Ava and I had a nice weekend. Saturday we didn’t really do much of anything, just tried to relax after a long week. Of course, I am in Denver, so on Sunday we went to a Super Bowl party with the family we are staying with. I didn’t watch much of the game because Ava was very busy exploring, but football is not my sport anyway. Plus, I had absolutely no preference for one team over the other.
Over the weekend, I did two baths each day, wrapping Ava’s head after both baths Saturday and then only after her night bath on Sunday. This morning, I thought she looked a little red on the back of her neck, but hoped moisturizing would help. The plan today was to do a food challenge of baked egg. Dr. Lanser said she was clear enough since it was just a little red on the back of her neck. The plan was for her to eat a muffin that had a certain amount of egg in the recipe. She was to eat some every 15 minutes, increasing the amount each time. After the second dose, I could see the redness spreading across her face. Her skin was bumpy. Dr. Lanser came to look at her and he decided that was the end of the challenge…egg is a no go. He wanted me to get her in the bath right away and wrap her head and neck.
I got her in the tub and I could see the flare up happening before me eyes. Spots were now popping up on her arms and legs. I had left her bath toys at home because I did not expect to give her a third bath today. So, she was a little unhappy in the tub. I got her out and the nurse came to help me get her wrapped. Unfortunately, she thought we needed to use the steroid on the spots that had flared up. I am nervous about using the steroid cream too much but have been reassured that it will not be long term. We had already stopped using it last week after only a couple of days and were keeping her skin looking good with just the moisturizer. Once we know all of the triggers that can cause Ava’s skin to flare, then we should be able to keep it clear just with the baths and moisturizing.
After we finally got her all wrapped up, I got us some lunch and then Ava took a nice long nap. After her nap, I unwrapped her and we waited to see Dr. Lanser again. Ava looked a little better, but he wanted us to wrap her completely tonight – arms, legs, head – and also tomorrow morning. If she is clear enough, we will challenge baked dairy tomorrow.
Ava did improve even more on the ride home from the hospital. That made me feel a little better, as it seems like now that we have healed her skin, she will be able to recover from these little flares fairly easily. I am disappointed that she is sensitive to egg. Of all the foods she could be sensitive to, I was really hoping eggs was not one of them! We eat a lot of eggs as a family, as they are so good for you! Hopefully, she will be able to tolerate them as she gets older.
Ava is completely wrapped up now and sleeping. It was a another long day. I did not anticipate how emotional this whole process would be. It is certainly very tiring. This is not to discourage anyone that is considering coming to NJH, just something to consider and prepare for. I do think that it would have been easier for me if someone was able to make the trip and come with us each day to the hospital. Still, the family we are staying with has been wonderful and Ava is becoming pretty comfortable with them!
Tomorrow is another day, and I pray for no more set backs!