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 +20
The last few days have been ones of very little sleep for Alivia (and thus for me). For some reason (we are blaming the new oral steriod) she hasn't falend asleep till around 1am. And then today she only took an hour and fifteen minute nap. Not her norm. Thankfully we were able to talk to the nurses and get her evening dose move till 5 pm instead of 9. Unfortunetly tomorrow we add a morning dose and thus the two doses have to be 12 hours apart so there is never a peak in the amount of steriod in her body. Steriods will hopefully keep the GVHD at bay. Pray that the keep the GVHD and not the sleep at bay.
Her WBC count has been fluxuation as is the norm for transplant patients. We are still on track for what is expected. Lots of waiting. Thankful no fevers (pray that continues). Her immune system is still fragile and we are still being super careful not to expose her to anything. She is getting platelet transfusions almost every other day and red blood cell transfusions ever 4 or 5 days. In oder to go home she would have to keep an ANC of over 5000 for three days and not be transfusion dependent. So we could be here for a while.
She has started to eat a little. We are hoping to avoid the NG tube (a tube that goes up her nose and down into her belly and would stay in indefinetly). If she doesn't start to eat more or doesn't take her oral meds well then she will get one on Monday. They let us decide and we said we would like to give her the weekend to eat more (as she only really started to want to put anything in her mouth at the beginning of the week). So please pray that she starts to eat more than she's eating now (and things that actually have some calories and protien to them) and also pray taht as the add more meds she wil continue to take them. She may have to take up to 15 oral meds a day and that would be hard for anyone (all liquid).
A few photos from the last couple of days....
A cheesy grin (that I can't resist)
Because of the sore bottom she spent most of the day in leggins, boots and a painting smock.
Today was the return of her two favorite men...Pa who was in Indiana ore taking a really long nap if you ask Livi
And Da who couldn't visit cause he had to lay tile in our bathroom so that the tub could be coated on Friday. He worked till 2am. Thanks babe.
Thanks to...
Phyllis Miller for the generous gift and for helping with the nurses gift
Marge Lageman for the soft purple robe
Beth Chase (and family) for the stickers, movie, socks, puzzle, books and magic grow sponges (big hit this afternoon)
Leslie Yoder for the sweet card
Vicki Moore for helping me with the thing for the nurses
April Spinetti for always encouraging me. (miss you!!)
Deb and Rick Gilgore for both of the cards
Eden and Aksel Yoder for the cool Princess birthday gift for Livi. She loves it and had to show her Daddy and Pa when the got her tonight
Aunt Kathy for the cute wind-up toys
Nicholas Haughery for helping with the nurses gift
Marmie for the stickers and card
Cathy Schloemer for the stickers
Carol Jean Fredrick for the stickers and card
Carla Sandbothe for the stickers and card (trust me you can never have to many stickers....she goes through 5 or 6 sheets each time she plays with stickers...which sometimes is 2 or 3 times a day)
Maryann Plesnicher for the generous gift.
posted by Alivia's Momma @ 11:28 PM
14 Comments:
Okay, we must have an investigation into the postal service at Hershey. I mailed that card last Friday. Slow, slow, slow.
Anyway, glad that you get the weekend to see if she will eat. I will be praying for such.
Love, Les
Praying for the steroids to have all good effects (so Livi will sleep more too) and for her appetite to improve. Praying for that sore little bottom. And I have to say that the photo of her and James is especially dear! God bless -
Cathy S.
Praying for you guys today. So many prayers are being offered on behalf of Livi. God is faithful and loves to respond. Thanks for your continued example in the midst of trial.
Love,
Amy
Emily,
Sorry I didn't get my cards for the nurses in the mail. I plan to send them this weekend anyway, maybe you can just give them mine seperately or save them for the day you leave. :)
Still praying for everything you ask and most of the time more. Praying especially right now for eating and a sore bum.
Christi
i really like the picture of livi with james. i think she looks so pretty in that one. xoxo
Well, others have said it, but the best photo of the day is Livi and James. Livi is GORGEOUS! (and James...well, he's YOUR husband, so enough said! haha!) She really looks so good, Emily.
Enjoy today!
Love,
Julie
Phyllis~
Starting the day with ALIVIA prayers--
I pray for healing in many ways -
Thank you always for sharing..
GOD BLESS ALL
Sending warm thoughts from INDIANA..
PM
----I don't think I sent the last message correctly -- sorry
I am not the greatest for figuring out blogs and how they work--- the message is for all of you --- not me :-)
I will pray that she will start eating so they won't have to put that tube in her nose. I pray that she starts sleeping better. I also loved that last pic of james and livi. Her eyes look so beautiful. James, you do such a great job at caring for your family. And Emiy, you are doing a great job at caring for livi and james. You are going through so much, but not once can I remember hearing, or in this case reading about you complaining. You put others before yourself, and that is a great example to me and I am sure other people. Keep trusting in the Lord to get you through this time. The Lord has blessed livi with two wonderful parents. I will keep you in my prayers.
Love,
moriah
Yep, the pix of Livi and James is the winner, hands-down!
Still praying!
Mary Ann K.
I get to see Livi tomorrow. I get to see Livi tomorrow. La la la la la laaaaa. Now picture me doing cartwheels ;-)
Can't wait to see all of you!!! Do you think Livi would like a Primanti's or Beto's. I'm just trying to think of some 'burgh fare that might be tempting.
Hope the lil tookas is healing. Thanks again for the pics. If ya get a chance, call my cell tomorrow.
Mucho love,
GAL
O+ donation Saturday at Rose Inn, Indiana, Pa. Red Cross Drive. I do not have any e-mail address for you so here is my information
Francis J. Wilhelm
Nov. 18, 1936.
Hope it helps.......
Livi, I am praying for your little bottom to heal, for your body not to depend on transfusions, for you to EAT MORE & for you to sleep! Please try to sleep a little more so you can get all rested to play hard the next day & so you can eat lots of yummy food to give you strength! Your mommy loves you so much & would do anything for you along with your hard working Daddy! You are so loved Livi! God bless you tonight & keep up those adorable grins & sweet smiles! It melts anyones heart who sees them! :)
Love you,
Hannah Byers
Hello,
It is so great to know specifically what to pray for. The bum has been top priority as well as perfect engraftment (is that a word?, appettite and sleep)
I absolutely loved the quick conversation I had with the infamous Pa. I so look forward to someday actually getting to hug Livi. My children hear all about her and would love to see her. My Mom's small little country church gets my weekly updates and contines to pray
Emily,
In the (great) but daily trials of a working,teaching mom you have reminded me of appreciating every moment. After sevearal nights of very little sleep due to new molars I am encouraged by your attitude and knowing that it is my attitude and faith that matters. "Be still and know that I am."
Thank-you and know that everyday I am amazed by your example, humbled by your attitude and humored by your humor:)
Diana B.
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