Hi everyone. Sorry we have been so sporadic in our postings. I assure you that no news is good news. Gracie is doing extremely well. She's doing a great job choking down all the meds. She vomits and gags some, but all in all she's a trooper. It's tough on mommy too since she her life has been transformed into a human medication vending machine. All she has time to do is administer medications.... But mommy is a trooper too and is developing a routine and hanging in there...
Her docs are all very happy with her progress. Her numbers all all still very good, and as you know - she is actually making enzyme on her own. So long as we can keep her healthy, the transplant will be a total success! Yay!
Gracie has been getting out quite a bit, trying to enjoy the fantastic summer weather in Minneapolis.. She goes for walks, has gone out to dinner a few times... She loves it. She just wears her little mask and plays and seems to have fun. Such a great kid!
Great news is that Gracie is starting to show signs that she wants to eat regular foods. Apparently, the transplant messes with their taste buds, so the docs recommended we try to give her adult food with stronger flavors (baby food is too bland). She sucked on a piece of pasta, ate part of a cheeto, and ate a french fry... I suppose we'll have to work on her healthy diet later. For now we just want her to start eating. The sooner she starts eating food, the sooner she can go home.
Gracie is also talking a lot more, and starting to make progress toward getting around independently... her speech and physical therapists are very pleased. :)
Anyway, just a quick update to keep you in the loop. So sorry for our delinquency.
Uncle Mack
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5 comments:
oh that's awesome! I can't imagine having to constantly administer meds. Does Gracie have any association with it?
Im glad she has been able to get out and about. Staying inside even gives an infant cabin fever!! Give her many mask smoochies from me!!
So happy to get an update. Thanks Uncle Mack!
Kiss the little cheeto eater for us.
I'm just happy to hear that she is still doing well! I'm glad she's been getting out some and yay for eating!!! Many kisses from me, Gale, and Madison!
yay for an appetite! what a great sign that life is moving back towards normal
I'd be THRILLED if Rylie would eat a french fry. Never thought I'd say that. :) Keep up the eating, Gracie. Really, it's fun. You just forgot.
We always call Gracie the numbers queen. She knows how to grow stuff; that's for sure. Keep it up! And tell your secret to Rylie. :)
Love,
The Hays Fam
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