The surgeon had to shave Elle's head - a lot - in order to have a clean surgical field where he took the old port out and also on the other side of her head where he put the new port in. After much brainstorming on how to fix her hair, I trimmed about 6+ inches from her super long hair and we are doing a lot of 'Milla buns' and headbands to cover up the incisions/scars/shaved head.
(For those of you who may not understand what 'Milla buns' are :) it's what we call pig-tail buns on the top of the head because I put Milla's hair in those buns much of her last 3 years as her hair was so curly and wild and that kept it out of her face.)
We are so thankful we went ahead and changed the port out with a new one...the old one had a sizable hole in it. It definitely would not have been good to have another infusion with the old one.
We are still on schedule to have Elle's 45th infusion tomorrow morning. We don't know if we will see a difference in Elle' condition with the new port but anything is possible.
Also, we have a new night nurse starting this week!! For now, we will still have no help on Saturday nights but 6 days a week is sooo much better than 3 days a week!
One more big reminder! Miles 4 Milla's House is THIS SATURDAY, the 19th at Wiseacre!! Feel free to ride bikes, walk, run or just come for the party! The family ride (I'll be walking) starts at 10:15 and the party starts at 11. Rain or shine, it will be a blast with good people, good music, good beer and good food. Please help us support the Memphis community by supporting Milla's House Center for Good Grief!!
Go here to sign up or donate:
Much love and THANKFULNESS for all your prayers and encouragements!
Dana
Dear Dana,
ReplyDeleteMy name is Kathryn. I am Lulie Callaway's oldest sister. I don't want to go into the details of my grief, but it involves a child and I wanted you to know that reading your family story (as well as Voyage to the Star King) is helping me quite a bit. And in unexpected ways. Lulie gifted me with a fundraiser bracelet a while back, and it was special then but now has meaning beyond my ability to express. It's a black & gold one, and the tag says "held". Even at nearly 50 years old, when bad things happen, I tend to feel cursed. Thank you for reminding me through your life and your writings of what Jesus tells us: We are, in a mysterious way that we'll probably never understand, somehow BLESSED when we mourn, are meek, poor in spirit or persecuted by life events. Maybe it has to do with being vulnerable. Perhaps there's something about vulnerability that God honors and cherishes. My prayers are with you. Kathryn
Much love Kathryn! Thank you for writing and for your prayers!
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