Nephrology

Well, I guess I should start out with the whole ice/snow day we had yesterday. We didn't end up going out. Kendall wasn't 100% herself, and after my small mental breakdown trying to get her arms through her long johns...I decided it wasn't the best idea. Instead, we stayed in and played around the house. It was a good time.

Today we braved the cold as we went to the Nephrologist. Nephrology is a new one for us. He quickly looked her over, ordered a blood pressure machine and cuff to take her bp twice a day for a week. He ordered an echo-cardiogram (we haven't had one since she was in my belly) lots of blood work,which overlaps with her endocrine labs we have to get tomorrow anyway, and a urinalysis. Her previous kidney sonogram gave him the answers he needed, so no need to do it again. He was not at all concerned with her puffy feet. He said it was definitely not fluid. Based on all her risk factors, visiting him was a good idea. But so far we haven't gotten any bad news. We'll just pray everything else turns out OK.

Kendall's hasn't been sleeping well at all, but other than that small detail, she's back to herself. Unfortunately, Kamden came home from school today with a fever of 102.5, very rare for him, so we will be heading to the pediatrician tomorrow to see what's up. I just wish everyone would get well already!

My dad had shoulder surgery on Tuesday and is doing really well. It was apparently messed up worse than they thought. He has a long 6 month recovery ahead of him. I'm already missing his help around here :( A LOT!

The past few hours, I have been consumed with raising awareness about the Medically Dependent Children's Program. We rely very heavily on this program. It provides Kendall with basically everything! If we didn't have this there is absolutely no way we could afford all of her therapies and medications. I mean absolutely NO WAY. The legislature has a measure on the table to cut $29 million from it. I understand it's tough, and there are a lot of requests from different interest groups to dip into the "rainy day funds" but I definitely feel that this program benefits so many families and a $29 million cut would be devastating. There has to be a solution. I've asked all of my friends to write letters to the finance committee. If you would like to write an e-mail as well, please e-mail me and I will forward their names and e-mail addresses to you.

SO...ending on a lighter note, here are a few snapshots of our past 2 days :)

My sweet babies:




I thought if I made this black and white it may hide the clown-like attire my children wear when we don't have to go anywhere!




No excuses. He's completely neglected again.



Lots and lots of swinging in her room...and yes, those are baby legs on her arms. She gets hot then cold very quickly, so this was my solution!


Kendall's mad face!



Happy Face



Face most commonly seen:

Better.

Thanks for all the comments, phone calls, and e-mails I received after my last post. I'm better now. Sledding is over-rated for sure. Vodka is not.

After a wonderful lunch today with a few special mommas, I realized it's all going to be ok. My feelings are what they are. A lot of us have been dealt crappy cards, but we choose how to play them. I refuse to fold just yet.

My brain has been on overload since my first semester of grad school started (yeah, it makes me feel cool to say that!). I've forgotten what it's like to read chapter upon chapter of facts, statistics, and philosophies. Everything makes so much sense in the book, but then when I look at all of our lives and the practical applications for the families, it makes my head spin. The most recent chapter I read was about families of children with disabilities and their quality of life. Seriously. Quality of life. The divorce rates of families of children with disabilities is astounding. The poverty rate is even more shocking. It was pretty depressing...but definitely made me realize how lucky I am. Having a circle of friends in the "blog-o-sphere" has been a life saver for me. The books I've read on raising a child with issues (my most-favorite are pictured above) definitely made me realize it is ok to have a sense of humor about things. We have to, right?

I'd be lying if I said I wasn't second guessing starting school. Already through the online discussion threads (people get pretty brave behind their computers) it's made me seriously question some of the teachers in the system! But I'm sure the same could be said about general education teachers as well. I'd like to think people don't go into any type of special education for the money...most seem to be very passionate about their jobs and advocating for the families... but there's always a few people who just don't "get it." I'm just way too emotionally involved I guess.

With Kendall's initial IEP in a few weeks, I'm becoming more and more apprehensive. Not that I don't trust our district. I do. It's just such a big, scary world out there, and sending my 3 year old to school 5 days a week for 4 hours is a little unnerving.

So, I'm not really sure how I got on that tangent. Again, this blog is such a great way to hash out my emotions and move on. So that's what I'll do. I'd better get to bed. We're expecting another snow/ice day tomorrow... and I fully intend on bundling Kendall up and letting her play in the snow. Maybe not sledding...but baby steps.

Sledding. pfsh.

Nope. Not a post like the rest of the happy people today. The ones bundling their children up in their cute bright coats, hats, and scarfs. Taking cute pictures in the snow and writing blogs about how wonderful it was for their kids to see the snow and enjoy the snow day off.

The entire neighborhood is outside right now. Literally right in front of my office window, sledding down a big hill and climbing back up. My son is one of those kids. Justin's out there too with Chloe. They're running around and throwing snow balls.

Meanwhile, I'm inside with my stuffy nosed child with special needs (as well as my old dog with arthiritis and cataracts) looking through the window at all the happy people.

I haven't had a moment like this in a while. They do seem to be spacing out. But it just makes me sick to my stomach and tears well up in my eyes. Why can't Kendall be out there? Why does she have to have Cerebral Palsy? Why can't we put her on a sled in a laundry basket, pull her around the yard and snap pictures of her smiling and squealing and enjoying the snow? Why does MY daughter have to have a seizure disorder, a comprimised immune system, a sensory processing disorder? An aversion to cold things and bright things? WHY WHY WHY?

And to all the people complaining on Facebook about how ready they are for the ice to melt so their kids can get out of their hair...stop. At least your kids can walk. And talk. And play in the $#!* snow. And don't pull their hair when someone laughs or claps.

It just freaking sucks. Big time. And don't tell me to count my blessings. I do everyday. I'm just having one of those days. And as my friend Chelsea Handler once said. "When life hands you lemons, squeeze them into your vodka." Except I don't have any vodka and my car is stuck in the driveway.

Wintery Mix

After enjoying a weekend of sunshine and warm weather, we have been whisked back to reality. School was cancelled, so Kamden's home entertaining Kendall. We're all in our pj's and prepared to hunker down for about 3 days of freezing temperatures, sleet, and snow.

Texas pretty much shuts down when there's even a trace of ice on the bridges. Thankfully, Justin is in town and has set up his office from home today. He seems to think he's going to be able to get some work done...good luck.

Kendall is still fighting her cough and cold symptoms. Her croup finally resolved, but she still sounds pretty rattly. She's slowly but surely getting back into her normal routine.

We are working on Kendall's sensory processing issues. She has a very sensitive startle and will scream and yank her hair or pull off her glasses as soon as she feels uncomfortable. Up until last week, the vacuum and blender were completely off limits around her. (We seriously made smoothies in the bathroom with the door closed.) New environments,or places where young children are talking or crying, seem to be stressful for her too. We HAVE to get this under wraps for obvious reasons. I've recently learned if we talk to her about the noise or place before it catches her off guard, she is able to adapt. But it is definitely a work in progress and being addressed by all of our therapists.

Another recent concern is her puffy feet. We've always chalked it up to her not walking, but it has started looking a lot more like excess fluid. We already have a Nephrology appointment on Friday, due to some high blood pressure readings, so hopefully we can get some clear answers.

Always a guessing game around here. But today, I plan to enjoy the snow day with the same enthusiasm Kamden had when he woke up to a sea of white. Hot chocolate, Netflix, and a fire are in my near future. Life is good.

Simplify.

I'm going through a phase I think.

I just want to simplify everything. I feel like my life is so cluttered and chaotic. I just want to simplify everything.

Including my blog. So bear with me...I'm determined to figure out the blog stuff on my own. Through lots of trial and error. (obviously)

I didn't just clean my office/playroom. I completely gutted it. It felt great throwing papers away and cleaning out files.

Justin thinks I'm going through some sort of "decorating crisis". I don't think its that. I'm just in this house ALL THE TIME. I'm sick of looking at the same things. I want a brighter, cleaner, uncluttered space. So that's what I'm going to do...if it takes me the rest of the year (which is extremely likely thanks to my high maintenance dogs and children!).

Kendall's 24 hour EEG has been postponed. I was planning to cancel due to her being sick and me being exhausted, but instead the hospital called and said they were at capacity! There are lots of flu and respiratory things going on right now, so I'd just assume stay at home....and simplify some more :)