Rosalie has lost much of her hair. She looks just fine without it - as adorable as ever. We keep wondering if she'll lose those mile long lashes as well. The jury is still out.
She shows glimmers of progress each day. Her most consistent improvement has been her eyes which are able to focus together now. Every now and then they look a little crooked, but nothing that concerns the doctors. Her physical therapist notes that she shows head control 50-75% of the time as opposed to 25% two weeks ago. She had a "modified barium swallow study" on Friday which showed that she is safely swallowing purees and nectars but not liquids. So our occupational therapist will allow Mark or me to give her things like pudding (considered a puree), but she wants to be present whenever we try to give her liquids. The swallow is an amazing function that I am sure most of us take for granted. As for quantity, we are talking the likes of five bites before she gets tired - so she will still need her NG tube (feeding tube that goes into the nose and down to the tummy) for quite some time.
She communicates mostly through expressions (eyebrows raised means yes, sour face means no). But she has surprised us with a few words and signs here and there. For instance, the occupational therapist asked if she wanted to play with a toy, and she said out loud, "No." That was huge! She has also said "Mmmm" for more, signed "All done," and signed, "I'm hungry." Again, this communication has been inconsistent, but we know that consistency will come in time.
This journey is an incredible combination of patience and urgency. Patience knowing that progress will take T-I-M-E; urgency knowing that every bit of stimulation helps.
Continue to keep Rosalie, and all the children of 7 Long (Pediatric Oncology Floor at UCSF) in your prayers.
Also, if you have any questions, please email me or Mark. The other day someone asked what those moon boots were for (in a photo of Rosalie several days back). They are to help stretch out her achilles. We welcome any questions you might have about treatment, rehab, etc . . .
2 comments:
Rosie and your family are in our thoughts and prayers. We love you guys SO much!
-The Braunsteins
Hi there! The dogs and horses and jumpy frogs at Sycamore Hollow all give a big shout out/neigh/ruff/rivet-rivet to the #1 Rosalie!
Love, Whitney & Channing
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