I'm having a blogging slump lately, but hope to be in a more bloggy mood here sometime soon. I guess it's just hard to have a lot to talk about when I pretty much stay in the house almost all the time and do the same thing the same way every single day. I can't really blog about where we go and what we do, because we don't really go and do anything... especially not during the week.
Jonah has been really fussy the last couple days. I figure it's probably teething, but with all his normal issues and all the fussing on top, it's a little tough. And he is not eating well at all. We've had a couple 14-16 oz days these last couple days, and he won't even touch solids anymore (he now gags when I give him apples or carrots... his two former favorites). I know that may be typical with teething, but it's a really big deal when he doesn't eat. Even a few days with so few calories can be detrimental to his healing and growing. He requires so much to be able to heal and regenerate skin. I can't begin to tell you how crazy it makes me that EVERY bottle is a struggle, and that sometimes I can't get him to eat at all. Yesterday he didn't eat from 12:45 pm to 8:15 pm. He then ate four ounces and proceeded to throw it ALL up. Then we could only get him to eat two more ounces after that. Today he's eaten a tiny bit better, but is screaming full force right now while Matt tries to give him his last bottle of the evening. Drivin' me nuts, I tell ya... NUTS.
Even though it was Matt's night last night, I slept horribly. I kept dreaming that Jonah's skin was blistering or peeling off and kept bolting upright in bed thinking I heard him crying, but not through the monitor. It was on. He wasn't crying. I don't know what my problem was. That's why I'm in such a foul mood tonight I guess... exhausted, knowing that it's my night to be up with him. And then getting up tomorrow and doing it all again...
Dr. Heather came today, and I have nothing but good things to say about all that, so I'm going to save it for tomorrow, because right now I just feel like being pissy, and I don't want to taint the good that it was with my crappy mood.
Maybe reading all that Sam is going through and having all of our own struggles with Jonah... it all just makes me so mad. I hate EB. I hate that it exists. I hate that it affects innocent kids who haven't even had a chance to live ANY pain-free years. I hate that they have to live covered in bandages. I hate that they can't play sports or struggle to ride their bikes, go swimming, or even wear a pair of regular underwear. I hate that they deal with having an odor because of drainage they can't control. I hate that so many have to fight to convince insurance companies to cover medical expenses, bandaging supplies, and genetic testing. I hate having to explain what it is. I hate that nobody knows about it. I hate that people stare in public. I hate knowing that if we have to go to the hospital, I have to be the nurse and the doctor. I hate that nobody except another EB parent really knows how I feel. I hate that I have to be part of this club. And I hate that, for now, the only possibility of a "cure" is taking your child within an inch of death and watching them endure unbearable suffering before it gets any better... if it gets any better.
I HATE THIS.