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! :)

Summer Bucket List

Does anyone else have a tough time deciding on fun stuff to do last minute? Well, we are those people! Dannie and I always try to think of things to do on the weekends and nothing ever comes to mind because 1. It's last minute or 2. We don't have the money. We decided to put together a summer bucket list. We thought it would be fun with Olivia also and would give us a chance to put our phones away and spend more time with her. Although, I'm sure we will be documenting it so I can make a list at the end of the summer of what we actually did.

It took us a few hours to sit down and think of activities that sounded fun as well as things we already do, but would like to do more of. We get a lot of rain here in Central Florida, so we needed a lot of indoor activities for rainy days. Dannie is only here on the weekends, so we didn't need a huge bucket list. Since Olivia is still young we can repeat a few of the indoor activities while Dannie is working.

This is what I used:

Colored popsicle sticks (purchased from The Dollar Tree)

1 Sharpie or pen

1 jar or plastic cup

Colored card stock

1. We separated the popsicle sticks by color and made different categories. (Outdoor-yellow, Indoor activities-purple, Water activities-blue, Family time-green, Crafts-red, and Food related-orange)

2. We wrote out the activities that we wanted to do on each color and placed them in the jar.

3. Afterwards, I cut out little tabs with colored card stock and hung them around the top of the jar. This will direct us when we're picking a certain color/category.

Our bucket list ideas:

Outdoor-yellow: Park day, take a trip to Lowe's & pick out flower's to plant, picnic in the park, find an open field and fly a kite, watch fireworks on July 4th, go watch a movie outdoors in the park (a lot of local parks participate in this locally), and visit an outdoor zoo.

Indoor activities-purple: Paint a picture or send cards to Instagram friends, color together, build a fort (Dannie is especially excited for this one), family blog fun, sleepover in the living room, dance party (Olivia's favorite), and movie/popcorn night.

Water activities-blue: Sprinkler fun, watch the sunset at Ft. Island Gulf Beach, beach day, splash pad, trip to the Tampa Aquarium, and go swimming at grannies house.

Family time-green: Go to the park with Abuela, go visit great-granny, themed dinner with the family, sibling get together, and play date with the cousins.

Crafts-red: Design shirt images on my Silhouette for Olivia, paint a canvas, finger paint with Olivia, take a photo an hour all day, Pinterest crafts, and chalk art on the sidewalk.

Food related-orange: Visit local Farmer's Market, Date night at Mojo's (we always take Olivia, she loves it here), DIY pizza night, ice cream night at Twistee Treat, visit local food truck, dinner on the patio, and bake sugar cookies and decorate them.

All of these activities are pretty cheap minus some of the water related items. We really don't need require big, extravagant entertainment, so that is how you can keep this cheap and fun! Good luck and have fun!

Olivia's 7 Month Update

Holy moly! Can't believe she is closer to being a year old. I'm a little late at this post, but at least I'm getting it done.

At her check-up on the 20th of August she weighed 18.8 lbs. and you are 25.5 inches long. She definitely gets her height from her daddy.

Let's see we dropped your swaddle last month. It's so much easier getting her to sleep now that we don't have to worry about securing her in there. Also, one less thing to pack when we go to Granny's house. Not that getting her to sleep is any easier unless she is exhausted. She still enjoys music and sleeping on her belly during the day. At night she has been falling asleep on us lately, so we just take her to her pack & play once she's fully asleep.

Granny got her a high chair last month because I managed to break her booster seat. She loves sitting in it to eat and also to play while I cook dinner or do the dishes. Probably makes her feel like such a big girl such she's up so high.

We are working on helping her to crawl. She STILL hates being on her belly for an extended amount of time. When I lay a blanket down with toys she will scoot backwards off the blanket. If I were to leave her there she would probably scoot all over the living room. She started teething the night before last. It was terrible and I'm sad we have to continue to go through it. I know once she has all her teeth she will be able to eat so many different foods. So far her top left tooth is VERY swollen and red and it appears it will be next. But, this morning her bottom left popped out of the skin. Woo hoo! Also, her "teething necklace" that is supposed to help has done nothing. I haven't noticed a difference since I purchased it. Of course my husband has always called it the "Magic necklace" because it releases "magic." I'm not sure why I put it on her still, I guess just in hopes it'll help.

We purchased a kiddie pool because it is so hot here and we have not been able to soak up the sun any other way. I put her in her float and she loved it. Since it isn't mega deep she was able to touch the bottom and somewhat move herself around.

She has become super attached to her paci and loves teddy bears and dolls. We also purchased her some indestructible books from amazon. Within two hours they looked like we had owned them for a few months. She loves them and it's awesome they don't rip or get all soggy fro her drooling all over them.

She is doing awesome with her baby food. I am still giving her gerber fruits and veggies as well as some oatmeal. I also started her on some meats and she loves them. She eats three times a day and sometimes has a snack before bed. She is getting around 4-5 bottles a day. I am still pumping all the time and I have a HUGE supply frozen.

Current faves: bath time, dancing, sleeping on your belly, your paci (you enjoy pulling it in and out of your mouth), different textures, the roku remote, cell phones, tupperware and kitchen spoons, being naked, and water from your cup.

There isn't much she dislikes. All I can think of is getting her diaper changed. She thinks its funny to pull herself out of it. She is such a happy baby! When we run errands or go to eat somewhere she is always in a good mood.

Story time with daddy.