Skip to main content

Evie writes from the hospital bed

Hi Mommy,
This was a funny day. Last night instead of putting me to bed, you stayed up with me and played with me, and kept asking me to eat. I didn't want to eat. I wanted to play.  Then you hooked up my feeding tube early and we got in some extra cuddles. I started giggling because this was more fun than going to bed.  Sometime soon after that, I think you forgot to hook up my feeding tube like you usually do overnight. My tummy was hungry! I had to make smacking noises all night to tell you that you forgot to feed me on a continuous feed like you usually do! 

You woke me up when it was still dark! Was it because you wanted to play with me, Mommy? I thought you did, so I smiled really hard at you and said a big hello!  

We got in the car and Daddy and I both fell asleep. Daddy usually has as much trouble staying awake as I do!  

We got to the hospital and got in a little room with a big bed for me. They stuck big stickers with wires on me, and then I heard silly beeping machines again, like when I was in the other hospital. I like kicking off the tape on my big toe.   A nice lady came to pick me up. You and Daddy said goodbye to me.  That's all I remember about that...

And then...Mommy, I woke up and they had a tube stuck down my throat! I hate when they do that! I screamed and screamed when they took it out of me. They said sorry to me but I don't think they were sorry. Apparently while I was sleeping, they stuck a tube up my leg and looked at my heart and lungs. My leg hurt!! 

Then you came back for me, Mommy, but I wanted you to know I wasn't pleased.  So I kept crying. Finally you all decided to feed me. Geez--took you long enough.  

The nurse ladies kept touching my foot and rubbing a probe on it. That tickled. They wouldn't stop. I guess they couldn't feel my heartbeat in the leg they put the wire in.  So they gave me medicine and I stayed with mommy and daddy in that room for 6 more hours. Then they decided they liked us so much, they would invite us to stay overnight. 

Now I am sleeping in my hospital bed and mommy is in a long chair next to me. They are going to feel my foot a lot tonight, they said. I guess that's ok, as long as they don't forget to feed me again! 
-------
Hello again, I am feeling a lot more like myself this morning! I wanted to sit up in bed today instead of lying down. I have a lot of wires on me and Mommy says I look like Robocop. I don't know who that is.  I guess he wears pink like me. 


Mommy and Daddy both got chair massages today and came back relaxed. Daddy also got another massage in the Family Center.  He must really like massages!  Mommy said she really needed one because the pull out chair she slept in was uncomfortable. But she had an egg crate mattress, which helped a lot. Best $13 she spent at Target!

Today I had to stay in my bed with all the wires.  Daddy and Mommy played with me, but it was not the same.  There's this room across the hallway that the nurses take me into, and I don't like that room. They take my blood there.  There's no need for that, Mommy.  Why do they do that?

Daddy said he is staying with me tonight in my room.  Mommy, I hope you get some sleep.  See you tomorrow morning and we can play some more!

Love,
Evie
Postscript: Evie's surgery is this morning (Wednesday).  Thanks for your prayers for everything to go smoothly and that Evie would recover quickly!

Comments

  1. Sending prayers and good vibes to Evie and her family today! It never ceases to amaze me how strong, beautiful (and extraordinary!) our children are--we are truly blessed.

    Evie, I met with a colleague of your mom's today (all the way up north in Newfoundland)--you have many angels looking out to you from all corners.

    Good luck sweet girl! Rock this world!

    ReplyDelete
    Replies
    1. Thank you so much! I think you must be talking about a classmate of mine! That is so cool! Thank you for your prayers and good wishes!

      Delete
  2. Evie. Your buddy Noelle arrived today in Boston to cheer you on. She landed first at 6pm on Tue in your father home town of Detroit where she was granted US citizenship. Then she touchdown in Logan at 1130 to say Go Evie Go!!!

    ReplyDelete

Post a Comment

Popular posts from this blog

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update:   Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents.  The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM.  Good luck! a Rafflecopter giveaway  ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I needed to fin

It's Official! The Polka-Dotted Penguin book has launched!

It's official! My new children's book, "The Polka-Dotted Penguin" has launched today!  How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project.  I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences.  This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie! Here's how to order: Barnes and Noble (Hardcover): https://www.barnesandnoble.com/.../the-polka.../1140115530 Amazon (Hardcover, Paperback, Kindle) :

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline.   And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever.