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

The Many Olivia Hashtags

I thought I would share some of our Instagram hashtags on here because we have soo many now. It's pretty bad that there are so many I have trouble remembering them. But, it's pretty fun that you can follow some of them on Instagram.

I created #babyarmas when she was born and we posted quite a bit with that hashtag, but eventually some other people's photos ended up mixed in. Once she was older, we made a new one.

So, from there we made #Oliviasloan. We still use this one for all of Livi's photos and I LOVE looking back at all of them. She's changed so much over the years and has gone through so much, there is a lot to look at.

#whatoliviasloansays is hilarious! 

#Oliviasloansleeps is a good one too. She still sleeps the same way she did when she was a baby and most of the time she sleeps with her arms up. 

Seriously though! So precious and look at those eyelashes. <3

If you know Olivia, you know how sassy she can be and you know ALL of her many facial expressions. In order to save them all in our memory, we added the #themanyfacesofoliviasloan hashtag to all of those special photos. Go check out her silliness! 

Another favorite is #oliviasloanposes. She's quite a little princess. <3

There was also #oliviasloandances for the few months that she was in dance class. I probably need to add to this one because homegirl loves to dance and I know theres other videos I've shared. 

There are lots of birthday related ones, but not a lot of photos in them. #oliviasloanturnsone, #oliviasloanturns2, and #oliviasloanturnsfive.

A new one that I love is #oliviasloandoesschool. I can't wait to add photos to that one over the next few years. I'm sure she'll love looking back through those photos when she's older. 

The library has became one of our favorite places. I started sharing the books we checked out a few years ago mainly because we had no way of looking back to see what we'd read. But now, it's became one of my favorite things to do after we go to the library. Livi also enjoys looking back at all of the books we've read even though she can remember them just by looking at the cover. Check out #livibugreads. 

I think that's about it. It's possible I've forgotten one or two, but these are all of the main ones. I hope you enjoy looking back at our Livi bug. <3

Olivia's 5th Birthday Interview

We celebrated Olivia's 5th birthday this past weekend with a little family get together. She's been wanting to have a dinosaur party for awhile, so we mixed that with a tea party. It all turned out so cute and she really had fun. These dinosaur tattoos were a huge hit! They weren't that fun washing off, but that's okay. The dishes we used were passed down to me, so it was super special that we were able to incorporate them into her party.

On her actual birthday, we went to breakfast at Bob Evans. She usually gets the Piggy Pancakes there, but opted for eggs, bacon, home fries, and pancakes. I was surprised because she almost cleared her plate. She told me she ate a lot because she's 5 and that's what 5 year olds do. She's also done a few new things over the past few days and they have all been because she's now 5. We spent the day with her granny and finished up the day at Red Robin because that's what she requested. She must've been tired of sweets from her party, because she didn't want anything to do with cake or ice cream on her actual birthday.

We've blown up balloons and put them out almost every year since she was one. She asked for them this year, so of course we had to do it again. Her daddy got to blow up all 15. Haha!

I thought we would start this birthday interview this year and then repeat it every year to see how her answers change. As you can tell by her answers, she's currently in love with all her toys. <3

What is your favorite thing to do? Color

Do you have any nicknames? Livi and Livi-Bug

What do you want to be when you grow up? Artist

What is your favorite thing to do with family? Play with my toys

Who are your best friends? Brooklyn and my cousins

What makes you happy? Playing with my toys

What do you like to learn about? Dinosaurs

What makes you sad? When you and daddy aren't playing with me

What do you do really well? Color pictures

If you had a million dollars, what would you buy? A bag of Fritos (Haha)

What is your favorite thing to do outside? Ride my jeep

If you could go anywhere, where would it be? Target

If you could have one wish, what would it be? Books! (That's my girl!)

What was your favorite birthday present? My horse for my Wellie-Wisher doll.

Favorites:

Food: Taco salads

Holiday: Christmas

Book: Betty Bunny Loves Chocolate Cake

Toy: My Marie (from The Aristocats) stuffed animal

Treat: Cake pops from Starbucks

Song: Shimmer and Shine theme song

Animal: Llamas, unicorns, and horses.

Movie: The Greatest Showman

Color: Pink and purple

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.