May 19, 2014: Best infusion day, ever!
[Mon, May 19: Edward sleeps in the Pack 'n Play while the IVIg is infusing.]
*This post was written earlier today--he's not getting a late-night IVIg infusion!*
Edward is nearly finished with today's IVIg infusion. He's been asleep for about two and a half hours--a miracle for a clinic day! His nurse three weeks ago suggested I bring a pack-n-play and see if that would help him sleep, and it has turned out to be a brilliant idea. I put him down after he ate lunch, and quickly stepped out, which is what I do at home. He cried for about a minute (which he doesn't do at home), but then quieted down and fell asleep quickly. I can't tell you what a massive change this is from some of the terrible times we've had here in the past. Of course, he missed his morning nap in the bustle of seeing the doctors and getting ready for his infusion--taking his pre-meds, etc--, so this afternoon nap is even more important than normal, especially considering that he will miss naps on Wednesday and Thursday for his prep appointment and scans. Praise the Lord for this wonderful nap!
The doctors were very happy to see Edward's improvements. He's holding steady, but hasn't made any more major improvements since our last update, except that he seems to be eating even better. They are going to start him on a very low dose of antibiotic (bactrim) only three days a week for as long as the rituximab and decadron are suppressing his immune system. I'm not crazy about him being on more medication, but this seems like a reasonable move, as the rituximab is destroying his B cells, the decadron messes with his T cells, and these things put him at very high risk for a particularly dangerous form of pneumonia.
Our next IVIg appointment will be in two weeks, instead of three, as we leave for camp pitch for Michigan Conference's camp meeting three weeks from yesterday. I'm very much looking forward to camp meeting this year. Everything should be easier, now that we'll have a climate controlled, quiet, dark place for the boys to sleep. (Try putting babies and toddlers to bed in a hot, thin-walled tent in a noisy campground at 6 or 7PM when the sun doesn't go down until 9:30 and you'll know what I mean!)
We should have the results of the fused MIBG/CT either Thursday afternoon or Friday.
As always, thank you all so much for your prayers and encouragement. Here are a few more pictures.
[Mon, May 19: Eating lunch and grinning during his IVIg infusion]
[Wed, May 14: I made shopping cart bumpers out of pool noodles, so Edward won't hurt himself when he flops forward in a shopping cart.]
[Thurs, May 15: The only chair we've found that helps Edward sit up for very long and that he enjoys sitting in is this vintage Cosco bouncy chair that belongs to one of our churches and was only at our house while I was sewing a new seat for it. If you're local and you see this type of chair at a thrift store or yard sale, please get it and we'll buy it from you.]
Comments (22)
Thankful for the good update, and for God's grace one day at a time. Continuing to pray for you all!
What darling little men you have! I just want to kiss their little cheeks! Praising the Lord that today went so well and upholding you all in prayer. Enjoy camp - I'll be in San Diego in three weeks for meetings - but I don't suppose that's anywhere near where you'll be?! :)
I so love his smile, Emilie! What a delight it was to see him Sabbath. Sorry we haven't been able to do more than pray for you guys. We know what a great God we serve,. So thankful for His tender care of Edward, and continue to pray He will hold all of you close.
I just love that cute little Bud!! I'm sure God has a very special plan for him! May his restoration go forward to fullness!!
Thanks for the update.. You guys are in our prayers, we thank God for Edward's improvements!!
Edward looks so much better. Praise The Lord. God bless and keep you all.
We do appreciate the update and pictures! We continue prayers for Edward and you!
We are looking forward to seeing you all at camp meeting...can't wait! :-) You are always in our hearts and prayers. So thankful see the boys smiling faces, and to receive the updates. Thank you. :-)
Wonderful! I am so happy for you all. 😊
So great to see his smile, You are such an inventive mom with all of your little creations to help keep him safe and comfortable. Great job. We pray for all of you daily. Big hugs and prayers. Jim and Janene Ayer
That smile is catchy, and brings joy to my soul! I sure missed you guys last Sabbath! Wish I could have been there. Prayers will continue to be sent to the Father in all your behalves!
Thank you for showing and practicing the faith God has given you. Your reports are such a blessing as you rejoice in every milestone. We praise God for His work in Edward's life, and we continue to pray that full healing will result giving glory to Him. Love and Hugs, Fred and April Hardinge
Will keep my eyes open, I haven't seen one in awhile but you just never know what will pop up at a sale, I will make it a matter prayer. Camp Meeting will be here before we know it...use that time to connect with friends and build your support system. I am looking forward to seeing all of you. Have a blessed day and know prayers are continuing..
Thank you Emile for your regular updates. Especially those of us who are praying for him constantly, your reports mean a lot. Yesterday's report is a boost to our Faith in God. I feel that through Edward, God's name will be glorified throughout our Adventist churches. What a charming boys you have. It is nothing but God's love and care that keeps Edward smiling. We will continue to keep him in our prayers until he is completely healed. Enjoy your camp and come back to give us more reports on his progress. Love and Hugs. Jaya
I am so thankful for answered prayers for Edward and your whole family. I love your expectant attitude toward Michigan campmeeting and pray that it will be a refreshing time for you. May God's love surround you.
What a wonderful update! So good to see Edward laughing and sleeping so peacefully. The Great Physician is constantly with him...what comfort that brings to each of you. You all remain so much in our thoughts and prayers.
Thank you for the wonderful update! He looks great. Praise the Lord; He is answering prayers. Have fun at campmeeting! We will continue the prayers!
Linda and I continue praying not only for Edward; we pray that God will give you the strength through this!!!
Thankful for the encouraging update! "O give thank unto the LORD; for He is good: for His mercy endureth forever." Psalms 118:29 Edward and all of you are daily in my thoughts and prayers.
So proud of you for your clever ideas and resilience, Emilie! So thankful for how He is caring for your family! Lots of love from us!
Praise the Lord for a good report. It is so good to see Edward's smiles on the photos. He looks very happy and content. Praying for continued progress for Edward and continued strength for you all as you continue this journey.
May God continue to bless you and may Edward's progress continue to improve with each passing day. Loved seeing the pictures, so precious, and I dearly hope I shall get to see the whole family one day. Love to all.