Friends With FOP

We had a very busy weekend with the boys’ baseball end of season Jamboree on Saturday and then Father’s Day today. Normally I would have left Erin at home for the Jamboree but it’s hard to get out of the house with two kids in their baseball uniform. Erin loves baseball. So I decided to take her even though I knew it was going to be a long day for her.  Pictures of the Jamboree have been added to the “Photo Album” link.

She did well most of the day. I brought her medication with me just in case I would be able to squeeze in a few drops after she ate. Erin spent most of the day in my lap on the sidelines while we watched Larkin dig in the dirt by third base and Brennan making pictures in the dirt with his cleats. I managed to give her some Aleve during lunch but she spit out some of it.

A week ago I told the boys’ coach what we were going through with Erin and he brought her own Cubs shirt and hat. We talked a bit about whether she’ll play when she turns five. I am sure I am going to let her. This league is awesome because every family is dealing with some sort of issue with their children. All the parents understand what each other is going through and it allows children who normally wouldn’t be able to play little league, actually get the chance to do so. When it’s Erin’s time to play, we’ll use a real soft ball (maybe like a Nerf ball of sorts). I think she’ll be fine and I know she’ll love it!

We’re still working on Erin getting used to her new bed. Alan has been sleeping in it mostly. She’ll start off in her room and an hour later she’s crawling into our bed. Erin is a kicker…I have the bruises to prove it. She will actually kick Alan out of the bed but then will cuddle with me on my side. I managed to get some well needed sleep. I think I was in bed by 8:00 PM both Friday and Saturday. Tonight I’ll start off in Erin’s bed and wait until she falls asleep.

We didn’t hear from the genetic counselor on Friday like we thought we would have. Dawn is wonderful….I know she’ll at least follow up with us on Monday even if she had not talked to Dr. Kaplan yet. I will definitely call her tomorrow because I need to get her steroid switched from liquid to a pill. I bought ice cream at the store today so I’ll try giving her the steroid in the morning. Maybe mixing it with ice cream will help. That doesn’t sound so appetizing but I am willing to try. Someone suggested I get it in a pill form and crush it into applesauce. Until then we need to get the medicine in her.

Her swelling is still quite predominate over her right scapula. The right side of her trunk is no longer swollen…YEAH! That’s without a full dose of either medicine. Both Alan and I have finally got over that depressive funk we were in for over a week (not bad considering how devestating this disease is). I know it’s reassuring that we caught this while she’s so young and there is hope that we can do something to hopefully prevent too much bone growth. I encourage everyone to read the stories of other FOP kids and adults in the “FOP Links.” I rewatched the story of Luciana Wulkan the other night. It was her documentary that I saw on Discovery Health Channel back in December 2005. They show Luciana toes and I remember that was the first and only time I have ever seen anyone with Erin’s toes. But rewatching her documentary made me feel good and helped me get over my “funk.” At seven years old, Luciana was going to school…taking ballet…and receiving different types of treatment. Erin has a tough road ahead of her but we still have hope that we can prevent the disease from progressing.