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

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! :)