Rough Night

Our sweet baby girl has had a rough go of it the past several hours. Last night we were playing and Ella fell and scraped all the skin on the palm of her right hand. It immediately turned into one big, gigantic blood blister. She screamed and cupped her hand in pain. It was terrible! I tried to get her calmed down, but every time I went to look at it she would start crying again. She wanted so bad to hold Doggie for comfort, so she held him with her palm up. And for the rest of the night, instead of crawling like normal, she would either scoot on her bottom or crawl with her elbow instead of her hand. Even this morning she is being very tender with her wounded hand and won't crawl. It breaks my heart when she gets new boo boos, especially big ones like this.

To add to her rough night, Ella was up at least every hour last night. We don’t know if something hurt, or if she was itchy (very common for kids with EB), or if something else was going on. All we know is that she couldn’t rest. Sleeping has always been very hard for Ella, and rest for both her and us has been a constant prayer. She needs better quality rest than what she is currently getting, and we need better quality rest.

To round things out, this morning I was in DC at a meeting and got a call from Metti asking me to come home. Ella had a huge blister on her tongue and I could hear the desperation in Metti’s voice as well as Ella screaming in the background. The older she gets and the more solid food she eats, the fewer tongue blisters she gets, which is a huge blessing. In fact, Joe and I can’t remember the last time she had one. If she does get one they are usually very small and don’t affect her much. She usually just pops them on her own. But this one was big and very painful. I told Metti to give her Tylenol and I’d be home as soon as I could. Fortunately I was able to get home fairly quickly and pop the tongue blister. Within an hour Ella was eating a bottle and now she is fast asleep.

I am telling you this simply to ask that you all continue to pray for Ella. In most respects she is just like any other 15 month old. She is typically a happy and generally healthy baby girl who laughs and plays just like any other kid. But she still faces big obstacles with her skin, and we continue to need your prayers. Please pray for quick and efficient healing on her precious hand (with minimal scarring), as well as continued healing of her mouth. And especially please pray that Ella will be able to rest at night. This is the biggest struggle we are facing right now. With both of us working (Joe with an internship, part-time job and school, and me working full-time) we need sleep. We have tried everything from warm milk and other foods that are supposed to help you sleep, to both over the counter and prescription medications to help her body stop itching. At this point nothing has helped. Her shins seem to be the part that itch the most and the more she kicks them, the more boo boos she gets. We have a lot of prayer warriors out there, and we are so grateful for your love and support. Thank you for everything.