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 +103
PTLD is a rollercoaster. It is never the same from case to case. Ours is all over the place. Some days the numbers look encouraging (in fact one day they were all but normal...unfortunetly that was an error on the labs part). Yesterday her IGM was down even more than right after the pherisis on tuesday. That was encouraging but then today it was double Wednesdy's number. What to think I dont' know. It may be another error. Regardless they always assume a number that is very bad is true and often question a number that is good. So she got pherisis again. It went fine. We are praying that tomorrow and Saturday's IGM and Viscosity numbers are stable or lower so that she can get the cathader out. It is a direct line for infection. She currently has both a Gram + and Gram - infection so we need to get that line out ASAP. It is all a matter of weighing what is better...get the line out to keep infection at bay but risk not being able to pherisis if the numbers get bad again. They don't want to put in another line so they will keep this one till they dont' need it anymore. All in all a crazy balancing act.
She is on 3 new antibiotics and they are making her nauseous. She has throw up for the first time in a while today. It is so hard because she can't sit up because of the pherisis cathedar.
Thanks to Andrew for the post card, the Bookers for the great burgers and Jake for being hilariously fun. We miss you already
posted by Alivia's Momma @ 7:18 PM
13 Comments:
wow that must be terribly hard for you I continue to pray for you daily and will pray for Alivia's numbers and for you to have strength and for you to rest in God's abounding love, grace, and mercy "it is new every morning great is his faithfulness" we serve a powerful God
Becca
"do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God." philipians 4:6
let us together make our request for Alivia's COMPLETE healing known to God!!!
Emily, as Dr. C was leaving the room this evening she said to me, "I just had to stop by and see my baby, I love her"! It is so cool as I have been praying that God would cause Livi's docs would love her! So add another person to the "Livi train". Mom
P.S. She also commented to me that she can't believe how well you are doing after spending the last 113 days and nights in this hospital. She said she could never have done it.
Emily we miss you guys terribly, and feel your pain. We are praying daily. Loads of Love
Trish Jackson & Pete
Emily,
I just wanted to let you know that I am praying for patience and faith for Livi's army tonight. Patience is not my virtue. :) But, I think many of us could use some help with this right now. This battle has been so long and as we all feel the frustrations increasing daily as we read about the roller coaster you are riding, (and I'm sure our frustrations are minimal to what you are feeling) I am asking for RENEWED FAITH FOR ALL OF US in the Lord's plan and PATIENCE to await sweet Livi's miracle...and, yet, I will beg, plead, and cry out to him as well to heal her completely. :) -- told you I stink with patience.
Praying, praying, praying!
Chloe's comment definitely hit the nail on the head for me. I don't know how you are doing this, Emily, but I'm praying for all the faith and patience and strength to hold on until the craziness can stop and the miracle arrives. God bless all of you -
Cathy S.
Praying for negative blood cultures, the pherisis catheter out, normal lab results, and a healthy little girl. I continue to pray for Livi and the whole family. I don't even know you, but I check for updates on this blog about 3 times a day. God is doing and is going to do amazing things through your experiences. I know it might not seem like it right now, but you are making a huge impact on a lot of people by the way you demonstrate your faith. God bless you, Emily.
Lisa Rader
Bethlehem, PA
Emily dear, Oh toget off the rollercoaster!I pray daily for good numbers that become constant. Praise God for the doctor who loves Livi. That personal connection is very comforting to me as it must be for you. Meant to thank Gigi for kissing Livi for me. Thanks , Gigi. Means a lot to me I so desire ti do it for myself. Love to all my dear ones. Includes James who I don't always mention but who is automatically included. Hugs and kisses as ever!!! Marmie
I am faithfully praing for Alivia. I pray for the day that she has the health and strength to cover an entire room with stickers - from top to bottom! I pray for the day that you return to your "new" house, having dinner as a family and enjoying each other's company. I pray with those visions in mind. I believe that God gave them to me. I believe they will one day come true! God bless!
Checkin' in today on you and Livi. We continue to pray for all of you. Was reading about suffering and the cross today (again--can't get enough!) and my thoughts turned to you, Emily. Someday when all this is over and Livi is well, what might God use you to say to moms out of the storehouse of these times? Surely He has shown you the "treasures in the darkness" --the gift of Himself when all else seems bleak. Indeed He is using you now...but for the future we pray!
I don't know what to say Emily but still wanted to write something to let you know that I'm reading the blog, praying and thinking of you guys everyday.
Nicholas dreamed the other day that the family was together and that Livi was all better. I hope it comes true soon!
love,
Viv
ps. Thank you for the baby-welcome gifts!...how kind and thoughtful, in the midst of what you're going through.
Precious Livi and Family,
Praying for you today ... for GOOD health, no, EXCELLENT health in Jesus Christ! and because of Him! and for His glory! and praying that you, Livi, and family, see Jesus more and more in the midst of this current pain. Praying for that miracle! Love from Indiana, PA, Janet S.
I am so weary of all the attempts to be positivie, even though I suppose this is when our faith needs to be strengthened the most. I yearn for a miracle with every fiber of my being, and as I pray for my own I pray for yours. May God and God alone be enough to continue to sustain you.
Love,
Amy
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