November 20, 2015


Maintenance Day 226: Checkup Complete

Thursday was Scarlett’s monthly check up. It was a very full appointment. We brought Evangeline along so that we could get some advice regarding her as well.

All of the nurses and staff that we saw couldn’t believe how much Scarlett has grown this month and how long her hair is getting. She is looking so mature all of a sudden. She barely cried when she was accessed today. Evie, on the other hand, sat on Brock’s lap with her eyes fixed on her sister and her hands over her ears. When the nurses came in with Scarlett’s meds, Evie wanted to go for a walk. She’s very protective of her sister and hates to see her hurt.

Scarlett’s appointment was with the new clinic doctor. We hadn’t met her yet so we were a little apprehensive. It turns out she is really nice, very personable, and looks very young! She gave Scarlett her check up, went over her labs and checked her feet. All week we have been worried about the rash that kept appearing and disappearing. Of course, on Thursday, it was completely gone. I guess that’s a good thing? Since her labs were still stable, we will be increasing her methotrexate back to the full dose. We waited/played for about 45 minutes before Scarlett was given her medication over about 30 seconds. Easy peasy.

While Scarlett was getting her checkup, I had a short meeting with the Child Life counselor. I told her about Evangeline’s meltdown a few weeks ago. We discussed my fears, Evangeline’s fears and solutions to work through them. During Scarlett’s next appointment, Evangeline will have a counseling session to determine whether she can verbalized her feelings. If so, she will continue to meet with Child Life. If not, we will wait a few months and try again. Ashley, whom I have always loved, was so kind and reassuring to me. She stressed that Brock and I are doing everything we can under the circumstances. Our children are thriving – no matter how worried we are.

While we were waiting, the girls were able to make a cute snowman. They were adorable the way they worked together and encouraged each other. They have been so supportive of each other recently. On the way to the hospital, I saw Evie grab Scarlett’s hand and say “now, today Scarlett, when you get your butterfly, don’t cry and be really brave”. Scarlett replied “ok. But even if I cry I am still brave”. Very true, Scarlett! Then, on the way home, they discussed whether Elsa and Rapunzel lived in castles (Rapunzel lives in a tall tower and Elsa lives in an ice castle by the way). The best conversations I hear every day comes from them.

Last night was the first dose of prednisone for Scarlett this month. By the time I called home at four to check on things, Scarlett was having her first of many meltdowns for the week because she couldn’t draw a bow on Minnie. After Brock drew one for her, she had her second meltdown because it was too big. All we can do is laugh! The best solution is to just have fun as much as we can.

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