Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
Long hotish walk
We walked for a breakfast snack croissant to Pattichou, one of the longest walks we have had in while and it was a good hot day, hot sun with blowing air, perfect to see the neighbourhood. I see Pamela's strength in many ways but my favorite is when we are walking, she loves to walk Sam hard and it gets us out in all kinds of weather. A good time to catchup or just be together. Now at 9 months, she sharply inhales and you can see the determination in her jaw along with the flash of attitude in the eyes that we all know and love. And the expressions of attitude get richer and riper. Sash got into brioche and feeding Sam but complained as we got near home. She has been napping a couple hours now on 100ml saline drip to replace her fluids. Her nail beds are dusky and she is having a cranky sleep but even a little soothing takes her back to dream land. She clenches her hands together as if in a deep prayer, or just to still them. Twice her foot twitches a few times and the other foot rests on it to stop, I havent seen that before. I suddenly realise why Sasha has such extraordinary fingers, we kept hearing and saying, Her fingers are so long, So Dextrous, Such good fine motor skills (three was definately a bit of celebration of the fingers going on) - as I watch her pull at the PICC's k-lock bandage and gauze sausage and then reach to scratch around her bag I realise that her fingers are long and strong to better itch with, her fingers are the fingers of a young girl who uses them a lot, and also extensively in sleep.
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The beautiful fingers of an Alagille baby....Sasha you are just like my Jordan in so many ways.
ReplyDeleteWe love reading about your days and your walks... all our love
Leisa & Jordan (AGS) - Australia