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

World Arthritis Day 2017

As most of you know from seeing my posts, October 12th was World Arthritis Day. It doesn't matter what kind of Arthritis you have that day or what your story is, it's a time for everyone to join together and raise awareness.

We started something this year that we hope to do every year. We hope we can work with some people next year to raise more awareness and even do some fundraising for the SJIA Foundation. If you are looking to donate, this is a great community to donate to. All of the donations go to research for SJIA, which is what Olivia has. We wanted to do something special this year and thought we could use Olivia's first hair cut as an opportunity to do that. She was proud to support everyone with Arthritis and wear her blue that day.

Olivia's arthritis not only affects her joints, but it causes rashes, fevers, and can affect her organs. Usually when people think of Arthritis, they just think of stiff, sore joints. There are quite a few different medications that kid's with Arthritis take, but most of them suppress their immune system. So, not only do we have to deal with the symptoms of Arthritis, but we need to keep our girl as healthy as we can because any infection could send her to the hospital.

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. :)

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)