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MESSAGE FROM MARK
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First of all - this will not be as eloquently put as Carolyn's previous blog entries, but nonetheless...
Thanks to everyone for the wonderfully good thoughts and prayers, it has help sustain us during some of the most difficult times a parent can endure. We know that Rosalie is very loved by many people around the world.
Well, today as Rosalie "graduates" from ICU. She will be moved today to what is called "7 Long" where Pediatric Oncology is located. They were able to remove the EVD (drainage tube from the ventricular space in the brain) yesterday and she is very stable. This is good news as she will not need a Shunt.
She is still suffering from what is called "Posterior Fascia Syndrome" which is a very common result of the type of brain surgery she endured. It consists of:
- wandering eye (her left)
- almost no overall motor control (floppy)
- no swallowing reflex (thus she still has the feeding tube)
This is all very normal and will "repair" itself in the coming weeks. She will be receive much Physical and Occupational Therapy in 7-Long. This means that we will probably still be in the hospital for another week or so. But we do not mind as it is a very safe place to be.
We are beginning the next stage of her care by exploring the possible Post Operative Treatments for her type of cancer. We have an excellent team of Pediatric Neuro-Oncologist working with us on the options. I have been in person contact with the most Prominent Doctors in this field from St Jude's to the Chairman of the Children's Oncology Group (COG).
We are getting the best possible consultations on this very difficult decision.
Keep the Faith!!!
Mark
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MESSAGE FROM CAROLYN
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Rosalie is slowly recovering. We will move out of the ICU today and onto the "floor." I have to say that we'll miss all the personalized attention. We've really grown to love the doctors and nurses here.
She is still very limp and this is a normal side effect of slicing her brain where they did. It is called - "Posterior Fascia Syndrome" and includes a lazy eye, limited motor control, and poor swallowing reflexes. We will spend the next week or so working with occupational and physical therapists here to get here back in shape. This will take a few weeks.
We will be sending out second opinion packets this week, and then we will have to make this very difficult decision on how to proceed. None of it looks pretty, but it is necessary if we want to kick this tumor.
We just keep reminding ourselves that this journey will take a lot of patience. Each baby step we take is one step closer to the end.
Carolyn
6 comments:
We are friends of Judy Reibel and we are following Rosie's progress. We are praying for her and her family and we have confidence that she will recover! Please know that you are in our hearts and in our prayers every day.
I would like to thank everyone for being so kind & supportive of my brother and his family. I know it means a lot to them as well as to the rest of us Reibels. I know in my heart that Sweet Rosie will pull through this with all of the love, support & prayers coming her way.
Once again, thank you all so very much.
Kenny Reibel
Hang in there guys. My thoughts are with you. Call me if you need anything. I'm in the city most days and am available if you need any help.
Big Squeeze
xoxoxo
nica
checking in on our little buddy. i think of you all often throughout the day and feel complete confidence in her care and her fabulous recovery.
Kathryn & James
We think about you guys everyday and keep Rosie in our thoughts.
Lots of Love.
Hi Mark and Rosalie,
I work with Kenny and I just wanted to say that I pray everyday for your Rosie- so she is well protected . My prayers are with both of you as well.
Rose
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