Thursday, July 30, 2009

Good things to come..we hope :)

OK now Im going to jam it out with my blog music...LOL THIS song...oh man..when I would have the worse day at work and work was FINALLY over and every friday at 5pm the local radio staion would blast this one out...Id be jammin so hard to this on the way home...or to happy hour...LOL!..just a good pick me up if ya ask me! WOO HOO!

Lots of fun things to look forward to! We are taking our summer camping trip next week for a whopping 3 days! lol...kinda hard for ME of all people when I don't have my own bed...trying to "persuade" hubby to buy an Aero Bed...Our air mattress is a pancake by the Am...YUP we TENT folks really camp like the pioneers!

Madison Continues to be a big girl sitter...sitting almost all day...just in her own little happy world. We HAVE HAVE to get a grip on these jerks...they knock her down they make her sleepy..they just are a nuisance! When we feel we have come SO far in seizure control..there is always a small part of seizures that just never goes away..*sigh* One step forward and 2 steps back...

Hmmm No word of Madies bath seat...waiting for the ATG Rehab place to give us a buzz to see if its covered...Miles' Aunt however got me a great lil Ring Seat that has yet to be tetsed.,..out of shear laziness or just forgetfulness...I have yet to try it...gotta clean out the tub too! ugh. BUT BUT I think it will work very well for miss madie..what will she think of that giant tub!?
OH the GI doctor had put our name in for some help with the Pediasure shakes...well with hopes that insurance will cover them...WELL we get a call from this pharmaceutical company saying they are sending us some...covered as a "one time only" thing...Oh....One time only?? I guess Insurance will give us some...but not for a life eh? Ill take ANY I can get! I dont quite understand how that works...but UPS will bring some tomorrow or Monday...
Today I am sanding my bathroom walls...YUP...sanding....WELL when we moved in now can you visualize Dark Dark like Olive Green wallpaper with SILVER sponge painted blobs all over it?? WEll that is what we had to steam off...well we kinda did not steam good enough and glue was left behind that showed its ugly face thru the paint and made yucky spots...not sticky just rough yucky spots....SO now I have to sand the daylights out of the walls and probably prime them and re-paint....
We were in such a rush to get the house ready to move in! It was a bad job on our part that has created more work than necessary...doh.
Well anyhoo...roughly 16 days till we get our butts on a plane to Detroit...have a mentioned that Insurance wont cover the PET scan....YUP. SO if anything we can get a grip on what these jerks are...maybe get some insight on madie from the seizure god himself....
have an awesome weekend folks.
Just Read the book The Pact by Jodi Picoult...shoo wee! heavy duty stuff!!

2 comments:

Reagan Leigh said...

That's so awesome about her sitting!!! Oh how I wish we could get Reagan sitting! Just an idea, Chugani does a different type of PET scan (not the typical glucose one) and he covers the cost through his grants because he's still developing the process. Reagan didn't have this one done, but I think Jackson, who actually had the surgery, did. So maybe they could do that one instead? Just a thought.

Holli said...

I love how you changed the big photo at the top to one of her SITTING UP like a big girl!!

By the way, Austin had that extra PET scan done while we were in Detroit. A spur of the moment type thing...we had conflicting FDG PET scan results (glucose -the most common) with his physical exam. The grant PET (called FMZ PET) was done to compare with the first. This took us from Austin being a surgical candidate (as a result of the first PET)
to not being a candidate. We had conflicting data with both PETs and physical eval. I'm still scratching my head on that one. But, it was free. Not sure if he would be willing to do this one as an initial scan though since it's still in the development stages. May be something to ask about though.