17 Oct 11

We had a nice weekend and managed to do some activities with the kids and at least for brief moments managed not to think of our doctor issues and Supatra's disease.  On Saturday we traveled to Galvaston Texas about an hour from Houston along the coast to spend some time on the beach.  Jason and Supatra loved it although Supatra was again sad that this time she could not go swimming and couldn't just go running around without having to worry about her catheter, tubes, and backpack full of medicine.  I feel so sorry for her and can only attempt to comfort her by telling her that soon when she starts to get better she will be able to do all these things again.  Its the same when we go to the malls and see kids skating on the ice rinks.  She wants to go skating again so badly.  On Sunday we went downtown and checked out one of the parks we heard about.  The kids played for some time in the playground and me and Supatra played catch with a small pink ball.  But again there was an area with water spouts coming from the ground where kids can go run and splash and of course Supatra could not as she is not allowed to get her catheter and dressing wet.  Pretty much everywhere we go she sees other kids doing what she used to and is immediately saddened that she can not join in.  I feel so sad for her too. 

Although me and Punny are switching sleeping duties with Supatra every other night we are both getting very tired.  It is becoming harder and harder to wake up in the morning in time to do the IV bag changes.  Everyone just wants to get home.  We want our bigger house, Supatra wants to go to school, see her friends, and be there for Halloween and Jason...well he just misses his toys and the room to run around.

I still can't believe that we are going through all this and that Supatra's recovery is not a given.  Considering its been almost six months if not longer since her symptoms progressed to the point where she is at now and it almost seems normal now while at the same time each day I look at Supatra hoping to see some positive change; a little movement at the left side of her mouth or her left eye lid moving at the same time as her right.  Its the reversing of her left facial palsy symptoms that will make Supatra so happy and would confirm to us that the antineoplastons are working.  I said to Punny the other day that I thought Supatra was walking a little better i.e. not with such a dramatically wide gait but more normal.  I don't know if it is just wishful thinking on my part or if there actually has been a change.  I just pray everyday that Supatra will be one of those few that actually recovers from this tumour, that her life will be full of joy and that she will be able to flash that cute smile of hers at me once again.

Best wishes

Jorg