Juvenile Arthritis Awareness Month

Since July is Juvenile Arthritis Awareness Month, I thought I would share some of Olivia's story. So, here goes...Olivia was diagnosed with SJIA/MAS at 10 months old. It started with a rash that lasted about a week. During this time the rash would almost disappear during the day and return at night. She was also experiencing fevers that would fade during the day and return at night. We had made several trips to see her pediatrician and at first they just thought it was a virus. After a week of this, they did some blood work and found that her WBC (19.5) was extremely high. They were still thinking it was due to a virus and said to monitor her over the weekend and return on Monday if she wasn’t any better. This didn’t seem accurate to us because she wasn’t showing any other symptoms that would make us believe it was a virus.

The day she was admitted. -2014-

We returned to the pediatrician on Tuesday and they did labs again to check her WBC and it was even higher (30) than it was on Friday. Unsure of exactly what was going on, he recommended we take her to the closest children’s hospital. We ended up seeing Infectious Disease, Rheumatology, and Hematology while there. Since Olivia couldn’t walk yet, we were unsure of any joint pain. She never seemed like she was in pain at all, but they did point out some areas that looked swollen. While there, she underwent a Bone Marrow Aspiration, a Lumbar Puncture, a TB test, a PICC line in her arm, lots of imaging, and lots of blood draws. She stayed in the hospital for three weeks total. We were there a whole week before they had an idea of what was going on. They began daily injections of Kineret and some steroids the second week and it cleared up her rash. They had sent off some genetic testing that tested for HLH also and she was put on extra medication for that until results came back. At the end of the three weeks, she was sent home on high dose steroids, Actemra infusions which were every two weeks at the hospital, Dexamethasone, and Cyclosporine.

This is Olivia now. -2017-

As she continued these medications at home, she began getting really puffy from the steroids and the Cyclosporine was causing hair growth. Our precious girl didn’t look like herself anymore, but she didn’t let any of that get in her way. She was always making us laugh no matter what she was doing. We were eventually able to wean off of some medications and change others. She ended up having an Anaphylactic reaction to Actemra, so we switched back to Kineret because it worked well for her in the hospital. Her HLH testing came back and it showed she just had MAS.

She’s now 3.5 years old and has had a few flare-ups with MAS, but we have been quick to get it under control. She is currently on Ilaris once a month and Prograf daily. She is very active and has shown that she loves swimming. We weren’t sure that she would ever make it to this point, but she’s showed us just how strong she is. If your interested in donating to The Arthritis Foundation, you can visit here. Olivia received a Power Pack a few months after she was diagnosed and really enjoyed opening it. She loves Happy Mail. If you haven't heard of it and have a child with Juvenile Arthritis, you can sign up here. Last but not least, if you want to raise awareness for Juvenile Arthritis, you can shop their site. We've ordered bracelets and I love their shirts. :)

Our Life Lately

Well, I'm BACK! I've been wanting to post for awhile, but I just can't seem to find the time. If your wondering what we have been up to lately, we have just been living life. I started more of a routine around the first of the year with getting up early and working out. It really works well and I feel much more accomplished midway through my day. I have so much energy! If you haven't tried starting your day before the sun comes up you should. I HAVE missed a few days though, I can't say I've made every day count. This is usually how it goes though when I do get up early.

6:30 am - Get up, brush my teeth, and put on shorts and tank top. Workout for 30 minutes.

7:00 am- Get Dannie's work clothes ironed and his lunch made.

7:30 am- Take out Olivia's injection so it can get to room temperature and start some coffee.

7:45 am- Make sure Dannie is awake and start breakfast for us all.

8:00 am- Wake up Olivia. This usually takes a few minutes because she's not a morning person.

8:30 am- We give Olivia her oral meds and injection after she finishes eating.

9:00 am- Dannie leaves for work (sometimes sooner) and I usually put some cartoons on for Olivia so I can wash the dishes and straighten up the rest of the house.

10:00 am - 11:00 am- Play with Olivia or sometimes give her a bath. Most days the house is clean by 10:30.

11:30 am- Lay Olivia down for a nap. (I try at least..she's been fighting all naps lately)

I don't ever plan our afternoons unless we are running errands or have something else to do. Once we eat breakfast and she gets her first nap in we pretty much do whatever. It would be nice if I could get into the habit of having dinner ready before Dannie gets home, but let's just be honest..that may never happen. If your curious about the workout I've been doing, it is T25 Focus. It's great because it's only 25 minutes!! I've also been walking/running on the treadmill some evenings. I've lost a few inches here and there, but last week I had a little set back with a kidney stone and some stomach issues. Hoping to get back into it on Monday. I'll be starting week 4.

Olivia turns TWO this week! I can't believe we will have a two year old running around. It makes me sad and scared. She talks SO MUCH and is just blowing us away with the things she's learned. We are really struggling with nap time lately. I knew that one day she would go down to one nap a day. I guess I was just hoping it wouldn't be for awhile. She usually always gets a first nap as long as we're home, but she will fight the second nap. I'll miss her second nap because that's when I would nap with her.

We are planning a pretty small get together for her birthday. Same people as last year :) I started out wanting it to be Curious George themed, but when I thought about it and how hard it was going to be to find everything, I changed my mind. So, Olaf it is! I was able to pick up some stuff up at Target, but a lot of it was 50% off at The Party Store. We had talked about renting a pavilion at the park thats close to us, but the weather has been crazy here lately. It's 90 degrees one day and 40 the next. I am pretty excited about making her some birthday waffles and putting some balloons in her room when she wakes up on her birthday.

Other than preparing for Olivia's birthday, I turned t-h-i-r-t-y on the 8th. Can't say I was happy about it. However, I was happy about getting my hair done and covering up all the gray. Ek! On my birthday I was surprised by Dannie, Marcella, and Will with a night at Painting with a Twist. My mom also took us to lunch and watched Olivia while we painted. We had lots of fun! I've been wanting to do it for awhile, but we just never planned it. Wine, painting, and friends equals a good time.

Can't wait to show you pictures from Olivia's birthday! :)

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?