Day +278: Yesterday Kiira had her final feeding therapy. Her therapist feels Kiira is making great progress with eating and the weekly visits with the in-home occupational therapist can assist us going forward. She was a joy to work with and brought us so far over the last 5 months, but it will be nice to have one less thing.
I had the opportunity to get away with a friend for the weekend. It was so nice to spend time at the beach, which is my favorite place to be. Jason took wonderful care of the girls and I am so grateful that he is willing to care for 3 kiddos by himself so I can get a break.
When I walked in the door from my trip, Kiira’s finger had just been stepped on by a sibling and it tore nearly all the skin off. It’s the first time we gave her Tylenol for EB related pain because she was inconsolable. Every time we bandage it, it’s excruciating for her and she screams “no, no, no!”, and looking at it makes me feel sick because the outer skin is just loosely encasing the raw meat of a finger. But despite the set back, Kiira found a way to crawl using the back of her hand and hold toys or a cup without the use of most of her fingers. She always finds a way.
Tonight a very sweet friend brought us dinner, took on the long, difficult task of feeding Kiira dinner, cleaned up the kitchen, helped with the kids’ homework and read to the girls. It was such a blessing and set a peaceful mood for the house for the rest of the evening. Thank you Asha!
I still have my good and bad days or moments. In front of Kiira I try to validate her pain, but remain positive and hopeful. On my own though, I cry with her, for her, because I can’t take this away from her. But she just smiles and gives us kisses as though to say, “It’s ok that you can’t take it away. I still love you. I’ll find a way to live with it.”
