End Of The Month Recap

Hello! It's been awhile. Not a lot happening over here. I feel like we've became homebodies this winter. We have a few places that we go (my moms, the library, shands, target, and the grocery), but other than those spots we have been staying put at home. We are REALLY missing Disney and haven't gone since October or November. I can't even remember at this point, because hello Measles outbreak!! We are allowed to go and she'll wear her mask, but she's still on a pretty high steroid dose atm and she'll be starting a new med soon. With all of those added immune suppressing meds, it's just not a good idea right now. For those of you that don't know, she can't get any live vaccines. So, she would be at risk for anything she's not immunized against.

I feel like we are flying through Livi's school work. This week we are on letter R. We are still just using Pre-k and Kindergarten books that I've purchased at Dollar Tree and Walmart. We've probably gone through 1-3 Number books and I've had to purchase a few different learning sticker books because she loves them and we finish them quick. She can now recognize 27 sight words, which I think is pretty awesome. All of the crafts that she does I find on Pinterest. You can find everything on there. I've found a few books that have everything in them and I plan on reviewing them with her over the summer. She'll be doing Florida Virtual School for Kindergarten. Eekk! I can't believe I'm even saying Kindergarten. I'm not ready for that yet!

Since being glued at home, we've been doing all of the puzzles, Highlights Hidden Picture books, paper dolls, book reading, coloring, and crafts. Obviously, we watch movies and tv too when we have time. Spring is in full swing over here, so we can't stay outside long unless we want to be covered in pollen. I'm looking forward to planting our zinnia's and sprucing up our flower beds when some of the pollen is gone. 

We had a little Galentine's get together this year. It was so cute and fun! The girls did a craft, we ate some yummy snacks, and they did lots of playing. So much that they didn't want to leave each other at the end which was so sweet. My girl needs that time. <3

Despite all of the news we've been receiving lately, I finally feel a little better about everything. Olivia is at a point right now where her attitude is better. Which has helped a lot. We know it was the steroids making her act that way, but it made everything tough for awhile and once we start tapering down on them, we know it'll happen again. Until then, we are just taking one day at a time and enjoying it with each other. I can only control so much, so we just have to roll with it. 

Trying to remember what else we've been up to...

Olivia had a sleepover with her granny and g-pa one night which meant a date night at home for Dannie and I. That meant we got to order pizza that we like and not just cheese for Livi. She's had lots of testing done this month and we've got back all of the results. Meaning lots to talk about, but I'll save that for another post once she starts the new meds. 

Lots of library trips and we even stopped at a Free Little Library after our Shands trip last week. I could drive around Gainesville all day because it's so pretty.

Just counting down the days until I can take pictures of our zinnias and Livi playing in the pool. It's coming. <3

A Life Update

I feel like a lot has happened since I last posted and I've been missing this space. Sometimes when I try to sit down and think about what to type I lose my train of thought. SO, that's why I've been gone for so long. Most of the time we are so consumed with what is going on with Olivia, we don't have time for anything else. Not saying that's a bad thing, because thats how we like it, but every once in awhile, we need a little break.

So, here goes. I'll start with the little things.

Olivia got a school room in August! I've been wanting to repaint my old craft room for awhile. But, we weren't sure what to turn it into. Once we decided that Olivia would be homeschooled, we knew that she would need a space for school work. So, that's what we did. I might do a post later on and let you know where we got everything. I really love how it turned out.

We continued taking weekly trips to the library. I can't even begin to tell you how amazing it has been having a library card. Olivia's really enjoyed it and I've actually managed to read about 4-5 books this year myself.

We went to Disney and they had all of their halloween and fall decorations up. Some friends of ours that we met a few years back on social media were there so we got to meet them in person. That made it a special trip. 

A dentist trip, an eye appointment, and a cold that didn't cause a flare also happened in August. We found out that Olivia wasn't getting a good check-up at her current ophthalmologist, so we had to get a new referral to one in Gainesville. Not that she's shown any signs of uveitis, but she hasn't had a thorough check-up since she was diagnosed. 

In September she officially started pre-k work. We dressed her up as Fancy Nancy and she had a cute little tea party. She was on a low fiber diet that day, so we tried to make it fun. She had a procedure like a colonoscopy two days after, which she had to fast for and she rocked it. We were super proud of her! The results from that procedure showed inflammation in her colon, which is why we have been doing other tests for IBD. Cdiff also came back a few weeks after her procedure and she had to start another round of vancomycin. We could tell that she wasn't feeling well because she had a low grade fever along with it.

We finished up September with some sleepovers, school crafts, and swimming at granny's. When she gets older, she says that she wants to be an artist. 

The benefits of doing school work at home is that we can take it to the park. The weather was gorgeous! Livi hid about six rocks and found two. 

Olivia's monthly check-ups have all been good lately with Rheumatology. We saw her GI doctor and discussed more testing for IBD. She had genetic testing done for IBD at the end of October and we've been checking her stool every 2-3 weeks for cliff and the calprotectin levels (which measures the inflammation in her stool.) IF she ends up being diagnosed with IBD, they will have to adjust her meds and maybe add another biologic. We're pretty sad about that. So, we're hoping her levels have just been raised because of the cdiff.

We did A LOT of yard work at my mother-in-laws house. It took a few weeks to get it all done because of all the rain. Poor Livi got eaten alive by the mosquitos. October 12th was World Arthritis Day, so we celebrated by getting some blue added to Olivia's hair because that's what she requested. She wore her arthritis shirt and we made a new video to help spread awareness.

The toy bribes have been crazy lately.  Trips to Walmart, Dollar Tree, and Five Below in Gainesville. All to bribe her so that she will use the stool catcher (TMI, I know!) Apparently, we need to make a treat box so that we have them on hand and don't have to run out every time. Look at her dino collection! Who knew the Dollar tree had such a big selection!

Of course we made it to the McIntosh Festival this year. We mainly just go for the food. But, it's been a family tradition since we moved here. October is one of our favorite months because of Halloween. We probably watched every Halloween movie and colored every Disney halloween page there was. She painted a pumpkin at the library with cousins, we picked out fall and halloween books, and we made it to festival at the airport. Which she got to dress up for and loved it! 

Rapunzel, Let down your hair!

We also took some photos at the market, got to spend halloween with friends and family, and took another mega fun trip to Disney!

Disney days are the best days, especially with family.

We're looking forward to the holidays and I can't wait to share that with you. <3

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! 

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)