Wednesday, April 16, 2008

Daily Life with Eczema

Hello everybody!

It has been quite awhile since I have updated this site. I think I partially slack since Pete's blog is so great...he's such a great writer!

We've been battling through another flare-up of eczema on little Avery. I have realized lately, in talking with friends and other people that most people really don't understand exactly how a baby who has bad eczema affects the daily life of a family. I have been debating about writing about how our lives are on a daily basis, but didn't want to come across as complaining. So, I will simply write out what it's like for us to walk through this trial. I do thank God daily that it is ECZEMA and not cancer or another horrible disease affecting our child. The dermatologist says she will almost 100% grow out of this by the time she is 5 years old. In the meantime, we just try out best to keep her comfortable and happy.

Playing in the Sandbox

Today we got home from Barnes and Noble where we spent the morning reading books. It was a nice outing. Both Avery and Kyla did great and had a lot of fun tearing the books off the shelves! On the way to B&N I had Avery in footie pajama pants so she wouldn't scratch her skin. Then I changed her in the car to regular pants. These pants have been great because it keeps her from breakking the skin and the car is her favorite place to scratch because she is idle. The dermatologist told us and I have read that the itching/scratching is mostly triggered by a stressor, allergy, heat, and/or being idle.

When we got home from our morning out the girls ate lunch and then Avery wanted to play at the sand table in our backyard. She loves the sandbox so much. But a toddler who has eczema all over and sand do not mix very well. I knew this would make her happy and I d0n't want to keep her from normal toddler activities just because she has eczema. So, she played, threw sand all over...had a great time! When she was done I realized sand was everywhere, of course, stuck to her skin. She started to scratch it. I took her clothes off and it was in every crease and fold. After she was totally naked she wanted to go back outside and play, so I let her for a little while. After all, some articles on eczema say the sun helps a lot. Since it wasn't really hot out, I thought this might be a good thing for her skin.

After playing awhile it was bath time, and Avery FINALLY likes the bath!! We have to keep the water almost cool (lukewarmish) or she will scratch her skin to pieces in the bath water. She scratched anyway today as I washed the sand off her with her oatmeal bath. She didn't want to get out. She threw a temper tantrum when it was time to get out. Whenever Avery throws a temper tantrum or doesn't get her way, guess what she does?? You got it...she scratches and scratches and screams. Stressors make her scratch. This is the hardest part about having a kid with eczema. You can't let them always have their way and still have to train them, yet when they get upset (which is inevitable) they scratch.
And why is it just so bad they scratch? The more she scratches, the more her skin gets irritated ,red, and swollen. Then, the more it itches. The more it iches, the more she wants to scratch until it's bleeding. Then it's just really hard to get under control. We've tried steroids and they work to a degree, but you are not allowed to use them all the time and as soon as we stop, it comes right back. Currently our best creams are Aveeno Eczema Care and 100% Pure Shea Butter from www.naturessheabutter.com.

So, I slather her arms up with her several lotions/creams and put her in her eczema mitten shirt we just ordered about a month ago from SnugglePaws.com. This shirt has been a lifesaver in many ways. And she LOVES it. She asks to wear it. And she can't get to her hands in it, but it doesn't bother her at all. I put her shirt on, lay her down and she tries to scratch at her legs while I lotion them up, but it ends up being just a frantic rubbing instead of bleeding/scratching. After she's all dressed she goes back to her happy self and I put her down for a nap.

So, that is what is involved because I let her play in the sand. It's a lot. It is stressful at times. But, right now, it is also life. I just pray every time I lotion her up and change her diaper that the Lord will choose to heal her skin and give us wisdom on how to care for her throughout this time.

I can truly say we have never had anything as stressing as eczema before in our lives. I think it's because it is something that is requiring perseverance and endurance for our family. In May, Avery will have had eczema for 1 whole year. She has good days and bad days. Let's all pray for more good days.