Rough weekend

Well, I wish I had better things to report from this weekend. The good news is that Ella is doing better. The bad news is that she had a really rough go of it all weekend.

Friday night was great. We had our newlywed friends, the Chang’s, over for dinner. Ella hadn’t napped so she was on the fussy side, but it was great to hang out with them and eat their leftover wedding cake!

Saturday morning Ella woke up extremely fussy. Joe had an early morning meeting, I was home by myself and Ella just kept laying in her crib crying and asking for daddy. She wouldn’t calm down and no matter what I did, she wouldn’t open her eyes. Her left eye was extremely swollen. I eventually called Joe and he immediately came home to help out. We tried everything we could think of, yet Ella continued to cry and keep her eyes closed. She didn’t want to sit up or anything. She just wanted to lie down and keep her eyes closed.

Eventually we went into our bedroom and I laid a blanket on the floor. Ella laid on the blanket and we had her shows on the TV. She just laid there with her eyes shut and I rubbed her back. Eventually she drifted back to sleep, thank heavens! She slept on our floor for an additional 2 hours. When she woke up she still wouldn’t open her eyes or sit up. Corneal abrasions are really common in EB kids, and Ella has had minor ones before, but never anything like this. She has never been so severe that she wouldn’t open her eyes. I did know that with corneal abrasions comes sensitivity to light, so we took her into the dark basement to see if that would help.

The three of us stayed down there all afternoon. Joe and I didn’t want to leave Ella’s side, and Ella, while she wasn’t crying anymore, still wouldn’t sit or open her eyes. I really wanted her to sit up so that some of the swelling from her eye would go down, so I ended up just holding her on the couch with her head elevated. She fell back asleep and slept for 4 hours.

While she was asleep Joe and I started making tentative plans to go to the hospital. We have seen and dealt with a lot, and it really takes a lot for us to get to the point of taking her to the hospital, but we were both really scared with how things were going. We knew that her natural instinct was kicking in and providing the best treatment for her little body. The more she kept her eyes closed and the more she slept, the faster that sweet eye would heal. And fortunately I have some eye ointment on hand and we kept applying it to her eye.

Praise the Lord, when Ella woke up after her 4 hour nap, she was doing much better. She sat up and asked for a cookie. She still wouldn’t open her eyes, but this was the first time she had eaten all day, so this was a great improvement. The swelling in her left eye had almost gone and she was able to sit up. She ate an entire cookie (a big cookie) with her eyes closed, and then drank 2 cups of water…with her eyes closed. We came upstairs and she had chicken nuggets and chocolate chips…all with her eyes closed. She wanted to get out of her chair to play, so Joe took her out and for the first time all day she opened her eyes. Her left eye had a very large scratch on it. We’re not sure how she got it but it was big enough for us to see, and her entire eye was very red. Once her eyes were opened she was ready to read and play just like her typical self. She even ate not 1, but 2 bowls of ice cream.

We were able to give her a bath and change her bandages, and she went back to bed pretty early (for Ella). She slept great at night and when she woke up Sunday her eye was much better. It was still extremely red, but at least she was able to open it and get around like normal. We decided to just stay in the house all day to give her a chance to fully recover. By Sunday night Ella wanted to get out, so we took a nice walk to the park and she had a great time going down the slide.

This morning she slept until nearly 10 am (needless to say, we haven’t implemented her schedule yet) and according to Joe her eye is looking much better. Metti even called to say that Ella wanted to go outside and play, which is always a good sign. We’re going to continue to monitor her eye and make sure it keeps improving, but for now we are pleased with how it’s looking. Please pray for Ella’s sweet eye and that it will heal quickly with no scarring.

Please also pray for Ella’s feet. As I mentioned before, she has outgrown her shoes, so we have been searching for something new that she can wear. Unfortunately we’ve had no luck. And with all the shoes I’ve been trying on her, her feet are in really rough shape. She has a ton of blisters and doesn’t want to wear any shoes. I have ordered yet another pair of shoes in hopes that these will work, but in the meantime we really need Ella’s feet to heal.

That’s it for our weekend. Sorry this was kind of a downer post, but this is our reality right now. We are so fortunate that Ella is able to live a “normal” life most of the time, but times like this weekend remind us that she is a fragile butterfly.