U-TURN....

First let me say, that Disney was wonderful!!! I will post pictures soon! The boys did really well!!
Collin, my 4 year old grandson, was in awe of the electrical parade...the come to life characters...the
small world ride (which of course he could sing upon coming out of the ride...and did sing the entire time we were there!) the pool...the hotel...the stores with all the merchandise (over priced!) He was excellent....Michael insisted on doing more than he should have...but naps were in order...and we had the opportunity to meet my brother for dinner which was a great time!
And then upon arriving home I found 385 E mail messages (most which could be deleted! LOL) but some that needed to be answered and many phone messages....One or two very important ones. So my first day back from this vacation (which by the way I need a vacation after this one!! LOL) was spent trying to play catch up with everything here! The grocery shopping...the visiting nurse... and returning calls...one which was from the VA.....and here comes the U-TURN!
We were given permission to go to the Wilmont Center for the bone marrow transplant consultation...which is true...HOWEVER...because of the expense of such a procedure, the VA will NOT pay for that to be done here in Rochester...It was explained that all the procedures would need to be done at the Nashville VA Hospital in order for the VA to cover the expenses...
Wilmont would be personal Health Care Insurance or out of pocket....NOW...not to be greedy or anything...but this disease is a direct result of Agent Orange...and the VA needs to be responsible for this....SO ....U-TURN....Starting next week we have 90 days to get all pretesting done (but because of his staging needs to be done ASAP)...and paperwork done (a VA social worker will be seen next week to help ME get the paper work in order) in order to get it turned into Washington to even get approval to go to Nashville for the real testing to see if he is a candidate!! OH MY who knows how long that will take!!!( A direct decision will be made by someone sitting at a desk who does not know us!)
Now, this has thrown a bit of a spin on things.....and my good husband, is somewhat deflated....he was sitting on the edge of the fence about this procedure before finding this out...but now...he has fallen off the fence....I convinced him yesterday (which was probably easier to do coming off the Disney trip with the grandson!) to at least go and talk to the social worker...to at least go and do the pretesting...to gather information....All that starts next week!
This morning.....he started his BUCKET LIST....Disney of course with Collin was at the top and he checked that one off...we will begin to cross them off one at a time as we travel down the U-TURN path now....
My thoughts are to many right now to even write....but it has become very apparent to me over this week that it is SO IMPORTANT to DO the things that you want to do...to NOT put off till tomorrow...to NOT wait for the right time to do those things (as you never know when or what U-Turn might be in your path!)

1 comment:

squarepegperson said...

Pattie, so thrilling to see that you have just been to Disney - with Michael...sending thoughts, vibes and prayers for the VA to come thru on this!!!!! as you said .this IS their responsibility - much hope for you guys...and wow! what you said.don't put off!! love it! love YOU! been thinking about you!!!