Day +250: Kiira continues to amaze me. I returned from a wonderful, relaxing weekend in LA (catching up with many friends I’ve known for over 17 years), to see Kiira walking! Of course now that I’m home, she wants me to help her walk, but she was doing it on her own without me. Needless to say, Jason survived the weekend without me.
We did labs on Monday, which revealed she needs an IVIG (antibody) infusion. I knew it was coming and they scheduled a loooonnng appointment for Thursday. Honestly, I dread it because last time it took an hour of screaming to find a good vein and it still infused into her arm, making it swollen, but if that’s all I have to complain about, we are doing well! Of course we’ll have to pay out of pocket for it, and it’s extremely expensive, but it should be more than enough to help us reach our max out of pocket for the rest of the year.
We also had Kiira’s therapy evaluation on Monday. She will get occupational therapy once a week and physical therapy and educational therapy once a month. I should find out the schedule for that soon. They evaluated her at an 11-month old physically, 10 months for feeding, but the rest was on track (16 months). So our goal is to get her up to her age level and keep her there.
I had the opportunity to go to lunch with a friend today to see her new baby and go out tonight with another, so between my visit to LA and these outings, my heart is full. I love my girls so much, but also love the time to recharge with friends. I hope my girls can see the value of friendship and the blessing we can be to each other in times of need.
A friend in LA gave me a bracelet and blog article that says “Make it Count”. We can’t change our situation and make Kiira be free of EB, but we can make it count. I hope and pray that God can use her, and me, to make every moment count. I’m sure there were will be times when I still mourn or get angry, but for today, I choose to be full of joy–to appreciate all that Kiira has brought into our lives.
