documenting

dear little leah, 

i'm a document-er. my entire life, i've prided myself on journaling, scrapbooking, picture taking, letter writing, even blogging. i like to write. i like to record. and i'm usually pretty good at it. even the dumb, mundane stuff i did every day of my life from age 8 on. you can read about it all one day - i promise it's all in my journals. and then of course i record the juicy stuff. the holidays and special events and monumental occasions in my life. like when i met daddy. or when you were born. 

but i've learned as time has gone on, that sometimes i don't realize something should be documented until it's over. and then i look back for the information and it's nowhere to be found. this has happened multiple times with you, miss ribbons. we go to the doctor a lot, right? well each time they have me fill out a form asking when you did this and when you did that. well, some of these things weren't really on my mind at the time. i didn't know that i should be recording when you did certain things. sure, talking, walking, eating solid foods - we're good in that department. but there are so many other things that i just had no idea. 

even with your rett syndrome journey, sometimes i look back and think, "i really should have written this down" but at the time, i didn't know it was record worthy and so i didn't. i'm trying to be better. and this blog might be a venue for that in some ways, so be patient with me through the "boring" posts. but hopefully it will be useful information for both of us. 

today i got a phone call from one of you rett friend's moms. she had a question about eating. i thought and thought and thought and i just didn't have a clear answer in my head. and i knew i hadn't written it down. so i'm recording my answer now. because who knows what i'll remember in a year.

i love you, miss ribbons. and in reference to the email below, thanks for being such a stellar eater, even though i know it's more than difficult some days. you are a rock star. and i love you to the moon and back. 

love, 

mommy

 {mmm...spaghetti. january 2011}

C,
I'm so sorry you've been having struggles with feeding E! Ugh. I just wish the problems for all these sweet girls could STOP.

I'm trying to think back on our eating journey with Leah and to be honest it's hazy at best. I tend to try to forget the very worst, but sometimes I don't even realize things are issues until they are history and then I don't have it documented for these kinds of occasions! I'm learning. I just chatted with Ryan and we had the same thoughts, though, so here goes:

When Leah was first regressing (just about the same age as Emmy), she seemed to have more "Rett episodes" where she would kind of space out and not be "with us" (drooling included) - does that make sense? During these times, she definitely could not chew her food. And if she could chew it, she was super picky about what she would chew - we ended up cutting everything into very small portions and feeding her softer foods that she didn't have to work very hard for. Because if she had to work for it, she would just stop eating. (Not good for a sub 30 pounder!)

As Leah has gotten older, her eating has improved. Let's be honest. We have been super lucky in the eating department because there are truly very few foods Leah WON'T eat, but that also gives me clues as to when things are going awry because when she won't eat, I know it's not the food - it's that something else is wrong. In our house, we don't give 20 different options for dinner - we give one. She eats what we eat, or she doesn't eat. This might seem strange when we work every day to get her weight up, and there have been exceptions to the rule (she has a hard time with soups, she doesn't often like potatoes, etc...so in those situations, we offer her alternatives), but I feel like setting these ground rules makes for a better eater in the long run. This might not be related to your problem at all, but I've always tried to weed out different reasons as to why Leah isn't eating or why she is struggling with her eating and I think this rule has made her tolerant of lots of different foods.

We still cut up lots of her food because she has a hard time chewing on her stubs of teeth, but she will chew. We've also learned she prefers the left side of her mouth, so we often feed her on that side of her mouth and we have more success (she spits out her food less and she actually chews it rather than just letting it sit and get soggy...so gross). This could be because it's less sensitive and maybe hasn't been ground down as much as her right!? Who knows. We definitely don't.

Also as Leah has aged, she has increased the amount she drinks. For awhile, I was lucky if I could get one tiny sippy cup (like a really tiny kids cup from IKEA) of liquid in her body each day. She just wouldn't do it. Now, if she's thirsty (and she usually is), she will pound multiple cups every day - of lots of different drinks. So, because of this, we try to give her pediasure and other drinks that count. She does love her some water, though. A girl after my own heart.

My two best pieces of advice (and remember: I'm no expert NOR am I sure that what you're having trouble with is the same as what we struggled with) are:

• 1) Give her TIME to eat. Even when Rett episodes are present and perhaps common, Leah just needs time. Sometimes she's ready to go right when we sit down. Like last night I described her as an animal. She was seriously voracious with that soft taco. It was incredible. Other times (like tonight), she needs some time. Ryan and I sat there and ate our dinner trying to feed her intermittently, to no avail. After about 10-15 minutes she was ready and she ate her dinner. Not a ton, but enough. This rule is especially true in the morning. I find that we're often rushed in the morning, so we run downstairs and try to cram the food in super fast before school. This doesn't work for Leah. Sometimes she needs a good 30-60 minutes after waking up before she is ready to eat (she's so Ryan's child in this area...I need food ASAP!). 

• 2) Don't base her food intake on one day. She just might not be hungry one day! I try to look at her food intake over the course of a few days and it has always averaged out. 

She could be in a slump and I really hope it will get better. I can't say it will for sure, but it has for us...and I hope it stays this way! In the meantime you could try high caloric drinks, softer foods or cutting the food up...and definitely giving her time to get it all in. Some days I wish for Leah to have a g-tube so we could just give her what she needs when she needs it. But I definitely know that's not a cure-all and comes with a whole load of other problems. So, I am truly grateful that Leah has maintained the skills that she has and I'm working on my own patience to go at her pace and do it her way, not mine. Sounds like you're doing the same.

Good luck! And give that girl (both of them, actually) a hug from us!

...maren