Monday we meet with Dr. Orchard (the BMT doc) and the cardiologist. Rylie will have an echocardiogram that day as well. All kids with Hurlers are followed by a cardiologist. So far Rylie's heart looks strong with little damage from MPS.
Tuesday we report early for surgery. Rylie will have a lumbar puncture, brain MRI, her hernia repaired, and her Hickman catheter will be removed!
Wednesday we have nothing scheduled.
Thursday we meet with Dr. Bjoraker for Rylie's neuropsych testing.
We are flying home on Thursday afternoon.
If everything looks good, they will start to taper Rylie's CSA drug, and she could be off by Christmas! Once Rylie is off the drug, she can start building a normal immune system again, and maybe Rylie can start music class in the spring. We're still waiting for T-cells, but that can take a year to come back after the chemo. Hopefully Rylie's body starts growing those quickly.
8 comments:
Thanks for the update and good luck with all the appointments! Rylie looks great :) JL
Praying for little Kam and for a safe week for you all...the pix at the zoo are precious. Love from the West Coast. Deb
Glad to have Rylie's schedule. Thinking about you all getting ready for her 6-month check. Prayers for easy preparation this week, and safe travels & good results next week. love, L&B
We'll pray for safe travels and successful treatments for you, Miss Rylie, and family. Lots of love!
Will be thinking about you all next week and pray for safe travels and good reports! Love all the pictures...what fun! Hugs and knuckles -- Jo & Leonard
Yeah, no more lines to take care of!!!! This should should be the best trip to Minn. ever well, as good as any trip to the great frozen north can be ;) Stay warm and have a safe trip. Praying for ya!
Todd, Nicole and Wyatt
(P.S. Wyatt also wants to know where his friend with the red hair went?)
Rylie Girl,
Thank you so much for the update. We left a message re: Kam Kam,too.
We will be praying for you!
So proud of you and please send our love to your mom and dad!
P.S> Tell your mom I will be sending her something soon now. It will arrive when you all return from Minnesota!
I have been having trouble with my computer and then with the blog (my fault) for some reason so that is why you have not heard from us..But we have been praying!
Love to you,
Jan Sinkevich
Fantastic news-great pics. We are thinking about you every day and you are close to our hearts all ways!
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