Rylie loved the holidays with family and ate up all the attention. Here she is with cousin Amy. (Amy, hope you don't mind being featured here!)
We have settled back into a routine. Rylie and I play in the morning and try to do an outing in the afternoon. We have music class on Tuesdays with cousin Sofia and Kristen. Rylie loves it. She has also started a weekly play date with Cole, our neighbor. This week she tried to steal a kiss, but Cole didn't notice. She's pretty sly!
On Fridays we go to the Children's Hospital in Aurora for Rylie's enzyme replacement therapy (ERT). Now that she has her central line catheter in her chest, she doesn't need an IV. They just hook up the bag of enzyme solution to her "tubie." The therapy lasts about 5 hours, and we usually get to play, take nap, or watch a video. The brand new hospital is very comfortable, and Rylie doesn't mind being there. I'm thrilled to have Lyle there for company during most of the therapy.
Rylie's catheter has wiggled itself out about a fourth of an inch. We had a surgery consult take a look on Friday, and for now they say it is still in place and will not need to be repaired. We were thankful that they didn't need to redo the catheter.
For the care of the catheter, we have to flush out the lines once a day with a blood thinner to prevent clotting. We've picked it up rather fast, and part of me thinks I would have made an okay nurse. :) Changing the bandage is actually a lot harder than we thought, and it makes me rethink the previous statement. Rylie has been patient with us, and fortunately, the nurses at Children's change the bandage for us now when we go in for ERT.
I hope to have more photos posted soon.
2 comments:
Cute, cute video! Thanks for sharing. Hugs from us.
Such a cute video. And to think how much Rylie has grown and the "new" things she has learned and done since Christmas. It was fun to see and play with you last week! l&B
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