She’s very involved in what she hears and what she doesn’t
Well it’s funny, because since she’s been medically involved since she was born. The progression of developmentally what she’s ready to hear and what she doesn’t hear has changed, and so she now tells us how far in advance she wants to know about her appointments. Her heads up time is two weeks; she likes to know two weeks before, so we tell her two weeks before. She’s very involved with what she hears and what she doesn’t. The last time we pulled her out of a medical appointment was probably when she was six, and it was around the spinal stuff that she couldn’t really understand, or didn’t really get. Usually she’s in the room with us when we’re hearing stuff, and we usually stop the doctors from talking for a minute, and make sure she understands what’s going on. We translate, if they’re talking in big doctor talk, like “Ok Riley, you’re going to hear about tendon transfer surgery, and what I want you to know is that we’re not going to necessarily have that surgery, they’re just telling us about that right now.” So she’s very involved, and we follow her lead on that. If she wants to be out of the room, or if she wants to take a walk, or not be involved she can do that, but she’s very involved, in a developmentally appropriate way.
Mother of Riley, child, CLOVES syndrome
She’s doing a lot
We’ve taken pictures of the experiences, like before surgery, after surgery, Riley in the halo at the beach having fun like a normal kid. So I think she’s been a part of it obviously, the whole time. I would say when she was probably six or seven is really when she started to do a little bit more of it herself, and definitely more now… She likes to tell people how she wants things to go. We’re encouraging her, if she has questions to ask them or help her ask the questions or ask the questions after the fact, if she thinks about something later on, we’ll email somebody together. She tells people during a blood draw, “I want you to count, please… count down… tell me when you’re going to poke… how many times are we going to try this… if it doesn’t work, when can we stop…” She’s doing a lot.
Mother of Riley, child, CLOVES syndrome
I’m ready to get it done
Derek has never been scared of knowing he was going into surgery, it’s never fazed him. Any time we’d ask him about a surgery, “Are you ready, whenever you want to go ahead,” he’s been, “Yeah, let’s go.” With the balloons, my mother in law was very scared at the time because he had so many, and she was like, “He’s okay with the skin graft right now, right? Why do we have to put him through another surgery and the balloons and everything?” And I said, “Well, Derek and I sat down and had a talk about it.” He was very big about making his own decisions, and so he and I sat down and I said, “Hey, bud. This is the deal. We don’t have to have the balloons put in and surgery any particular time right now. If you want to go on and just keep the skin graft with the hair on the back of your head for now, we’re fine with that. But if you’re ready to go and move on and have this stuff done so that you have hair, then we’re fine with that too, but I want you to make a decision.” I didn’t want him feeling like we were telling him he had to go and have this surgery or that surgery, and he said, “Nope, I’m ready to get it done,” because he is such a ball player, he didn’t want to be sitting out any longer than he had to. He didn’t want to get playing and then sometimes have to sit out, sit out half a year, a year to get through it later, you know?
Mother of Derek, child, Kaposiform hemangioendothelioma
He is more medically savvy than a typical child his age
Grandmother: There were a few instances when I would go into the examining room and the doctor would talk to Vanessa and I would play with Jack on the table, doing drawings and stuff like that. And if Vanessa and the doctor were whispering he would say, “What’s wrong with me?” He would want to be included in what was going on.
Mom: Yeah, and I think that is important for parents, that would be my biggest recommendation. I have always been very honest with Jack as far as what was going on. If he was having some type of procedure or anything that was going to be uncomfortable, I would always tell him, “This is going to hurt. It is going to hurt for a little bit, but this is why we are doing it. We are doing this for this reason.” And I have always wanted doctors as well to explain it to Jack, exactly what he was going to do. There have been problems with other physicians who do not deal with kids, because they will talk above him. It will be his appointment and it’s almost as if they don’t acknowledge him. I try to get them to refocus so that he can be a part of it, because Jack is a great resource as well, because he is the one living with it. And what we’re dealing with now is that he is starting to tell us where tumors are starting to grow and everything. And he’s feeling them before we can actually see them. So his role in his care is definitely changing as well, because he is definitely much more aware, he is more medically savvy than a typical child his age. When he goes in for blood work, he will pick the vein to do the blood work from, because on the other arm he might have had a blow-out of the vein. He can basically do a lot of the stuff.
Family of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
I always try to give her choices
Ashley: My decision is important. I’ve always had an opinion, and it always mattered.
Mom: I don’t think she’s ever come and said, “I don’t want to do this.” And I think at that point we would readdress. I always try to give her, even on the small things, choices because so often she doesn’t get a choice in things. I think that I like that here, too, when they put us in the room and everybody’s talking, she gets to hear everything and the pros and the cons, everything. Now that she’s older obviously she’s not just sitting there, she’s listening to it and then standing and asking her own questions; even if she doesn’t ask them then, she’ll come up with questions later. But I think that would be a tough day, if she started questioning choices. In the teen years, that’s probably going to happen, I would suspect.
Ashley, teenager, and mother, Lymphatic malformation