I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day -8 (and photos)
Finally got the stuff set up so I can download photos. The goal is to post one phote each day so you can see how she's doing. So far she looks just like herself...too cute for words.
Day -10
Day -9
Day -9 (thumbs up. she ddoesthis each time she takes her meds, blood pressure, oxygen levels.. etc. Uncle Aaron started teaching her this last time he was at our house)
Day -8 She got a doll house from Pa and Gigi. Notice the people are sitting on the front porch. She had to put the baby in the middle of the mommy and daddy.
Today went the same as yesterday. No big news. She did great in the room again..the dollhouse really helped. There is a doorbell and a telephone that make noise and she loves putting the little people on the potty and putting things in the little fridge. All the meds went okay and she did a great job taking her oral meds also. Two more days of this chemo and then Sunday we start the next one. Mostly sitting and waiting. She isn't sleeping much. I know this will change at some point (they say after transplant most people sleep up to 16 hours a day) so I want to enjoy all the crazy energy but it is pretty hard not getting sleep at night. Last night she fell asleep around 11:15 and slept for about 30 min then was awake till 1:30 then got up about 4 more times. Some lasting only a few minutes some lasting up to 45. She would start crying and want me to lay in bed with her or tell her stories or sing her songs or hold her. As soon as I did want she wanted she would fall back to sleep but if I stopped she would start to cry again. So she got sleep just I didn't. She go up around 8:45 and my dad was here and was able to keep her occupied tilll 9:30. (Thanks Dad you are a lifesaver...as always). Nap didn't got so well either. She slept for about 45 min then woke up and was up for close to 3 hours before taking another 1 and half nap. It took close to 30 min to get her to sleep. Please pray for a bit more normal sleep schedule. This makes our at home sleep look like amazing. I thought I wasn't getting sleep before that was just the warm up.
Alivia's IV is beeping so I need to go and try to fix it and get the nurse. Till tomorrow.
posted by Alivia's Momma @ 9:38 PM
32 Comments:
First, I love, love, love the photos! Thanks for posting them.
Jude has been sick this week and I keep thinking, how is Emily handling this? Jude's got a wicked cold and I am going out of my mind. That seems like nothing in comparison to all you have endured (and currently are enduring). It was a good reminder to faithfully be praying for you...and to sign up for your fan club! I am now your biggest fan...you are the Mac-Daddy Mom! Hoping and praying for sleep for you, friend!
Love,
Julie
Day 8 photos are wonderful. What a litle ham !!! The camera loves her as does her Marmie who has finally learned to do this. Who knew it was so easy?
so so so cute... her adorable, ladybug self...
been praying for you today and now as i go to bed...
love you,
beth
praying now for sweet sleep...any sleep!
hopefully corey will find you all for a good distraction before or after the sleeping of course.
praying that your sleep would be multiplied! love the pictures!
~krissy evans
hi alivia and her family-even though i dont acctually know you all i just wanted to let you know that i will def. be praying for ya cause i know what its like to have to see a little girl go through something like that. i am only a college student and dont have any kids obviously lol but my friend had to go through a bone marrow transplant and she is now 9 years old and doing great so i know that God will be watching you and your family as alivia goes through all this and that she can pull through. i'll be praying tons. get some sleep : )
what a beautiful smile! she has a wonderful camera presence. :o)
praying for you this evening. asking the Lord for sweet sleep.
It's so good to see those sweet pictures! We were praying for another good day of responding to the medication... glad to know she did well! I pray that right now you both are experiencing restful sleep :o)
Blessings,
Rochelle Calvetti
It's late & I hadn't checked your blog today. I couldn't sleep so I thought I would write to say I'm praying for another great day with meds & for a little more restful night. She is just too cute! She is ALWAYS smiling! What a sweet baby!
Hannah Byers
My prayers for you the last several hours have been that you would ask for and know God's grace for the moment you are in and not fear what may come the next hour, day or week. Sounds like you are receiving that grace, Emily! I am so challenged by how you lay down your life and even real, bodily needs to serve your little one. Praying God will reward your tireless, selfless serving w/ some sweet, deep sleep today!
Love seeing that little girl's life-giving smile. :)
love you much, friend.
What a relief that she is not having any negative reactions! So glad to hear it. I will continue to pray for more of the same! Also praying that as the days continue, she will establish a better sleep routine and that until she does, whatever sleep you find, even if brief, will be full and refreshing!
Praying, praying, praying.
Love the pictures! Thanks so much for taking the time to make it possible to share them with us! They are much appreciated! And, you once again, are amazing!
Alivia looks great! What a trooper. I hope everything keeps going as smoothly as it seems to be so far(well, other than your lack of sleep)!
Thinking of you always,
Natalie Murdick
good morning- i can see you singing to alivia and how much comfort your presence must give her. praying that last night was filled with some longer minutes of rest. love you-jamie
Oh my Gosh! She is too cute! I want to squeeze her cheeks. Hope that whenever she can have visitors I can come up w/ Rach. Praying and thinking of you and James.
steph
that little girl's amazing! so happy! love the pics. so glad things are going well so far. will pray for the sleep. much love, xoxo
SHE IS TOOOOOOOOO CUTE!
I am thanking GOD that your day went well -- I will pray for sleep--- Restful sleep-
Continuing to Pray !
P Miller
I was just checking in to see how you all were doing and to let you know that we are thinking about you.
Keri at The Marrow Foundation
Love to see those smiles! Know that we are always praying. We pray for you guys at every meal and I pray everytime you come to mind, which is often.
Love, Les and the fam
Her little face is such a light. I know she brings you so much joy. Praying that she will continue to do well on the meds, and that you will both get good sleep today/tonight.
Love,
Amy
I am praying for you guys. I pray you will all get more sleep today that yesterday. Livi looks too cute in those pictures. You will be in my thoughts and prayers throughout the day.
lots of love,
moriah
Hello,
Just wanted to express our love for you all. We are praying that things will go as well as possible while you are in the hospital. May God continue to grant you peace and sleep during this season in your life!
God Bless,
The Freeman Family
What adorable picts--love them. Izaak and I look for picts each day. He prays Dear Jesus, help me not say noooo! and heal Lizi. (close enough on the name eh?) Love, Heather
lovin' the pictures, continued prayers!!!!!
Laura Mohney
Hanging on every word, drinking up every picture.
James, father to father to Father you are on my heart.
Tom Bueche
those pictures are too cute! praying for some sweet sleep for both of you.
lb
She is something else! Thanks for the photos. Glad to hear all is well. Of ALL the drawbacks, I think the opportunity to have each other's undivided attention and enjoy her every word and funny face without any distractions would be one of those hidden blessings. The Little People video is cute too. I pray for rested sleep. The kind that makes you think clearly and not feel overwhelmed.
Diana B.
What a cutie Alivia is. Last Sunday, Peter (6) asked his Sunday School class to pray for his cousin Alivia~ they all did.
Margot
Just wanted you to know that every night our 3-year-old daughter Lydia reminds us to not only pray for Ian but to pray for baby Wivia. Every night we pray for Wivia. We're standing with you in prayer...
Steve Murphy
alivia is cute as ever!! she is one amazing, sweet little girl! glad to hear how well things have been going so far (besides the lack of sleep). usually i check in every day (often several times) to see what's up. you guys are much on my heart and mind!
thanks for your example to me emily. i am continually encouraged by your selfless devotion to your daughter, and by your enjoyment of her . . . even while horrendously sleep deprived. i do not do a very good job enjoying my little ones when i have had little sleep, much to my shagrin. praying for restful sleep for you now.
also, wanted to mention (as i would if i had the chance to see you and talk to you) that i've been in touch with jessica stoppard. i ran into her aunt and heard that nia (sp?) had pretty much the exact same issues as ava. long story short, we've been able to talk a couple times about a bunch of stuff regarding the allergy/protein sensitivity. i'm now a year into it with ava and jessica is now just starting on the journey of getting her daughter healthy. so, i thought it was great how God made it happen for us to be in contact!just thought you'd like to know.
ultimately praying that livi would "sail" through all this, be completly healed and God's name glorified!
love you.
april
I love how adorable Alivia is(well, duh, everyone knows she's cute)!! I adore seeing pictures of Alivia. I pray for her daily and at my christian activities put it in as a prayer request. Love, Lydia J. of Salunga, PA
Emily,
I think I've met you briefly once. I am a friend of Meghan's. I just wanted to tell you that I'm reading your blog and praying for Alivia, truly she is the cutest girl ever. She has such happy eyes in all of the photos that you've posted. How wonderful that God has blessed her with such a loving family and community, and all of them with such a beautiful girl! Please know that your family and especially Alivia's happy heart is in my prayers.
alles gut,
-Betty
Emily:
Hi! I was your Christian Play Day teacher at Grace UMC many years ago. I also have had a bone marrow transplant to cure leukemia. I am not 14 years post transplant, and perfectly healthy. God is Good!
Please know that we pray daily for Alivia and for your entire family. I praise God for your faith and for the assurance we all have in Him.
Will keep praying for no complications after the transplant.
Doris McAnulty
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