Maggie is a candidate for the alternative surgery...ETV/CPC. That's great. It is a rather new procedure for Primary Childrens. The one doc who does it is out of town until tomorrow (Monday). His schedule is full until Thursday but there is a chance a spot will open up tomorrow. So Maggie will start fasting tonight and get prepped for surgery in the hopes it will happen. The docs give it a 50/50 chance. Please, please please let it happen.
Matt, Maggie, and I attended sacrament meeting at the hospital today. It is a humbling experience to be surrounded by families who are filled with such faith. We look around and see children suffering from so many afflictions and parents with heavy hearts. But we are all united by the power of the atonement and the knowledge that families are forever. There is a feeling in that room of "come as you are". It doesn't matter what you wear, Sunday clothes or hospital robes...it is all Sunday best. The music is often Primary songs and the one talk is always simple and full of pure doctrine. The partaking of the sacrament pierces my heart, and I yearn to recommit. I'm sure not having the other kids to wrestle with contributes to my reverence :) It was also a rare treat to sit next to Matt and watch him hold Maggie.
Tomorrow will be a full blown spina bifida day for us. In the morning, Davey gets casts on his feet/legs at Shriners Hospital. It's been almost a year since his last set. Every Halloween he's had casts to help correct his club feet or realign his hips. It makes for a fun costume. Plus, we were supposed to have our first big appointment with Kids On The Move. I need to remember to cancel that. Sometimes I think, "Is this really all happening?" In a good way, of course.
Now I've got to shower and return to the hospital. I know I could stay home and sleep in my own bed, but it's too hard to leave the Mags. She has a "Mag"netic force on me. My poor roommate has to listen to Maggie grunt, push and snort all night. Oh well, I have to listen to her snore.
Matt, Maggie, and I attended sacrament meeting at the hospital today. It is a humbling experience to be surrounded by families who are filled with such faith. We look around and see children suffering from so many afflictions and parents with heavy hearts. But we are all united by the power of the atonement and the knowledge that families are forever. There is a feeling in that room of "come as you are". It doesn't matter what you wear, Sunday clothes or hospital robes...it is all Sunday best. The music is often Primary songs and the one talk is always simple and full of pure doctrine. The partaking of the sacrament pierces my heart, and I yearn to recommit. I'm sure not having the other kids to wrestle with contributes to my reverence :) It was also a rare treat to sit next to Matt and watch him hold Maggie.
Tomorrow will be a full blown spina bifida day for us. In the morning, Davey gets casts on his feet/legs at Shriners Hospital. It's been almost a year since his last set. Every Halloween he's had casts to help correct his club feet or realign his hips. It makes for a fun costume. Plus, we were supposed to have our first big appointment with Kids On The Move. I need to remember to cancel that. Sometimes I think, "Is this really all happening?" In a good way, of course.
Now I've got to shower and return to the hospital. I know I could stay home and sleep in my own bed, but it's too hard to leave the Mags. She has a "Mag"netic force on me. My poor roommate has to listen to Maggie grunt, push and snort all night. Oh well, I have to listen to her snore.
MRI
Cool headband to cover her IV. I want one of those next time I get an IV.
Aunt Lesa and Maggie.
Praying for y'all Millie! And I am SO glad I got to see you and hold that sweet girl last week!
ReplyDeleteWow. What a week. Good luck with the casting (ugh, no fun!) and the (hopeful!) surgery for Maggie.
ReplyDeleteMy girl, also a sb/fetal surgery baby, had the ETV surgery at 10 months old, and she is currently 25 months and has never needed another surgery. <3
ReplyDeleteAnd I thought I had a hectic Monday.....
ReplyDeleteOh I hope I hope I hope she gets what she needs.
You guys are Rock Stars! We so missed you the other night. Praying all will go well today for you.
ReplyDeleteThinking of you, as always! Good luck with it all- you are Super Woman!
ReplyDelete