When I was 10 years old I developed a severe case of psoriasis on my head. The doctor thought it was ring worm and suggested we put down my dads cat that he'd had for 14 years, assuming I contracted it from her. We did. He then suggested that I cut my long hair really short so that it would allow my head to breathe and it would clear up faster. We did, but we had to go to many hairdressers before we found one that would touch me...the hairdresser wore rubber gloves and my mom had to pay her three times her normal rate. I also had to stay out of school for two months and a letter was sent to all the kids parents telling them that there had been a monster with ring worm among their children and to get them checked asap. After two months, it turned out to be psoriasis. Needless to say, after the doctor asked my mom if he could take a picture of my head for the medical books, calling it "the worst case of psoriasis he'd ever seen" and neglecting to apologize for suggesting we put down our cat, practically shaving my head, keeping me out of school for months, and all the humiliation that went along with his misdiagnosis, my mom decided to find a new doctor. I have two points to this story. The first is that I remember, as nauseating as this may sound, my mom putting baby oil on my head every night and wrapping a plastic bag around it, and in the morning, like a mama baboon, picking my head for hours...this went on daily, for months. Moms do these sorts of things without even batting an eye, it's just second nature to them. I'm that mom now too. I'm willing to do whatever I have to, stomach turning or not, if it helps to make Charlie happy and more comfortable.
My second point is that I never really realized until lately just how much stress can physically and mentally affect someone. For the first time since I was ten years old, the psoriasis' are back, and I have eczema in my ears too. My memory is non existent...I put all my appointments into my iPhone and I still forget. Last month I made the same appointment twice, for a nurse to drop by the house, and I stood her up both times. Today I texted Charlie's nurse wondering where she was, but I had the wrong day. And the other day instead of putting eczema cream in my ears I put "Jack Newman's Nipple Cream" in them (3 days in a row!). I lose my train of thought mid sentence, am easy to snap, and am having a lot of weird nightmares. I think that it's a cocktail of stress, lack of sleep, and just general mama brain...somethings got to give.
We took Charlie to see her pediatrician yesterday. She's lost a little weight so we need to monitor it more regularly to make sure we're feeding her enough through her g-tube. It's a science when it comes to SMA babies and their weight...you need to make sure they are getting enough nutrition while at the same time making sure they don't get to much and become too heavy because their weak chests can't handle the extra weight. So, we're working on perfecting her diet. It was a bit of a sad appointment because we realized that her sucking reflex must be dwindling, otherwise her weight would not have dropped because we've been feeding her both by g-tube and breast...if anything, she should have gained weight. At least we know that we chose the best time to get her g-tube surgery.
We had a couple of research students who work in genetics come over yesterday. We have agreed to be a part of an on going study that follows parents who have children with rare terminal illness'. At first I didn't want to participate, but then I thought why not? They plan on using the information they compile to better provide help in the future to families who are in similar situations. I've done my good deed for the year i guess.
I have been getting emails and messages left here on my blog from a lot of people who have either gone through/are going through a similar situation to my family's, as well as from just genuine kind, compassionate people. I just wanted to say that I appreciate every one of your messages and all of your words of praise and encouragement. It means a lot to me/us and sometimes, it really is one of the only things that keeps me feeling hopeful and optimistic. Thank you kind strangers and friends. xo