March 13, 2014: A great day!
Edward slept and nursed well last night, and continued to improve all day today in the PICU. By afternoon, an x-ray showed he had improved so much that Dr. Robertson took out his chest tube. A while later Dr. Theleen came by and took out the epidural. By late afternoon we were taking the short trip out of the PICU and back to Edward's room on the hematology/oncology floor. It felt like coming home!
Tonight, Edward is receiving his first round of we don't know how many intravenous immunoglobulin (IVIg) infusions to treat the opsoclonus myoclonus syndrome (OMS). The neurology team explained that everyone with OMS reacts differently to different treatments, so we will just have to see how well this works on Edward and how frequently he'll need treatments. The doctors were impressed that Edward's symptoms had already improved on steroids alone, and we were encouraged when they told us that kids who respond well to steroid treatment are usually the ones who recover faster from OMS.
Henry and Grammie came for a visit while Edward was still in the PICU. Henry was very sweet, and gently hugged and patted Edward. He's going to be thrilled when our family is all back under one roof. He's really handling all this very well.
We're trying not get get our hopes up about a possible Friday discharge, but I'll admit we've packed quite a few things just in case!
Comments (44)
Yay! Good news! God is amazing! :)
Amen Lord Jesus, thank You for answering prayers, and answering the prayers we are about to utter! Remember to get rest for yourselves Pastor Kameron and Emillie, and you to Mr. Henry! Prayer will of course continue, love Jer & Deb
Praise the Lord!!! We are so happy to hear this good news! Our prayer is that Edward will continue to improve and that you will soon be able to go home. God bless you all!
Praising and hoping with you! Zach asks every day how Edward is doing... So your joy will be shared and prayers will continue. God is good.
Praise the Lord! Praying for a Friday discharge if Edward is able and God is willing. It would be an awesome way to begin the Sabbath.
Hallelujah! Praying you get to go home tomorrow.
When I saw your subject heading of THIS POST in my e-mail inbox feed, before I even read it, my heart literally jumped….I was praising the Lord!! This has been a tough week for you, but praise God things seem to be looking up. Will be praying if it could be God's will that you could go home for Sabbath! You all have been such a witness of faith and courage even through these last few difficult days - no matter what tomorrow brings, keep your eyes on HIM. "But He knoweth the way that I take, when He hath tried me, I shall come forth as gold." Job 23:10 Love and prayers!
Wonderful news!!! Praying that you'll be home for Sabbath.
Like all the above have stated!! :-)
Our God is an awesome God. We continue to pray for Edward' s Fast recovery and for a soon trip home to a normal life and family. Ben and Sandy
Praise The Lord! Continuing to pray. 🙏
We are rejoicing with you and praising God! Our prayers continue for Edward's recovery and we hope you go home soon too!
Sometimes the rain, the hardest night's are our blessings in disguise. God is good, all the time... we're so happy for the improvement and the healing from our Great Physician... we love you all.
So glad for all of you. God is so good. What a Great Physician we are privilege to call our own.
Praise the Lord for Edward's progress. Knowing that Edward is recovering nicely makes it less stressful for you and Kameron. Continue to keep you all uplifted in prayer and Edward's healing process to continue so you can go home soon. Praying you will have a quiet night and be able to get some much needed rest.
Precious Emily, just wanted you to know how happy I am with this good news. God knows just how much we can take and He never tries us beyond that point. He had not left little Edwards side for one moment and will continue to heal him. One day you all will look back and realize just why all this happened and also realize that God never makes mistakes. He works in wonderous ways His marvels to perform. I love you all because you belong to Jesus and also to Ikey, my precious, precious friend. All my love to Edward and Henry as well as you and Kameron. Auntie Penny
Praise God from whom all blessings flow. We pray for continued recovery for Edward and much needed rest for Emilie and Kameron. Lots of Love, Uncle Dick and Aunt Marcia
Yeah! Great news!!
Hurray for good news! I'm so glad for you. And still praying.
Thanking God for the miracle of life and His healing. Praying that this Sabbath will be filled with rest and surrounded by God's love.
"It felt like coming home!" Indeed, angels have dwelt there and comforted you in some of your darkest moments! Surely that room is hallowed ground. And, how comforting to realize that God will send His angels to go with you throughout any and all difficulties! I am praying for you, and for our world church too, Emilie. PTL.
Praise the Lord! God is with you. Blessings
We are rejoicing with you and praising the Lord for His healing touch. Give Edward AND Henry hugs from Nani and Popi!
Prayers have been answered! Blessings for the Sabbath.
What great news ! God is good! How thankful we are for you! Continuing in prayer for your precious family!
Praise God! We are so happy that many prayers have been answered.
Terrific news! God is so good and attentive to our needs. It looks like sunshine is coming back to the DeVasher household. Perfect timing for the Sabbath hours to come in as Edward comes home. Blessings.
Thank you Jesus for a great progress report!! I have been praying lots and hoping things were improving. Hoping you get to go home ASAP!
Thank you Jesus indeed!!! We will all keep praying!! Little Bud is going to grow up big and strong for the Lord!! Hopefully he'll do most of that on the golden streets of the City of God!!
Praise 'God for healing for Edward and for courage to the family. May this be a wonderful Sabbath!
Yay God!! Such great news after this long trial. Continue in prayer... April and Fred Hardinge
We are delighted. We are praying both for Edward and Henry--in these times of family crisis the one child not sick is often as much affected by the trauma and loss of "normality"; so it is wonderful to hear that both grandmothers could be around and that Henry is doing well. Strength to you, Emilie and Kameron. Gerald & Chantal Klingbeil
I was filled with joy when I read your report and immediately I knelt down and thanked our Heavenly Father, with tears of joy in my eyes. Just yesterday I wrote a note to Marilyn Parez, stating that it is my prayer that by the time his grandparents return from their mission trip, they would get the news of Edward coming home. Now it looks like he will home to welcome them. It is going to be the best Sabbath for all of you to be home and praising God. Probably you can even take him to church next Sabbath (March 22nd) if doctors feel it is all right for him to mingle with people; other than family members. Praise be to God for bringing fast recovery to Edward. Henry will be thrilled to have all of you home.
So happy for you! We are praying for you to go home today!
Praise God he is doing well :) I really hope he does get to go home soon and that God will keep you and him in His safe strong arms.
Praise God from whom all blessings flow. Amen.
Wow, what a wonderful God we serve! Baby Edward is getting better. It is highly pleasing to be a witness that God still heals. Let us thank Him, glorify Him and honor Him today and always. Keeping Baby Edward and family in our prayers. Blessings, J Arthur and Velma
Wonderful News. All these positive thoughts and prayers surround you! Hugs to all. Aunt Connie
So glad to hear this good news. God is SO good and we know that He has been listening to all of our prayers. Will continue to pray and watch God continue to work.
and the Praises just keep a-coming!
Awesome! Hope you can go home soon!
So happy for the possibility you might be home again! We send bunches of love for all of you, and just give a big hug to Edward. He certainly has been through alot for such a little guy.
So, so thankful for the great news! We're hoping that you get to enjoy this Sabbath weekend all together at your own home....at least it seems like a very good possibility. Know that you are loved and prayed for:)
So thankful. Our prayers continue with your family.