Chemo Round 1: Day 20: Counts Are Climbing

It’s 10:00 and we’ve had quite a busy morning already with OT coming by a little bit ago. They were pretty impressed with her progress since last week and she loves showing off. It was a good distraction for her while she was hooked up to the IV as well.

At the rate she is going she will be crawling soon. I also found out that there is a milestones chart made for babies with Down Syndrome. Maybe I knew this but forgot? Anyway here’s the link if anyone is interested:

She was up early again this morning… I heard her when I was in the shower. I’ll be so glad to be home and maybe take a nice long bath. I need to put my feet up and relax because these ankles are so swollen.

I’m not complaining because I know this is nothing compared to what Shyanne is going through. She is such a cutie and she is so strong… she does everything with a smile and she inspires me to be a better person.

We are waiting on the doctors to round right now and I’m praying they can give us a better idea of when we might be looking at discharge. I’m trying to be patient but it’s getting hard even though the end to this stay is in sight.

I need to practice a bit more with the line flush and then do it with the nurses a couple more times before we go home. I also need to get the calendar for the next month or two so maybe we can better prepare for our next stay.

I’m getting excited to see everyone soon even though I know there won’t be a whole lot of rest going on as there are a pile of packages and stacks of mail to handle. There will be even more packages before we get home as well because of all the school stuff I ordered… it’s going to be great to spend time with everyone though.

6:30

Well the doctors rounded just after I finished writing earlier this morning. They are thinking she is on the road to count recovery but they want to see some increases in the next few days… a little encouragement that makes me feel so much better!

Shyanne’s been a bit of a stinker today. She refuses to nap unless I’m holding her so I can’t get anything done.

We did have a volunteer come by this afternoon so I went downstairs to grab a Frosticcino, junior Frosty, and a sugar cookie. Shyanne wasn’t very happy when I came back but she cheered up when she saw what I had.

She was hooked up to her IV for a while so the snack helped to distract her a bit. She also ‘read’ a few books and played for a bit.

She didn’t eat a really good dinner… possibly because she had such a big snack? After dinner I gave her a CHG bath and brushed her teeth. I changed her clothes as the PAC changed her bed linens and then I laid her in bed to watch some ‘Signing Times’ but she is fussing now so I’m guessing she wants some milk.

10:00

I finally got little miss to go to sleep. We FaceTimed with everyone for a bit and it was good to see and talk to them. It was also nice to see them having fun.

We also got some great news about her bloodwork… it looks like it’s on the right path to get us home. I’m afraid to get my hopes too high but here are the results from today:

WBC 3.4 (down from 3.5)
HGB 8.3 (up from 8.2)
HCT 23.3 (up from 23.8)
PLT 144 (up from 100)
ANC 273 (up from 110)

Once again we thank you all for your continued support on this journey and we pray that you never have to face this monster in your own lives!

We know of a few close friends/family who are or have been affected by cancer recently and we ask that you keep them in your thoughts and prayers as well.

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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