My Little "Seizure Salad"
Sunday, August 29, 2010
Sunday, August 22, 2010
...but I haven't wanted to!
I started this blog for a couple of reasons. First, I really needed a place to vent. Sometimes taking care of Noah is scary, overwhelming, and frustrating. I decided if I could spew words onto a computer screen I could acknowledge all of those feelings I thought I shouldn't be having and LET IT GO! And Poof! I'd be a better mom.
Secondly, I wanted a journal of life raising and taking care of Noah. I wanted a place where I could look back and read about the things that have happened. Now, when I reread past posts I think to myself "WHOA! I remember how hard THAT was and now it seems like a piece of cake compared to THIS!" (which actually happens pretty frequently).
That's Noah...always keeping me on my toes and reminding me to appreciate what is happening NOW!
BUT then this blog got another purpose. It became a window into our lives and a way for you, dear reader, to check in on our little guy.
Why have I been avoiding Bloggerville like the plague? Well, when I was in Colorado I became Trish again. My old self. The girl who has friends, hangs out, goes to the bar for a cocktail, LAUGHS more than she cries. Only this time I was, in addition to all of that, a plain ol' mom. Girlfriends flooded the house with their stories about their days, jobs, kids, husbands, and occasionally complaining about every day problems! I lapped up every second like it was the last drop of water in the desert. I wasn't treated like a sick kid's mom or pitied (out loud anyway). It was incredibly wonderful.
That being said, I haven't wanted to dive back into "Sick Kid" world.
So I'm not going to (not just yet anyway). I don't wanna and I won't.
BUT you, my friend, do deserve to know how Noah is.
So I'll tell you. Just about him. Because on this trip he too became someone different. He became just a kid. A kid who isn't hammered 6 times a week with therapists or constantly visiting a doctor for this reason or that. He became JUST Noah.
So, who is Noah? He is an absolutely adorable little boy who found his smile in Colorado.
Thursday, July 15, 2010
Wednesday, June 30, 2010
Well, it's getting closer and closer to our trip. I'm excited and nervous and becoming a bit neurotic. I've received the itinerary from my mom including our stops along the way. I immediately Map-Quested the nearest Children's Hospital to each of our overnight stays. Think we should be in good shape as long as Noah can behave once we hit Kansas and Colorado. :)
We have Nana and Poppy coming tomorrow and my parents and Mal will be here on the 4th. Noah has therapy on the 6th and we leave the 7th morning. Whew! It's going to be wicked hectic but all worth it once I'm relaxing with my little guy and Hanna looking at Round Top and Red Mountain from my parent's balcony with a nice glass of vino! Ahhhh... can't wait!
Tuesday, June 22, 2010
After reflecting about my last blog (and I am tempted to delete it but I won't because the emotions I expressed are real), I'm bothered. I hate putting negative blogs out there although honestly it's way easier to list the negative aspects of the day when I think about what my kid does NOT do than to reach deep down and find the positive.
BUT, after watching a really sad "Law and Order" about a mother who left her disabled son to seize to death by withholding meds thinking it'd be better for him to die than to suffer (I swear I saw that episode YEARS ago and it didn't quite have the impact it does today) and a glass of wine (::wink::) I decided to pull up my boot straps, thank my lucky stars and God for my beautiful little boy and the Ketogenic Diet, and really reach deep down and find something positive and progressive about Noah's development.
His refusal for food is a development! He just isn't as passive as he used to be and he doesn't quite know how to express himself or assert control over himself or his life. So he is rebelling in a really bad way! I wish he would rebel by crawling out of the room, but you take what you can get. :)
So I've snapped some new pics of the little man. Boy, he's growing like a weed. Hopefully he will start getting some control of his body so he can help out his poor mama's back! Enjoy!
I know it's been too long since an update when my friend Amy texts me to get the latest on my little man. ::smile::
I keep thinking about what to say but when I get to my keyboard I get stuck.
Noah is being Noah. Which means he's healed from the pneumonia (Thank God) and he's back to his usual self when it comes to feeds and then some. He has started retching and gagging the minute I pick him up and hold him in "feed" position or when the bottle comes near his face. It usually leads to a pre-feed throw up. Nice, huh?
Such a Bad Bad habit! He's impossible to reason with and impossible to bribe so I'm getting to my wits end and patience is dwindling.
On the PT and OT front, we keep doing the same stretches and exercises every day with no results. I'm ready for some LEAPS and BOUNDS of development (I'd even take a small hop at this point). I'm tired. I want results. I feel like I've been going full speed ahead without letting up for a while now and just a little bit of improvement would keep up the momentum. But it's just not happening. I feel deflated and worn out.
I'm very much looking forward to our trip to Colorado. I think looking out of the window at a new view may be enough to recharge to old batteries. What I wouldn't give for my little man to behave long enough for me to get a massage, haircut, teeth cleaning, pedicure,.... okay, let's be realistic, I would LOVE a worry-free shower for longer than 5 minutes. My hair is dying for some conditioner! But as of right now N-man has me watching him like a hawk (a hawk with hairy legs and split ends!). ::Smile::