Hope you're having a GREAT Friday Macie. I haven't posted because I was in Guatemala on a mission trip. There were lots of fine people down there. A lot of little ones, I'm sure you would have liked to play with.
Been praying for you while we were gone and glad to hear you like your new nurse.
Brian thanks for the updates and there are continued prayers for all of you.
Saw the Nero Dr today. He took Macie off of one med that may be triggering some of the seizures and put her on another. Of course its a slow process. He is worried about them, but did say that it is something that people in Macie's condition have to deal with them. So while he wasn't able to wave a magic wand and make them stop. He did put Keili's mind at ease a little.
So after the Dr. appointment, Keili, Harley and Macie went on a mission. Harley is going to enter the Fair Queen contest, so they went dress shopping. Macie was a supper trooper. Keili said she only whined a few times and she wore her TLSO and leg supports for 7 1/2 hours! Took them off once to change diaper and rub her back, but other than that she had them on. That's a pretty good accomplishment. She is out like a light on the bean bag now.
WOW great news above ^^. Glad y'all had some time off to yourselves. Macie, sorry for not posting recently but I was on a mission trip to Guatemala, got to meet lots of nice people and made some new friends. Got to see some really neat things.
Prayed for you while I was there and thought of you quite often.
Harley, good luck in the contest and y'all need to post pics when you get them.
Comment