Easter Sunday
We had our break from the hospital and it went well. It was nice to be with everyone and so nice to be in the Booker's home (THANKS A TON). Cynthia made a great meal and we all had fun quizzing each other and just laughing in general. We also got some great pictures of the cousins playing in the yard. It was so nice to be out and about. We also had a bit of time when we came back that she didn't have to be hooked up to the IV so we went down to the play room and let her cruise around. She has been doing that with the IV but its so much easier without.
Tomorrow the medical drama begins again...or does it. They have to discuss when they can fit in her surgery. She will be having a "port" installed. That is a line that can stay in for about a year and is a direct line to a vein so that they can always get a blood draw or medicine in without sticking her a bunch of times. There are two types...one that has 2 tubes that come out of the skin and are always visable and another that is a small disc under the skin that isn't visable and is less likely to get infected. I think that the under the skin kind would be easier for her since she's so little and unable to understand that she can't pull on the tubes. But they have to see what the surgeons can do. While she is sedated they will also do another bone marrow aspiration/biopsy and possible a lymph node biopsy although they aren't sure if they will be big enough to get out or is it will be really hard to get one. They are doing all this to test again for the different kinds of leukemia they already ruled out. just covering all the bases. I am fine with the covering of the bases but also shocked at the ease with which I now discussing cutting my baby. 9 days ago I would have had heart palapitations if you mentioned Alivia and surgery in the same sentence. Now I find myself nodding along and agree to it. Its the best thing for her just such shift in our lives (obviously).
Pray that the white blood cell count continues to drop (69 thousand today...lowest count yet). that her organs remain great, that her spleen shrinks, an average persons is the size of their fist (imagine a baby fist) and hers goes from her ribs to below her diaper line. It is also extremely hard. They say it is packed with white cells. Pray for a positive diagnosis and that she won't suffer through harsh treatments.
Thanks for today.....
The Bookers for all the generosity they have showed us and our families (Cory talk to Bill about the food....)
The Millens for coming to visit and bring such a cute book for Alivia
The Kings for the goody bag (alivia loves opening gifts so much we just keep putting everything back in for her to open again and again.)
The Almengores for the cute picture, the great balloon (Livi points and laughes), the basket-o-fun and the heartfelt words. Bri you are so thoughtful.
the Cranmers for the books. They are so fun.
Cynthia for the Hedgehog and the yummy lunch
Uncle Andrew and Uncle Aaron for the easter basket
Mom and Dad for everything....but today for the singing frog.
Cards from Jim and Jean McClements and Karlyn Sentz
And the Hospital for the Easter Basket and Easter Pass. We feel so blessed that this is the hospital God has us in. We are taken care of in so many ways. Truly a blessing we didn't expect.
If you would like to collect the tabs from cans of soda and bring them or send them to us they collect them and get money for the children's hospital activites and the Ronald McDonald room stuff. They got over 12 thousand dollars to help support the families of children in the hospital last year. Just another way we are being blessed by the hospital.
16 Comments:
Hi, Emily -
I am so glad you were able to have a "normal" Easter celebration with your family and others who love you. I hope the spring was as lovely there as here - many flowers in bloom, perfect spring weather. You and all your family continue to be in my thoughts and prayers. May God bless -
Cathy S.
glad to hear you had a good day. i am praying for you and baby "louy" :)
love you,
bethie
Night and Day we are tracking w/ you via your blog. I'm so glad to be able to be so well in touch w/ ya'll throughout this ordeal.
Praise God for a day full of His blessing and mercy to you!!
Alivia is being so incredibly well cared for through this. She is learning about the love and mercy of God in a way most little 1 yr. olds don't get to, and it's through your faithful love and care of her along w/ all these folks showing her as well: through their cards, gifts, prayers, etc. What a blessed little girl she is!
We will be praying for you throughout the day tomorrow. And, I'm going to pray tonight that you will "lie down and sleep in peace, for you alone, O Lord, make [us] dwell in safety." Ps. 4:8
May the knowledge that everything about tomorrow is in His Hands put your heart and mind and body at rest tonight.
And, you're so very welcome for the basket. I wanted to do soooo much more. We have listened to the Praise Baby CD's from the library and love them. I thought Livi might like the visual stim. of the videos. It may prove to have a calming effect on you as well. :)
Love ya'll much!!
I am so happy to hear that you got to leave the hospital for awhile. We'd love to come up for a visit if it's ok. We need to figure out when.
I sent a gift (in a bag) along with some drawings make by the kids, with mama. I hope they get to you soon. They are sorely wrapped but this week has been out of control as we had 28 for Easter dinner here (and I am disorganized on a good day)
Love you lots,
Aunt Anne
Hi Emily -
I learned of your blog from Lord of Life Church in Indiana, PA. My brother and his family attend there. I live in California and am training to be a registered nurse. I am currently doing clinicals in Labor and Delivery; this week I will be in Antepartum and then in Neonate ICU. In a few weeks I will move on to Pediatrics. As I go to class and the hospital I will pray for you, your daughter, and your family and follow things on this blog.
May the Lord bless and keep you and your family-Tim
Emily,
My dad wanted me to tell you that, "I am praying all the time for Alivia. i am praying that she will be healed, but i am right now praying alot for James and Emily. this is so hard, but the Lord is in controle of all things, and everything He does is good. He will comfort and keep her safe." he cried as he talk to me and pointed to the piece of tape with her name on it, that is taped to his hospital bed frame. he prays for her all day, he said. he wanted you to know that. we love you all so much.
love
rebekah
Emily,
Sooo happy that you had a pass for Easter and got out to celebrate with your loved ones. Alivia must have been happy to leave the hospital. Hope you lived in the moment and enjoyed it all! We read the blog night and day and will continue to pray for Alivia.
Love, Becky
So happy to hear that you got to have a pass and were able to enjoy a moment of "normal" again...it made my Easter to hear about your Easter! We will be praying for you guys and Alivia today as she will have more tests, etc. done. Thanks so much for all the updates...they are nice & help to be kept up to speed with everything. Our God is bigger than all our cares, and I am so thankful for that!
Sounds like a wonderful day of celebration. I will be praying for you today as Alivia has to undergo these yucky things. I will pray for peace and strength for you. You are really doing an amazing job of trusting your baby to the Lord. I know how difficult it was for you just to have her get her vaccines...now this. You are definitely being stretched and finding strength you never knew you had. God is good...even in crazy times like this.
I am going to call your cell and leave a message....was coming up today...guess who got what Aksel had...oh, that would be me...don't want to interrupt those glorious drops in the white cell counts. I will be up as soon as my sore throat goes away!!! Know that I am praying for you and that you are never far from my thoughts.
"STrength for today and bright hope for tomorrow...GReat is thy faithfulness Lord unto me"...will be praying and singing that for you and Livi today!
Love, Les
Good morning Emily & Aivia,
We are so glad you had such a refreshing Easter getaway! Autumn loved baby Livi's pictures & she blew her lots of kisses, hope she got them!
Love& prayers, The Kings
dear emily,
memories, laughter and family times together celebrating the risen Lord . . . so glad you had such a wonderful easter day.
thanks for sharing your beautiful PHOTOS with us -
so precious . . . so sweet.
enjoyyourday there -
may God be your strength and song today.
praying for you today and
sending hugs your way.
love, mrs. c
Hey Emily,
So glad you guys got a pass for Easter, I hope you were able to enjoy the day. I've been praying hard for Alivia...I read the blog daily to keep up to date on her status. I miss you guys and will continue to think about ya and pray for her!
Good morning Emily-
i am glad to hear that you had a wonderful time with your families. lyndon and i will be up to visit tonight. we prayed for Alivia last night. we love her a ton. have a wonderful day and maybe you can go for another walk as the sun is out again! i am loving this spring weather.
His grace is new and present for each day! You are walking in a manner worthy of the calling to which you have been called, with all humility, gentleness, with patience, and bearing with one another in love~ Eph4
love you~jamie
Emily-
I for got to write that i believe that i have the tape of last week 24 for your dad, so please let him know we will bring it up tonight! jamie
I love to see your "thanks" every day. God's grace and strength is more obvious day after day. You're a different person than when this started. You're getting more beautiful every day.
My confidence in God is greater because of His love at work in you.
kristi
emily-
i keep checking the blog for monday's update. praying for alivia and you!
jamie
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