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. :)

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!