Monday, March 11, 2013

Back to blogging!

Well I gave the Facebook thing a try and it didn't work out like I expected.  Well, Facebook works just fine, but a lot of Charlie's followers are also my Facebook friends and I would post a lot of stuff to my wall, then post it again to HER page, and I felt like I was blowing everyone up with Charlie stuff! No one complained or anything, I just felt weird posting so much stuff twice.

So I'm coming back to blogging and I will likely only post sporadically on Facebook, and post any time I update the blog.

First of all, it's been almost 6 months since I've! I was going to post once a month or so...well, that didn't happen obviously.  I was sick, like really sick. Stupid ulcerative colitis!  The bleeding made me anemic, my meds made me tired. There were days I could hardly get out of bed.  Thank goodness for good nurses and public school!  I'm finally in remission after getting the right combo of meds, nightly hydrocortisone enemas, and a diet of elemental formula. Yuck.  From there I went to mostly baby food, and now I'm starting to try some "real" food. I still can't eat fruits and veggies. Bah. But I'm BETTER. I joined the Y and I'm hoping to start losing this steroid weight soon. I never thought I'd be overweight again. Ha!

Adrian is doing great in school. He makes pretty much all A's (although his grade card has some weird grading system), he's reading at a 5-6th grade level, and his behavior is such that the teacher sits him near the....spirited kids so maybe they will calm down with his example. LOL At home is a different story.  This kid is a BEAST at home. I think he spends all of his mental energy being Mr. Perfect at school, that he just melts down at home.  We will get through it though! 

Charlie is doing *excellent*. She had one illness that required 4 days in the hospital right before Christmas, but she handled like a champ, as usual.  It was the flu, type A. All of us had it and it was a doozy. Adrian missed 6 or 7 days of school and I believe that's what threw me back into a UC flare so hard.  We all slept SO much for like 2 or 3 week afterwards.  Awful, awful flu. 

Charlie is still getting 100% blended food through her tube.  She's potty-training!  That's right!  We got her an appropriate toilet seat and she's actually been using it! We still have a LONG way to go, but any diapers saved is success, in my opinion.  She's completely off the oxycodone and almost totally off the klonipin as well. She's having a little harder time coming off the klonipin, surprisingly, but we'll get there.  When we started, she was at 3 mls 3 times a day.  She's down to 0.5 mls twice a day.  Progress!  Once she's off the klonipin we'll see if she's ready to come off the keppra.

I signed Charlie up for a bowling league that starts this saturday. It should be a LOT of fun! It's just for kids with special needs, and I know for a fact she won't be the only kiddo in a wheelchair.

Oh, we got her new big girl wheelchair! Her previous one was technically a "medical stroller". Her new one is more for older kids and she has a ton of room to grow. And get fits in my trunk BETTER than the medical stroller! Yay!

Ok, so pics....lots of pics!

I had been looking all over for THE perfect bed for Charlie.  They do not pay for medical beds here in Ohio, so it was up to me to find something appropriate that doesn't cost $6000. I found a junior loft bed online that looked like the perfect height and I was about to get it and Charlie's nurse said "why don't you just cut the legs down on Adrian's bed?"  Duh. He wanted her double bed anyway and I was going to put his mattress on her bed. It didn't even occur to me that you could easily cut through metal legs that thick.  So our nurse brought her husband over the next day with his sawsall and he had the job done in 30 minutes.  I took the short rail off and put her fold down rail on, so I wouldn't have to lift her up and over each time.

Rail up:

Rail down:

Storage space!

Charlie's new DVD player...a Christmas present from her nurse!

 New potty chair! She doesn't love it, but she tolerates it. She's pretty good at going poop, but we're still working on the peeing thing. For weeks she'd hold it forEVER, pee as soon as I put her diaper or trainer back on, then LAUGH at me...stinker!

In the ball pit she got for Christmas...she doesn't quite know what to think of the balls but she loves the frog's jingly eyes!

Charlie's big kid bouncer she got for Christmas...she loves it!

I bought it's about 10 years old and out of production, but you wouldn't know it. It looks great!

Our new family members, Tesla and Cedar:

My beautiful Fairy Princess:


Charlie got to go with me to vote!

Fits in my car!

Folded down with the back off:

She's exhausted because she'd been up since 4am, but she was actually very comfortable in her new chair. We now have a new use for BabyLegs as well!

Charlie has been a Rugrat FIEND! She would watch them all day long if I let here. I found these sheets on ebay:

Her nurse found the Tommy doll and Angelica also came from ebay:

All new storage bins for her shelves! Pretty!

I used extra sheets to make her bed look nicer.  She has a lot of boxes of things under there!

They have grown!


Adriane said...

Welcome Back! PS that bouncer is SWEET!! They seriously need to make that again

anonymous hippopotamus said...

Hope everything's okay. Been following your blog for the past 5 years and it's been pretty quiet lately.

G. said...

I normally don't comment much, but I've been following your blog for years and I'm hoping you'll pop by soon!
Hope everything is ok. <3

Hannah said...

We miss you! Hope everything is okay.