She tripped over a mat on the floor & went head/face first into a weight machine. Thankfully she has an extremely high pain tolerance. Her coach was so worried & said she hit so hard it should have knocked her out. We took her to the dr & she got a little liquid stitch on her jaw & she is good to go. Now it will just take some time for the bruising to heal.
Julia recently had the opportunity to go trophy whitetail hunting in Missouri where she harvested this beautiful 13 point whitetail. We need to say a heartfelt thank you to the generous Mr. Bill Roller, owner of Little Flat Creek Ranch where Julia had the privilege to hunt. We met some of the most wonderful Godly people & had an awesome time. I would highly recommend The Catch A Dream Foundation to any family with a child with a life-threatening illness. I have never met so many people that were willing to give so generously of their time to strangers. When we left them after 4 days together no longer felt like strangers, but more like family. We will never forget this experience.
Julia started High School last week. So far she is loving it!! & I are @ NIH for our Aug visit. We actually got to come up a few days early this month to attend the wedding of my new sister-in-law. Kim was a beautiful bride & the wedding was beautiful too! We got to NIH Sunday morning & we have had a lot of good news since we've been here. For starters, & probably the best news of all, NO More IV's!!!! We are so excited about this, Julia's arms were constantly in some state of bruising from all the IV's & blood draws. The other good news is that after our 1 year visit next month, our visits will be reduced to 2 days!!!! Also very exciting!!! I can't believe it's been a year since we started back in the trial, crazy to think we've been traveling back & forth for that long. We have met so many wonderful people in this last year & have made lifelong friends. Also I added a video below this post, Julia was asked to help some of the leadership team here @ The Children's Inn where we stay to do the Ice Bucket Challenge. Of course she was only happy to help, Julia had a lot of fun dumping that bucket of Ice water :) In the video she is 2nd from the left in the
Finally!!!! Summer is here! May & Junes visits to NIH were wonderfully uneventful. Julia's condition remains stable. We are back @ NIH, as I type, for our July visit. Julia got her cyclo infusion this morning & everything went well. Because it's summer, Rebecka was able to come with us too. We are enjoying showing her around. Julia is especially enjoying introducing all her friends here to her big sister :) Tomorrow & Wednesday we should have some more free time & Georgetown cupcakes in our list of places to visit as well as maybe the Smithsonian Museum.
April's visit to NIH was pretty uneventful. Julia got her drug infusion & all was well. Time is flying by so fast I'm having difficulty keeping up, between challenges @ work & the everyday busyness of a household with 2 children in school. I can't believe we are closing in on the end of the school year so fast. Julia starts high school next year!!!! And now we are staring down our next trip to NIH. The good news is last month was our 6 month mark so there was extra testing & everything is showing Julia's condition to be stable :)
Things have been going really well. We have been @ NIH this past week & get to go home tomorrow. Julia got her cyclodextrin infusion Monday with no issues as usual. We got to meet another family this time, Cody & Kayla. Julia had really been looking forward to meeting another girl & they got along very well. Hoping maybe next month they will get to spend a little more time together. I didn't post anything in Feb but we did come up to NIH & Julia got the Cyclo. Feb was just such a busy month I got behind. Both my girls celebrated a birthday in Feb. They are now officially 17 & 14! And I'm getting old, lol. I'm going to go & try & do a little back dated updating because there have been some really cool happenings that I've neglected to post about.
I am so incredibly proud of both of my girls. They both did excellent jobs showing their animals in the Southeastern Youth Fair. Rebecka placed 5th in her class showing her steer Tucker and Julia sold her pig Ansley for a wopping $7.75 a lb. Thanks so much for the generosity of the kind people @ Wiechen's Realty who purchased her and thanks to Brian Terry vinyl for purchasing Tucker. Julia is donating all of her money to her trust fund to help with her medical bills. Those kids put so much work into raising the animals, I makes me so proud to see them show them. Rebecka also showed her 4h chapter pig & took 1st in her class. All in all it was a great week!
Please feel free to check in as often as you like. I'm going to try to keep adding updates as often as I can or as they are relevant. Our main goal with this website is to bring awareness to Niemann Pick Disease and tell the story of our little girl. I truly believe God sent us an angel when he sent Julia to us :)
Email us @ Juliasjourney@outlook.com