Update
I'm sorry I haven't been on in some days. Things haven't changed much... I thought I'd show you a picture of Ellie that was taken today of her opening a gift from her Uncle Dick and Aunt Gayle. She loooooves Egypt and has been wanting a calendar for her room, so it was a perfect gift!
You can see that Ellie is really starting to retain fluids in her face and neck now, and her coloring is completely pale. Ellie is still on miraculously few drugs - and low dosages. One is a steroid (thus the fluid retention) and the other is a narcotic. Together, the two manage Ellie's pain, but keep her lucid and happy. Ellie is not on IV fluids AT ALL. All she needs to hear is that we can access her port and hook her up to fluids, and Ellie will start guzzling water like it's going out of style! Our day today has been fairly quiet, with most of the excitement and anxiety revolving around bathroom issues. For Ellie it is a side effect of the narcotic, and for Ethan it is a side effect of being... Ethan. The two were frighteningly similar today. Oh well.
I seemed to fight off the cold I thought I was getting until last night. I now have a small cough and have gone hoarse. So I have kept my distance from Ellie today, and have worn a mask for small visits. I'm hoping to beat this thing very quickly and not pass it on to everyone else in the house.
Thank you all for your encouraging comments and emails. We appreciate all of the love and support so very much!
posted @ 8:59 PM
9 Comments:
ellie!
i was so glad to see a pic of you! it made me think, "ellie, belly, melly, telly...."
i'm really happy to see your picture. i took you with me tonight to help me brave it through a holiday party.
i saw a lady from my mom's church, and she's soooo pretty. i was thinking to myself, "wow...she is the prettiest lady in the whole town. she is sooooooo pretty! i can't go talk to her, because she might not be nice."
i truly thought that of her. well, i finally went up to her and i said, "you are from my mom's church and you are the prettiest lady ever!!"
ellie............you can't imagine. actually, maybe you can! but this lady was just the sweetest woman ever....i mean, she was just really cool! my gosh, so humble, so loving, so cool about remembering to mention my service dog being in church every week!
she reminded me of you, as everything does.
she thinks. she loves. she is thoughtful. she is grateful. she is loving. she is wonderful. she is concerned. she is amazed. she is giving. she laughs!
she is life.
that's what you are. you are life. you are laughter.
sweet ellie, you are the everything we all wish we could be....
you are pure love, my friend...
ellie, i adore you. you are a light, and a love. sweet as can be.
rest well, and eat lots of spaghettio's or anything else that tickles your fancy, my friend:))
i'm always thinking of you, ellie....
xoxoxox
jeni
Wow. Thank you for the lovely picture of sweet Ellie. :)
Praying always,
Sheila
Thank you SO much for the picture and update of our sweet girl. Ellie - isn't it cool that Jesus was in Egypt for a while when he was young - probably your age even. Looks like a great calendar . Your namesake Ellie (the goat) is getting big and was in the shed this morning with her mom, nephew,sister and niece - all piled up together staying warm . She is usually sweet but sometimes pretends to want us to scratch her ears - then pulls away really quick and run behind her mama. Violet and Montana are doing great (we like the names you chose - Montana turns her head around really fast when we call for her). Montana may be having a baby late this spring.
Think of you every day and night - our whole family prays for you and Ethan and your mom and dad especially that your Dad and Mom stay healthy!
Hi John, Sarah, Ellie and Ethan,
Ellie has led me to new appreciation for Egypt: Egypt was our Father's place of choice to protect Jesus when Herod was threatening his life. Jesus' protection was managed by God, not by Joseph and Mary.
Agapé
oh gosh, ellie....
forgive me, as i had to drag your spirit to yet another holiday party tonight!
this one was for the newspaper my future husband writes for.
i do find myself bringing you along with me a lot lately.
ellie, i love you. i really do.
i hope you can hang on tight, because if you are destined to be anything like you have been lately? i'll be dragging you along with me a lot through life!
you're awesome, chickie!!!
xoxoxoo
love, love, love...
jeni
Hi Ellie,
This is Anna from Semi-Tools. I started work there the same time your father did.
I also think the snow is very beautiful. I heard from a friend in North Dakota this morning that when the skies became light, all the trees and bushes were coated with frost. That must have been very beautiful. It is also very cold there, though, too cold for me. That is where I grew up at. After that it was on to Texas, now I'm here and quite glad to be here. There was very little snow in Texas, and I like the snow.
You and you're family share so much love from all your pictures and is quite nice to see.
Take care and I hope you get to enjoy the snow again.
Anna
we love and are constantly praying for all of you. we lift you all up to the Lord and pray for his comforting arms around you. you are all such a blessing to us. love
simons family
Ellie-
That is a great book, hope you enjoy all of the information in there. AND the great pictures.
I did not look to see if the book has anything on Hatshepsut, if it does, please let me know as then I should get a copy for our library too. It would look cool along with the framed art of Queen Nefertiti and Hathor that you saw when you visited our house.
We shall miss you all while we are in Florida for the Holiday, but we will bring hugs to EVERYONE from you all! and if you would like us to, I am sure we can pick up hugs to bring back!!!
Love and hugs-
Roni and Derek
Remember, precious Ellie, that your life is not defined by this illness, but by your strength of character. Keep trusting in His promises that He will never leave you or forsake you.
John and Sarah, we are tucking you in tightly to our prayers. May Jesus give you peace in the midst of this storm. You all are deeply loved by so many.
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