Just look at who is sitting up tonight…Miss Lucy! She sat for a few seconds tonight, just long enough to have her picture taken.
Things are s-l-o-w-l-y starting to improve. Lucy’s labs are all trending in the right direction and her blood counts are holding steady. We are being more aggressive with the Lasix which seems to be working to pull off A LOT of extra fluid. Her feet and hands are dry and scaly from all of the swelling they have endured these last few weeks. We are noticing a decreasing trend in Lucy’s blood pressures with each dose of Lasix. Her heart rates are creeping back up to their normal 150’s. We have noticed big changes in her heart rates and blood pressures when we try to move Lucy from a laying to sitting position, this is due to the fact that Lucy has postural orthostatic tachycardia syndrome (POTS).
Lucy officially began the weaning process off of the Dilaudid this afternoon, we turned down her drip by twenty percent. She is doing well, the only thing that I have noticed is that her face is more flush. The hope is by the end of the week to have Lucy off of the Dilaudid drip and only needing PRN doses of medication if necessary. We are taking things one day at a time…
I had a great day with our other three children! I surprised them by picking them up after church today…I just love a good surprise! Drew joked with me when I left asking me if I remembered how to drive. He stayed with Lucy for part of the morning and afternoon so that the kids and I could go out for lunch and do a little shopping for our up coming trip. The kids and I talked about some of the things Lucy needs to to before we can come home and get on an airplane destined for Disney. They seemed ok with knowing that we may have to wait until Lucy feels better to go on our trip, but the moment she does we are going. Everyone here has their heart set on us leaving for Disney on Sunday, as do we.
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it was SO good to see you sunday!! and it's even better to see that lucy is making progress! we are praying for you and your family that you will make it to disney on sunday and have a great family vacation...you definitely deserve it.
Hooray, Hooray! Lucy I love seeing you sitting up. You're getting closer to making me chase you. I can't wait till you get home and are hiding from me. I am on the search for your new lawn mower, so we can get back to cutting that grass with bubbles.
Keep moving forward the princesses are waiting to meet Princess Lucy!
Love
Helen
Hang in there! We missed Eithene's first attempt at her MAW trip because she decided she'd rather spend that month in the hospital, but it was worth the wait to *really* have her feeling better and able to enjoy her special trip. I hope she keeps improving and you can make it this weekend, but regardless of when you go, you will have an incredible time! It truly is the trip of a lifetime! :)
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