Wednesday, December 1, 2010

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!

6 comments:

Sunni said...

I just found your blog, and I love reading about your family and cute projects! (I'll be making some picture spinners!) I was wondering about EmmaLee's hair. Does it fall out because of her skin condition? And what a funny coincidence that I have recently made a new friend with a daughter named EmmaLee, too!

I have an 8-year-old, Vivi, who bullies and gets bullied at school. It is just how little kids can be. Even if EmmaLee didn't have a skin disorder, some kids would pick on her for other reasons. I think trying to keep her strong and teach her to deal with it is the best route. Doing a great job!!

Anna Dawn said...

Sunni- Thanks for your sweet comments!

To answer your question about EmmaLee's hair, yes it is different because of her disorder. But, it doesn't really fall out so much as it just breaks off. Part of the disorder affects the growth of the hair along the individual hair shafts. This is probably way more info than you wanted, but basically her hair grows out with "weak" spots along the hairs that easily break off and it has caused her hair to remain short.

I agree about the bullies. They would be there regardless of her skin disorder. I'm worried for her now that she's about to start a new school, but I'm sure she will be fine - she has more strength than I give her credit for.

Thanks again for your positive comment. Sometimes I really need that positive feedback to get me through the days.... :-)

Rhonda S. said...

I found your page on Cricut and loved your lamb baby shower items. You are very talented. I also read your blogs on your beautiful little girl EmmaLee. It saddens me that she has to deal with such a hard diagnosis, but know that God has blessed her with a wonderful mom to help her. I work in a small town elementary school and I think our kids deal better with different situations if they know more about them. Maybe you can help educate them with a class/school information hour or something. I agree that younger kids are more accepting and there will always be bullies out there, but EmmaLee smile will win her friends. I'll keep you and your family in my prayers.

mila said...

Hi Anna, just found your blog when I wanted to see more pictures of this cute baby shower you made it and started to read your daughter's story.It seems to me she is a very happy little girl and that God is being guiding you in a great way to go through the trials her skin diasease offer sometimes. Well I just recently read a book that calls " life without limits" from an australian guy named nick Vujicic. He was born without his limbs and in his book he talks about strengh and understanding that God never make mistakes. He make people "different" with a special purpose. He also says that his parents ( just like you mentioned) aised him in a way that he didn't feel different, encouraging him to be and do everything he wanted to do. If you want to read is an amazing inspirational book that could help you/ guide you to raise your daughter like you are already doing, understanding how special she is and that she can live a normal and fullfilled life. I wish yu and your family the best and will keep Emeline on my prayes, that this infections stay away allowing her to always have this beautiful smile that she has on the pictues!!

Bee Burg said...

I found your post through Thienly's, I have read all about your daughter and it made me so sad that you have to go through all that, and even sadder that you feel like a bad mom sometimes! I think you are doing a terrific job and I know how difficult this must be for your whole family! :-( I have an autistic son and it's not the same kind of thing but I understand how a special kid's needs impact the whole family and leave the parents feeling helpless way too often. Hang in there! :-)

Francesca said...

Hi Anna, I hear you! Our daughter, Lucia, has just entered Grade 1 in Brisbane, Australia. She has NS and is as beautiful as EmmaLee. Last year I did a quick presentation about Lucia to her class, explaining how she was in hospital for a long time, how we care for her, why etc. I had images to help them understand and I also showed images of her doing all sorts of age appropriate activities with friends - playing, swimming, colouring-in etc. I pointed out that everyone is different - encouraged them to look at each other and point out differences. I also asked them to help Lucia during school ie. remind her to put her ointment on, encourage her to wear her hat, drink lots of water - I wanted them to feel empowered, rather then being lectured! Bear in mind the average age was 4.5yrs! Lucia had a wonderful first year at school, and I asked if she wanted me to talk to the new Grade 1 class this year, but she said she would handle it! She is markedly smaller, skinnier, redder and has better crazy hair than her peers but educating the class/school environment certainly helped. Now we just have to educate the rest of the general public! I would love to swap ideas with you and maybe the girls could get to know each other. I hope EmmaLee is having an infection-free winter, and I look forward to hearing from you, Francesca

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