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 +90
Today is 100 days in the hospital. Never expected to be here this long. The last few days have been uneventful. Just waiting for Livi to heal. They tapered the steriods again and now she gets them only twice a day. She is getting another dose of Rixutamab for her PTLD. Last night was a rough night and I"m not sure why. She was up from 12-2:45 crying. She finally fell asleep and slept till 7:15.
We have been practicing standing. She hates it but it getting stronger by the day. The goal is to get her to stand on her own (currently I sit right by here and she sits back on my legs frequently. Her legs buckle frequently so she is scared) by the middle of next week and then start working on taking steps again.
We got great news today. The tests came back from Seattle....completely negative!! Woo hoo. Alivia's GVHD is healed. What a blessing.
Thanks for cards from
Sue Forrey (all 3 of them)
Uncle Aaron
Great Granddad and Grandmom McClements
Maryann Kisic
Deb and Rick Gilgore
And the Sheffer's for the CD.
Thanks to Sonya, Erin, Beth and Mark for spending some QT with us. We love you dear friends. (and Kristi we missed you like crazy. Mark did a great job pretending to be you.)
posted by Alivia's Momma @ 11:45 AM
46 Comments:
"We got great news today. The tests came back from Seattle....completely negative!! Woo hoo. Alivia's GVHD is healed. What a blessing."
Wow-we-wow!
Praise God!!!
Great news!
Go, Livi!
Go, Livi!
Go, Livi!
:-)
That's the same cheer I gave Ian in his blog as he practices sitting.
Yes, dear, it is hard to believe that it is 100 days...but in another 100 days you should be enjoying a cool, autumn day AT HOME!
Stickers mailed this morning.
God bless you with a good weekend.
Still Praying!
Mary Ann K.
Wonderful news! Thank you, Lord! We're going to keep on bringing our requests for Livi to the gracious God who hears and knows and answers prayer.
The Sweigarts
AMEN! So happy to hear great news!
We'll keep the prayers coming - there's no stopping! This just makes the power of prayer even more real!
:) Jessica
Yyyyyyyyyessssssss.
Now we are praying with renewed vigor that Alivia will stay on the right path of recovery by the grace of God.
Praise GOD
I am so happy for you..
I pray that each new day is brighter with healing ..
We are praying
We now have LIVI BRACELETS... THEY ARE THE NEWEST FASHION STATEMENT
GOD'S BLESSINGS TO ALL
Phyllis
Thank you Lord. For this answered prayer. Please Lord, let Livi walk home soon.
For your glory.
Emily- have been waiting to hear the results of the test and what great news of them being completely negative and that there is none and that she is healed. thank you Lord for allowing the medicine to work. still praying for you all to return home. love you-jamie
so stoked to hear the good news! yay! xoxo
I have SUCH a lump in my throat, you can't imagine!! What FANTASTIC, WONDERFUL, JOYOUS news!!! So long GVHD - you will NOT be missed!!!!!! Praise God and His healing hands. He may not bring it about as fast as we like, but I trust in Him and He will heal this precious child!!!
I couldn't be HAPPIER for that news!! You made my day!!!!!!!
:) :) :)
Hugs, Vicki Moore
SO GREAT TO HEAR THE GVHD IS GONE!!! Thank you, Jesus! This is truly fantastic.
Looking forward to seeing you again in a few days. I day dream about Alivia playing with her kitchen set. That day will come.
Nan
So thankful for the great news!
Will continue to pray for a complete healing.
Hope you have a very good weekend!
Maryann Plesnicher
Wow, that is awesome!
Always praying for the three of you.
Love,
Neysa
Tears of joy -- oh how I welcome you at this thankful time.
Livi, our family continues to pray for you -- now and always. May God continue to hold you in the palm of his healing hands.
Yeah! So great to here some good news! We will pray for Livi to have strong legs so she can walk again without being afraid! Praying that you can all come home soon!
Brandi & Family
Awesome news! I know you probably feel like you have a ways to go but man...so glad to here there is no GVHD! Crying tears of joy for you knowing how scarry that stuff is. Thanks for sharing the news...we have been praying constantly! Even Nyah has been praying for livi before bed.
I feel humbled that God answered this prayer so well! (I don't know how I would feel if he had not). But he did. It encourages me to persevere in prayer for Livi and others. Rejoicing in his goodness. Mom
Praise the Lord!
Dear Alivia, Emily, James, and Family,
How wonderful to get good news again! Thank You, Lord!
I pray that you have many, many more "uneventful" days, and that you're able to go to your own home soon.
We love you.
J&J
Praise God, Praise God, PRAISE GOD, Praise God, PRAISE GOD!!! THANK YOU LORD no GVHD!!!!
How can I go to work now? I have to stay here and worship the Lord! Praise the Lord. Thank you for hearing our prayers. Oh how good and kind and merciful You are Lord. Let us shout from the rooftops for all to hear:
Sing to the Lord; bless His name. Tell everyone about the amazing things He does. Great is the Lord! He is most worthy of praise! Psalm 96:2a,3b
I know this is just one step in the right direction and there are still many more steps to take. But I will praise Him for every step. Praying with you every step of the way until she is home in your arms healed.
Vicki G.
Yes! Thank you Lord for answering prayers for the GVHD is healed!
Thank you Lord for hearing our prayers and granting the desires of our hearts!
praying...
Great news!!!! See you tonite...we can celebrate this news.
Yoders
Thank you, Lord! What good news!!! We continue to pray at every meal as a family for Livi and I pray by myself for her throughout my day as I mop my floors, do my laundry, cook our dinner knowing you'd love to be doing that stuff right about now.
Love you much, friend. Praying for your perseverance.
I'M SO HAPPY I'M YELLING, CHAT STYLE!!! I know that's bad internet manners, but I can't help it. No GVHD! Praise God! I'm jumping up and down inside. If I was there, I'd be hanging all over you and probably slobbering. I guess it's best that I'm here.
I'm so sorry that you're not sleeping!! I would be such a mess, if I were you. I'll be praying that she sleeps and that whatever is troubling her little self would go to sleep and go away.
You guys are amazing. I don't know how you're doing except I know that God is strong and gives strength to the weak. You might not feel it, but it is evident to all who read this blog. God is here.
I love you,
Miss Kiki
p.s. if anybody else calls me that, I'm prepared for some fisticuffs.
wow praise God soo excited to hear that Livi is healed of GVHD!!!! we will continue to pray for your darling
Yipeee!! Praise God from whom ALL blessing flow :)
* Your Canadian Friend *
AWESOME NEWS!
Now just get walking, Little Girl! We need you to come home soon and be stronger than ever! :) You can do it, Livi!
Hugs,
Julie
I'm so happy...have been checking the past couple of days to see what happened! Wooo Hooo (thats me cheering!!!)
Love Shannon
Well, that's just about the best news I've had ALL MONTH, maybe all YEAR! Wow! No GVHD! and Standing! And the meds are being decreased! I am crying! God is so good, and kind, and WOW! Is He FAITHFUL! I will be praying for her to walk and to ENJOY walking again. I will really pray for her sleep tonight. You know, when God answers like this, my heart just leaps to rejoice in Him, and worship! Oh, thank you, Lord!!! You are so good to us! You know, Emily and James, I don't know you, but I am so proud of you. You are fighting the good fight of faith. with love, Janet S.
Oh, dear Lord, thank you. This is my blog message. See your Email !Love, Marmie
Praising God with you for the great news! Hang in there!
Love,
Amy
Yeah!! So excited to hear the good news. Praying that the walking will just take off. God is so faithful. Continue to watch God work!!! Sue F.
So thankful! Prayers continue! Thanks for the update!
Yaaaay! We are so grateful for negative GVHD results!!! Big smiles are on our faces =)
Great news!!! I'm so glad to hear that things are looking up again!
Natalie M
Praise the Lord for the GVHD healing. We will keep praying!!!!
Hooray!!!!!!!
Thank you Lord for moving on Livi's behalf... thank you for answering the prayers that we have been pleading.
We will keep praying that you all can go home soon!
Calvettis
The first verse of a favorite hymn that came immediately to mind when I saw the good news of healing- I like the version we sing at Lord of Life best, though:
Praise Him! Praise Him! Jesus, our blessed Redeemer! Sing, O Earth, His wonderful love proclaim! Hail Him! Hail Him! Highest archangels in glory; Strength and honor give to His holy Name!
Like a shepherd, Jesus will guard His children; In His arms He carries them all day long.
Praise Him! Tell of His excellent greatness; Praise Him! In joyful song!
We'll continue to pray!
Praise the Lord! Who knows what battles raged over this GVHDin the spiritual realm? We do not dare stop praying.
Aunt Marcy
Yay!!!!!!!!!!Thank you Lord for healing livi's GVHD!!!! I pray that you keep getting news like this! I also pray that she will be able to start walking soon! I hope and pray you will be able to go home soon. Keep trusting God!
love ya all,
moriah
PRAISE GOD about the GVHD!! Wonderful news. Keep on getting better, Livi - we're all praying for oyu!
I am so happy for Livi!! I will keep praying for her!
Pamela Bueche
We are so happy at the good news that the GVHD is gone and Livi is getting ready to walk again- we will be praying for strength and healing in every part of that beautiful little body. Praise The Lord!! May the blessings continue each day and you all be home very soon. You are in our thoughts and prayers, Love, the Vandernecks and very extended family
Praise the Lord for the good report! Shedding tears of joy with you - God is faithful!
I will continue to pray for her complete healing, and strength for you all. God never leaves us. He will be with us where ever we are.
Can you please post your mailing address again, and is there anything you could use? or special items to bless your precious child? or to bless her mama? or alre there things Livi cannot have?
thanks! Blessings!
Holly W
Yahoo! We were waiting to hear something,Livi kicked it's butt. Did DR.Doom & Gloom give you the great news, or is he out of town. We are so excited for you guys, seriously!!
Love you guys
Trish
Great News! So long GVHD. I am so glad for the great news! Go Livi! Go Livi! Betsie
Dear emily and James,
I have been reading and praying for Alivia since you entered the hospital. many times i have wanted to post a comment, but i figured that was dopey...we have only met a few times. you don't know me, and i figured, how can my words be any more help then you have already received from your loving family and friends. however, today i realized that not posting a comment was sort of like not thanking God for the miracle that we are trusting him for, and all that he has done. so even tho you don't know me, and my words simply echo the words of others more eloquent than me, i wanted to say thank you. Thanks to God, for his gifts large and small in your situation, and for the ultimate gift of healing we pray for. thanks to you, as well, for your example and your courage. you inspire me to greater faith.
k.
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