Another busy, exhausting day for Amber – but again, forward progress.
Physical Therapy had her on the floor with me today, and tried a few positions. She did well propping herself up on her elbows (yes, both of them!), but was pretty worn out from yesterday’s PT so she didn’t last very long. She woke up a bit, though, with Speech Therapy. While she didn’t want the chocolate ice cream they tried first, she definitely liked the orange popsicle. After a bit of a nap, we got back on the floor with Occupational Therapy, and I got to snuggle with her a bit. Then it was nap time again.
A quiet evening, but then it was decided that Amber should have GI scan tomorrow morning to prep for the g-tube surgery on Monday. So, we are switching off her food at midnight tonight, and supplying only liquids, by IV – but of course, her one remaining IV decided it’s been in too long (3 weeks) and needed to be replaced. Amber’s veins decided not to cooperate too well (they’ve been through a lot lately), so it took 3 tries with lots of tears – but it’s done, and I sit here now watching her sleep peacefully.
I prayed the Rosary earlier tonight, reflecting on the Sorrowful Mysteries. I may not be able to understand exactly what Amber is going through herself, the fear, the pain, her trial. But as a parent, as Amber’s Dad, I find my own pain, my agony, in not being able to take this for her, in not being able to just fix this for her, in not being able understand why this must happen.
And so I have spent much time praying to Mary, asking for her intercession as a sympathetic parent. At this point, we know what Amber must go through (there is no looking back), so we just pray for the strength for her to continue forward, and the strength for us to carry her, to take as much of this burden as we are allowed. And as we have throughout our journey so far, we pray for those that are providing medical care to Amber, that they have the strength and clarity to continue to provide the best possible care they can.