Kiira turned 2 months old on December 12th. We had a good week, where dressing changes overall went well and we haven’t seen any new blisters. One of the little blisters had a scab on it, and from our understanding of EB, it isn’t very often that the skin scabs. It tends to heal from the outside in. I mentioned that it was “weird” to Jason and he said, “Is it?” I guess not, considering the numerous prayers our sweet Kiira is receiving.
In addition, a ton of my family, including Jason and my older girls were sick, but once again, God had his hands on Kiira and me and we did not get sick. Of course, that meant I was caring for the family, but I was not alone. A sweet family brought us chicken noodle soup and I had other helpers for Kiira’s bandages. We have certainly felt the love!
Another God moment happened last night. We were at Bible Study and Kiira decided to spend the entire time screaming. I was in the other room with her listening to the Christmas stories in the other room when some of the moms came in and talked to me about colic, since Kiira’s screaming is somewhat normal on a nightly basis. I didn’t deal with this with the other girls, but they had with their kids, so I asked for tips. One of them was “white noise”. I put Kiira in her carseat and one of the moms put her phone next to Kiira with her white noise app blaring next to her. Kiira immediately fell asleep. While that alone was great, what was even better, was that when we arrived home, there sat an anonymous gift on our doorstep. We haven’t been opening these mysterious gifts since we wanted to save them for Christmas, but Jason decided to open one of them. Lo and behold, it was a white noise maker machine. Wow, just wow. If God can speak to whoever this mysterious gift giver is and tell them exactly what we need when we need it, He can heal Kiira.
I’ve received a couple messages from people recently who are so confident Kiira will receive this miraculous healing. I can’t explain how encouraging these signs from God are to me. Sure I still have some rough moments, but I have felt more uplifted this week than I have in the last 8 weeks. I have also stopped researching EB, as my mind needs a break. I am just trying to let go and let God, as hard as that may be.
Kiira’s 2-month checkup went well. Although her doctor doesn’t really know much about EB, he thinks she is looking great. She gained nearly 2 lbs in one month (11.1 lbs, 43%ile) and she grew 2″ since birth, so she is now 22.5″. I still see that she is eating well and since I wake her every 3 hours during the day, she is sleeping through at night. We had her audiology appointment today and once again they couldn’t get a good reading, so we’ll return at about 8-months old, but I really have no concerns about her hearing since she smiles at our voices and follows us around. Kiira is also starting to play with toys so it’s really fun seeing her bat at toys on her playmat or bouncer and know that we can now start to entertain her with toys. I also have not been great about giving Kiira baths for fear that I’ll hurt her. However, I finally got brave since she spit up all over herself and really needed one. So Kiira got her first full bath and loved it. We kept the bandages on and did bandage changes immediately following, but it actually went so well that I did it again today. I read how painful baths can be later on, so I’m glad she enjoys it for now and hope we can make it a fun “event” for her for as long as possible.
One thing I didn’t think about with dealing with Kiira was how much it would affect the rest of my family and probably even friends. I spent the last 2 months stuck in my own cloud of self-pity and constant worry. I struggled to see beyond what Kiira needed now and in the future, that I didn’t see how others were also impacted. In some ways it has brought us closer as we rally around Kiira, but in other ways it’s really tearing people up inside and we all try to deal with it in our own way. Writing Kiira’s story is my outlet, and so sometimes you’ll read very raw, difficult posts, because that is what I need to share at that time. Jason and I got our genetic tests back and it confirms Kiira’s results, as Jason and I both carry one of her mutations. This means some day our other girls will want to get tested to see if they are carriers and some of my other family may want to do the same so they know if they are at risk of passing it on. Again, this is another way it has an impact beyond just Kiira.
Sometimes I see moms holding their babies so easily as I did with my other 2 and I feel jealous that I can’t do that with Kiira. Sometimes I still wonder why Kiira, why us? I feel like over the last 2 months I’ve been holding back with Kiira–not allowing myself to connect with her for fear I would lose her all too soon, but something changed over the past few days. I see her beautiful smile, hear her laugh and my heart swells with love for her. She tries to “talk” to us and I love our baby conversations. People look at her and tell me she is beautiful and no one can tell by looking that she has anything wrong with her. I try to cherish these compliments, because I fear that someday people will look at her all too differently.
At church one Sunday we sang the Jeremy Camp song, “There Will Be a Day” and it reminded me this life is temporary. We all have aches and pains and illnesses and face death all too often. I don’t want Kiira to suffer and to have EB anymore. I want God to perform a miracle on her. While I wait for that, I will try to remember these words:
“I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth
That we will enter in this rest with wonders anew
But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering
There will be a day with no more tears
No more pain, and no more fears
There will be a day when the burdens of this place
Will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always”
The prayers we can use for this week:
- Healing for Kiira
- Peace and comfort for all of those who are impacted by Kiira’s diagnosis
- Our appointment at Stanford goes well on Friday and we can get some major questions answered and good resources for Kiira.
- Our family stays healthy through this cold/flu season
- The news piece done on Kiira will bring much needed awareness about EB so that EB research can find a cure for those who are suffering everyday due to EB.
Again, we want to express our sincerest gratitude to all of you who have been praying, sending supplies, bringing food, etc. We are truly humbled, but feel so blessed to have the support of so many of you. We cannot get through this time without your love and support, so thank you!