Ellie's new blanket. Thanks Brenna and Braelynn!
We continue to be amazed at the works of God. We had our "care conference" at the hospital today. Things are really moving forward with Ellie.
Breathing: The doctors are quite impressed with Ellie's ability to breathe without any support. It will help her remain strong if she ends up getting sick. She breathes through the "artificial nose" during the day, and uses the humidification collar at night.
Feeding: Ellie is now being fed by gavauge every three hours. She is at full feeds of about 2.5 ounces. This is what her feedings look like now:
Diagnosis: We received the test results for myotonic dystrophy today: they are negative! This is especially significant because it rules out the main diseases that are degenerative, where she would get worse. Now we can have hope that Ellie will remain in the state she is in, or even get better.
The skin biopsy and muscle biopsy were sent to Mayo for testing. It will probably take a while before they are able to tell us anything.
Home: The have a target date for Ellie's discharge of Nov 7 or 8. That's the end of next week! We can't wait. The next week will be quite busy as we get the house ready, get trained on our home equipment, and various other things that need to happen before she is home.
Prayers:
That Ellie continues to improve in her muscle strength.
That things would go smoothly in preparation for Ellie's homecoming.
That we would all be able to settle into home life without too much trouble.
Thank you all for your prayers. Please join us in praising God for all of his care and blessings.
Praise God for all that Good news! He is so faithful!
ReplyDeleteLove you all!
Congratulations! Ellie is an amazing child. I will continue to pray for her recovery.
ReplyDeleteI stand in awe of the Lord's healing power and celebrate the thought of hanging out with Ellie at home. Once again, how great is our God!
ReplyDeleteLove you guys.
Wonderful news! It will be a great Thanksgiving this year. She is such a tough little trooper. We continue to pray for all of you. Still waiting to help you out whenever you ask.
ReplyDeleteOur God is an Awesome God!
ReplyDeleteIt is a miracle. Thank you God!
I am so happy for you. We will keep praying. My children and I were reviewing your posts today. You have come a long way. Your faith is amazing.
I didn't know if it was a good thing or a bad thing that you were still in your care conference when I was done with rounds.. OBVIOUSLY it was a GREAT thing!!! So happy to hear about the negative test results. :o) Ellie is such a rockstar! Almost home, almost home, almost home. Praise God! yaay!!
ReplyDeleteYay! How wonderful indeed. What a precious little girl. Praying for strength, for Ellie and her loved ones. May the Lord give strength to his people and bless his people with peace (Ps 29:11). Be strong in the Lord and the power of his might (Eph 6:10).
ReplyDeleteGive thanks to the Lord!
This is great news! I am continuing to pray for you and am amazed at what God is doing.
ReplyDeleteGreat news! Love the pictures, she is so beautiful!
ReplyDeleteHow Awesome! Yay! I'm so happy for you.
ReplyDeleteAlleluia!! Praise God!! He is so Faithful--He hears and answers our prayers!! Amen!!
ReplyDeleteLove to you all.
The picture of the crochet blanket brought back memories. My mom crochet blankets like that for all of my kids and grandkids and they are so nice.
ReplyDeleteAgain, more good news for your family. Praise God that the test for MD were negative.........We continue to pray that Ellie gets stronger every day.
Praising God with you for your awesome news! God just continues to provide hope and healing to sweet baby Ellie. I am so excited for you that home is not far off. Then Ellie will have a new bag of trouble: BROTHERS! You are all continuously in my prayers.
ReplyDeletePraise the Lord! I am so happy that Ellie will be coming home soon.
ReplyDeleteGod is so good, and he is showing that through the works of your daughter. Please know that we are rejoicing with you all during this time, and continuing to pray nightly for you all.
ReplyDeleteLove and prayers-
The Krumwiedes
Chad, Kristin, Delainey, Shelby and Avery
Praise God!!
ReplyDeleteEllie Rose is SOOOOOO cute! We are so glad that she is doing good. We can't wait until she can go home with you!
ReplyDeleteLove from Brenna and Braelynn
We are giving thanks to God for the good reports you have been receiving.You will all soon be home together. We will pray for a smooth transition. Love those pictures!
ReplyDeleteWow. The power of prayer shows again. What a great day. I was at our friends yesterday for lunch, and talking about the updates. My friend Ken prayed for you and Ellie, and we all felt something special. Now I know what it was. Praise God.
ReplyDeleteUncle Bob
How encouraging! Praying that all your preparations will go well and so glad your family will be together soon!
ReplyDeleteIt has been so wonderful to be able to look at these updates everyday and see God's goodness and your testemony of peace and trust in him! We are praising God with you for the way he is blessing you and that you will soon be taking Ellie home! Let us know if there is anything we can do to help and encourage you! (I will call you soon again about meals!)We will keep praying!!!
ReplyDeleteWhat great news! I can't wait to see Ellie in her home! Thats where she belongs!!
ReplyDeletePraise God for all His wonderful works!
We are greatly encouraged and excited for your family! We will be praying that the Lord will continue to heal Ellie! Our prayers are with you.
ReplyDeleteLove IN Christ,
Chuck and Laura Wiese
Dear Emily,
ReplyDeleteWe are so happy to hear all the good news! Ellie is a very precious child.
Love and many prayers,
Julie & Philip
I'm so glad to hear good news! I will continue praying for you all and that Ellie continues to improve each day!
ReplyDeleteI continue to pray for Ellie Rose and her amazing family. God bless you all!
ReplyDelete