Glow Little Glow Worm!!

I was so proud of how Kenzie "performed" for her gait analysis today! This is the first of many many tests preceding her anterior/posterior spinal fusion surgery. In an effort to maintain a balance of flexibility and repair, the gait analysis will help the doctor determine the best course of surgery for Kenzie. With all the reflective balls attached to her she looked like she just may be starring in the next high tech video game! She did all of her very best "tricks." Laps back and forth with her walker, climbing into her wheelchair unassisted and turning herself around, and some crawling too.

How do you know you've made the right one?

I haven't added to this blog in awhile. I have been struggling to wrap my head around the newest challenge Kenzie has to face. It had been determined that it is time to either do something, or do nothing, about her severe scoliosis. Doing something means an anterior/posterior spinal fusion. Her entire spine is effected in an s-shaped curve.

I have known that somewhere down the road surgery would be a possibility. Knowing it was still down the road gave me the ability to deal with it. When confronted with the future... keeping my emotions in check is a constant battle. I found myself standing in the middle of Target the other day tears welling up in my eyes and had to run out of the store before I absolutely burst into seizure-like sobs.

The simple question that rolls around in my mind is this: Will this insanely invasive surgery really, REALLY improve her quality of life?

Along with that are the questions of actually surviving the surgery, will the surgery end up causing her more pain in her future. How will it feel to be maybe 5 ft. tall for the rest of your life. The surgery will end any additional growth in her trunk. (She's only 8, she has a lot of growing to do still!!) Why in the world would I voluntarily put my baby through this?

This is by far the worst part of the job of Mom. Making the decision to do it or not to do it. Like I said at the beginning I'm still trying to wrap my head around the shock, get my emotions in check and then throw myself into the research phase. Just like the 7 stages of grief, there always seems to be stages when confronted with these overwhelming decisions. Without the input of Kenzie I feel like I'm out there just hoping I'm making the right one for her.

Kenzie "teaching" little B how to talk.
Little B giving it a try.

Kenzie uses an e-talk augmentative communication device which was purchased for her 3 years ago. It gives her the ability to resolve our misunderstandings. But, mostly it allows her to be social when for years she didn't have the tools to be. Sadly, before she made it through the Medicaid wait list (thanks to all the Colorado smokers out there for helping speed up the list, due to an increase in the cigarette tax), our insurance company turned down our request for coverage of the device. On what grounds? It was considered an educational device! (telling us whether or not she has a wet diaper definitely falls into the category of education, come on!!) Of all the insane excuses I've heard through this journey, this tops the list. Through generous, generous donations from friends and family and a fun day having a bowl-a-thon, we raised the $7500.00 it cost to purchase it. This is where the idea for the name of my blog came from. Mackenzie's voice, she finally has a voice. The one very unfortunate part of the device is that she is not able to program it for herself. How, as her mom, can I program it so the voice truely represents what she wants to say? Really, how would you like it if your mom always did the talking for you? She certainly wouldn't say all the things you would like to. All those wonderful things us moms hear everyday from our beloved little ones like: you're the worst mom ever, I'm leaving and never coming back. These, all examples of things I heard this week from my master communicator, middle child, A. What would you suggest I add to her talker?

What a difference a day-off can make!

Two days ago, Kenzie decided to take the day off. We usually have a pretty smooth morning before school, we get her sister off on the bus and then she and I get a little time to spend together while she gets ready for her bus to school. I observed very clear behaviors from her that she wanted the day off. Of course, she couldn't tell me but she patted my thigh during breakfast an indication that she wanted to sit on my lap (I love this "sign", because it means mom gets cuddles!!). When we moved over to the couch to get dressed she absolutely refused to sit-up. I'm not sure how to describe it but her body was entirely limp and stiff at exactly the same time. There was no way I was going to get her dressed. Every time I mentioned school she would get really upset. I got the picture...no school today!

Once she realized I wasn't going to send her off she relaxed and had a nap for awhile. However, it was also a beautiful day, sunny, 70ish degrees outside, so I opened the back sliding door so the dog could go in and out (he's always on the wrong side of the door). In a blink, Kenzie was out the door and half a football field away to our swing set. This feat is incredible! Upon arriving at the equipment she was half-way up the ladder on her own EXTRAORDINARY!!!! and then with very little assistance from me (by now I had made it out there) she was to the top on her perch. She loves to be up high looking out - I often call her birdie because of this and I think she looks a bit bird like - long skinny legs, very observant eyes.... Thinking this was a great chance to do a little strengthening, I put her on the swing. She usually can't sit up without her bottom slumping back and nearly falling off. Not today! She sat up straight, used her legs to move herself back and forth.... When did all this happen? Have I been sleep walking through this extraordinary development, or did it happen quite literally overnight???

The rest of the day Kenzie did sleep a lot. The next morning she was ready to go back to school, as if she had presented all of her accomplishments and therefore prepared to take on some new challenges again.

And then this happened:

A in the snow on May Day!

I wonder where she's going?

Kenzie "snuck out" of the house while I was loading her chair into the car yesterday. I often wonder, if left undisturbed, where would she go? When I meet my genie in a bottle and am granted three wishes these are what they would be: 1)To live in Kenzie's brain for a day. I want to know what she thinks and HOW she thinks. Her receptive verbal skills are very good and I know all the head-hitting she does is directly linked to her inability to tell us what she wants and needs. 2) To get a hug from Kenzie. She is so tactically defensive she is unable to give a hug. We can hug her, she gets lots of hugs, but I've never received a real squeeze from her. This never occurred to me until I had A and I was given real squishy hugs from her. 3) If my husband and I die first, someone really wonderful will take care of Mackenzie (tears streaming now!). This, by far, is my very greatest wish!

Happy Birthday Grandpa Jim!!

This picture was taken in 2003. Kenzie has a few people in her life that she absolutely adores. Grandpa Jim is one of them and at the top of her list of favorites. When this picture was taken, we surprised her with his visit. She was waking up from a nap when he walked in to say hello. Her expression is priceless! I look at this picture so often as a reminder of pure joy!

Such a struggle she's been having at school. She attends a typical public school, well, I wouldn't call it entirely typical. I hear so many horrible stories from other parents in our area about their experiences and I count myself lucky to not have had such bad ones. I've always considered myself someone who truly trusts her gut instincts about things. When we went to visit what would become her new school I had a good feeling about it. Kenzie was in a school with all special needs kids for 2 years of preschool and kindergarten. When it came time to consider 1st grade I felt we needed to move her. The old school wasn't bad but I knew Kenzie would be so much happier around typical kids. I had many nights of sleeplessness about moving her, but something told me to do it, and I've been grateful ever since. Her struggles in the last few weeks have come from CSAP testing. She doesn't take them but it completely disrupts her and her classmates normal routines. She is also sent off, away from the typical classroom, where she loves the other kids, so that they can be tested without disruption. This is murder for our little girl who apparently has also developed a bit of a crush on one of her classmates. I know the next few weeks of school will be filled with disruptions, I just hope she'll also stop herself long enough to enjoy what's left before summer break. (more on that later!)

We love therapeutic riding!!!

I am a firm believer in the miracles of therapeutic riding. Kenzie was so thrilled to arrive at the farm and see the horses. When we unloaded and were waiting for Chocolate Chip to arrive she was pointing and clapping with anticipation. This was one of the moments (there are many) that she really got it...she was completely there, in the moment, and thrilled. There are so many moments that, as a mother, I am so excited for her, and she just isn't there. Whether it's because of pain, fatigue or over-stimulation, she often misses the joys in life. Thankfully, yesterday wasn't one of them!