Summer With Livi

We've been slowly checking things off our Summer Bucket List, but it's been so hot here that it's hard to leave the AC after 11 am. We'll have to make a smaller list next summer. 

Livi's had two sleepover's at her Granny's so far this summer. 

Every time we visit her Granny we check out her Little Free Library to see what kind of new books have been added. I love that it's became routine when we go over there. <3

We've had quite a few playdates with her cousin Peyton and Korben. I love when she gets to play with kiddos her age. 

We've gone to the library more times than I can remember and have read almost 150 books so far this summer. We participated in Summer Reading Challenge and finished around the beginning of July.

We've put together tons of sensory bins with stuff from our kitchen. Water beads, play-doh, beans, kinetic sand, and little plastic animals= they keep her busy for hours. Dollar Tree for the win!

There's been lots of zinnia picking. I always love this time of year when our Spring flowers are blooming. Livi loves going out and helping cut them. 

Lots of swimming and fun in the sun! 

 Livi has had two infusions this so far this summer and has rocked both of them!

The food requests have been crazy! So, we've been doing a lot of snack plates and breakfast plates. Her and I usually share the breakfast plate. But, it's made it a lot easier that way I'm not making 5 different things.

Crafts, coloring pages, and drawing. It never gets old! She mailed out some pictures to her cousins and g-pa and sent postcards to her far away friends.

 Cars + Magna Tiles all day everyday.

We've probably had one too many donut, Publix cookie, and burrito bowl from Chipotle. But, they've been delicious and we have no regrets. 

Seriously!! That face! I love her so much! 

There's been weekly tattoos, which has been fun. At this point I wish I could get a real one, but I'm a big baby!

 We enjoyed the 4th with family, but missed fireworks because of rain. 

I wish I could count how many Target trips we've taken, but I'm sure it wouldn't be accurate. These past few weeks we've been on the lookout for all of the back-to-school stuff in the Dollar Bins. So, we've gone repeatedly. 

We still have a few weeks until school starts, so we're going to try and knock out a few more bucket list things. I still can't believe she starts school this year. 

Siesta Key 2019

Back from the beach and already missing it! We stayed at Parrot Beach Cottages again this year. You can't beat the 2-3 minute walk to the beach. We've stayed in room 1 and 4 so far since booking there. They are the same except room 1 faces the pool verses the back of another building. So, I'd say room 1 is the best there. My sister and her hubby have stayed in rooms 2 & 3. You can find most things in your room that you would need at home to make meals. Theres a fridge, stove, microwave, blender, extra cooler, towels (we always bring a few extra), and utensils. There is even some beach chairs and floats you can borrow.

There wasn't any sleeping in while we were there. Well, for me at least. I enjoyed walking the beach every morning. The first morning Olivia and I looked for shells. She really enjoyed that and found quite a bit. The second day she didn't want to go so Dannie and I went and we found two sand dollars for her. I went Saturday and Sunday with my mama. We didn't find any shells, but saw some dolphins and saw where a turtle had came up on the beach the night before. That was pretty cool! Livi got brave while we were there and started swimming in the pool without her floaties again. Her and Peyton were having a blast pouring bottles of water on their g-pa in the pool. They did that for dayyysssssss.

One of our favorite things about the location of the cottages we stay at is that it's super close to the village area. There are tons of stores and restaurants you can walk to. The first night we got there we ended up ordering BBQ from Nancy's BBQ on  on DoorDash, swam by the pool, walked the village, and watched the sunset. Sunsets there with my little family are my favorite too! On Thursday night we met everyone at Outback for dinner. Olivia had so much fun playing with her little cousin, Jackson. She also got in a lot of time with Peyton Rae since they shared dinner. Outback never disappoints when it comes to their food. I had the coconut shrimp and a grilled chicken salad. Friday night we ate at Island House Tap and Grill. Livi and I shared a burger and fries. Afterwards, we grabbed some ice cream and went and watched the sunset. Saturday morning we ate at The Village Cafe, which is our favorite place there. You get so much food and it's so yummy! Dannie and I just got eggs, bacon, home fries, and toast, but Olivia got a huge Belgian waffle. I also picked up a new coffee mug from there. I figure eventually I'll just have a collection of them. Saturday night we ordered food from The Hub Baja grill. It's always too busy there, so we order and eat our food by the pool. Last year, we ordered the Nacho's and the Hub Dip Sampler which were amazing. But, this year we chose the pork pineapple mango tacos. Once we were done eating, we showered and went to watch our last sunset with everyone and then walked around the village and shopped.

The weather was PERFECT the entire time we were there which is a little unbelievable because one of our past trips there it rained almost the whole time. It was so hot though. I think we only went to the beach for maybe an hour on Friday and Olivia didn't go at all. We were pretty toasty and red after all day there on Thursday. Olivia on the other hand doesn't even look like she went to the beach because we lathered her in sunblock every hour of every day. All of her medications say to limit sun exposure, so she wore rash guards, hats, lots of sunblock, sunglasses, and shoes when we were at the beach. One thing I recommend purchasing even as an adult if you are going to go to the beach is a rash guard for yourself! I think the older you get and especially if you have kids, the less you care about getting a good tan. I did NOT want to deal with burning, peeling, and just hurting. So, we lathered ourselves in sunscreen also. But, one of those days it didn't help and Dannie had a very red back and shoulders. So, he wore a shirt the rest of our beach days. We will for sure purchase rash guards next year for our trip. The water was so clear except for Thursday. There was so much seaweed to swim through.

Overall, it was a great vacay. As always! We really enjoyed time away from Ocala and our everyday routine and allll of the doctor visits. Not to mention LOTS of family time! Now that we're home those are all starting up again. Livi has an eye appointment tomorrow in Gainesville and we're looking forward to celebrating National Donut Day on Friday. Next week will be a little more mellow with one doctor visit in the middle of the week.

We made a summer bucket list and are excited to start that up. I'm also looking for a good Pre-K review book for Olivia. I found a few at Target, but need to go back and look at them and compare to others at Barnes and Noble. Let me know if you have any favorites that your children enjoyed.

Happy summer break! This is our last summer before Olivia starts school. <3

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