Leah hearts coconut oil & Mommy complaining

Something Leah has gotten from her father: a love of coconut. Here's the back story: weeks ago when Leah had thrush, I used coconut oil to get rid of it. It seemed to also have a laxative quality to it. Well, the thrush came back (if you recall I said we had won the battle with thrush - not the war). So I called our friendly nurse practitioner and she called in a script a week or so ago. The medicine seems to be working just great, but it has appeared to constipate Leah a bit. So I brought out the good ol' coconut oil yesterday.

I keep a little measuring cup of it within reach on the coffee table and periodically dip her binky in it. She loves the stuff. Here's what she does:

She'll suck all the oil off the binky, making her saliva nice and coconuty and oily. Then she'll spit out the binky, and take her hands and wipe her drool all over her face. Then she licks her hands to keep tasting the coconut.

At this point the more greasy her face is, the better. She began rubbing her face just above her left eyebrow a few days ago and gave herself a nice little, not quite dime-sized blister. I keep trying to cream it but she just keeps on a-rubbing.

Other than that her skin is looking a bit better. We've had a huge problem with her back recently. Her whole lower back right down to the top of her little bottom had to be covered and we had a do a belly wrap. After a few days of that it looked improved this morning but it'll be awhile before it's totally healed.

Her right arm is clear, the only issue on her left arm is on the inside of her elbow - and it's healing nicely. Even her legs are healing up nicely.

As for me, I've been in a funk lately. (I warned you in the title that I would be complaining - I've always been a whiney bastard). After awhile everything just kind of gets to you. I hate EB. I hate that I have to pre-treat everything Leah wears to get the blood from her ears and 'gunk' and cream residue out of everything. I hate that I can't pick her up like I would a 'normal' baby because she would blister and I would hurt her. I hate that I can't hold her to my chest and walk or dance with her because her trach would press against my chest and hurt her. I hate that I have to order, stock and keep track of bandaging supplies that take up an entire room of the house. I hate that I can't put her in any regular outfits. I hate that we can't go out anywhere because of a.) the arsenal of supplies we'd need and b.) if anyone saw her and made any comment like "What's wrong with her?" I'd punch their face in ... and then get arrested and then who would take care of Leah?  [I realize I need to be an EB advocate of sorts but it's really hard to do when I'm out of the house (on the rare occasions I do get to leave the house) trying to clear my head and escape from it all for a bit, only to have some random Mom with her random non-EB kid see all the diaper cream and Vaseline I'm buying and try to make a joke about it and all I can do is glare at her]. 

I hate that I can't hear Leah talk. I really hate that I can't hear her laugh. And to top it all off I've gone from homesick to home ill.  Maryland is where I live, but it is not my home and probably never will be. Pennsylvania is my home and I miss it, seemingly more and more everyday. My Mom brings me things from home when she visits (like decent food) but it's not the same.

It boils down to: we moved here for Leah & Leah is here, so we are here, so I am here.