It's Been Awhile- Infusions, School, And Disney

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

The Summer Of Doctor Appointments

I feel like all we've been doing lately is going to the doctor. When Olivia was diagnosed, I just thought she'd be seeing a rheumatologist. Our sweet girl has seen a cardiologist, an allergist, dermatologist, gastroenterologist, infectious disease, and an ophthalmologist. It's possible I forgot one or two.

We have been tapering Olivia's steroids down weekly by 1 ml. So, every Friday we load up and head to Shands for blood work. If her labs are good, then we get to go down. But, last week her fibrinogen was low, so we didn't get to taper. On Monday she saw GI for the first time. The plan was to discuss a fecal transplant for her c-diff. She's been battling it off and on for about two years. Anytime she is put on antibiotics, it usually causes c-diff. She had it so bad back in October that she had blood in her stool for close to a month. Because she had lost so much blood, her hemoglobin levels were down so in turn we had to make sure she was getting a good dose of iron in her vitamins. Back to her GI appointment- we decided no fecal transplant at the moment. She really hasn't had a chance to get off of vancomycin because she's been hospitalized each time she's been on it. So, the goal is to taper her off the vancomycin and see how she does with that. It'll take 6-8 weeks to do that unless she gets any diarrhea, then we'll have to slow the taper. Once she's off vancomycin, the plan is to do Flex Sigmoidoscopy procedure to see if there is c-diff present in the colon. They also want to do a small biopsy and check for colitis and any signs of IBS. Hoping there is none of that!

I never posted about her last few hospital stay. She was hospitalized first a few days before our Siesta Key trip for cellulitis. She got a few days worth of antibiotics and we were given the okay to go on our vacay. She did fine while we were at the beach and her feet looked much better after soaking them in salt water for a few days. Three days after we were home she started having daily fevers. She saw infectious disease on June 6th and she developed a rash at that appointment. We called her rheumatologist and ended up going for labs after leaving her ID appointment. Her labs were elevated and her appetite had decreased, so they decided to admit her to the hospital. During her stay she was given daily shots of Anakinra and IV steroids to help control the rash and fever and to help her get better. Her fever stopped after the first day being there, but her rash stuck around a few more days. Some of the labs we look at when she is flaring is Ferritin, Sed rate, CRP, Liver enzymes (AST and ALT), Fibrinogen, Platelets, and WBC. It was a horrible rash and it was itchy, which isn't like other rashes she's had. She hasn't ever had a rash while being on ilaris, so we weren't sure what to expect. Since she didn't sleep a lot at night because of the itching and steroids, she would sleep all day. Hospital stays are never fun. But, once her labs started trending down and she was eating better, they had said we could go home. She had to go home on oral steroids and that is what we are still tapering down.

We haven't done too much this summer after our beach trip. We've been a little nervous about taking her out in the sun for an extended amount of time. One of her prescriptions says to limit sun exposure. The mosquitos have also been terrible with all of the rain. They love to bite her, so we have to spray her down when she does make it outside to play. Disney movies, library trips, cousin playdates, and lots of coloring is all we know right now.

Even though I'm not ready, Livi will be starting some Pre-k stuff in a few weeks. We'll be doing it at home since she is immune compromised. I have quite a few books. I just need to get her a desk, make a plan, and organize everything. Sounds like a lot and it is! We'll see how it goes. It'll be interesting for sure because she only wants to work on school related stuff for about 10 minutes right now. Let me know if you have any ideas on keeping a 4.5 year old entertained with school stuff. I need all your ideas!

Other than all her doctor appointments, I've been working on a Facebook Group page for Olivia. I was updating my facebook and tagging Dannie in the posts. But, I thought a group page would help keep it all in one space and she can take over it when she's old enough. With all of the bills that have been coming in, we started a small fundraiser. We've been selling wristbands to help raise awareness and help with some of our bills. We are super thankful for everyone that has helped out so far! :)