Patrick is doing well. He is adjusting to his new schedule of feedings and he seems to really have a spark back in his eyes that I'd almost forgotten. It's a very becoming look on him!
Also he started a speech therapy program called vitalstim which is a stimulation of his throat muscles. It should help him retain some swallow skill despite the fact he doesn't swallow food regularly. This is particularly helpful with regular secretions but an ultimate goal is to get him strong enough to go back to safe tasting. The therapist was very pleased with what he tolerates on his first treatment.
Jocelyn is hanging in like a trooper. She really admitted to me this week that she understands this is Mito but she just doesn't want it to be. I'm proud of her for facing that fact. Recently I have noticed people making a remark about her and while it may be true I wonder what she hears when it is spoken to her. It goes a bit like this J:I have to look at my schedule. Other Person: that's a very big word for such a little girl.
Now that's true. Jocelyn has a dynamic vocabulary full of words she learned from her dad and I, who take some pride in that, and from the medical community we have been unfortunately immersed in since before she can remember. Little lady, don't let anyone tell you that you are too small for a word. How we use words is an important part of our society, and if a six year old can tell you about her schedule or name her brother's rare disease that you've never heard of, well that's not a problem to anyone in our house.
We are doing our best to live out hope in front of Jocelyn, but we are not lying to her, nor could we. It is clear that Patrick is not doing what her friends' babies are and she needs an explanation for that. I guess we all do. So we aren't lying or sugar coating it and she might tell you about it. And if she does please dont brush her off because it sounds ridiculous for a little girl to talk like that. If you really listen I think you'll be impressed with her resilience.
