Day +258: Kiira continues to do well. She is climbing over everything she can find and loves jumping on the little trampoline that her sister Aliisa got for her birthday this week. It’s definitely making her stronger! With her increased activity, she did fall and scrape up her face pretty bad. I feel the stares and field the questions when I take her in public, but I try to use it as a teaching moment about EB. Other than that though, her skin is handling her craziness surprisingly well.
We started weaning her immunosuppressant and we were supposed to start in-home occupational therapy today but Kiira’s sisters were sick today so we had to cancel. She has been doing remarkably well with eating puréed foods. She eats an entire 4oz smoothie pouch, which is such an improvement from her 1-2oz/meal just 3 weeks ago. We’re also starting to discontinue formula and use puréed/liquid food in her g-tube instead, but it’s kind of weird calorie counting and checking fluid oz each day for a 1 year old. We cut back her calories because she still is high on the charts for weight, but low for height. We have come so far with her feeding in the last 7 months and it’s nice to finally see really tangible results.
Please continue to pray that her donor cells will go up. Thank you!