Juvenile Arthritis Awareness Month

Since July is Juvenile Arthritis Awareness Month, I thought I would share some of Olivia's story. So, here goes...Olivia was diagnosed with SJIA/MAS at 10 months old. It started with a rash that lasted about a week. During this time the rash would almost disappear during the day and return at night. She was also experiencing fevers that would fade during the day and return at night. We had made several trips to see her pediatrician and at first they just thought it was a virus. After a week of this, they did some blood work and found that her WBC (19.5) was extremely high. They were still thinking it was due to a virus and said to monitor her over the weekend and return on Monday if she wasn’t any better. This didn’t seem accurate to us because she wasn’t showing any other symptoms that would make us believe it was a virus.

The day she was admitted. -2014-

We returned to the pediatrician on Tuesday and they did labs again to check her WBC and it was even higher (30) than it was on Friday. Unsure of exactly what was going on, he recommended we take her to the closest children’s hospital. We ended up seeing Infectious Disease, Rheumatology, and Hematology while there. Since Olivia couldn’t walk yet, we were unsure of any joint pain. She never seemed like she was in pain at all, but they did point out some areas that looked swollen. While there, she underwent a Bone Marrow Aspiration, a Lumbar Puncture, a TB test, a PICC line in her arm, lots of imaging, and lots of blood draws. She stayed in the hospital for three weeks total. We were there a whole week before they had an idea of what was going on. They began daily injections of Kineret and some steroids the second week and it cleared up her rash. They had sent off some genetic testing that tested for HLH also and she was put on extra medication for that until results came back. At the end of the three weeks, she was sent home on high dose steroids, Actemra infusions which were every two weeks at the hospital, Dexamethasone, and Cyclosporine.

This is Olivia now. -2017-

As she continued these medications at home, she began getting really puffy from the steroids and the Cyclosporine was causing hair growth. Our precious girl didn’t look like herself anymore, but she didn’t let any of that get in her way. She was always making us laugh no matter what she was doing. We were eventually able to wean off of some medications and change others. She ended up having an Anaphylactic reaction to Actemra, so we switched back to Kineret because it worked well for her in the hospital. Her HLH testing came back and it showed she just had MAS.

She’s now 3.5 years old and has had a few flare-ups with MAS, but we have been quick to get it under control. She is currently on Ilaris once a month and Prograf daily. She is very active and has shown that she loves swimming. We weren’t sure that she would ever make it to this point, but she’s showed us just how strong she is. If your interested in donating to The Arthritis Foundation, you can visit here. Olivia received a Power Pack a few months after she was diagnosed and really enjoyed opening it. She loves Happy Mail. If you haven't heard of it and have a child with Juvenile Arthritis, you can sign up here. Last but not least, if you want to raise awareness for Juvenile Arthritis, you can shop their site. We've ordered bracelets and I love their shirts. :)

Siesta Key Recap

Well, we finally got a vacation! I don't think we have traveled to the beach since the summer of 2015. We stayed in Siesta Key for four days it was much needed. It's so nice to get a break from our every day routines. No dishes, cleaning, or work for four whole days! Our only worries were if it was going to rain and where we were eating dinner.

We left on a Friday and our check-in time was 2 pm. I think we ended up finally leaving our house around 11:30 and we arrived at 2:30. The weather on Friday was gorgeous. I think we unpacked some once we got there and then headed to the beach. It was pretty hot so it didn't take us long to get in the water. Our little home away from home was probably a three minute walk to the beach. We stayed at the Parrot Beach Cottages. We stayed in Suite 4 and it had the cutest distressed blue wood on all of the walls. It came with a queen size bed, a pull-out sofa in the living room, small dining table, small kitchen, a bathtub, and all of the kitchen utensils you could think of. It was small, but we didn't need much since it was just the three of us. There was a pool, but we didn't swim since we were so close to the beach. There was a small grocery store (The Siesta Market! It's so cute!) within walking distance so we picked up some eggs, milk, and sausage to cook for breakfast. For lunch we made turkey and cheese sandwiches on Hawaiian rolls. Then, we would eat out for dinner. That helped us save money!!

I can't believe how fearless Olivia was in the water!! She would go out with us and wear her Puddle Jumper. Dannie found tons of sand dollars, but we didn't keep any since they were still alive. Unfortunately, we didn't see one sunset while we were there. Most evenings it was either raining or we were at dinner. For dinner the first night we decided on The Old Salty Dog. It was about a ten minute walk from our room. One of the things we like most about Siesta Key is that you can walk everywhere if you stay close to the village. When we're on vacay we don't want to drive unless we really have to. I think I ordered the charbroiled chicken, a house salad, and fries.

The sunset that we missed.

The second day, we got up and we were at the beach by 8:15. That's mega early for us to be up and motivated. I was pretty surprised! Everyone else joined us around 8:30. We were able to stay at the beach until around noon that day due to rain. Sadly, it rained most of the day so we napped and ventured out to a few stores. We picked up a Siesta Key sticker for my car, a postcard for The Rex's, and some mini donuts. If your going to SK and love donuts, you have to stop there! We tried the cinnamon & sugar, powdered, and glazed with sprinkles. They were so good we picked some up after dinner that night too. Calories don't count when your on vacation, right?! Since it was raining we weren't able to walk to dinner that night so we all decided on Outback. It was SO yummy! I've been having some stomach issues lately, so I had to make some smart choices when ordering food out. I had grilled chicken, mashed potatoes, the most delicious house salad, and a glass of White Zinfandel. Of course I had some bread and a few bites of a blooming onion too! ;)

Day three we got up super early again and went down to the beach around 8:30. We stayed at the beach until about 11. Then, packed up our beach stuff and grabbed some pizza and met up with some family at their condo. It was fun to be able to get together with them since they live in Tennessee. Olivia also enjoyed having someone to help her look for shells and dig in the sand. Usually anytime we go to SK, we get pizza from Solarzano Bros. Pizza. Since we were in a hurry, we just ordered a pepperoni and cheese pie. We've had their greek salad and it's to die for! I'm sure everything on their menu is amazing and you can just order pizza by the slice also. We had a blast at the beach and wore the littes out too! I don't think we left the beach until around 4. We had time to go back to the room and get a little nap in before getting ready for dinner. Our goal was to meet at The Hub Baja Grill for dinner, but the wait was an hour and half and the rain was about to start. We decided on Nepoli's and it was pretty good. I just had a salad and cheese sticks. Dannie had Shrimp Fettuccini Alfredo. If you can't tell by now, we love food and love to try new places. We walked around some stores after dinner and then hung out with The Braswell's in our room until we were all about to fall asleep. 

Monday was check-out day. I was up at 7:30, showered, and finished packing everything up. Then, I woke up Dannie and Olivia. Once we were all checked-out we met up with everyone and ate breakfast at The Village Cafe. Literally, the BEST breakfast EVER! The service was great and the food was exceptional. I ordered a pretty simple breakfast with scrambled eggs, bacon, home fries, and sourdough toast. Maybe we were just hangry by the time we finally ate. But, it tasted better than our normal breakfast spot which is Cracker Barrel. We will definitely make it back there on our next trip. 

Reading back over this it sounds like we ate a lot, but we really didn't. We just went to different dinner locations each night. Haha. SO, if your in Siesta Key, you know where you should be eating! We really enjoyed that everything was within walking distance, but Dannie and I agreed that we missed how secluded and quiet the beach is when we stay at Longboat Key. Granted, we do have to drive everywhere there, but almost having the beach to ourselves is pretty nice. We will have to weigh our options when we start planning next years trip. What we love most about the beaches in the Sarasota area is clear water and the white sand. We don't care for big, huge waves like the Atlantic side and the water temps are always tolerable on the gulf side. Oh!! I almost forgot and less shark sitings in the gulf. Olivia came home with lots of shells and a few stories to go with them. She enjoys putting them up to her ear and listening to the ocean. She did really well the entire trip which made it easier on us and the salt water helped her peeling feet and hands. Woo hoo! 

Belly Nostalgia

In honor of Olivia turning three at the end of the week, I thought I would post some maternity pictures. I can't believe it's already been three years. I'm so sad, but can't wait to watch her grow.

She's such a little jabber box. She's constantly asking us where things come from is always dancing. She's became really shy when she's around others that she doesn't know, which is funny cause she used to be so open and would chat with anyone.

She still loves all things Disney. We probably watch Trolls every day. She's probably memorized the whole movie and every word of every song. She's been day-time potty trained for a few months now. We recently purchased a chore chart to see how she does with it. Like any other child her age, she refuses to pick up her toys after she's played with them. This Saturday, we'll be celebrating her birthday with a donut cake instead of the traditional funfetti cake.

11 weeks. 

14 weeks. 

15 weeks.

It's a GIRL!

Week 16.

Week 18. 

Week 20.

Week 21- Looking very tired.

Our name reveal <3

Week 30- Almost there!

Week 31- Yay for warm maternity clothes.

Week 32. 

Week 34..maybe?!

Week 37- I was running out of clothes. I was stealing Dannie's shirts. 

Week 38.

Did I mention I was stealing ALL of Dannie's clothes at this point. Pj's that is. 

Week 39. Ek! 

Week 40- Feeling large and in charge. 

January 24th- appointment to check fluid levels

January 27th- My water broke. I was scared too death!

January 28th, 2014 @ 12:17 pm. She was 8 lbs. 0 oz. 

Olivia Update And Christmas Photos

I'll love you forever.

 Well, I just cant grasp this whole blog thing. It's been awhile since I've updated again. I feel like I'm always saying that. It's just hard to sit down and find time to type.

Our little arthritis warrior started a new medication in November. We were able to stop the daily shots (WOO!) She's been doing very well on the new medication and hasn't showed any arthritis related symptoms like it isn't working. She has to have blood work done to check all of her levels and to make sure her liver numbers are where they should be. We travel to Gainesville once a month and a nurse in Rheumatology gives her the shot. Dannie could learn how to give it, but the medication has to be mixed ahead of time and believe it or not, before insurance each shot costs $15,000!!! So, that's why we don't want to take the chance and mix it at home and give it ourselves. That's a lot of money and we don't want that responsibility! Our insurance helps us out a lot with it. So thankful for that!

She did flare a few days after her first shot. She fought a fever for a few days and we were unclear the cause. Come to find out it was a horrible ear infection that caused her to flare. Nothing IV antibiotics and steroids couldn't help with though. She got the highest dose of IV steroids she's ever got and in a very short period of time. So, the week following was very rough for us all.

Besides the new medicine, she's just been her normal self. A little bit of sweetness with a whole lot of sass! We have to be careful what we say around her because she copies everything. Apparently, she heard me say "You scared the crap out of me" one day, so, she likes to say that phrase sometimes. Luckily, I didn't say another word though. Her vocabulary is expanding and it's just crazy to me the things she knows. She's acting so big and I can't believe she will be three next month. One day I plan on just writing down everything she says in a day and sharing it because I feel like I miss sharing so much.

It saddens me that she has no friend's or anyone to play with. She has so much love and would love to have friend's. If it's your first time reading, she is immunosuppressed from her medications. We have to be extra careful who she is around during flu season. A few weeks ago we were at Cracker Barrel and her and another girl her age were giggling and making faces at each other from across the room. Times like that make me so sad. We try not to be helicopter parents, but we just can not end up back in the hospital with her. I think it's extra hard on us too because we sometimes feel alone. We have been very fortunate to find a Facebook Group that allows families with SJIA children to interact with one another.

We are very excited for December and to celebrate with family. I was just telling Dannie yesterday that we have so many Christmas decorations in the house and I love it! I hope that Olivia is enjoying it as much as me. It makes the house feel so much more homey and happy. Yesterday, I spent the day cutting out images from my Silhouette so that I could make an advent calendar for Olivia. On the back of each image has a daily activity for us for that day. Today, we got donuts. No complaints from our little Livi Bug on that. Not just any donuts, they have lots of red, green, and sprinkles! Dannie put up lights on almost the whole house this year too. ♡ 

Here are some of Olivia's Christmas photos we had done by the lovely, Pinknsparkles Photography. 

Those red nails. ♡

I love her expression here. It's like she's thinking "Yeah, right!" 

So innocent looking, but she really kept tossing that pinecone out of the truck every few seconds.

Florida snow! 

Please stay little forever!

Prettiest girl I know. 

She says she's one strong little lady! 

What's Up With Us

Well, hello! It's been a long three and half months and it's been quiet on here. I need to get into the habit up updating at least once a month or when something really exciting happens. I could say that we've just been really busy, but that's not been the case. Life gets in the way and I have trouble finding time to sit down to type on here. 

We got to celebrate Baby Peyton in June. She is just the cutest thing ever and has the prettiest blue eyes. We really enjoy getting to snuggle her and are so excited about Olivia being able to do some girlie things with her little cousin when she's older. Olivia also finished her swim classes for the month of June. She's still pretty fearless in the water, but I can't say that I was very impressed with the place we took her. We also celebrated Dannie getting his bachelor's degree. He will get to walk with his class in Orlando in February. He's spent a long two years studying and staying up late every night and it has finally paid off. We are super proud of him! :)

Dannie and I had tried to eat better and start exercising, but a stressful event happens and throws us off. I have gained about 15 pounds since last year and it's taken a toll on me. I've been taking daily probiotics lately because it seems anything I eat (usually not the healthiest) upsets my stomach. The probiotics have been helping, but I know I won't feel 100% better until we change what we're eating and are exercising. We didn't do anything for the 4th of July this year because Livi had a cold. But, we did make up for it with eating bomb pops pretty much the whole month of July. I think we watched the neighbors fireworks and Olivia thought they were too loud. Olivia discovered Zootopia in July and it quickly became her favorite movie. 

Olivia recently had a flare-up. She didn't have a cold or anything so it was a mystery at first as to how it all started. She just woke up one day with a fever and that escalated into a rash. Unfortunately, this happened on a Friday and her doctors are not in on the weekend. So, we either had to take her to the ER or wait it out to see if it got worse. After speaking to her doctor, they thought giving her two injections a day may help instead of bringing her to the hospital. It did actually help. We were able to take her in for a check-up and all of her labs were elevated. So, it was decided to go up on her injection dose to 1 full syringe once a day and also up her oral medication. We are still trying to work out all the kinks with the oral medication though. She seems to get itchy when we go up on the dose. 

September is one of the busier months for us. It is my parents anniversary, my sisters birthday, grandparents day, and we are adding a ice cream fundraiser to benefit the arthritis foundation this year. We are pretty excited to be helping out the arthritis foundation. It may just be a small fundraiser, but some our close friend's and family will be able to help out as well. 

It's been really hard keeping Olivia busy lately. We've been working on some small crafts I found on Pinterest, but it only keeps her attention for about 10 minutes. I can't wait until it starts cooling down outside so we can spend more time outside. I see lots of trips to the park in our future. I've been thinking about pulling some fall decorations out, but I'm really trying to control that urge because it doesn't feel fall-ish quite yet. A lot of our favorite shows came back this month so we've been keeping busy with those in the evenings. 

Lots to look forward to in the upcoming months with fall festivals, the pumpkin patch, and holiday time :)

Off to Dannie's graduation celebration.

Disney World 2016

In May we went to Disney World for a few days. It was such a special trip. Not only was it Olivia's first trip, but we were able to meet another family that was going for a Make A Wish trip. We have been so excited to meet them!

It was very hot, but we made it through the day. We were soaked in sweat by the time we got on the bus to head back to our hotel. You should wear as little clothes as possible in the warmer months when traveling there. Tank top, shorts, comfy shoes, hat, and definitely take advantage of the water rides. We purchased a fan for Olivia's stroller before our trip and also a misting fan. That helped a lot when we needed to cool off some.

We live an hour and half away from Disney, so its an easy drive for us. When we had made the decision on Disney we weren't sure where to begin. A friend of mine shared that she used a Disney Vacation Planner. She was super helpful! I just spoke with her and gave her the details of our trip and she got back to me with the rates. Once we made our decisions, she set it all up.

We were able to get a third park day for free, so we made sure to drive down a little earlier on our first day. Once we got to our hotel and unpacked everything, we headed out to Animal Kingdom. We stayed at The Port Orleans Riverside hotel. The hotel was nice, but we knew since we would just be sleeping there that we didn't need anything super extravagant. Our only concern was that it had a mini fridge in the room for Olivia's medications. It was so nice not having to drive anywhere there since we were staying at a Disney Resort. We rode the bus to and from all of the parks and only drove the night we went to Disney Springs.

You can't tell in the photo, but it was SO hot! We saw the Finding Nemo show and rode some rides at The Animal Kingdom. It was Olivia's first time riding any kind of ride and she was fearless! We loved the safari ride. She got to see all kinds of animals and enjoyed the ride too. In between doing the safari ride and playing in the bone yard, we met up with The Rex family. It was so incredible! I'm usually pretty shy, but it was like we had known them forever. Olivia and Brooklyn were instant besties. We've been waiting to meet them since last year when they came over to the states for Brooklyn's medical care.

After the park we went back to the hotel and napped. The best part of staying at a disney resort is being able to go back for NAPS, especially if you have a little one. We met The Rex's for dinner and to celebrate Sam's birthday.  Dinner was at The Boathouse and it was oh, so yummy!

We went to Magic Kingdom on Wednesday. We picked Magic Kingdom that day so that we could spend all day, go back to the hotel for naps, and then go back to the park for dinner and fireworks. I've been to Magic Kingdom before, but it's so different when you go with a little lady who loves every disney princess there is. I would say Olivia enjoyed herself, but the best part for us was just seeing how excited she got when she got to meet a character or on the rides. Hands down, best part!!

The fireworks show was seriously amazing! Olivia hated fireworks last year and really enjoyed these. I'm sure it had something to do with the awesome company we had with us, but she wasn't scared at all. She met Anna and Elsa and rode the teacups and loved it. We realized after all of her character interactions, that she does better meeting characters in full costume. If she could see their face, she wasn't a fan. Her meet and greet with Anna and Elsa didn't go as well as we thought it would. Brooklyn loved it though and even danced with them :)

Best Day Ever!

Our last day was spent at Hollywood Studios. There was so much Star Wars and Toy Story stuff there. Olivia was in heaven. Not to mention she got to meet all of her favorite disney characters. She would get so impatient waiting in line though. Maybe she will be better with that the next time we go back. We were pretty exhausted though because we didn't leave Magic Kingdom until around 1:00 am. Dannie's proudest moment at Hollywood Studios was when Livi used the force on one of the Storm Troopers. I wonder who taught her that?

This was such a sad day for us because we had to say our goodbyes. The ladies spent some time together with the littles while the boys rode Tower Of Terror. The entire trip Brooklyn and Olivia were holding hands and running around playing and if they weren't together, they spent their time figuring out how to jump out of their strollers so they could be together. We could have met them anywhere honestly as long as they could have been together. The princesses were just a bonus.

A Sam selfie :)

The girls playing with their princesses.

Olivia didn't want to let go of her hand. 

Meeting Doc McStuffins

<3