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

End Of The Month Recap

Hello! It's been awhile. Not a lot happening over here. I feel like we've became homebodies this winter. We have a few places that we go (my moms, the library, shands, target, and the grocery), but other than those spots we have been staying put at home. We are REALLY missing Disney and haven't gone since October or November. I can't even remember at this point, because hello Measles outbreak!! We are allowed to go and she'll wear her mask, but she's still on a pretty high steroid dose atm and she'll be starting a new med soon. With all of those added immune suppressing meds, it's just not a good idea right now. For those of you that don't know, she can't get any live vaccines. So, she would be at risk for anything she's not immunized against.

I feel like we are flying through Livi's school work. This week we are on letter R. We are still just using Pre-k and Kindergarten books that I've purchased at Dollar Tree and Walmart. We've probably gone through 1-3 Number books and I've had to purchase a few different learning sticker books because she loves them and we finish them quick. She can now recognize 27 sight words, which I think is pretty awesome. All of the crafts that she does I find on Pinterest. You can find everything on there. I've found a few books that have everything in them and I plan on reviewing them with her over the summer. She'll be doing Florida Virtual School for Kindergarten. Eekk! I can't believe I'm even saying Kindergarten. I'm not ready for that yet!

Since being glued at home, we've been doing all of the puzzles, Highlights Hidden Picture books, paper dolls, book reading, coloring, and crafts. Obviously, we watch movies and tv too when we have time. Spring is in full swing over here, so we can't stay outside long unless we want to be covered in pollen. I'm looking forward to planting our zinnia's and sprucing up our flower beds when some of the pollen is gone. 

We had a little Galentine's get together this year. It was so cute and fun! The girls did a craft, we ate some yummy snacks, and they did lots of playing. So much that they didn't want to leave each other at the end which was so sweet. My girl needs that time. <3

Despite all of the news we've been receiving lately, I finally feel a little better about everything. Olivia is at a point right now where her attitude is better. Which has helped a lot. We know it was the steroids making her act that way, but it made everything tough for awhile and once we start tapering down on them, we know it'll happen again. Until then, we are just taking one day at a time and enjoying it with each other. I can only control so much, so we just have to roll with it. 

Trying to remember what else we've been up to...

Olivia had a sleepover with her granny and g-pa one night which meant a date night at home for Dannie and I. That meant we got to order pizza that we like and not just cheese for Livi. She's had lots of testing done this month and we've got back all of the results. Meaning lots to talk about, but I'll save that for another post once she starts the new meds. 

Lots of library trips and we even stopped at a Free Little Library after our Shands trip last week. I could drive around Gainesville all day because it's so pretty.

Just counting down the days until I can take pictures of our zinnias and Livi playing in the pool. It's coming. <3

Olivia's 5th Birthday Pictures

It seems like yesterday that we were counting down to your due date and now we are just constantly laughing at all your goofiness. I can't believe that in two short weeks you're going to be 5. You've grown into such a beautiful little girl. You've gone through so much in such a short amount of time and I am so proud of you. You've been tough when you didn't have to be and your strength amazes me. You'll always be my baby girl.

A little shy and unsure what to do at first. Her expression says it all and I love it! 

So many different poses. She really opened up after awhile. 

My baby girl is going to be F-I-V-E!

Of course she had to bring Chica Linda along. 

My girl. 

I don't even have words for this one. It's probably my absolute favorite. 

Twirl that dress, girl. 

That smile melts me. 

This one too. <3

She tossed a piece of mulch into the fountain after this and made a wish. 

December Recap

Most of our December was spent cuddling on the couch watching Christmas movies. If we weren't doing that, then it was either crafts, reading books, or eating sweets. We didn't do a lot of family stuff at the beginning of the month because there was a lot of sickness going around, so we quarantined ourselves to the house. That was hard because we missed family, but we made it work and mainly just tried to keep Olivia entertained. 

We also took a lot of sunset walks around the neighborhood. Olivia chose to drive. 

We got to see family on Christmas. Woo hoo for Olivia spending the day with all her cousins. <3

On Dannie's birthday we went to Red Robin to enjoy some of our favorite burgers. If you haven't gone yet, you have to! I usually just get the bacon cheeseburger, but it's SO good! Olivia brought along Camille. 

It just blows me away how big she is getting. 

Big smiles with Peyton Rae!

And this is the delicious burger I was talking about from Red Robin. My mouth is watering looking back at this photo. 

Fancy Nancy and her daddy on Christmas morning after breakfast. I love making breakfast with these two on Christmas day. Then again, I love doing that every morning with them. 

Olivia helped me make cookies this year. We had a girls day with the family and made some, but it was a no peanut cookie day. So, Olivia and I made no bake cookies and peanut butter cookies another day. They were delicious and she was such a good helper. 

New Christmas Pj's! Paw Patrol is on a roll! 

We mixed some coloring time and reading! Love The Nutcracker! 

Our yummy cookies! I swear rolling the cookie dough in sugar before baking made a huge difference. It was also my first time making homemade peanut butter cookies. Usually we just do slice and bake. 

Lots of hot chocolate, coffee, and cuddles. Especially, on cold days. 

We did school work from bed a few times also. Whatever helps get it done. We had some pretty rough days, so if I could keep her focused on school work, it didn't matter where we were at. 

I miss our tree already! It was so pretty to look at. 

We took Olivia off-roading to look for bear prints. Didn't see any, but we snapped this cute photo of her. This is Christmas in Florida- sunshine, shorts, and jeep riding. 

We missed the Ocala Christmas parade, so we went to the Dunnellon one. First timers over here! But, it was so much fun. Not too long, which was good and it wasn't too cold out either. 

Some of the crafts we did. 

Another day, another Christmas movie. 

She had finished this entire coloring book within two weeks. Girl loves to color. 

Can't forget out library trips! We usually make our rounds between Dunnellon, Belleview, and Freedom library. We like them all and they all offer a pretty good selection of books. 

Can't forget New Year's! We finished off the month watching the ball drop in New York on tv. Olivia and I were barely awake by midnight, but we made it and "cheersed" our champagne and sparkling juice. Lots to look forward to in 2019!