I updated Philip's page ..

Friday, August 13, 2010 9:22 AM, EDT

I am sorry I did not come back and update.  To be honest we were so with the way the appt went.  I TRY very hard to be patient. I know we are not the only patient they have  BUT I think I came the closest I have come to exploding .  It was not pretty and I still find myself really upset about it.

We went to the Appt.  I had changed all my medical for that day.  And we took Cole with us .  We sat and waited for two hrs and 13 minutes.  ( yes I know the minutes..lol) they take us back and we sit even more. 

Philip is nervous and anxious.  Philip was really nervous and trying hard to be strong and hold onto the faith that this would work for him.  He so needed this appt to go well for him.

About 30 minutes later a lady from the office comes on and says "oh I am sorry" we did not get the authorization from the insurance company yet.  She said this is a very expensive consult and we can NOT see you until we get it.

I swear I saw stars.  I was shocked.  Not that the insurance did not send in their paperwork yet.  But they had us sit there for almost 3 hrs KNOWING we were checked in and done filling in our paperwork.  Why did they not come and tell us.  She said "it is a new staff and we are still learning".

I walked out and went to talk to the office staff.  As I was talking and they were acting like "oh well we are sorry" I said I have a feeling Dr...would not like how this was handled.  He walked out and said I am not and will deal with it.  He said that until they get the authorization we can not move forward.  It is a very expensive medication and procedure. 

I asked the staff to call the insurance company while I was there.  Of course you would of thought I asked him to give birth..( sorry ) He said he would call that day.  The Dr said call and get it done TODAY. Umm that was over a week ago.

So last night I check my voice mail and see that a company that handles compound and specialty medications has called .  Of course they were closed when I called back.  I wondered and worried what they wanted.  I called back this morning and spoke to a very nice lady.  She went over my benefits with the insurance company and also the coverage for the medication.  OUCH.

For one unit of the medication needed for Philip it is $1700.  He could need up to 7 vivals. 

I have had such mixed thoughts this morning.  I feel anxious and just blah.  I wish , want and need something to help Philip.  I read stories of people who have medical issues.  My heart hurts for them.  And my heart just ACHES for Philip.  I know I keep saying this ...but he is my son.

How did this happen?  I dare not ask WHY.  Just do not go there.  But when I have days like this I just think...how in the world did this happen.  I will work through my hurt and thoughts today and get back to the I can do it and we will do whatever ..I call that my RE-GROUPING .

Some of you have asked how to help.  I have been blessed with so many prayers and good thoughts for Philip.  And the prayers are the best medication for all of us.

I am going to try to work on helping fund this new medication and procedure.   Our percentage is pretty expensive.

I am going to have a online party for Philip.  I started a business a while ago and with my illness  I got lazy with promoting it.  This has kicked me in the butt.

Here is my webpage.  If you would like to help Philip and spoil yourself...make a small order.  I promise you..It is a amazing product.  Not your normal candle . Take a minute and look at the webpage.  If you know anyone who may be interested please share this with them.   Each order placed is a step in the right direction to help ...

https://dippin4divas.com/
or you can always email me
amyb1569@cfl.rr.com

I just know we have to do what so many of us do...pick ourselves up and move forward.  That is what parents of sick children do..whatever it takes.

Feel free to add this information with website where ever you think it will help. 

Also if anyone would like to host a online party..email me.  It is simple.  You host a party and earn free product.

I hope everyone has a blessed day.
Amy