Chemo Round 2: Day 20

Today has been another big day of NOTHING… which is good. Shyanne has been sleeping a bit better but I still get up pretty early to feed her because I feel like she needs the extra calories/nutrition. She hasn’t argued with me as she likes the extra snuggle time as well.

This was her silly face today at lunch. I showed her a video of a baby who couldn’t stop laughing and she wasn’t impressed.

She bumper her head on the crib rails this morning because she was being silly. She didn’t really get hurt but the doctors checked her out anyway and said to keep an eye on her just in case. Her crib rails are now covered with blankets on one side in case she decides to be silly again.

The doctors also told us that her ANC is still at 0. Her platelets have dropped a little as well but not enough that she needs a transfusion though. Dr. Wynn is also going to see about getting her procedure rescheduled for the day before her birthday.

We were here 24 days last round and were hoping to be home around the same time but it’s not looking that way yet. We are still hoping to be home for her birthday next week though. Her birthday is July 8.

Child Life came by and took down some notes so they can try to plan a birthday party for her if we happen to be here. It is really sweet of them to do that and we really appreciate it. I still need to find her an outfit for her birthday party as well… not sure how much of a party it will be as we need to be as everyone will be needing to wear masks and such.

We got to FaceTime with Grandma for a bit this morning. Shyanne played peek-a-boo with her blankie. She also showed off her flexibility and her sitting skills.

Shyanne also had some time with OT today and she watched her eat her snacks. Hopefully with the strength exercises she is doing with her arms her reaching and grasping will improve. She wasn’t reaching over her head for a while after her open heart surgery but she has started doing it more now.

I’ve ordered her a new spoon and fork to start practicing with. I also ordered her a couple more cups and silicon bib that I can wash off really easily while here. One of the cups is a weighted open cup as she likes using her sippy without a lid.

The Nutritionist also came by to check on how she’s been eating. She had a few days where she didn’t eat well but things are improving everyday. When they weighed her today she was 7.80 kg which is close to what she was when she was admitted this time around (7.85).

A staff psychologist popped in to check on us as well today. She wanted to make sure we were doing ok and see if there was anything anyone could do to help make us more comfortable. There really isn’t a lot more anyone can do here… we are just at the point where we really miss being home.

Other than a busy morning our afternoon has been pretty boring. She has been playing a took a good nap this afternoon. I watched some TV and came up with a kitchen design for the remodel we had planned … it won’t be anytime soon so we have plenty of time to work out all the details.

It’s so crazy how we’ve had so many things on our plates that ‘needed’ to get done, like our bathroom redo, but when this happened nothing else really mattered right then. We’ve just put everything on the back burner to deal with this but there are things we will have to deal with soon… like the bathroom.

I’m sure we’ll manage to get it done although our current situation will make it a bit more challenging. When we picked out our house we didn’t even know we would have our little miracle baby… it wasn’t in our plans but God knew. He has a plan so much bigger than ours and He will take care of our every need… that is something that I’ve come to realize through this.

I’ll try to keep you all updated… she will have lab work done again tomorrow so we should know if her counts are coming up or if she has any transfusions in her near future. Please keep us all in your thoughts and prayers.

My sweet husband asked for prayers for me today and I just want everyone to know that I feel incredibly blessed to have so many people praying for our family… you all are giving us the strength we need to get through this and we couldn’t do it without your love and support. Thank you so very 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.

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