Chemo Round 5: Day 5

Day 5 was pretty good with no fevers or vomiting but she just felt pretty yucky most of the day. We also noticed some sores on her tongue which confirmed my suspicion of mucositis.

Even though her mouth was sore she decided she wanted to eat. She ate a really good breakfast. Dr. W told her that you can’t eat eggs with your hands but she says ‘watch me!’… silly girl.

She had a PT session too. It is so crazy to see how much she learns in between our stays and how well she masters every new skill that they teach her. She loves challenges and does her best to overcome every obstacle that has been put in front of her.

The doctors have decided to leave her Vancomycin at the level it is at as her cultures have been negative so far. She had several episodes of unexplained redness today… you can see it in her cheeks in the photos from today. It was also across her forehead at times. They started running her Benadryl a bit slower to just to see if that helps.

They’ve also put her on a tiny dose of Lasix to help pull some of the fluid off of her. Last round she got so puffy and it seemed that no matter how much she peed she just stayed puffy until the fluids stopped. The Lasix began working immediately and we both had several outfit changes throughout the day.

Her cutest outfit change came after lunchtime. I had been trying to work on a grocery order but she just wasn’t cooperating so we decided to do a photo shoot. Ms. B came in just beforehand and she helped get our model ready. If you haven’t been on FB or Instagram then be prepared for a cuteness overload!

Isn’t she just the cutest Little Red Riding Hood? All we need is for Daddy to dress up as the big bad wolf and a little basket… too cute!

We don’t normally celebrate Halloween but when my kids have dressed up for special events we always made sure it wasn’t scary things and this little outfit was too perfect!

She got fussy towards the evening and didn’t want to settle down for bed. We did a FaceTime call with some family and she was happy to show off some more cuteness and babbled away.

After the call she got another ‘ice cream’ aka Magic Cup. I had asked about them earlier and she got one after her nap. She got mad then because I wasn’t feeding her fast enough so she tried to ignore me but ended up falling asleep.

She’s so silly. She ate a bit of her ‘before bed ice cream’ and then fell asleep. I tried to take advantage of the moment to sneak in the shower but when I went to put her in bed I found that she had a messy diaper and needed an outfit change.

This woke her up so we had to snuggle on the couch for a good bit before she went back to sleep. I did eventually get a quick shower and then sat down to get the groceries put in the cart for pickup.

We started out snuggled on the couch so she could nurse but she was flipping around like a fish out of water and kept setting off the alarms on the IV pumps… or at least we thought that was what was doing it.

They continued to go off during the night even after we got her settled in her chair to sleep. We aren’t sure what was going on but I felt so bad because it seemed like I was pushing the call button every 5-10 minutes. The night was a blur and I couldn’t even tell if the beeping was real anymore.

I did get to lay down for the first time since we’ve been here this round. I just kept her little chair close enough that I could reach out and rock her when she tried to wake up. It felt so good to actually lay down for a bit.

I’m not sure what today will hold but I’m praying she does good and that the mucositis doesn’t get any worse. It’s hard seeing her in so much pain. She hasn’t needed any morphine yet but they have it ready if she does.

Please continue to keep her and the rest of the family in your thoughts and prayers.

Thank you all so much!

By Susie @ Kirby's Kabin Blog

Susie is a slightly crazy, homeschooling, square dancing Momma with a houseful of babies (10 to be exact), and a whole lot of Jesus. She gave birth to seven of those babies (and she has the stretch marks ans scars to prove it) and then God chose her to be Momma to three more who she refers to as her 'Unexpected Blessings'. Having a large family means she has heard just about all of the large family jokes... you know like 'You know how that happens, right', or 'Don't you have a TV?'. Many people believe that she must be related to Mother Teresa but she insists she isn't anywhere close to a Saint although she does appreciate as many prayers as she can get sent her way. Even though four of her babies have flown the coop, her life stays really busy. Most days start out early with a cup of her favorite Dandy Morning Coffee and a quick Trim Healthy Mama breakfast before the kids get up and the crazy starts. She looks at every day as an adventure where the unexpected keeps her on her toes. In the rare moment that she finds a little quiet time, you can usually find her snuggled up with a good book, browsing a thrift store, sewing a new outfit, or getting a little 'Pin Happy' with To-Do projects on Pinterest. She is extremely passionate about her family, cooking, being a keeper of the home, and square dancing. She is also on a mission to help others to make healthier changes in their lives, one family at a time. She strives to live by the Proverbs 31 model but she also acknowledges that she is not perfect and is just a sinner saved by grace. Kirby's Kabin Blog began as a way to share her family's journey with family and friends as they've gone through so many life changes. After getting so many questions about parenting, homeschooling, and recipe requests she realized that she could really use her blog as a way to help others out there who may be struggling with their roles as a mother, especially the single mothers who may feel like they are all alone on their journey. This blog has become a journal of sorts and a way for her to help inspire and provide encouragement to others. She enjoys looking back over old posts to see how far they have come and to motivate her when times seem tough. On Kirby's Kabin Blog, she talks about their life's journey through the adoption process, how their faith in God got them through some difficult and challenging times, as well as the many ups and downs they have faced with a large family and special needs (ADHD, ODD, and Down's Syndrome to name a few). Susie also shares the products that they use in their home as well as tips and tricks that she uses to keep her family running as smoothly and efficiently as possible. Do you ever feel like your juggling so many things that you can't think straight? She has often felt the same way but has come up with some simple routines and schedules that help everyone to stay on track and I think they just might help you too! Under the 'Keeper of the Home' tab, you can find various tips, tricks, and hints to get your house up and running on autopilot. That's not been such an easy task for them since they downsized to a 600 ft square cabin but somehow they make it work and she loves sharing some of the helpful tips and tricks that they've learned along the way. One question they get a lot is about how they feed this army. It's not always an easy task and trying to eat healthily can get quite expensive so she is always looking for ways to save money and stick to their grocery budget. Under the 'Kirby's Kitchen' section they have a ton of their favorite recipes like Daddy Can't Wait Casserole, Hoe Cakes (one of the most viewed posts on the blog), freezer cooking, and meal plans along with their family's 'Trim Healthy Mama' plan ideas and successes. If you haven't heard of the 'Trim Healthy Mama' plan you should definitely check it out today! Sometimes eating healthy does mean she spends a little extra on groceries so she finds other areas to cut expenses. One way they have found is with their cleaning supplies and health products. She has always been concerned about the chemicals (Did you know that the average household contains about 62 toxic chemicals?) and toxins that are in many household cleaners so when she found a company where she could buy the majority of the green cleaning products that they use she jumped at the chance to become an Independent Sales Consultant with Norwex. Direct sales is really not her thing as she really is a bit of an introvert so if you look under the tab 'Susie's Chem Free Zone', you will find information about some of the natural products that they use around their house as they try to create a safe haven for their family. If you find that you are interested in the products, feel free to check out her personal web page (susiekirby.norwex.biz) or contact her to see if she can set up a 'virtual party' for you and your friends. Susie has been homeschooling for several years now and although she does not consider herself to be an expert but she has found a variety of products and services that have helped to make their homeschooling journey a unique experience. You can find links to these products under the 'Kirby's Kid's' tab. Susie and her kids have had a ton of fun reading through the Little House on the Prairie series and she has posted some of the unit studies that they have put together for the different books. The family has been trying to incorporate some of the old fashioned morals and values into their everyday lives. As if juggling kids, home, and a home business weren't enough, the family also enjoys square dancing twice a week or more. Mr. Awesome and his dad happen to be the only father/son caller duo in Florida and are pretty well known in these parts. She also manages a couple of other facebook and blog pages for a couple of the local square dance clubs. The 'Kirby's Korner' tab is where they post links to their square dancing activities which is one of the things they do as a family. Susie loves to dress up in her fancy dance outfits and thinks the fluffier the petticoat the better. She also loves to take selfies of her various square dance outfits and share them with others. Did I mention that she met Mr. Awesome through square dancing? You'll have to poke around the blog to see if you can find that story somewhere. If you just want to find a list of the affiliate/referral programs that the family works with you can click on the 'Affiliate Links' tab. These links help to support their blog, their family, and their homeschooling mission at no extra cost to you. If you like to chuckle about the crazy things kids do or the crazy things they do on a daily basis then you really should follow their blog. They also have accounts on Facebook (@kirbyskabinblog and @susieschemfreezone) as well as on Instagram (@kirbyzkorner and @susieschemfreezone). In July of 2020, amidst the COVID-19 pandemic, Susie and Shane welcomed their youngest daughter, Shyanne, into the family. Shyanne has a dual diagnosis of Down Syndrome and Dandy-Walker Malformation w/hydrocephalus. She has gained many followers and supporters from around the world who have joined together to be prayer warriors for this special little girl.

1 comment

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create your website with WordPress.com
Get started
%d bloggers like this: