Day +19
After well over 3 hours of rocking and a dose of Morphine, Alivia finally fell asleep for the evening. That girl can fight sleep like no one else. Today went well. She didn't throw up at all, so it seems we've finally figured out the perfect anti-nausea med schedule. We'll see tomorrow. She took her meds orally and tried to eat a bit (she ate about 40 sweet potato puffs...80 is a serving). She also drank about 4 oz of water throughout the day so that was great. Her poor bottom is a mess. It is so hard to change her diaper. She screams, gets rigid and fights to get away. It is the worst and I seem to always get to do it. I feel like I'm torturing her but I know leaving her bottom dirty will just make life so much worse. Pray that something will start to work and it will get better.
She had another dose of GCFS (white cell growth booster) and it made her WBC's go to 12. Very good. They will now see if she can hold onto them herself again. Pray that she does. She got another platelet transfusion (maybe it was from one of you who donated on Sunday! Thanks so much and thanks to Jeremy S. who donated today!!) Remember if you are A+ and want to donate platelets to Alivia let me know how your name appears on your drivers license and what your birthday is and I"ll get you signed up. You have to be approved by me/signed up by me before you donate or else it won't go to Alivia. Also remember if you are o+ and want to donate Red blood cells to her you can do that also. I need the same info either way.
Sonya and I painted the window at the end of the hall today. Thanks friend for the much needed visit. I had such a good time catching up. And of course can't wait for girls night. I had the best shower I've had in 28 days thanks to one of the other mom's on the floor. They were going to be out of there room for the morning so she let me use their shower. I felt like a real person for a minute and it was amazing. Even if all the other showers are in the gross shower at least I got to take one "normal" shower. Thanks Trish and Jackson.
Anyone who wants to get signed up to be a bone marrow donor can do so Thursday 3/29 from noon till 5 pm at the Hershey Medical Center Auditorium. I think it is free and you don't need an appointment. Just follow the signs to the auditorium from the North entrance. Being a donor doesn't mean you will get a call. It is such a slim chance you will ever match anyone but being someones match would be the greatest thing. I hope someday I match someone so I can repay the favor. Also if you are currently pregnant you can donate your cord blood to the national registry. Just go to marrow.org to get the info you need to donate. Someone out there did that for us and we are so incredibly thankful. I know if we ever have another baby I will donate the cord blood without a seconds hesitation.
Thanks to...
the Youngs for the card
Claudia Curry for the princess building set. it is a huge hit. I'll try to get a picture tomorrow.
The Freemans...great photo Tony and Lori. Major points for winter bathing suits.
Steph C. for the card
Troy, Jodie, Jalen, Bryce and Chase Campbell
Jim, Joann and Brooke Smith for the card and stickers
The Byers for the card, photo and stickers
April S. for my card.
Thanks to everyone is currently doing work on our house. It is such a blessing to know that Alivia will go home to a clean house. Your sacrifice of your time means so much to us. Without you we would most definetly not get this all done. I will try to post some photos from the next work day at our house. (you can still get in touch with Bill H. if you want to help out..there is a ton to do before we get to come home)
Also don't forget to get my your stuff for the nurses ASAP. Get your kids to participate, your neighbors...anyone who reads this. And my dad is in Indiana so you guys have the chance to drop things off at our house or give it to him at work. He will return to Hershy Thursday afternoon so get it to him before noon Thursday.
15 Comments:
I'm so glad to hear all of the good news you have to share about Livi. God is so good! We will continue to pray for all of your specific requests.
I have Livi's picture in my room at school and my kindergarten students ask about her everyday. One girl said she has heard of people sho cut thier hair and give it to cancer patients. She offered to cut her hair to give to Livi...so sweet. The students are very concerned about Alivia and ask me how and when she is going to get better. It has given me an opportunity to tell them about your prayers to God and your faith that He will heal Livi. Very few of my students go to church, so that is something new to them. One little girl said her Grammy prays, so when she goes to her Grammys she will make sure to kneel by her Grammy's bed to pray for Livi. Emily, You will never know how many lives you have touched through aharing your story on your blog.
Regarding the diaper rash, I have a suggestion that may or may not work for you. When my son was a baby, he had a virus which led to a severe diaper rash. His bottom was so sore and even bleeding. I understand how you feel like you are torturing Livi when you try to clean her bottom, yet it is necessary. What I did was put him in his baby bath tub and sit it on the kitchen counter. I used the spray hose from the sink to gently spray his bottom with warm water. It was somewhat comforting. Then I wwould gently dab instead of wiping. I would just alternate spraying and dabbing until he was clean. (I don't know if you have access to a spray nozzle, but perhaps a spay bottle with warm water would work just as well. (Just a suggestion that may or may not work). This is daring, but often I would justhave him lie down to sleep on a lined pad without a diaper to let the air get to the dry bottom to help heal it. You may not want to do this because of risk of infection, but I'm sure the nurses could tell you if that would be a good idea or not.
I am so glad the Princess building set was a big hit. It looked like it would be a lot of fun for your little Princess.
I pray you will continue to see God's healing touch on Livi every day. God Bless......
C Curry
Praying for healing--
The bank staff is all concerned and they are reading the blog as soon as they get to work--
You are all in our thoughts everyday !!!!!!!!!!!!!!
Phyllis
Hi Emily! Just wanting to drop a note to say Hi! So nice to hear the good news and of course we continue to pray for more and more of that! Also praying for the terrible diaper rash to go away and that she will soon feel better down there!
Hoping that the table made it there. I tracked it on-line and it says it was delivered on 3/23... I hope it will be perfect for her room!
Cheers, Smiles and lots of Prayers to you and the clan there!
Love, Jessica
Still reading and praying for you all. I'm so grateful that Alivia was even able to have the transplant. Amazing what medical technologies we have today - I praise God for that evidence of his grace and mercy. You are in our thoughts & prayers.
The Brodes
Hooray for the shower! And a visit from Sonya. How wonderful!!!
What a blessing it is that people are working on your home. It shows what a special family you are--people's eager willingness to serve you.
Sorry we've been mail slackers! We'll get back on the ball here soon.
Love ya!
Julie
So glad to hear a good report!!! Hopefully the diaper rash will start to improve. Her poor little bum.
Many thank-yous on their way from Ohio. Hope they make it in time!!
God Bless,
Caren Kruest
Praying for a settled stomach for Alivia and a healed diaper rash.
Love,
Amy
I'm so thankful to hear that Alivia is doing well. She remains in my prayers. I just cannot stand the idea of her awful diaper rash, though. I'm sure that will all of the doctors and nurses around, they have thought of everything, but a quick internet search showed that Triple Paste might provide her some relief ...I'm not sure what the doctors' thoughts are on that, but if they say its ok, it would be worth a try if you haven't tried it already. God bless you guys!
i'm so excited about how things seem to be going. i'm sure this is still very difficult, but i'm so thankful that the transplant seems to be going so well. know that i think of you, we pray for livi & check the blog pretty much every day (sometimes more than once). thanks for keeping us so well up to speed emily. xoxo
HI
A FEW HRS AGO, I HAD A CHANCE TO SPEAK WITH "PA" ..
HE SHARED A FEW LITTLE STORIES ABOUT THE DARLING..
I HAVE YOU IN MY THOUGHTS..AND MANY PRAYERS...
GOD RICHLY BLESS YOU..
MAY YOU HAVE A PEACEFUL DAY
Phyllis
Miss Thang! WHERE IS MY PHOTO! I know you are busy, but I need my daily update.
Take care,
Heidi
So sorry about that wicked diaper rash - praying that you will all see some good healing there very soon! Praying also for a return to good appetite. By the way, there is "stuff" for your dad to pick up at the high school in the guidance office, so hopefully he will stop there (or has already stopped there) before returning to you Thursday. Jan A. says she alerted him to come by....And definitely WOO HOO on the WBC count of 10! I am impressed! Hope it stays!
God bless-
Cathy S.
Emily,
Have you tried Arbonne's Diaper Rash Cream?? It works great & I have a new bottle if you would like to try it. I can send it down with Cynthia. Let me know! I use cloth diapers & it works wonders. It's the only all natural cream that I can find that doesn't have all the chemicals in it like mineral oil & alcohol & other yucky things. I will be praying.
Hannah Byers
Hi Emily,
Thanks for the reminder of cord blood donation. I was able to get a link to cryo-intl.com and they're sending me an application + a kit. Its free and really easy. You have to be between 28-35 weeks along (in case someone asks.)
I'll keep praying for Livi's skin to heal.
love,
Viv
Hey Emily!
I don't have an email address for you, so I hope this is okay. I checked my Central Penn Blood Bank card and realized that A+. I'm glad for yesterday's blog because I didn't realize how to become "approved." I want to schedule with the Hospital to give blood and platelets on Sunday. My name as it is printed on my drivers license is Jennifer M. Van Buskirk. What else do I need to provide for you?? Please feel free to contact me at (717) 575-2209 or j.vanbuskirk@earthlink.net if there's anything else I can do. You all are in our hearts, minds and prayers. Thank you for your strength and grace.
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