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

Brooklyn's SJIA Story

I've been wanting to tell Brooklyn's story for awhile, but every time I get close to working on it, I get nervous. It's not OUR story, so I get scared that I might miss something or tell it wrong. You might notice Brooklyn's story is much like Olivia's story, but it clearly has it's differences.

Brooklyn is currently 3 years old. She is a very spunky little girl that loves playing outside and Sophia The First. They are currently staying with her grandfather in Texas. Brooklyn receives care in Dallas which is an hour drive from their current residence. Brooklyn was recently approved for Make A Wish and they will be making a trip to Disney in a few months so Brooklyn can meet Sophia. We also get to meet them for the first time since they will be an hour and half away from us!! :)

I first met Brooklyn's mom, Samantha, through another mom who's daughter had HLH (Hemophagocytic Lymphohistiocytosis) At the time we were both waiting on genetic testing to come for HLH. The Rex family was living in Durban, South Africa then and had been traveling to Cape Town, South Africa for most of Brooklyn's care. Not only was it amazing to be able to speak to someone who knew what we had been going through, but we also looked to each other for support. Just goes to show how awesome social media is that you can meet someone so far away and end up finding a best friend.

Brooklyn was first hospitalized in April 2014. It all started with a rash and a fever. Her rash would come and go and get worse at night. Her fever, however, lasted for about a month. Medicine eventually would not even keep it down. She was tested for everything and was even first treated for Kawasaki Disease. When her body stopped responding to the medications for that, her doctor recommended testing for HLH. Testing for that included a Bone Marrow Biopsy and a Lymph node Biopsy. Testing for that came back positive for Macrophage involvement. Researching further, they came across Juvenile Arthritis. Through both of those they were able to find out about Macrophage Activation Syndrome (MAS). MAS is very serious and can cause life-threatening issues if not treated. Since there was not a physician in their area that had dealt with any of the mentioned diseases, they made a decision to fly to Cape Town to be evaluated.

Once they arrived in Cape Town and Brooklyn was evaluated by the pediatric rhuematologist, he said she had the worst case of Systemic Juvenile Arthritis he had seen yet. SJIA isn't something that just goes away, there is no cure. She was started on Methrotrexate, which is a form of chemotherapy, as well as, high-dose steroids and Cyclosporine (which helps with the MAS.) They had also spoke about starting her on a biologic. At the time, they discussed Kineret, which is a daily injection. This specific drug would cost them around $4,000 a month. Because Brooklyn needed this medication to survive, they made the choice to put on her this drug and do whatever was possible to have her treated. Since this medication is not something they could get in South Africa, it was shipped to them from the UK. They ended up taking her off of methotrexate pending genetic testing.

Fast forward a few months later, Brooklyn had been doing well up until she woke one morning with joint pain. She had also began getting rashes almost daily. They were under the impression that Kineret was no longer working for her. Her rheumatologist decided it would be best if she try an infusion called Actemra. Since this medication had to be administered every two weeks, their only choice was to move to Cape Town temporarily. [Olivia had been put on Actemra also when she left the hospital] Brooklyn had been doing well on Actemra, but was due for her third dose. Unfortunately, this medication caused her to have an anaphylactic reaction during this appointment. There was another medication she could try, but it wasn't something that was easy to be shipped to South Africa and Brooklyn didn't meet the age requirements for it yet. Their only option was for Brooklyn to start Kineret again and raise the dose of that and her other medications.

They had spoke to Brooklyn's grandfather a few times regarding possibly coming to the United States for care. It was clear that she was not getting the medical care she needed in South Africa anymore. Unfortunately, all of Sam's family and some of Darryn's live in SA, so that meant leaving them for awhile. But, when they found out Brooklyn was eligible for a consultation at Cincinnati Children's hospital that persuaded them to try it out.

After arriving in Texas, they made appointments with doctors in Cincinnati and tried to find somewhere to stay while being up there. Brooklyn was seen by a nutritionist, as well as, physicians from hematology and rheumatology.  She had labs done and also genetic testing done by them. After running out of funds to stay there and getting an estimate of how much it would cost to stay there for care, they packed up and went back to Texas. They were still waiting on genetic testing results. A few weeks after being back in Texas they received results and it showed Brooklyn didn't have any genetic mutations for HLH. With that being said, Her diagnosis would then be Systemic Juvenile Idiopathic Arthritis with complications of MAS.

Brooklyn started Methrotrexate once again, but was weaned off of cyclosporine and steroids. Brooklyn has been doing better, but every day is a struggle because her medications suppress her immune system. She can't go out and play like other kids. They have the constant worry about her getting germs and becoming sick all the time.

They are really struggling financially when it comes to household items such as cleaning supplies, diapers, wipes, and groceries. They don't have their own car so they have to borrow family members whenever they need to run errands or go to appointments. It's been vey rough adapting to living here and not working. They are here on a visitor visa which has to be re-applied for every 6 month's. They have to re-apply through their attorney that is here. They pay an additional $2,500 a year for that service. They are also still paying for Health-Aid back in SA because they aren't sure when they would have to go back. I have contacted a few local groups here in the US, but haven't been successful in getting any assistance for them which just breaks my heart. I was able to reach out to a sweet photographer in their area and she took some recent photos of them. [YAY!] If you have any ideas or if you know someone in the Dallas area that would like to help fundraise for them, please let me know. Also, if you'd like to send them anything, I can help you get in touch with them.

Here are some links to their pages:
Facebook: facebook.com/hopeforbrooklyn
Website: Brooklynrex.com
GoFundMe: gofundme.com/hopeforbrooklynrex (The money shown in the amount raised is not the amount they currently have. It does not reflect what has already been used)

Olivia's 2nd Birthday

Well, we ended Olivia's birthday watching Frozen again. I can't tell you how many times we watch that movie. We've also tried to limit the amount of Frozen items that come home with us, but Olivia really loves Anna and Olaf. It's hard to say no sometimes. I hope Olivia enjoyed her birthday. We started the day off playing with balloons. We thought it would be fun to cover our bedroom floor with them and surprise her when she woke up. I saw her peak over the edge of her bed and smile. She got down and started throwing them around and jumping up and down. Eventually she asked me to get down with her and play. After that my plan was to make her some birthday waffles with sprinkles, however, when I added the sprinkles it just turned the batter purple. They still tasted delicious though.

We tried to lay down around 11 for a nap, but someone did not want to sleep. We had already discussed with her that we were going to Target, so of course that's all she wanted to talk about. We picked up a toddler bed there for her and were able to use a $10 off coupon. I spent Friday trying to put it together. Big mistake that was because I ended up putting the headboard on backwards. Dannie helped me turn it around when he got home since I had spent most of my day working on it. We need to make an Ikea trip so we can get a few more things to finish her room. She got a Rapunzel doll from her friend, Brooklyn. She hasn't put her down all weekend.

We had a small birthday get together on Sunday with family and friend's. The theme for her party this year was OLAF! It was a hard choice since she's crazy about so many Disney characters at the moment. I made sure not to go overboard with making decorations this year. It's a lot easier and stress free to purchase it in a store vs. searching for it all online. She had a blast and got to play with her cousin Korben.

We took a picture of Olivia in the same spot as last year and it's crazy how different she looks. Last year she was still on high dose steroids, so she was puffy. She looks so grown up in this years picture. We plan on taking a picture of her each year on her birthday so we can compare them. It'll be nice to be able to give her all of them when she's older.

Our Life Lately

Well, I'm BACK! I've been wanting to post for awhile, but I just can't seem to find the time. If your wondering what we have been up to lately, we have just been living life. I started more of a routine around the first of the year with getting up early and working out. It really works well and I feel much more accomplished midway through my day. I have so much energy! If you haven't tried starting your day before the sun comes up you should. I HAVE missed a few days though, I can't say I've made every day count. This is usually how it goes though when I do get up early.

6:30 am - Get up, brush my teeth, and put on shorts and tank top. Workout for 30 minutes.

7:00 am- Get Dannie's work clothes ironed and his lunch made.

7:30 am- Take out Olivia's injection so it can get to room temperature and start some coffee.

7:45 am- Make sure Dannie is awake and start breakfast for us all.

8:00 am- Wake up Olivia. This usually takes a few minutes because she's not a morning person.

8:30 am- We give Olivia her oral meds and injection after she finishes eating.

9:00 am- Dannie leaves for work (sometimes sooner) and I usually put some cartoons on for Olivia so I can wash the dishes and straighten up the rest of the house.

10:00 am - 11:00 am- Play with Olivia or sometimes give her a bath. Most days the house is clean by 10:30.

11:30 am- Lay Olivia down for a nap. (I try at least..she's been fighting all naps lately)

I don't ever plan our afternoons unless we are running errands or have something else to do. Once we eat breakfast and she gets her first nap in we pretty much do whatever. It would be nice if I could get into the habit of having dinner ready before Dannie gets home, but let's just be honest..that may never happen. If your curious about the workout I've been doing, it is T25 Focus. It's great because it's only 25 minutes!! I've also been walking/running on the treadmill some evenings. I've lost a few inches here and there, but last week I had a little set back with a kidney stone and some stomach issues. Hoping to get back into it on Monday. I'll be starting week 4.

Olivia turns TWO this week! I can't believe we will have a two year old running around. It makes me sad and scared. She talks SO MUCH and is just blowing us away with the things she's learned. We are really struggling with nap time lately. I knew that one day she would go down to one nap a day. I guess I was just hoping it wouldn't be for awhile. She usually always gets a first nap as long as we're home, but she will fight the second nap. I'll miss her second nap because that's when I would nap with her.

We are planning a pretty small get together for her birthday. Same people as last year :) I started out wanting it to be Curious George themed, but when I thought about it and how hard it was going to be to find everything, I changed my mind. So, Olaf it is! I was able to pick up some stuff up at Target, but a lot of it was 50% off at The Party Store. We had talked about renting a pavilion at the park thats close to us, but the weather has been crazy here lately. It's 90 degrees one day and 40 the next. I am pretty excited about making her some birthday waffles and putting some balloons in her room when she wakes up on her birthday.

Other than preparing for Olivia's birthday, I turned t-h-i-r-t-y on the 8th. Can't say I was happy about it. However, I was happy about getting my hair done and covering up all the gray. Ek! On my birthday I was surprised by Dannie, Marcella, and Will with a night at Painting with a Twist. My mom also took us to lunch and watched Olivia while we painted. We had lots of fun! I've been wanting to do it for awhile, but we just never planned it. Wine, painting, and friends equals a good time.

Can't wait to show you pictures from Olivia's birthday! :)