Quick update before the snow hits!

Each day that comes and goes, I am so grateful for our decision to keep protein in Annabelle's diet. I can see her flourishing literally before our eyes and it's amazing. Just last night I was clipping Annabelle's finger and toenails, a chore I didn't used to have to do bc her nails didn't grow, last night, I was embarassed at how long they have gotten since LAST WEEK that I did them last! I wanted to take a picture, but I would die of embarassment. It's just not something that I consciously remember to do bc it's never been part of our routine. I love that it now is :)

Poop Talk
Her poor little GI System is still struggling so badly in this department. She has accidents daily, usually multiple times a day. She is well pee-potty trained but her stools are so large, compact and painful that they are consistently an issue. She takes mineral oil as part of her medication routine daily, and while it should help keep things 'moving along', it also is a huge mess. Between large BMs, Annabelle strains so badly that she has lots of accidents. The mineral oil makes her stool very dark and stains e.v.e.r.y.t.h.i.n.g. She's ruined so many of her clothes, most all her little girl panties, numerous pair of pants and jeans. It's very VERY frustrating for AK and I. If we use pull-ups, she won't pee in the potty and makes a mess. If we use big girl panties, she will pee in the potty but has a poopy mess. It's a catch 22. Im not exactly sure what we need to do at this point, but the constant GI / stool issues are becoming more and more frustrating for all of us. I've told every doctor about them we've met and no one will address the issue or help. I would think her diet is balanced enough at this point that these episodes of constipation wouldn't be as common as they were before, but they're not any better. I just wish I could help her :( I wish she didn't feel like she was constantly in trouble for having accidents, I wish her little hiney didn't hurt daily, I wish her stools were normal, I wish all her adorable clothes we're ruined! Hopefully soon we will get an answer.

Tube Talk
It's that time again. Her g-tube needs to be changed. Fortunately we haven't had any problems with this tube, everything has been working well without issues. But the tube must be changed every 60-90 days. We will keep the same sizing of the tube she is wearing now and also keep the same style, the Low-Profile, Mic-Key Mini G-tube. The one that glows in the dark, that is. Our nurse has agreed to change the tube for us. This is one of those times again that having a nurse full-time comes with the most incredible benefits! There are absolutely NO words that can describe how grateful I am to just be able to come home and be a mommy, and not a nurse to my little girl. Our family is so blessed to have our nurse that is skilled and loving enough to care for Annabelle and also be able to change her feeding tube so mommy doesn't constantly have to be the one seen as the mean person who always hurts her. This is the first time I will not be home for Annabelle's tube change, and while my nerves are eating me alive - I am so happy to know she is in safe hands, our nurse will do nothing to cause her any unnecessary pain and when I get home, all the bad boo-boo's will be all done!

Snow Talk
Oh my goodness, the anticipation of the upcoming inclement weather is just too much to handle!! The girls are just beyond excited to see the snow fall. Annabelle asks me daily when she can go play in the snow (despite there being zero chance of snowfall in the forecasts). This weekend I finally answered her 'soon baby! Tuesday we will have snow!'. I feel two different ways about this:
First, I want to see my little girls play in the snow, laugh, fall, giggle, slide and shiver. I want to see them experience riding sleds down hills and build a snowman. I want to stay inside and prepare the heated blankets and warm clothes with marshmellow hot chocolate when they come back from being outside. I want my daughters to laugh as sisters throwing snowballs.

Secondly, I am scared to death for how Annabelle's little body will be able to tolerate the cold. It's so cold outside. In the past, a hot summer day or a chilly winter night would send her entire body into chaos with it's inability to regulate it's temperature. We spent months after months in hospitals because her body temperature would drop and skyrocket before our eyes out of control. Days when the temperature is as cold as it's been, Annabelle stays inside. She gets buddled up and carried to the vehicle that's parked in our insulated garage and then driven to the destination. We protect Annabelle from ANY sudden changes in temperature the best we possibly can.
She's doing so much better than before though. She is a completely different little girl than she was a year or two ago. Annabelle is so very far from safe in this world, but she is blessed beyond belief for how far she's come. We find ourselves taking more and more risks with the temperatures. We spent some time last summer in the heat and she did fairly well. We've been outside a few times when it's chilly out and her body shivers like it's supossed to. What a miracle to see. Your child shivering when she's cold is so natural but a reaction she never used to have. It let's me know her system is starting to function better. I want so badly to let my baby girl play in the snow this year, but we are scared.

Prayers for beautiful snowfall are coming from our home. The girls I guarantee will be wearing their jammies inside out and I will make sure we have our pantry well stocked with cocoa for hot chocolate. Everyone that is on the east coast and projected to be affected by this storm, I pray you will stay safe. Keep warm. Snuggle up with your love ones and find the magic in the snowfalling, despite the inconveniences it may cause. Watch your children, grandchildren, neighborhood children and even grown children run and play in the snow. 

Stay safe and warm friends!