Well, it's been a few months. I guess that's becoming more of the norm instead of updating monthly. But, here goes...
Just a little recap of the meds she's on- In March Olivia started Remicade, which is an infusion. She started Remicade for Crohns and Psoriasis. She stopped ilaris, which was the monthly injection for SJIA. She's still on Tacrolimus which is for MAS (Macrophage Activation Syndrome) and we recently tapered down her steroids to 1 ml. The steroids were to help with the inflammation they found during her last colonoscopy. Small victories with the steroids!! She's been on them since January 15th and they really suppress her immune system quite a bit as well as have other long-term side affects. So, the goal is to get her off those as soon as we can, IF we can. I almost forgot the weekly Methotrexate shots. She kicks butt with those and helps Dannie most of the time. So, being able to to eliminate one of those meds is awesome. That's quite a list for our girl.
Her labs have also been pretty good, but we won't 100% know how her SJIA is doing until we can get her off steroids. Right now, they might be the only thing helping her SJIA. Remicade was used many years ago to treat SJIA, but once other biologics were approved they started using those instead. So, we aren't sure if Remicade will be enough once off steroids. It's all a waiting game.
Her little body has been tolerating the infusions well. It's just a lot for her in one day. I wish it didn't take as long, so we have to make sure she's comfortable while we're there. They have to pre-med her before which consists of Benadryl, Tylenol, Zantac, and IV steroids. Then, Remicade runs over a 3-4 hour window. Sometimes she naps after Benadryl, but on her last infusion she stayed up the whole time. So, we usually bring lots of snacks, we usually always make a trip downstairs for lunch, we bring the iPad, she picks out movies, we bring lots of coloring books, and other paper entertainment. One thing she doesn't leave home without is a stuffed animal on those days.
Olivia and I started counseling recently. It's been helpful to chat with someone about all my feelings and stress. But, it's also been hard opening up to a stranger. I'll admit I'm not the best when it comes to talking about my feelings. Especially with someone who may not completely understand the stuff we have to go through. Most days I don't think a lot of people understand why we do what we do. I've been dealing with a lot of things lately that I don't fully understand, but it's out of my control so all I can do is learn to move on. Some days I think about not going anymore, but I'm sure I would just continue to bottle all of that stuff up and I'll let it all out at the wrong time. Olivia's been doing well too and is starting to love her time there.
We've still been working on school work and continuing our library trips. We bought Livi some
Fancy Nancy "I can read" books and she's on book 4 this week. There's 12 books in the collection and each book focuses on adding new sight words and Fancy Nancy words.
It wouldn't be spring without planting zinnias! We've planted so many this year and already have so many sprouts. I can't wait until they are all up. We also made a new flower bed in the back next to the patio. There is still some things I need to finish, but for now, we love it.
We have weekday Disney passes so we are only able to go when Dannie is off work or in the evenings. Even though that hasn't happened a lot recently, it's still been worth just going once. I know some people wonder if it's worth paying for annual passes and YES IT IS! If we would've just gone once in an entire year, it would've been the cost of just going for 1-2 days. That doesn't even count staying anywhere. It's a nice escape for us and I know some people may not understand why we still go, but it's our only outlet when we can go.
With that being said, the next time we take an all-day trip we are plan on documenting it so we can show everyone what we do. When people think of Disney, they think of a huge place FULL of people. Why are we taking Olivia there if she's so immune-compromised? Unless you've gone yourself, you may not understand that there actually is a way to avoid some of the crowds. When you think of allll those people, you may think we just wait in lines all day with other people. Not true! We get three fast passes a day and once we use those up, we can pick three new ones, but only one at a time. Some of the rides we go on at Disney are outside, so that helps, but anytime we wait in a line Olivia wears her mask and we always use hand sanitizer after each ride. I know this doesn't keep us 100% safe, but it gives Olivia a chance to have some fun. It's also been cleared by her doctors and they feel like Olivia needs some excitement as well. These are just a few of the things we do. Can't wait to document our next trip!!
We have quite a bit of stuff happening this month and I'm so excited to share it all with you! <3
