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 +60
If you do the math you will realize we hae been here for 70 days. It seems like forever. We officially are the people who have been on the floor the longest right now. There were 2 other transplant patients that came in March 28th and 29th... one went home yesterday and the other is going home tomorrow. I actually said to the doc "we're never going home, are we?" he laughed and said "of course you will" I was wishing for a date but that doesn't seem to be happening. Each day it seems like one thing gets better and 2 more get worse. Her liver functions are better but now her kidney functions are worse. They are changing around meds, adding and deleting things in her IV nutrition and trying to do anything to make the numbers better. There is no med that just fixes the kidney so please pray that this will make it better.
On top of it all Alivia is getting at least 3 teeth. One is poking through now and the other two are very swollen. Because of it she doesn't really want to eat. Her stools were less yesterday but today seem to be more. can't really tell until the day is over and the final tally can be made. Pray things start to get better.
We are excited for the return of Pa tonight. He was home for work again (Mon-today) and was much missed. He will probably be heading home again next week for some work. He is amazing (in case you didn't know). Thanks Dad for being here for us and doing everything you can to make this whole thing easier. I love you, James loves you and Livi..well Livi adores you.
Thanks to Krissy Evans for the card, MOnica Coffey for the care package, Sandra Knowles for the generous gift, Great Grandma and Grandpa McClements for the note, Susan Forry for the card, Maureen Bourke for the Super cool Butterfly lights (they light up the whole room), the wand and other super fun stuff, Katherine Millen for the card and Erin for being my stylist.
posted by Alivia's Momma @ 5:11 PM
19 Comments:
70 days...oh my. I am sure it feels like a lifetime. We are praying for you every one of those days!
Much love, yoders
Emily, some might think of this as discouraging...well, it is the only touching the surface of what your little angel is going through. Those of you reading, please continue to pray for our faithful God to sustain us...we are praying for grace and mercy to sustain our hopes in light of the endless parade of doctor and the new information on what has gone wrong today, and what might or might not be causing it. If this sounds desperate...well, it is. God is close to the brokenhearted, and we are. God will not forsake us, he will uphold us, please God do not delay. Mom
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We are praying for your grace and strength and Livi's healing each day...you are truly such a special and faithful family, you are teaching all of us we must truly rely on the Lord. Emily, you and James are such good parents. David and Gretchen, you are such good parents and grandparents. The Lord blesed all of you with each other and all your special and dear family members and friends- so many people who love you all and who are praying for your beautiful little one's healing. We know you are weary and discouraged and afraid- but the Lord will lift you up and strengthen you- day by day, hour by hour, minute by minute- do not despair. We love you all and you are in our thoughts, our hearts, and our prayers. Tell Livi many, many people in Indiana love her and are praying for her. God Bless you all. Love, the Vandernecks and very extended family
We have you in prayer-- --
You are in many hearts -- often co-workers ask for this Blog Address...
they are truly concerned..A few of our work staff saw Pa yesterday
YOUR FAMILY HAS BECOME A SPECIAL FAMILY TO ALL OF US
GOD RICHLY BLESS YOU
Phyllis Miller
I can only imagine how weary you must be. Praying for healing, strength, wisdom, and a trip home soon--for good!
Love,
Amy
Hi Emily, James and sweet sweet Livi! We are still praying here in Baltimore every day - many times a day! Not only for Livi's full recovery (of course!) but for strength for you to get through this too! I can't begin to imagine all the emotions you feel, but just know - you are being lifted up!!!
Love and prayers, Jessica
My longest stay in the hospital so far has been about six weeks, and I know how quickly it starts to feel like prison. Constantly praying for all of you.
And in response to your comment on my blog -- I totally agree with you. I've said many times that all doctors should be required to have a bone marrow biopsy/aspiration. I've been told so many times that "they don't hurt at all." Right. I'm glad that they put little ones under for them, and wish they would do that with us older patients, too. Sometimes you just want to be treated like a person that they can relate to, and not just another patient.
Praying.
Can't believe that it has been that long! You strength and perseverance is so encouraging. And to James trying to keep his head focused with the business & house projects when his heart is with you guys in the hospital...you guys are doing wonderful! We are continually praying for you all as you battle with daily struggles & frustartions. May you be blessed with a ray of sunshine everyday that will lift your spirits and continue to help you have a smile on your face for precious Livi. You are both great parents!
Love you all, The Knutsens
Emily
I continue to pray that you would enjoy sweet communion with our Lord and have a heart and mind set on eternity.
"My comfort is in my perfect faith in the goodness and love of my Father, my certainty that He had a reason in thus afflicting me that I should admire and adore if I knew what it was. And in the midst of my sorrow I have had and do have a delight in Him hitherto unknown, so that sometimes this room in which I am a prisoner seems like the very gate of heaven."
E. Prentiss
Can't help but worry but praying faithfully nonetheless, and constantly as always. Mail on the way but Pa's sent to Indiana for when he returns for work. Loving you all, Marmie
I was just down sharing the latest update with one of the secretaries at my school. I told her about the possible option of an experimental treatment. She replied, "Hey! It's been a very experimental treatment that has been keeping my husband alive for years." He was heavily exposed to agent orange in Vietnam.
I am not suggesting that this is the route you should go. What do I know? Just wanted to pass her comment along to you.
She, by the way, has been the kind of hero (or heroin) to her husband that you have been to Alivia. You both inspire me.
Emily,
We are still praying for your dear one.
May His grace be abundant,
Jennifer Hanson
Washington
I want to add a few words about Pa (my brother Dave) and Gretchen (formerly Chookie,currently Gigi). You guys are in our prayers too. You are an inspiration to all parents and grandpartents who have followed Livi's story. Your faithfulness in this trying time has been amazing.We love you guys and pray for good health for Livi and a return to "normalcy" for James Emily and the grandparents.
Brother Mike and Joanne too..
Psalm 103:2-5:
"Bless the LORD, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satifies you with good so that your youth is renewed like the eagle's."
Psalm 103:19:
"The LORD has established his throne in the heavens, and his kingdom rules over all."
I love you guys. I'm praying for Livi.
Uncle John
Dear Emily,
Livi's sweet face is almost continually in my mind, reminding me to pray for her often. Love, Janet S.
Emily, bless your exhausted, overwhelmed little hearts. Danny, Emma, and I are praying for your darling little Livi everyday. I wish I had the right words to say, so instead I'll send all three of you and big hug (insert hug here). All our love, thoughts, and prayers,
the Regeimbals
Hey Emily,
I thought of you today because we have a bone marrow drive at our church tonight. I wish I could've been at the one you had... but of course the miles are quite the obstacle. I just waned to tell you that I think of you, James and Alivia often and keep you in my prayers always. Love you guys!
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