Tuesday, October 5, 2010

One of those days

I’m having one of those weeks where I really hate EB…I mean REALLY hate it! Poor Ella is having a rough time. For starters, her skin looks terrible. Every morning she wakes up with a new boo boo on her face. Most of them are on her chin, but the one this morning was on her forehead. Then yesterday she woke up with a terrible corneal abrasion. She kept her eyes closed all day and the only time she opened them was because she wanted to go to the airport to get GiGi and we told her she couldn’t go because she couldn’t open her eyes. She forced them open so she could see her GiGi.

Before I start into the last 2 days, let me say that I am SO glad that I was able to be here with Ella. The poor girl wasn’t feeling well at all, and I was more than thankful that I was here to cuddle with her help her feel better.

Yesterday Ella woke up at 8:00, went back to bed at 9. Woke up around 11:30, went back to bed around 12:30. Woke up at 3, went back to bed at 3:30, and woke up at 5. That’s a lot of sleeping for Ella! And when she was awake all she wanted was for me to rock with her. I kept giving her Tylenol and putting ointment on her eye, but those will only help so much. At least she slept a lot, which gave her eyes a lot of rest and time to heal.

Once we got home from the airport she was acting a lot better and seemed to be perking up. I was sure that with a good nights rest she would wake up this morning and be ready to go. Unfortunately, this morning once again she wouldn’t open her eyes. She didn’t sleep as much today, but she did lay and listen to the TV until about 11:30. Then suddenly, she perked up and was fine for most of the day. She and GiGi played, she drew pictures for GiGi and showed her how she can write her own name, we went for a tricycle ride and they played outside with chalk. Metti even came over and played for a few minutes. Unfortunately, when Ella went to sleep for her nap, something happened again and when she woke up she wouldn’t open her eyes. She was only awake for a couple of hours before going back to sleep.

Please continue to pray for Ella’s eyes, particularly her left eye. They both are really causing problems and it hurts me that she wants so bad to play with GiGi and just can’t. Also, due to her eyes hurting, Ella hasn’t eaten much the past couple of days. I’m not too worried yet, but if she doesn’t eat well tomorrow I may start to worry. We can’t have her losing weight…she’s too small as it is.

And as EB in all its terribleness would have it, this afternoon when she was feeling good and playing, she was leaning down to play with one of her toys, and she slipped, hitting her cheek on the toy and causing 2 big boo boos. The girl seriously looks like she’s been through battle.

It’s just not fair. It’s not fair that a sweet 3 year old can’t even play with her own toys without falling and getting a big boo boo. It’s not fair that she can’t play with her GiGi who flew all day and came over 1,500 miles to see her. It’s not fair that she had to skip her beloved church school 2 days in a row because her eyes hurt so bad she can’t open them. Stupid EB.


boltefamily said...

I am so sorry she is struggling. I am praying for your heart, and for her skin and eyes.

Bushnell Family said...

That is terrible. Poor thing. I know my son, Ashton, goes through times like that too. They have good days, bad days, and even worse days. I'm praying for her skin and eye to heal up and for you to have strength through these hard times. ...{LOVE}...

Linda said...

Hi Katie: I am so sorry that Ella has been going through a tough time right now. I think I might Hate EB as much as you do. What a stupid disease. These precious children never seem to get a break.
Please give your precious daughter a big hug and kiss for me.
Praying that her skin and her eyes get better, God Speed. Love you guys. Love Leah's Nana

p.s. I am so happy that you were home to cuddle and be there for her.