The Summer Of Doctor Appointments

I feel like all we've been doing lately is going to the doctor. When Olivia was diagnosed, I just thought she'd be seeing a rheumatologist. Our sweet girl has seen a cardiologist, an allergist, dermatologist, gastroenterologist, infectious disease, and an ophthalmologist. It's possible I forgot one or two.

We have been tapering Olivia's steroids down weekly by 1 ml. So, every Friday we load up and head to Shands for blood work. If her labs are good, then we get to go down. But, last week her fibrinogen was low, so we didn't get to taper. On Monday she saw GI for the first time. The plan was to discuss a fecal transplant for her c-diff. She's been battling it off and on for about two years. Anytime she is put on antibiotics, it usually causes c-diff. She had it so bad back in October that she had blood in her stool for close to a month. Because she had lost so much blood, her hemoglobin levels were down so in turn we had to make sure she was getting a good dose of iron in her vitamins. Back to her GI appointment- we decided no fecal transplant at the moment. She really hasn't had a chance to get off of vancomycin because she's been hospitalized each time she's been on it. So, the goal is to taper her off the vancomycin and see how she does with that. It'll take 6-8 weeks to do that unless she gets any diarrhea, then we'll have to slow the taper. Once she's off vancomycin, the plan is to do Flex Sigmoidoscopy procedure to see if there is c-diff present in the colon. They also want to do a small biopsy and check for colitis and any signs of IBS. Hoping there is none of that!

I never posted about her last few hospital stay. She was hospitalized first a few days before our Siesta Key trip for cellulitis. She got a few days worth of antibiotics and we were given the okay to go on our vacay. She did fine while we were at the beach and her feet looked much better after soaking them in salt water for a few days. Three days after we were home she started having daily fevers. She saw infectious disease on June 6th and she developed a rash at that appointment. We called her rheumatologist and ended up going for labs after leaving her ID appointment. Her labs were elevated and her appetite had decreased, so they decided to admit her to the hospital. During her stay she was given daily shots of Anakinra and IV steroids to help control the rash and fever and to help her get better. Her fever stopped after the first day being there, but her rash stuck around a few more days. Some of the labs we look at when she is flaring is Ferritin, Sed rate, CRP, Liver enzymes (AST and ALT), Fibrinogen, Platelets, and WBC. It was a horrible rash and it was itchy, which isn't like other rashes she's had. She hasn't ever had a rash while being on ilaris, so we weren't sure what to expect. Since she didn't sleep a lot at night because of the itching and steroids, she would sleep all day. Hospital stays are never fun. But, once her labs started trending down and she was eating better, they had said we could go home. She had to go home on oral steroids and that is what we are still tapering down.

We haven't done too much this summer after our beach trip. We've been a little nervous about taking her out in the sun for an extended amount of time. One of her prescriptions says to limit sun exposure. The mosquitos have also been terrible with all of the rain. They love to bite her, so we have to spray her down when she does make it outside to play. Disney movies, library trips, cousin playdates, and lots of coloring is all we know right now.

Even though I'm not ready, Livi will be starting some Pre-k stuff in a few weeks. We'll be doing it at home since she is immune compromised. I have quite a few books. I just need to get her a desk, make a plan, and organize everything. Sounds like a lot and it is! We'll see how it goes. It'll be interesting for sure because she only wants to work on school related stuff for about 10 minutes right now. Let me know if you have any ideas on keeping a 4.5 year old entertained with school stuff. I need all your ideas!

Other than all her doctor appointments, I've been working on a Facebook Group page for Olivia. I was updating my facebook and tagging Dannie in the posts. But, I thought a group page would help keep it all in one space and she can take over it when she's old enough. With all of the bills that have been coming in, we started a small fundraiser. We've been selling wristbands to help raise awareness and help with some of our bills. We are super thankful for everyone that has helped out so far! :)

Siesta Key Beach Trip 2018

If you've been following me on Instagram, you've seen that we usually take a trip to Siesta Key each year around this time. It started out as our yearly anniversary trip, but it's turned into a family trip. We weren't sure that we were going to make it this year because Olivia had been hospitalized a few days before our trip, but things started looking up and we got the okay from her doctors to go. We spent a few days in Orlando around mid May, but this time we got to spend four days with all our family. I can't tell you how awesome and much needed that was for us. The weather was perfect, Olivia got to play with all of her cousins in one place, and we got to try out some new restaurants.

We stayed at the Parrot Beach Cottages again. We stayed there last year and loved that it was such a short walk to the beach. We didn't use the pool last year because it rained a lot and when it wasn't raining, we were at the beach. This year, the kids might have enjoyed the pool more than the beach. It was easier for them to get in and out and didn't have to worry about being covered in sand. Olivia decided that she wanted to learn to swim and ditched her life jacket in the pool. It was crazy! She just started swimming and jumping in on her own. Obviously, there was always an adult in the pool with her though. The rooms where we stayed are super cute and decorated with beachy decor. They have a full kitchen, 1 bedroom, a full bath, and a pull-out couch in two of the rooms. There are four rooms total there. So, if you didn't want to eat out everyday, you could make your meals there. It's also not pricey compared to all of the other beachfront locations. 

The first night there we met some family that was down from Tennessee at Outback. That's always a yummy meal. You can't go wrong with delicious bread, steak, and veggies. It was nice getting to see everyone and meet cousins we didn't get to see last year. The second night, we went to Gilligan's Island Grill. The only thing good about this place was their music. It was super busy and we had so many people in our party, I think the server got a little flustered. The kiddos were all tired, so it went down hill fast. We decided on our last night there that we wanted to eat at The Hub Baja Grill. We would have eaten at this place every night if we could. We ended up just ordering our food to-go because we didn't want to miss the sunset. Dannie and I ordered the Chicken Quesadillas and the Hub Dip Sampler. They were both super delish and we didn't even eat them right away. After dinner, we picked up some of the donuts over at Meaney's Mini Donuts. We ate breakfast twice at The Village Cafe. It's some of the best breakfast I've ever had. We didn't even order anything fancy. We saved money on our other meals and brought snacks and food to make in our room. 

 It's a little crazy to think next year when we go that Livi will be five. I love traveling with her because she thinks the best part is staying at different hotels or houses. As much as we love Siesta Key, we miss the quietness at Longboat Key. It's beautiful and so close to the beach where we stay at Siesta, but it seems to be getting a little wild there and maybe not as family friendly. I'm already missing the beach though and secretly living through other people's photos I see on Instagram. I was hoping we'd make it back to the beach for some day trips this summer, but Livi started steroids and her little cheeks get so red from just running around. I can't imagine if she was out in the sun for a few hours. We made a summer bucket list with some local places around Ocala and Gainesville. I'll share that later. We haven't had the chance to do anything yet because it's either too hot outside or it's raining. Florida weather is so unpredictable.

Disney Days

We've been to Disney a few times now and each time it's a different experience. We have the weekday annual passes, so we can only go when Dannie can take off work. It's really nice that we are an hour away though. The last few months we were able to go to see the fall decorations, Christmas, and even try some park hopping. The weather has been different each time which has been interesting. When we went in October it was shorts and tank tops, November we wore pants and t-shirts, and yesterday we had pants, jackets, gloves, and hats.

Disney during the Holidays is so much fun. I wish I would have taken more photos of the decorations, but I was trying to live in the moment. Unfortunately, we were not able to go to Mickey's Not So Scary Halloween Party or Mickey's Very Merry Christmas Party, but the decorations they put up make it so magical! It will definitely get you in the Holiday spirit!!

We had a lot of first times on this trip. Olivia was finally tall enough to ride the Barnstormer! She loved it, but said she wouldn't ride it again because it scared her. She put her arms up on the climb up and it was so cute, but once it went down the first hill she was cuddled up next to her daddy. She wasn't that scared because she rode it on our next trip and said the same thing. We rode the ferry for the first time on our way into Magic Kingdom. We've actually rode it every time since because it's much faster than the monorail. Livi got to see Merida for the first time and loved her. She requested a bear afterwards and named him Harris, which is one of Merida's brothers.

YAY! We got our Holiday Magnet!

Fall Fun 2017

We really enjoy fall in this house. It's packed full of so many holidays that we love! The weather has been up and down. Since the leaves don't really change here, the cool weather is what we rely on to get us in the fall spirit. As soon as the temperatures drop, we break out our boots and sweaters, or at least that's what Olivia and I do. Olivia really enjoys decorating around the house, so we try and make it fun for her.

One of our favorite things to do is to go to the fall festival in McIntosh. It's turned into a family trip and we really enjoy going with others. We usually don't purchase much except food. This trip we got a pink tulle skirt with a hair bow for Olivia, a bag of kettle corn, and a bag of rocks to add to Livi's collection. Lemonade is always a favorite of ours and we stick to the cheap hot dogs that The Lions Club sells. By the time we got home, we were exhausted so we took a family nap. I'm pretty sure we ended our day at Cracker Barrel because we were too tired to make dinner. I really love the veggie/side plate there. It's soooo yummy!

Olivia requested to be Everest this year for Halloween. She let me paint her face, which I really enjoyed. We tried last year, but she was still too young and rubbed most of it off. She did pretty good this year, however, my face paint is another story. She would laugh every time I would scratch my nose and get paint everywhere. We decided to take her to a Trunk or Treat because it would be less walking for her. She had fun and that's all that matters. But, I think next year we will go house to house. The Trunk or Treat ended up being really unorganized and we waited in line for awhile.

The weather has been so nice in the evenings, which has allowed us to get some family time in outside. The time change has taken some getting used to since we were so accustomed to it getting dark later. But, now when Dannie gets home it's dark. Livi and I have made a few trips to Sholom Park. She found her first painted rock there and is now obsessed. We recently painted some and are going to hide them when we go back. She still doesn't 100% understand the concept of finding them and then re-hiding them for others, so we're going to practice a few times with friends.  It's so fun and really interesting when you find a rock that was painted a few states away. With fall coming to an end soon, we're definitely looking forward to Christmas and all of it's festivities. 

Usually, The Pickin Patch is something we try to go to as a family, but this year sickness struck. We didn't make it until the last day they were open. That meant missing out on the sunflowers, but since we went later the temps were cooler. I still call that a win! We don't purchase our pumpkins there because they are pretty expensive, but they have a corn maze and slides for the littles. I won't forget Poor little Peyton getting stuck in the kid corn maze because Livi wouldn't wait for her and Mallory and I trying to jump up on the hay bale. We did manage to record those, so we can look back and laugh later. 

We're still looking forward to Thanksgiving. It'll be the second time hosting it at our house. The plan is to switch things up this year and instead of cooking separately and then meeting up in the afternoon, we're going to cook and eat together this year! Hoping it's something we can continue to do each year after this. We only Black Friday shop from our couch, so no crazy crowds and line waiting for us. Can't wait to share Thanksgiving photos. 

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.