Two Weeks Old

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!


4 Responses to Two Weeks Old

  1. Abby reed says:

    Please please contact me via email I have information that could help your daughter.

  2. Mustapha says:

    Almighty GOD be with your daughter…

  3. John Boston says:

    Please Contact me I was Born with the very same Terminal disease it can Be BEATEN i was not supposed to live padt the age of 2 then i was to pass away bye 5 plrase contact me i got so much info to give you onhow to beat tjis horrrifing Deadly disease Im a walking Marical Im 32 now and i dont have tje PAIN and Suffering that the Doctors are going to put your precious child threw If you believe in god sending people your way for a reason help me profill my purpose on earth to help save othets like me I KNOW THE CURE!!!!!!!! (904)9244020 Doctors are QUACKS they dont know tje pain and suffering We go threw but i do Call me ill help!!!!!God Bless you and your Family He sent me to You dont denie him

  4. Tracy Carpenter says:

    Bless her heart. Despite the pain, she still has that cute little smile on her face. Thinking of you and praying for a cure.

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