Who's the cutest girl around?

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.

Tuesday, June 05, 2007

Day +86

Today was a better day. Still nowhere near out of the woods but she seems to be a bit better. She is still not walking at all. In fact she is more and more afraid/unable to stand everyday. Her EBV (epstien bar) is lowering. That is a good sign for her PTLD. Unfortunetly, she is still pooping blood. The doc who did the endoscopy came to see her today and said she wasn't suprised that she was still bleeding internally due to the number of biopsies requested by the doc who ordered it. She said she actually did less than requested because it didnt' seem safe to do as many as he wanted. She is getting daily platelet transfusions and has gotten quite a few packed red cell transfusions. If you match her and have donated in the past and want to donate again now would be the time. Her White cell count is on the rise again. Hopefully it won't go much higher or they will have to start doing blood cutures again to see if she has an infection in her blood. We have still not recieved the results from Seattle about the GVHD. Even though they didn't see anything here that doesn't mean they won't find something in Seattle. They are the ones who found the GVHD last time. There was passing mention of GVHD of the skin again today.

There was some laughter today and a ton of art work. She is still loving stickers and we go through sheet after sheet each day. She gets it in her head who she wants to make a picture for and then we have to write the name of the person who it is for on the paper really big, then she proceeds to cover the name completely with stickers. It's sometimes hard to remember who the card is for but she always reminds me. Its the sweetest, cutest thing. Some people (like her "Da" get lots of cards) Lucky duck.

Jackson...our buddy down the hall got some good news today. He doesn't have fungus or mold in his lungs. Instead he has strep that spilled over into his lungs. He actually smiled when I saw him today. Yea for Jackson!!

Pray Livi's WBC's stop rising, that her internal bleeding stops, less need for transfusion, no GVHD anywhere!! Continued healing of the PTLD, strength to return to her so she could walk again.

Also please pray for the Amish family down the hall. They got terrible news today and are having to make tough decisions. We have grown to love them and are aching for them right now.

Thanks for the cards from...
Julie Garner
Barbara Meyers
Marmie (the best grandma a girl could ask for!!)
Jamie Sentz and the Summit Quest 4th floor
Sue Forrey
Tootie and Dick Yake
Mrs. Kachur (my high school English teacher...my favorite teacher in high school because she pushed me to work harder)
Lynn Bassler (also for the generous gift)
Beth Young (also for the gift certificate)
Maryann Plesnicher (for the generous gift also)

Carol for the purse for Livi and for taking such good care of Livi so I could relax and sleep.

Thanks to Erin, Sonya, Ang and Bri. You know I love you girls and it means so much when we spend time together.

And to my sweet hubby for the great date. Love you tons.

34 Comments:

Blogger momofcolin_chloe said...

So thankful for all of the support you have around you. It is amazing. So glad for the time you and James had together. So glad for laughter from Livi. Thrilled to hear good news for Jackson. Praying still for each request. Thanks, as always, for the diligent updates, Emily!

5:09 AM  
Anonymous Anonymous said...

You're such a great person to always think of updating us about your sweet baby, as well as, telling us about others that need healing. I'm glad you had a better day! Glad Jackson got some good news. As we pray for Livi we'll also pray for Jackson and the other family you've grown to love!
Natalie M

7:15 AM  
Blogger Jude's Mom said...

Thanks for the update, Emily! I love to read about sweet little Livi (especially when it's not sad news). Praise the Lord for all that He has done for her so far! He is so faithful!!!

And I'm so glad to hear about Jackson as well. Praying for you and for the other families you are sharing this time with.

Love ya, Girl!
Julie

7:21 AM  
Anonymous Moriah said...

Praying,Praying,Praying!!!!!!!!

7:58 AM  
Blogger Bueche said...

Thank you, Emily. Thanks also for the update on Jackson.

Prayers continue.

8:08 AM  
Anonymous Anonymous said...

I have you in my thoughts today and prayers will be offered ..
Praying for peace today
Phyllis

8:08 AM  
Blogger All 8 of Us said...

Glad to hear Livi is a bit better but continuing to pray for all the other needs listed.
Praying for His sustaining grace to carry you all!
Blessings,kathi

8:21 AM  
Anonymous Anonymous said...

Ohhh! I haven't sent stickers in a while...I better get with the program!
:-)

Great to hear that Livi feels good enough to be playing!

Thank you for the update.

Still Praying!

Mary Ann K.

8:48 AM  
Anonymous Anonymous said...

Will alert the friends who want to get something for Livi. Sticker shopping first priority after prayer. Hugs and kisses from Marmie

9:50 AM  
Blogger Steph B. said...

Emily,
I think about you and the family often, but last night at Care Group I was really thinking and praying for you. We are going through the study How People Change. And how trials bring out the "fruit" in our heart. Well I thought about you and the trials you are going through. and what and example you are. THANK YOU!!!!! I can see the evidence of God in you even through your blog.

We are still praying.

11:26 AM  
Blogger vandernecks said...

We are so glad Livi is having a better day and praying her health continues to improve and she begins to want to walk around and play and smile her beautiful smile. We are praying for good test results from the doctors, and strenghth and grace for each of you during this extremely hard time. Your love for her and each other and the other patients and families there is so inspiring, you are truly touching us by telling your story with Livi. You are teaching us so many important lessons, Emily. Thank you for sharing with us, even though it must be painful at times- it is such a journey of faith and love you are all traveling with your special little baby girl. We are praying for a healing that will come quickly for her, for each part of her little body that needs God's touch. You are all in our hearts and in our prayers-please give David and Gretchen a special hug from us- Love. The Vandernecks

3:40 PM  
Anonymous Anonymous said...

We are still praying every night, and won't stop until Livi is home. By the way, Kay Lechner pointed your home out to me the other day. The new siding looks great. What a treat it will be when you are home and enjoying your "new" house.

Melissa Stoltzfus

3:59 PM  
Anonymous Anonymous said...

OH! She is back to doing stickers!!! That in itself is great news!!! It makes me cry ... for joy and with thanksgiving! THANK YOU LORD! You and your family must walk in a tremendous amount of grace to not want to choke those doctors sometimes. God bless you all. And may He heal Livi completely! May He move her from stickers to standing to walking ... all the way to her home! Love, Janet S.

4:34 PM  
Anonymous Anonymous said...

Praying for the Amish family and for still for Jackson. Thanking God you had a better day. I am continuing to pray for good tests results and for the bleeding to stop. My family is praying for you as well. You are constantly on my mind and in my prayers.

Gigi - I am hugging you right now and planting a few kisses on your cheeks...

Vicki G.

4:53 PM  
Anonymous Anonymous said...

praying for Alivia to continue to get better very glad to hear the good news about jackson and will be praying for the Amish family thanks for always updating us on your sweet girl
Becca

5:29 PM  
Anonymous Anonymous said...

I agree with Janet that Livi playing with stickers is a gret sign. Thanks for the updates. Great talking "or cell screaming" with Gigi on Sunday. It was great catching up. Continuing prayers in Pittsburgh. Betsie

5:39 PM  
Blogger Zoanna said...

How do people donate platelets or find out if they're a match? I'm on my way overseas, but should the need arise and the thing feasible, I would be willing to give it a try when I get back. I'm a friend of Bri's and go to the same church.

Also, may I give Briana stickers to send to you? I have gobs and would love to contribute to Livi's artistic outlets. Nothing like a handmade card to lift your spirits, huh?

11:36 PM  
Anonymous Viv said...

Glad to hear the good news about Jackson and also that Livi's been laughing and doing some artwork! I'll keep praying that the test results from Seattle come back negative.
love,
Viv

8:22 AM  
Anonymous Lori Randolph said...

Hey Emily, I haven't posted a comment in a long time, but just wanted you & James to know that Lane and I HAVE NOT forgotten about Alivia. We continue to lift her, you and James up to God in prayer.

10:29 AM  
Anonymous Anonymous said...

I love this blog! I love being able to come to this "cyber" prayer meeting every day and gather together to hear news, share thoughts and pray with others - just like my church. And I don't have to drive anywhere and don't have to leave to go home. What a blessing and what a cool way to defeat our Enemy at his own game! He has used this meda for so much evil and we take it and use it to lift up the name of Jesus! Glory and honor to the King who reins! Jesus, Jesus, Jesus! As we pray for Alivia and Jackson and the Amish family, we just speak the name of Jesus and He is present! Jesus, Jesus, Jesus. Take that Satan. We are trusting not in princes or chariots, but in the One who holds all things together.
Livi belongs to Him. It is to Him we ask for blessing, healing and comfort to Livi today. Amen.
Aunt Marcy

11:05 AM  
Anonymous Erin said...

Hoping the day is going well. Love you guys lots.
Erin

2:21 PM  
Anonymous Anonymous said...

Hope I get to meet Aunt Marcy someday! I think we must be related. Just loving her violence in ushering in the Kingdom of God ... Praying for Livi. Hoping her day is blessed. Much Love, Janet S.

2:38 PM  
Blogger beth said...

Does the blood type have to match exactly or can she have O-? We're heading out of town, but will be back next week & can donate in PA so she can get it. _b. chase

2:46 PM  
Anonymous Anonymous said...

Pampers codes-

CD6MKCT3DP3WD7V

CD6MKC4HMVWH66C

Hope things are continuing to get better today.

4:21 PM  
Anonymous Anonymous said...

still praying!!!! Be encouraged (and get ready for stickers!). God is good...all the time.
Sue F.

9:21 PM  
Anonymous Anonymous said...

Glad to hear things are looking up for Jackson. The sticker projects sound like fun, I am sure glad she finds pleasure in those simple things. Thinking of you more than ever and praying for ALL of you.
Diana B.

10:58 PM  
Blogger friends of ian said...

Gretchen-

In response to your latest comment on our blog...40 DAYS IN THE HOLE

11:29 PM  
Blogger Mike Greiner said...

You don't know me, but I read your blog today and have prayed for your lovely girl.

God is glorified in our trials, and your sharing the hurt of those around you is the work of the Holy Spirit. May all you touch be blessed.

May His strong love be the hand beneath your family that holds you up at every moment.

10:56 AM  
Anonymous Anonymous said...

Praying for all of you.

Pauline

3:59 PM  
Anonymous Anonymous said...

I finally figured out how to send comments again. The format I am receiving now is a little different than it was in the past. I have to click on the colored bars below to edit my comments and then send them.

I am thinking of all of you as always and praying for Livi's fast healing.

Lots of Love,

Caroline

8:24 PM  
Blogger Jude's Mom said...

Hoping no news is good news these days!

We love you!

9:17 PM  
Anonymous Jackson's Mom said...

We miss you! Hope everything is still going well. Kisses to Livi, pa & Gigi.
Lotsa Love
Jackson Trish Pete

9:41 PM  
Anonymous Anonymous said...

Praying for good days, peaceful nights and total and complete healing for Livi! Love to you this weekend. Hope it is filled with joy and laughter. Janet S.

10:18 PM  
Anonymous Anonymous said...

I don't know if you'll read this days comments again, Emily, but I just wanted you to know how much I WISH I could have been the one out there with you and Beth and Gigi. I miss you guys so much, and it would have been a little bit of heaven to see you.

I'm praying in ways and quantities that I've never prayed before, for Livi. I don't know her very well, but I love her, because she's your's. I've wanted to come out there so bad for so long, but the Lord hasn't seen fit.

Beth was pretty overwhelmed with how adorable she is, once again. She loves her so much. She was telling me all about her.


We love you and are praying and praying and praying. Please tell Livi that I LOVE my card. I especially love all the stickers.

kristi

12:10 AM  

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