Monday, January 30, 2012


dear little leah, 

you went poop. and potty. lots and lots of times. in the POTTY. congratulations miss! it was a rough year, but near the end, you really got the hang of it and seemed to be pretty pleased with your ability to control something in your body.

potty chart #3 earned you a date ice skating with dad on january 3rd. {i tagged along to snap some pictures, but i left the skating and strolling up to the both of you.} i think dad was nearly as excited as you {okay, maybe more} and you both had such a great time. we hope to take you again soon...on real skates. 

as for potty chart #4, you're basically rocking it right now. and you plan to have all 80 boxes stuffed full with stickers by your birthday. and i'm all for it. 

you, my friend, are amazing. and i love you. to the moon and back. 


Saturday, January 14, 2012

what is acceptable and what is not

dear little leah, 
mom here. and i need to tell you what is acceptable and what is not. this time, in regards to school pictures. this?:
not acceptable. 

i know, awkward right? and you're not awkward. you're downright cute. you have eyes that glimmer and a smile that would stop anyone dead in his tracks. and you usually have great posture, so the slumping? it's gotta stop. the hair, however, is fine, thanks for keeping that under control.

now, there is a time and a place for goofy pictures. believe me, when it comes to those, i'm the queen. but school pictures is not that place. 

so thank you, for regrouping, allowing me to come along for retakes and providing your family with this instead: 

ah, much better. and very much acceptable.

yes, i understand you are in the process of flipping your head from side to side, but after 15 minutes of shenanigans, we finally caught you looking and smiling at the same time, so i'll take it. i'd much rather hang a picture of smiling-giggling-flipping-her-hair leah than i would of stone-faced-deer-in-the-headlights leah.

thanks, miss ribbons, for learning your lesson. next time i think i'll come along the first time 'round. 

love you, miss ribbons. especially the smiley you. 

Thursday, January 12, 2012


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. 
 {mmm...spaghetti. january 2011}

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, 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 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!


Sunday, January 1, 2012


dear little leah, 

well, there you go again. growing up before my eyes. i cannot believe it. i have a ctr. you're not a baby. you're not a toddler in nursery. you're not even the littlest one as a sunbeam anymore. you're in the big leagues now. a CTR!!! 

on your first day of class at church, your teachers gave you a lesson on what, exactly, ctr means: choose the right. and they gave you a little ring as a reminder. i remember getting the same little ring when i was just about your age too, miss ribbons. your teachers are wonderful, though, and they weren't sure if they should put the ring on your finger or not because they didn't want it to hurt you. and, with your busy fingers, i think they made the right choice. they they go - choosing the right

but, we came up with a solution {thanks grandma hauley!}: we put it on a chain and you get to wear your ctr ring on a necklace each sunday. 

i just love it. and i just love you. i love that you are learning and growing and doing new things every day that surprise me and amaze me and bring me to my knees in gratitude. your days are hard, that's for sure. but you get through with a smile on your face, a gleam in your eye, and now...with a new, big girl ring on your finger neck.
next thing i know you'll just grow up and turn 5 on me. 

love you, miss ribbons.