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.

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)

October Festivities!

Here are some photos from our October adventures.

I just love the trees in Micanopy and McIntosh. It has to be one of my favorite parts of the town. We didn't end up purchasing anything at the festival in McIntosh except food and a Peppa Pig hairbow for Olivia. Lemonade, hot dogs, and fried pickles. It definitely wasn't a healthy day, but we had fun and the weather was beautiful.

The weekend after the McIntosh festival was the Micanopy one. The town there is even cuter and is filled with adorable little historic houses. Let's see..we stuffed our face with funnel cake, lemonade, gyro's, and arepas. I did purchase an old windowpane though for $20. I'll have to repaint it, but, I want to hang it in our living room.

Olivia had fun and enjoyed the family. She probably felt like she was at a dog zoo because so people take their dogs to the festival. She even saw goats and a pig :)

We usually take a big blanket to lay out under the trees so we can all eat together :)

I just love these two below. They were both rocking their arthritis shirts at the McIntosh festival. I made Olivia's shirt, but I ordered the Cure Arthritis one from for just $15. They also have some bracelets, some racing shirts, and a big pack that comes with a shirt, buttons, posters, bracelets, stickers, and a bumper sticker. That is the way to go to raise awareness :)

We love us some QUILTS! :)

We took Olivia to her first "Trunk or Treat" on the Friday before Halloween. She was adorable! She cracked us up because she was pretty confused at first about what to do. Once she realized she was having candy put into her bucket though she would walk up to the vendors on her own. She even said "Trick or treat" a few times before we got there, but she didn't say much once we were there. She was too busy checking out other kids, it was loud, and she was just excited they were giving her candy! Most of the candy wasn't toddler friendly, so she probably had one piece. We just wanted to see how she would do really. Isn't she the cutest little monkey?

Weekly recap

The past few days have flown by for me since we have been pretty busy. I like staying busy, so it doesn't phase me at all. We've actually done so much within the last week that I can't remember what we did on what day. I'll blame the mom brain.

Last week Livi dealt with a flare. I think we took her to the doctor on Tuesday and she was able to get IV steroids. She was feeling better by the time we got home and her rash was gone. Luckily, we didn't have to raise any of her home meds. We are currently waiting for the results of her c-diff test though. It would be awesome if she didn't have to be put back on antibiotics and results are negative. But, we have noticed a few of her previous symptoms that she had before with it.

Olivia and I made a trip to Target last week. I could seriously live there. I'm not sure what it is about that place that is so calming, but it's just a lovely place. I really TRY not to purchase anything either but we all know that's not possible.


We had an ice cream date Friday night. There is a Twistee Treat in town and we LOVE it! Olivia was napping when we got there, but we decided to wake her so we could share our ice cream. I got a banana split and Dannie got his usual, a mint chocolate chip milkshake.

The weather has been a tiny bit cooler in the evenin making bearable to do stuff outside. So, we were able to sit in the back of Dannie's truck and enjoy our ice cream. Olivia enjoyed it and that's all that matters!

Saturday we had a lazy day at home. I cleaned the house up a bit and we played with Livi. We were even able to get a bit of outside play time in. Woo hoo! I painted Olivia's nails and she loved that. If only she would hold still for me to get a picture of them though. She is so fun at this age!

Sunday was grandparents day. We met my parents at Lake Sumter Landing for dinner and to walk around. Dinner was delicious. Our eyes ended up being bigger than our stomachs though. Olivia played in some bubbles and ran around on the docks. The weather was once again awesome and there was a beautiful sunset!

Monday, Olivia had an eye appointment. We rushed out of the house because we needed to run a quick errand before and didn't eat, so we were starving. She hates seeing the eye doctor. She always cries and I have no clue how he sees anything, but he says he does. No inflammation in her eyes. Lunch afterwards which made us sleepy. So, it was nap time once we did got home. Tuesday, we went to visit my mom. Olivia always has fun over there and is exhausted once she gets home.

Last night we decided to load up and take Livi to Barnes and Noble. She yelled "Books and wow" the whole time. She enjoyed the train table and always loves the stuffed animals. There were a few books she was interested in, but she mainly enjoys being able to run around. This morning we were out of the house by 10 and went to the park for a bit. I was able to walk the whole park. I want to try and do that a few days out of the week. Again, nice weather and gorgeous flowers. Olivia spent her time in the stroller watching butterflies and birds. We stopped by Old Navy afterwards and then came home.

Grandparents Day 2015

Wearing her Curious George

Barnes and Noble fun

Yoga fun :)

A morning at the park

Outside fun :)

Our daily routine

I've been struggling with this blog stuff lately. I have plenty of time (most of the time), but when I convince myself that I'm going to sit down and start typing, I find something else to do. I've been wanting to talk about what our daily routine has been here and what better time to do that than right now.

Olivia is currently sleeping, but she's due to wake up any minute. Anyway, Dannie and I haven't slept past 7:45 since Livi was hospitalized. I'm not complaining because I feel more productive when I get up early. We just wake up more tired. If I have plans during the day I usually try to pack everything and get it together the night before because it's tough getting it all together last minute. Is anyone a good last minute packer? I always forget something. 

We (usually Dannie if it's during the week) take Olivia's injection out of the fridge around 7:45-8:00 am so that it has time to get to room temperature. If it was still cold, it would hurt even worse than it already does for her. She usually watches Doc McStuffin's or Mickey Mouse Clubhouse while we wait. She gets her shot at 8:30. From there we make breakfast and get her other medications ready. Depending on how messy she gets during breakfast will depend on if she gets a morning bath or not. 

She is still taking TWO naps a day! Woo hoo! She's usually a little grump by 10:00-10:30, so we lay back down and she will nap for a bit. This usually gives me time to straighten up the house and shower if I need to. When she wakes up it's lunch time. If we have errands to run we will do that after lunch or before and just pick something up while we're out. 

Her second nap usually happens between 2:00-4:00 pm. If she doesn't get this nap the rest of the evening doesn't run too smoothly. I will usually either nap with her or continue to work on house stuff. I've been planning a weekly menu and have actually followed it this week. If we don't follow the menu we always spend tons of money eating out. Once dinner is over, we spend the rest of the evening playing with Livi and catching up on our shows. Dannie has been going to study at 9:00, so that's when I try to put Olivia to bed. Some nights it takes about 10 minutes and other nights it takes close to an hour. 

We don't do a lot during the week besides visit my mom or run errands. Eventually, I'd like to ask her Rheumatologist if she can take any kind of mommy + me classes. Our local gymnastics place offers a toddler tumbling class. I think she would enjoy that and it would give us something to do one day out of the week. Also, once school starts back here I want to take her to do some other stuff, but it should be less crowded then. We have tried to get Olivia to wear a mask that way we could do more stuff with her, but she is not a fan. We will have to keep working on that as she gets older. 

I'd like to hear what your routine is and what works for you. What do you do if your little one misses a nap?