EmmaLee Update:

So, I guess it's been a while since I checked in and updated you on EmmaLee's status.

Obviously, she just turned 6. (See Ladybug Party post) And she's in Kindergarten this year, and loving it... i think. She likes the learning, and the reading and writing... but making friends, not so much.  I'm sure she's got a few nice kids that she plays with. But I don't hear about them. She only tells me about the mean ones. It's really hard hearing her tales of the comments kids make and their actions towards her.  She's been hit. But I guess some 5 and 6 year old's still do that anyways right? And that particular time I don't believe it had anything to do with her being different. Sometimes she says no one would play with her at recess.  Is my kid that outcast that everyone runs away from at recess? I remember that kid from when I was in school... it's sad, I really hope she's not.  She has such a sweet and fun personality, why would any kid not play with her because she's red? So what. She's red. Get over it already. But that's hard for kids i guess. They just want to fit in and be accepted. Sometimes I feel like saying "Poor baby, how can I protect you from this?" I feel so powerless when it comes to these situations. The younger kids are quicker to accept her and move on, but the older kids that she sees in the halls, on the bus, etc. They speak before thinking. They're ignorant, and don't care to learn why she's red, it's easier to make fun. Ah, the insecurities of children. When you're pointing at someone else, no one looks at you. Well this post wasn't meant to be all about school and the gripes I have about other kids...

Her hearing has come a long way since this post. She has had only normal hearing screens since then. And her glasses have really helped... Helped so much that she decided her eyes were fixed and didn't have to wear them anymore.    :-)   Of course me being the mom, I still made her wear them. Until... she had an eye exam at school, given by the school nurse, and failed the test wearing her glasses! What the ? "Okay, you don't have to wear them anymore."  Funny thing is, the glasses actually helped her look....normal? Somewhat.  The frames covered her (non-existent) eyebrows. And drew attention away from her lack of eyelashes. Weird how a little hair on your face makes a difference. Her eyelashes have grown out a few times and we always make it a big deal, about how beautiful they are and how pretty she looks. Hmmm, I wonder how that reaction might be affecting her when they fall off....

We haven't had a major infection since this post. But we have had quite a few "almost" infections. It's like when I see that trigger happen, I feel this intense full-body panic. Fight-or-Flight adrenaline type of nerves and anxiety. Right away we usually see signs that it's getting worse, so we do everything we can, praying it doesn't come back. Luckily, they have all gotten better after an exhaustive overuse of ointment. But it's still scary. I don't even want to think of going down that road again. I can't stand to see her hurt like that last time.  Unfortunately, one of the (many) triggers we discovered was urine.  EmmaLee requires more sleep than most children her age because of her disorder.  Her body tries to heal and repair itself during sleep, although it's pointless since her skin doesn't "heal".  Sometimes it seems as if she grows a whole new layer of skin during these sleeping hours.  Anyways, she has been night-time potty trained for a long time, but every once in a while she'll have too much to drink at dinner, or sneak a cup of water at bedtime (which we don't allow) and wake up in the morning soaked in urine.  She just sleeps too heavily to wake up in the night. So the urine just sits on her skin all night and BAM, as soon as she wakes up she's in pain from it. Infection type of pain. We actually have a classification for "infection pain" since it's such a specific type of hurt. We haven't experienced anything that hurts her more than that. So it's back to Pull-Ups at night-time.  But, even when she wets in those we still see a reaction. I feel like the water police at bedtime, hovering over her making sure she doesn't try to suck water off her toothbrush for a drink! It's sad. And mean. But I gotta do it.

During the night all that skin repairing underneath causes the top to get really dry. Which is why her bath must come first in the mornings. Before food or playing. Mostly because when she awakes she is extremely uncomfortable and dry. The skin on her face becomes so dry and tight that it cracks if she talks or smiles, and opening her mouth to eat is out of the question. Well you can imagine that poses a small problem concerning breakfast and having time to eat before going to school since the bath takes over an hour.  So, she drinks her breakfast. Through a straw. Nothing gross, not like pureed food or anything, haha! Just Pediasure in a can, we still call it her "formula". She gets up to 4 formula cans a day if she wants. She drinks two in the bath, has one at school, and the other is optional once she gets home from school, but we usually just eat a snack when she gets home. 

So the other day EmmaLee tells me right before we are about to walk out the door to get on the bus that she's hungry. Well there's no time by that point to do anything about it so I said "Sorry, but you're gonna have to wait until snack time at school". She whined again that she was hungry and decided she could just ask her teacher at school for some peanut butter crackers. I told her "No EmmaLee, you need to wait until everyone has snack. It's not fair if you get to eat an extra snack and no one else gets to." So she gets to school, and what does she do. She asks her teacher anyway.

Then I got a call from her teacher. Apparently EmmaLee has been "hungry" several times in the mornings and "Is she eating breakfast at home?". "Yes, she drinks two cans of Pediasure for breakfast while she's in the bath and occasionally eats some peaches or pears, but there's not really time for anything else because her bath takes so long." The teacher suggests that maybe we need to wake up even earlier to make time for breakfast because she might be going through a growth spurt right now and needs more than the formula. Hmmm, I think it's more likely that she just wants to eat a snack but who knows. Drinking two cans of formula fills her up and sometimes she can't finish the second one because her tummy hurts from drinking so much so fast. But it is liquid and maybe it doesn't leave her full for very long and it's not like I'm going to deny her food. The teacher was very nice on the phone, but I really felt like I got scolded. Like I was an inexperienced mother who needed to be told that children need to eat. I'm sure it wasn't meant that way, but I totally started bawling when we hung up. I'm pretty emotional sometimes. I know I'm not a perfect mom, but I hate feeling like I'm a bad mom.

I bought some Eggo Waffles and now she's eating breakfast everyday, and although I was giving her food before, i guess eating fruit in the bath a couple days a week wasn't enough since she obviously didn't consider it her breakfast. Now we sit at the table to eat, sometimes all decked out in her snow gear so when the bus pulls up she'll be ready. There's not always time to finish, but at least I tried. Waking up earlier really isn't an option for us. She needs that sleep... and let's face it, I can't drag my butt out of bed any earlier. I hope she's not still trying to get a snack when she gets to school....

Other than that, she a super happy little girl. She misses her brother while she's at school all day, which of course means there's total pandemonium in my house when she gets home and the two of them reunite. They start rough-housing and jumping off the furniture....crazy kids! Lol! She gets to go on a field trip with her class tomorrow. She's really excited for that. That's pretty much it.

Wow! She's growing up so fast!