Sunday, December 9, 2012

The Phases

In the past year or so, Lucy has gone through phases that have worried me, stressed me out, and basically just got me all in a twist. As soon as something new has started I instantly think, "Oh, so she does this now, ok." And then I would assume they were things that would be forever.

There was a period of time where Lucy was chewing a lot on her hair and inevitably eating some of it. I learned the word bezoar while researching hair eating online, which basically means hair ball, and freaked out a little bit about it... but then she stopped.

For awhile she was chewing pretty avidly on her arm. I got her a bracelet call Oh Plah, which is wide and thick and for teething so she could chew on that instead of her arm...and then she eventually stopped.

Before we went on vacation this year, Lucy had been having quite a bit of trouble with eating, like she just seemed to not remember what to do some of the time. So, she wasn't eating or drinking much and I was totally freaking out that time. Many girls with Rett have trouble eating and drinking which causes them to not be able to gain weight, and this is one of my biggest fears for Lu. (Unfortunately I believe the fear manifests itself from our completely failed and horrendous attempt at nursing where I felt like Lucy might waste away because we weren't making it work, but that's neither here nor there.) We went on vacation, and she started eating and drinking ravenously again.

In October Lucy started grinding her teeth and she was really going to town with it. But, guess what...she quit.

A few months ago she started clicking her tongue and almost making kissy noises again, which were things that she used to do before her regression...but then she stopped again.

Sometimes Lucy drools a TON! Sometimes she can't sit still enough to eat and I have to hold her tight to feed her. Sometimes she blows raspberries constantly while eating. Sometimes she bites herself and us. Sometimes she really can laugh A LOT! Sometimes she is able to give kisses and hugs.

All of the things I have mentioned above come and go. The good and the bad. Lucy recently started chewing on and constantly mouthing the knuckles of her left hand. That's what one picture below is of. Another picture is of how I bandaged it up after smearing some salve on it so at least the skin can heal a little while she sleeps. I finally realized the other day, as I was agonizing over her raw knuckles, that she will probably quit doing this at some point too! She will probably start again too at some point, but I finally understand that some of the things that come with the Rett Syndrome, so far are not "forever" type things. The things like I have mentioned I mean of course; she has plenty of forever things that go along with the condition, but the things that pop up out of nowhere and get me all worked up, have a way of disappearing after awhile too.

She'll probably gnaw on her arm again at some point in her life, or eat her hair, or get raw hands, but I suppose the secret is just to care for it as best as I can while it is happening and not worry as much about whether or not it is going to be something she does FOREVER. I very often remind myself of how lucky we are that she has not yet had any seizures and she can eat on her own, as those are two major concerns with many of the girls.

So anyway, I just wanted to share my epiphany and my joy in feeling a little calmer.

PS. The third picture is just of how cute Lu is after her bath at night!

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