much needed update

I have been away for quite a while. What’s new with Violet? So much, yet nothing at all. I have been deep in my thoughts but haven’t felt like sharing either. I write so many blogs really…in my head. They never make it to the keyboard.
I’m so grateful for all who care about our dear sweet Violet but I will be the first to admit, sometimes I just want to live my life….but tonight I am in a very content mood to share.
So Violet has FINALLY received her kid kart. (That’s her big news) For those who are unfamiliar with what a kid cart is, it’s a specialize stroller if you will. It’s sort of a cross between a stroller and a wheelchair. It has accessories for both. We will be able to feed her with her pump anywhere as we have a iv pole attachment and it has a canopy for when we walk and the sun is out. It tilts into different positions, it has a tray she can use to play with toys. It’s REALLY exciting. I will now become a minivan mama tomorrow. If you would have seen me trying to shove the base for the kid cart in the front seat of the Saturn you would realize just how excited I am!
Therapy news: Violet is drinking a few sips from a straw and testing some solids with a spoon or an oral toy we have called a zoli brush. Those are huge milestones for her since she had pretty much quit taking anything orally. She was having a few issues with her belly and her feedings earlier this week after we increased her calories. Still not sure what that was all about or if it is over but today we introduced her formula again at a lower rate and so far so good.
She is starting to sit a little better and we are working on standing with her leg braces. Some moments are better than others. We played a little game of peek – a – boo that slightly helped today.

Now that the seasons have changed I am reminded of the simple things in life that we are to be thankful for. One that strikes me every time I put Violet to sleep is the ability to pull my covers up to my neck and keep warm. Just keep warm in general. Violet has issues keeping her body temperature so at night if the blankets wiggle just enough and she catches a draft she is waking up. Not needing to be up but just cuddled and warm. While looking at her peaceful sleeping face melts my heart I wish I was in my warm bed with my cuddle buddy.

I can never say it enough but we are so blessed to have the wonderful people around us that we do. Thank you all so much.

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