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!


Cerebral Palsy Family Network said...

Great photos! What a delightful group of kids. If you ever need advice or information about cerebral palsy-related issues, definitely check out Cerebral Palsy Family Network. There are tons of resources for all matters CP. Great hearing about your experiences, and good luck to you, Charlie, and the rest of the family!

Beth said...

hi! do you make the trach pads and sell them by chance? I have a student would would benefit from some of these!