Today Kiira is 2 weeks old! It’s been such a whirlwind, but we are still enjoying having Kiira home. The girls always want to touch her and I hate telling them no or “just touch her blanket”. They have both helped feed her though and those moments are so sweet. We are worried the girls will despise Kiira because of the extra attention she requires, the lack of attention they get from me, and constantly having to tell them to be quiet or stop fighting in front of Kiira. It’s one thing to deal with a sick child for a few days, but it’s another knowing this will likely be years, or even a lifetime, of extra care. It’s really hard to balance their needs and we ask the girls to be patient with us, as though a 2 and 4 year old can understand what that means. Miia just asked me when she can play soccer again. I want to get back to our fun activities but it seems impossible right now.
Jason and I keep trying to break records on dressing changes. As much as we want to help Kiira, it’s becoming such a chore we dread. Trying to break records gives us something to work toward. We keep her room calm, give her a bottle, and use music or the sleep sheep to help soothe Kiira. When she gets frantic, it’s so difficult to wrap her clenched fingers. At least we only have 2 more days where we have to do it twice a day. We are hoping tomorrow the dermatologist in Walnut Creek will tell us we don’t have to do as much, but I see pictures of kids much older than Kiira who are still bandaged. It just breaks my heart.
We went a few days with no blisters, but today we had to pop one on her chest and she has some on her lips, which were healing so well. I’ve been trying to nurse her again, and suspect maybe that caused some damage. So, continuing with bottles for now. We are learning how much we can handle her without causing her more injury. At least I can hold her some and give her kisses–things I didn’t know if I could do a week ago.
We also had Kiira do some tummy time and the crazy girl rolled from her front to back every time we put her on her tummy. She also holds her head up for extended periods of time. She is showing us her strength already!
Despite some frustrations, finding an online support group has been really encouraging. The people who deal with EB and have reached out to me to send free supplies and words of encouragement have brought me some relief that some days I feel like I can’t find for myself.
I can’t express how much we appreciate the comments of encouragement, the meals and help with our girls. We are so lucky to have such wonderful family and friends who want to show Kiira their love!