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!

Tuesday, October 9, 2012

Facebook Page!

I've decided to keep a Facebook page for Charlie instead of trying to deal with blogger all the time.  I'm still keeping her blog, but I will only be updating it one a month or so (let's face it, this is how it's  been for a while now!).  The new layout is just a pain in the butt and I'm dreading updating her blog, rather than looking forward to it.   Facebook is just a lot easier to pop on and post little updates and pictures more often.  It's also a lot easier when Charlie is having a procedure done, or she is ill, to keep everyone updated.

You can got to her page and "Like" it here.

Hope to see you on the flip side! :-D

Friday, October 5, 2012

Happy Birthday Charlie!

I have a TON of stuff to update, plus I have birthday party pictures, but I will come back to that in a day or two. In the meantime, just a Happy Birthday post and pics! 

Leaving the NICU:

One year old!

Two years old!

Three years old!

Four years old!

Five years old!

Happy Birthday sweet girl!

Wednesday, September 5, 2012

Not enough hours in the day!

Once again I'm behind on updating!  :-o

Things are going well, just busy as always.  Charlie is still doing amazing with her trach.  Zero autonomic issues and still weaning off her oxycodone.  She should be completely off of it in a week or two!

We did another salivary gland ablation last month.  She did fine with that, just the usual horrible swelling.  We're already seeing a difference...mostly that she doesn't need her vent nearly as much as she used to!

The fundraiser for her equipment is over.  Thanks to everyone who donated and/or shared her story.  We more than reached our goal by double!  Now I'm just waiting for some free time to get started on my projects!

Adrian started school a couple of weeks ago.  He's adjusting well, but he's still not thrilled about it. LOL  He thinks the work is too easy and the other kids behave badly.  Parent-teacher conferences will be interesting. I'm curious to hear if he's actually behaving well compared to other kids or if he's just a tattle-tale. LOL

Adrian and Charlie's cousin came to visit for a week.  They'd never met before and it was awesome how quickly they all took to each other.  Shya was a little timid with Charlie at first but by the time she left she was putting her hair in ponytails and suctioning her (with supervision of course!).

Charlie had her appointment with Urology.  She's not having any bad problems yet, but we're trying to stay proactive.  I learned that constipation is often a cause of urine retention.  Charlie doesn't get constipated per se, but she does tend to not go for days and days at a time, so even though her poo is soft, having it hang out in there and take up so much room could be causing her not to pee.  So our goal is to get her to poo more often!

We switched homecare companies again.  I got fed up with being told it was my fault Charlie's suction machine kept dying on us and that having it replaced was costing them too much money AND have them acts like dicks to me about it.  Charlie has a LOT of supplies delivered EVERY month (like thousands of $$$ worth) and they can't replace a $300 suction machine every 6 months?  Puh-lease!  I told my specific concerns to the new company so let's hope they are better about it!  So far, so good.  They have been nice, prompt, and thorough.


Lots and lots of pics!

Shya and Adrian, watching a movie:

Charlie loving her iPad and balloon!

Playing with the "boingy things" at the doctor's office.

The swelling after the ablation....ouch!

Charlie and Shya coming home from the park.

The mommy and baby deer that have been visiting us lately.

Charlie's new stroller that we scored for $50....Adrian still fits!

It lays back and the legs come up!

Adrian's first day of school.

Showing off her OSU spirit on game day!

Shya and Adrian.

The new trach pad I designed for Charlie.  I made 2 dozen and it motivated me to try and revamp my g-tube pad design!

 This isn't even all of them!

Thomas and Percy g-tube pad and trach pad set (still working on the new g-tube pad design!):

Our new suction bag!  It's an L.L. Bean family size organizer bag.

Everything fits great and it has tons of pockets!

Charlie and Shya.

 Free JCPenney haircut!

Tuesday, August 7, 2012

Busy, busy, busy!

I hate that I haven't been able to update...things have been a little hectic lately!  Between Adrian and Charlie yesterday, we had 4 medical appointments.  Adrian had to go to the dentist because he broke a tooth.  It turns out it's just the adult tooth pushing on the baby tooth (with a crown) that caused the crown to break off.  They didn't even have to do anything with it.  He did have one tiny filling they were able to fix without even numbing him.  He was totally freaked out about visiting the dentist but he sat still and did what he was told because he knew he was getting a new Lego set out of the deal. :-D  Charlie visited the chiropractor with her nurse while we were at the dentist.  Now that she's very stable I figured she could start seeing him again.  So she's going 3 times a week now.  Then I dropped Adrian off with Grandma while me, Charlie, and her nurse went to Children's for an ultrasound of her salivary glands and a tube change.  After the tube change the nurse that schedules the salivary gland ablations caught up to us and told us there had been a cancellation and she could squeeze Charlie in this Friday!  Normally they have to schedule a month or so out.  What a week and it's only Tuesday!

Charlie's fundraiser has gone really well.  There is still time left on it, but we surpassed our goal so I'm not promoting it as much.  If you are interested in helping, I'd love it if you put the funds towards Lily's fundraiser.  They have a much bigger goal to reach and need the money more than we do!

Here's Charlie, doing her favorite thing...watching Netflix!  She even bothered to half look at me (while keeping one eye on the screen!) when I took her picture.

Babylegs had a big sale so I got some new pairs for Charlie really cheap!  Adrian was jealous of the Hello Kitty ones so he stole a pair one day and wore them on his arms until he got too hot.

How nice they look over her AFO's!

Looking super cool while out on a walk with her nurse!

Adrian had a fun day out with 2 of his best buds. We saw the new Diary of a Wimpy Kid movie.  They got all sugared up and had a blast!

Since Adrian is going to school this year and the school menu looks less than desirable (lots of nuggets, burgers, nachos, and hot dogs) I've decided to send him with healthy lunches.  I splurged on a PlanetBox after hearing so many people rave about them.  The only downside to them is that they are pricey!  But after I got one for Adrian I realized just why they are so expensive...they are REALLY nice quality and just...awesome.  I ended up ordering one for myself as well!  I've been posting photos to my can see my whole PlanetBox album here.  I'm having a blast with these things!

I just applied for a job at a small, natural foods store.  The ladies were in there talking about sewing cloth diapers.  I was like "I SO need this job!".  If for no other reason than to get out more and talk to people who are into the same things I am. LOL

My health issues are resolving, thanks to wonders of prednisone.  I don't like that I have to take it, and I'm scared of the side effects, but I've been on it a week and I'm already seeing a noticeable difference!  I'm hoping to be back to normal sometime soon.  My body is all out of whack.  I've gained 25 lbs, I'm barely sleeping, and I have zero energy.  I'm SO tired of this!