Wednesday, September 23, 2009

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.   


Linda said...

I feel for you my baby. You are not alone with all the things you hate about EB. You know how I love to hold babies but I really can't hold my only granddaughter. Maybe someday soon you can return to Pa. where you belong. Love you guys so much!!!! So glad you got all of that off your chest!!!

Anonymous said...

I feel for you too Meg! Glad you are venting because it's so good to do that. You are amazing with how you handle everything!! I don't think any of us could do any better than you! You are definately one of my heros! Leah and Jeff too! I guess just living for today is all we can do. You never know what tomorrow will bring. I pray that each tomorrow will bring you happiness, encouragement and hope. Love you, Aunt Penny

Anonymous said...

Oh Meg..I feel for you. The sacrafices we make for our kids are amazing, aren't they? You've said everything we all are hating about EB and I'm sure there's a few more out there that need to be said. Take care & I'm thinking of you guys ALL the TIME! Aunt Jody

Marian said...

For what it's worth, Mom misses you guys too-her cubicle is a shrine to Leah. She really picks up when she goes down to see you and the fact she is skipping out of here in a few months so she can help you should speak volumes. Although we may read your blog, and maybe can't physically help you, you guys are always in our prayers.

Hazelbasil said...

I get all the EB news alerts on Google and saw your blog. I read your "complaining" one and was moved by your honesty but I can totally relate. You aren't alone with how you feel. I have a son with RDEB. He isn't as bad as some children can be with recessive but hey all EB is bad! I hope you find it comforting on some level that as a parent you aren't alone and all those feelings you have are normal. You are a special mother because you were picked for some reason or another to care for your baby that is so delicate. I mainly wanted to comment that you aren't alone though.
Clearwater, FL

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