Chemo Round 2: Day 8

Sorry, I didn’t lots our daily update yesterday. We stayed quite busy as we have since we got here.

Shyanne had some PT in the morning and then OT in the afternoon. She was so happy to have people come play with her. She is getting stronger and stronger and her therapist are always impressed at her progress because despite everything she’s been through she doesn’t give up… she’s the little girl who could!

Yesterday was also dressing change day but she didn’t get to take a tub bath as she was still connected to her IV. She’s been attached since we got here which has been a bit of a challenge to keep her untangled.

I’ve been doing as much as I can to keep her entertained. We rotate through her playtime, signing times dvds, high chair time (I really want to find her a little rocking chair of sorts because she loves rocking), and reading books.

She’s been losing a bit of weight but her doctor said she is doing so much better than they could’ve hoped for. The goal right now is to keep her eating as we get through the rest of this treatment process. Her doctor apologized for coming late yesterday but said a visit with her was the perfect way to end his day.

I’ve found that as long as I fix her meals like I would at home she usually eats pretty well. Once she’s finished her regular meal then I offer her whatever they brought on her tray… many times she will eat a good bit of it too. I also try to give her snacks in between meals and before bed as well as offering milk and juice throughout the day.

She doesn’t get really thirsty but one of the nurses said it was probably because she is getting so much IV fluid right now.

She started her IV chemo around 6:30 last night and will have it today too. Tomorrow she will get the Erwinia shot again and I’m praying she doesn’t have a reaction this time around.

We FaceTimed with Daddy for a bit before going to bed. I watched some ‘Homestead Rescue’ and got some ideas for a chicken coop and greenhouse. They also had some pretty good ideas on a solar kiln and storm shelter but I don’t think we’ll need those.

I held her all night as she sometimes gets a fever and gets sick during her chemo. I’m scared that she might start the ping up when she’s in bed and she doesn’t know to roll over when it happens. I don’t want her swallowing anything back down or inhaling it and causing more issues.

She slept pretty good even though she was a bit restless. There was an issue with the IV at one point where it was saying ‘air in the line’… a bit scary to see but they have filters in the lines to prevent anything from getting to her. She didn’t like being woke up for eyes drops and labs either but she didn’t fuss a lot and went back to sleep.

Ohh… and she peed all over me and her at about 3:30 this morning. I had to put her in bed, putting a blanket under her so she didn’t get the bed wet, and get her wiped and changed. Then I had to get cleaned up and changed. She also got the blanket we use as a nursing cover and her Boppy… we should have a clean blanket coming and I’ve ordered a new Boppy cover so we have a spare for the future.

This happened the other night about the same time but she was in her bed then. We had to wipe her down, change her and wipe her bed down and change the bed linens… not an early morning wake up call that I had asked for… lol.

She’s still sleeping right now but her breakfast tray just got here so I think I’ll probably sneak out to the Nutrition Room and grab some coffee and a cup of ice before she gets up.

We’ll be checking back in soon!


DIY Central Line Vest

I’ve also kept busy making a couple of central line vests. These just help to keep little hands away from the ‘new toy’ and keep everything safe and secure. Shyanne managed to get a cap off one line yesterday… I’m not sure how she did it but I was shocked to find it in the high chair when I picked her up!

It’s very important to keep the lines clean and capped. Any bacteria would go into her blood stream and pretty much straight to her heart. Central line infections are very serious and not something we ever want to deal with.

If she ever pulled her lines out that would be an EMERGENCY and she’d be headed back to the OR!

Yesterday I found a couple of DIY ones online. (Here and here, if you are interested.) Unfortunately, I don’t have access to a sewing machine but the coordinator from Arts in Medicine said she was going to look into getting one.

I did manage to make a pretty simple one… it took me a bit of time to get the pattern just right as Shyanne just wanted to play with the newspaper and she ripped a couple of my first attempts.

The finished product is pretty nice although I think a different material would work out better in the long run. She loves how soft this is though and I love how easy it is. I think I could even add some ties to make it where you don’t even need and fasteners. I just tied the shoulders this time around as she kept ripping the paper ones so I cut them big and adjusted them when I got it on her.

I let her play for a while with it on… it would normally be under her clothes or worn alone. One of the nurses said I could sell them but that’s an idea for later… the best I can do right now is just show you all the pattern.

It’s just a basic pattern that can be cut on the fold of fabric to make it easier. I’ve got the areas labeled below:

The should straps can be cut long for snaps, buttons, clips, or just tied, if you like. You could also sew them together. (If you sew this you probably want a lining in it and you’d need to allow for seam allowances.)

I cut a slit in the left side so I could secure it around her lines. This could be done in reverse if needed. I also attached two snaps to each little flap. These attach to the underside of the right flap.

The right flap simply fold over the left and snaps to the side to keep everything secure. I only put three snaps on mine but four would be better. I ran the lines through the gaps in the snaps and then around to the back.

I had originally intended to make a pocket to run the lines through on the back but ended up making a simple strap that snaps on. You could sew the middle to the vest but you want to be able to undo the top and bottom so you can have easy access for the lines. Mine wasn’t centered very well either… oops!

If using these are shirts I might make them a little extra fancy … who says medical gear has to be boring and plain?

I might also make a couple of simple ones to put under her shirts when she isn’t attached to anything. That way she isn’t playing with her toy when we change diapers and she isn’t stuck wearing just onesies all the time.

I used fleece to make this one and the one I made yesterday. It’s very soft but it doesn’t necessarily give any kind of support or structure to the vest. It is easy to work with and I don’t have to worry about sewing anything as it won’t fray but I may make some of these from some material I have at home when I have access to a sewing machine.

Feel free to use this or adapt it as needed. If I ever get into the business of making them I’ll let you all know.

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.

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