Tag Archives: baby steps

Progress every day 

It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try not to get too high on life because I fear the fall will be much worse.

So the update aside from all things good is we have been checking on her body to see if it’s as good inside as it looks outside. Today was a new test for us. She had a stimulant test run to check out her body’s natural response because the steroid our body makes (partially adrenaline) is created when we are excited and stimulated the same as when we are sick or hurt. This will tell us if her immune system is back on track after the long-term steroid use.

Personal note: I always think I can be supermom and handle her by myself. I say how on earth can I be so spoiled to always have someone helping me. It’s just one kid! My sister manages 4 by herself many days!  I have also met all these strong moms with medically-complex children and they do it seemingly with ease. And yet, after 2 hours of trying to wrangle her, sooth her, and meet her needs, I’m ready for a nap and some wine. And that’s what reminded me that I really don’t care about how all the other supermoms do it.

Child Life provides toys
trying to find a way out of the room

The highlight of the trip was Reese’s first experience with Rover. Check out how calming this thing is for her. She loved the bubbles and the mirror combined. She was hugging it; she couldn’t seem to find how else to express her happy feelings.

This was just further proof that Cook Children’s is a great place for us and we are so grateful we have them. Plus, we saw a familiar face from the Child Life group who has helped us from the beginning and she hardly recognized Reese. But that “family” feeling of knowing people and having them know us is so comforting. It’s my favorite part as the mom who probably needs that reassurance now and again that we are making progress.

hugging Rover

[finally got a very late nap in
And today, despite the stress of worrying about her and the extra prick because the IV blew (of course it did), and having used the one diaper right BEFORE she decided to have an unexpected poop, oh and the fact that I left the urgent grocery run of milk and diapers IN the car where they sat for the two-hour dr visit, I’d say it feels like we have lots of good days ahead. So that is most definitely the kind of progress we want.

Music – even more to love

My friends know I love music. It fits me in every way — I am auditory, it lets me connect to memories and stories and the creative freedom attracts my inner artist.

But none of that tops how it feels to share my love of music with my rugrat. My love bug, who of late only wants to do her own thing, her way, has her moments of appreciating the joy of music. So capturing this moment of her attending to the instrument and the teacher for almost an entire song is remarkable compared to where she was six months ago.

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One Month and Counting…

It’s been a long haul… We try and take it a day at a time, but every once in a while we hold our breath and put these milestones out there defying superstitions to shut us down. We will keep counting silently for as long as it takes. #epilepsywarrior #onemonth #seizurefree #okwithchange #wearpurple via Instagram http://ift.tt/1CVZQ0I

A Mighty Moment for Accepting Change

I didn’t necessarily need a cry today, but I sure needed the smile that came with this great blog post. I see the world differently now with all our change, and I love this beautiful moment in time captured by a mom, a juggler, maybe an over-thinker, like me.

TheMighty-TraderJoes

TheMighty.com has just opened my eyes to a new side to our world. I am very grateful to have time to be slowly accepting and learning about what Reese’s world means for us as a family. We have been able to take the past six months and become ok with the change we are facing.

We don’t have a status or a diagnosis that labels her, yet. But we are embracing the opportunities and the knowledge that lies within the special needs community, especially for the autistic spectrum. As a non-verbal almost three-year-old, Reese is behind. No question. There IS a question about why, so until we know for sure, we are coming at the problem from all angles, as always. 🙂 Continue reading A Mighty Moment for Accepting Change

Snippets of Fall 2014

I’ve gotten too far behind on posting. It’s been dizzying how much keeps changing and how I can’t keep up with time moving forward. So consider this a drop in the bucket. A collection of moments that I have string together with a few photos.

We are in awe of our little warrior. Every day brings something new I just had to stop writing it all down. Now I have forgotten things I said I would document. But the good news is I have been there for everything and I am so deeply moved by her love for me. We have a very special bond.

It’s not just for me though. Her personality keeps breaking through and she now sees her brother in a way that is closer to the beautifully innocent admiration you see between bigs and littles. She also seems to know who is the boss. She doesn’t shy away from letting him know when he is in her way and an elbow or a grab of hair always gives us a giggle. (We will work on good behavior next year.) Right now we are just proud of our tough sassafras.

Gaining confidence

I think we are also seeing her be a little more sure of her body and her surroundings. We have been able to enjoy the park a little more this fall and she recognizes it now. She got very brave in the photos where she is holding into the rope, she is also standing on a rope. I was propping her back for a while and she was testing her legs and arms. But I could tell she had stopped using me for support and she was really pulling herself to center to hold balance (core tummy muscles) and we grabbed this shot if her being pretty proud of herself.

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Independence is another challenging topic with her. Of course we are so excited for her to be understanding some new concepts of life. We are even cautiously trying to give her those moments of exploration and research. Sometimes I feel like she’s in this soundproof glass house and we are supposed to just watch her and not interrupt her little world. But we take every opportunity we can to reinforce communication and the practices we want her to follow.

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The ride back from Austin after Thanksgiving was a funny example. D sat in the way back so I didn’t have my usual assistant shuffling things around in the back. Plus, we had too much stuff crammed in around the kids and the dog that My sweet, innocent little girl found herself right next to a big bag of pirates booty. (White cheddar rice puffs) The pic doesn’t do it justice but not only was she reaching in and serving herself handfuls of puffs, she started to put some back when she was done. No matter that a couple were slightly gummy from a test drive in her mouth. All this to say the girl will figure things out her way and we are merely here for supervision and her own protection. Otherwise, it’s best if we just stay out of her way when she gets an idea in her head.

So that’s just a taste of Reesey introducing herself to us. It’s spotty and many times it’s almost like it never happened. She reverts back to a fussy baby in my eyes and I forget she was just climbing on a stool trying to wash her hands. It’s still an emotional ride, but we will take it for sure!

I can joke about oils

via Instagram http://ift.tt/1rYTQiG

I’m guilty, but I am working on it. It’s a process not a switch you flip. But definitely no worse than some of the OTHER things we use daily.

Feel-good Week

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Wish I could say I created this beautiful graphic. Been a feel-good week of helping others with my stash of oils. Is there something you want help with? Pls don’t be afraid to ask. #lovebeingneeded #letmehelp #okwithchange #essentialoils #babysteps

Baby Steps Toward Change

The week we finally have a pattern emerging, we are facing the big upset of back to school! I tell ya, never say things should stay just like this, because they can’t. There’s too much around us changing. I’m still committing to make more of the good change happen than let other stuff get us down. And that brings me to another thought about essential oils.

These oils. I can’t fully explain it in the scientific way I would like, but they are making a difference for us. It’s about supporting our bodies and encouraging and stimulating our brains for all over health. (Edited)

We breath them, rub them, squirt them and ( I am ingesting them). It’s a slow process, but Davis is a willing participant and that has helped this mommy stay on track. Reese even seems to want her feet rubbed, which is progress in itself because her hypersensitivity always made her pull away before. I see her working the puzzle or studying the book and I know we have to keep trying to give her every but of support.

That’s why change of any kind is worth it. I’ve decided there are two ways to look at embarking on the oil experience… Start out by being prepared for when things happen and being able to have a first aid kit all made up and then see what happens, OR there is the other camp who first wants to address some kind of existing issue and be preventative and thoughtful up front about where to focus your efforts.

Every one is different so that’s why I throw it out there. Both options may work. For me, I am doing a little of both. I have identified my key recurring issues and we are addressing those with success. But, change happens daily around here so there are plenty of in-the-moment needs like a cut or rash, and I am trying to grab oils first.

I don’t think it’s realistic to say you are going to change your life even in 3 months and convert to all oils. I am all about baby steps. I still embrace the 14-year-old version of dorky me who quoted the classic “What About Bob” whenever possible.

“I can do anything if I take baby steps!” http://youtu.be/ncFCdCjBqcE

And this my friends is what OK with change is all about. In between the musings and the family memories, I hope to share how I’m taking these baby steps in the pursuit of accepting all kinds of change.

*Photo from What About Bob courtesy of  www.chickensmoothie.com