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 +52
When this transplant process started I thought "at least we'll be home by Mother's day". I knew Livi's birthday, Dad's birthday and Easter we would be here but I assumed we would be out by Mother's day. We wont' be out of here by then. Maybe the week after. But I'm not holding my breath. This infection requires a 10-14 day antibiotic course. Alivia is hooked up to her IV's up to 7 hours a day for antibiotics and she is on IV nutrition 12 hours a day. That means very little time not hooked up. She hates walking around when she is hooked up and usually doesnt' want to leave the room with the IV pole. She is pretty crabby from all the steriods. Most days she just wants me to sit with her. She definetly doesn't want to stand or walk. We have to make her do it so that she gets some kind of excerise. It makes for long days.
We are desperately trying to get our house done. The condo that we were going to be staying in is needed by another family starting Friday so my parents will be moving back to the hotel and we will have to be able to go to our house when we are discharged. This adds a bit of stress to James (and in turn us). He is working close to 80 hours a week with his job and the work on the house. We dont' get to see him as much as we would like cause he is doing so much to make our home beter and safer for Alivia. Pray that he is able to get it all done also pray that he doesn't get sick. Thanks Bill, John, Chris and Jeremy for your work this week. It means more than you can imagine. Especially when it means we get to see James (even for an hour or two).
Here is a photo. It's been a while. You might notice how chubby her face is. The steriods make you puff up so much. Can't wait to get off of them. This is a photo of the best part of her day today. I was out of the room for a bit and when I came back Gigi, Pa and Livi were having a music/dance party. Gigi got some instruments and they were playing. This is her smiling by the way. Thanks for making her smile even if only for a bit, Gigi and Pa.
Thanks to...
Deb Gilgore for the card
Claudia Curry for the princess dress...i'll take a picture once she tries it on.
Beth for the cutest dress. I can't wait to put it on her. and the sweet PJ's
Marmie for the GIANT Elmo (it's bigger than Livi)
The Ryer family for the stickers, crayons and book
April Spinetti for the sweet note
posted by Alivia's Momma @ 12:54 AM
23 Comments:
Praying for all of you. praying for James & the house to be done. Praying for days without an IV pole. Praying for you all to be in your home soon. Love you, Beth Chase
Praying.
You all are on my heart and in my prayers.
Maryann Plesnicher
You can bet you are in our prayers!!! Jesus is walking along side of you as you go through your day, Emily. See if Gigi can bring Alivia a Gogurt - if its okay. It might be a bright spot for her.
Thanks for keeping us abreast to what still needs to be done. I'll pray for James' health, you're health too and the house.
We love you. Kiss and hug that little girl for us.
Loretta
Still praying.
Peggy
I just want to reach out and hug you all. 00000 - That is an email hug. What a great day that will be going home. It will be here soon - (I know not soon enough)
Love,
Diana B.
Emily, you are amazing...even one of the docs commented yesterday on how strong you are...though I can see the weariness and concern in your eyes and voice. Livi not being "herself" is hard also...we are praying, praying, praying. Gigi
Praying for yinz
Maureen
Praying....
Isaiah 40:28-31
Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
Praying still, Emily, and wishing I had a magic wand that could instantly heal Livi, make your house all ready for you, and bring you, James, and your extended family all the health, strength, and peace of mind that are hard to hang onto during this very demanding time. I'm praying for all those needs you expressed. God bless -
Cathy S.
I find myself at a loss for words, but my prayers remain.
Emily, my heart is aching for you as you walk faithfully through this hard, hard time. I'm praying for all of you. I'm praying for a miracle.
With love,
Amy
I've been waking up in the middle of the night for the past week. At first I was a little irritated, but I remembered I prayed for more quite time with the Lord. How good God is to allow me to lay with Him and pray. The great God we serve allows me not to be tired in the morning or crabby to my children. Emily, this time has allowed me to pray for you all so much, and for God to sustain you. I will continue to pray for complete healing, and for you not to grow weary. Prayed for nighty.
Kristy Scherf
You're such a wonderful, amazing, incredible, fantastic momma...
livi is so blessed.
i'm praying and praying,
xoxo,
beth
"Oh! the peace which Jehovah gives to his people, even in the midst of the most trying circumstances!"
-spurgeon
I am feeling like we are on the verge of a break through, though the road ahead is still long. Each step is building faith for the next, and we are all praying through it with you .
Praying, as always, for our Precious Savior to meet every need.
Jill P.
Livi is still a cutie pie even with swollen cheeks and being hooked up to all those wires as always I'm praying for you guys!!!!
Becca
Livi is still a cutie pie even with swollen cheeks and being hooked up to all those wires as always I'm praying for you guys!!!!
Becca
Emily,
When I think how hard it must be to see Livi so sick, I think it's unbearable- but,how amazing it is that you have not only persevered but continue to glorifiy God through the process. I am so greatful for God's incredible grace and help to you this difficult, difficult time. We pray for "leeve" as Benjamin says,
amanda kim
Oh Emily, may the Lord uphold you and give you peace. May He grant you restful nights, and hope-filled days. May He gently turn your gaze to Him in His glory and goodness. May He especially comfort you, James, and Livi in His strong and loving arms. And may He wondrously and miraculously heal precious Livi's body. Oh, may He wrap you in assurances of His goodness, love, and sovereignty in each and every moment of your day and as you lay down to sleep at night.
Surely His mercy and kindess shall follow you all the days of your life. (Psalm 23)
I will pray for God's continual healing of Livi's body, and for your house to be ready for your return, as well as for Him to pour out His grace lavishly on you throughout every minute of your day.
Sarah Sensenig
I am praying against the crashing waves of disappointment and discouragement. God is not surprised by the timing of everything or the weariness of your heart (and body) right now. He is right there with you. And somehow, I think this Mother's Day will be an amazing time for you--one that you will look back on and be grateful for.
We continue to pray and pray!
We love you!
Little Alivia still looks like a sweet angel. She is still adorable. Please know that you remain in my prayers!
Your cheering section is still here! Emily, you will make it, James will make it, and Alivia IS making it! We're praying. Love, Aunt Cheryl
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