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

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.