My Little Prize Fighter

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.

Thank you Catch A Dream Foundation!

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.

Doing the Happy Dance!

Julia started High School last week. So far she is loving it!! Julia & 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 back row.

It's Summer Time!

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 Update

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 :)

Chugging Along

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.

Wrapping up Youth Fair Week

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 whopping $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!

Snow Day

I almost forgot to post about all the snow we got during our Feb visit to NIH. 18" fell over night and made for great sledding & snowman building.

One Tough Cookie!

Yesterday was a little rougher than usual. Julia had her LP in the morning, but for some reason there was a little trouble getting the needle in & then when they did she could feel it. She cried because it hurt so badly. It's moments like that that make me question if we are doing the right thing by putting her through all this, but ultimately I know that answer is yes! It is absolutely worth it! While we are not seeing improvement by leaps & bounds we are seeing stability & that is huge. The good news is we also have ideas for next month to ensure Julia doesn't have to be in pain for next months LP. After her LP was done Julia had a visit from a therapy dog named Donizetti, or Doni for short. It really helped her feel better after the painful morning.

Quick Update

Back for our monthly visit @ NIH. All done with today's appt's, going to cut out of the hospital for the day & maybe go on the free trip to the movies this evening. Sounds like a good time to me. Tomorrow will be spent here @ the hospital for her medicine dosage :) Hope everyone stays warm!!!!