This past week I had a conference in Florida for work. My husband and I decided to bring Stella (8) and Scarlett to make it a special trip with our girls. Stella has only been to the Oregon coast and Scarlett has never been to the beach at all. Deep down there was no way I could leave Scarlett for almost a week. At the same time, I got heart palpitations thinking about traveling with her, large crowds and enclosed spaces combined with her compromised immune system made me nervous. I got her blood work done a week early before our trip and everything looked good so that gave us some reassurance. Scarlett was the best traveler! She didn’t get scared on the plane. She never complained about wearing her mask, which we only put on her in the large airports and when we were around a lot of people. We went to Sanibel Island and spent a couple hours on the beach under an umbrella. Scarlett is very photosensitive and for families with children who have lupus the sun can definitely hinder the fun. I was actually very worried that the sun would cause a flare that I made sure to google the nearest hospital. However SPF 50 sunblock, long sleeved swim shirts, hats, and making shade was the key. Only once during the trip she got a very faint malar rash. We also noticed that she didn’t once complain of joint pain while we there and her cough was better too. I’m sure the warm humidity really helped. We live in North Dakota. The winters are harsh and dry, we have to keep a humidifier in her room otherwise her reactive airway from her pulmonary trauma causes her to have a chronic cough. The house we stayed at in Florida had a pool and the girls swam for hours. The puddle jumper is the best invention ever. It allowed Scarlett to float in the water and kick her legs which was so good for her. She is still lacking muscle mass. This past week was very encouraging for us. We really want to make memories with Scarlett as well as our other children and have fun life experiences. Hopefully next year we can escape the cold winter with all four of our kids. Our boys are still pretty little, Dean is two and Will is 10 months old today! Scarlett told me how much she missed her little brothers while we were away. I hope we can continue to make fun memories with all of our kids.
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I love reading your entries!! ❤️❤️❤️
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