Yup, class began and I've been reading a lot, doing assignments... dealing with the green guy and trying to be positive that things will work out... dealing with some bitching in the current class... dealing with dissapointment as I expected a special outing today that couldnt be because of time constraints... dealing with prospect customer... dealing with a project that I will do because i feel like it (non-class related mind you)... And tired of movies that simply suck (Bruno anyone?).
And just because I'm bored:
Bitch Slap Anyone?
Cheshire... He's odd...
HarryPotter vs Voldemort... (for old rapper Steve)
Uplifting Conan advise...
About 300...
Yup... That bored...
10-4
Sunday, July 26, 2009
Monday, July 20, 2009
Here and There
Movies watched in the past days:
HARRY POTTER & the Half-Blood Prince: A bit dissapointing, I think this movie should not have been divided in two... It left it open to too much slow action. I almost fall asleep. I know, they are just focusing on the changes in the teens but come on... Love Snape, though. And hated seeing so little of Bellatrix.
KNOWING: Surprisingly one of the best movies of late... and still, it is just entertaining... not a wow... It has too much of scenes we have seen in many other movies. That ending reminded me of the big wave coming over the lady hugging her father in front of the lighthouse... after the asteroid crash... Same thing, different element (this time, a devastating sun beam).
ICE AGE 3: Amen. Smart & funny. A MUST see! Can you believe it, much better than anything else playing right now!
This summer has been awful for movies... Lack of "punch" and creativity. Well, what can you expect... If the masses acclaim awful mindless things as Transformers 2, of course there will be a long run with Twilight... Ugh! And no Bitch Slap on sight...
Classes began last week, so that explains my lack of writing everywhere. This is Flash2:Actionscript3.0. Although it doesn't seem too difficult, it is VERY time consuming and little things becomes a nightmare. Now starts week 2, and it means that this week we get to do everything we did in Flash1, in 7 days. Have mercy!
I keep sending out resumes... Up, up, and awayyyyy!!! Nothing so far. Frustrating. And thanks to no job, we couldnt even get to file the adoption papers for the training... So that project is also stuck. No job, everything is stuck... Everything.
Summer finally arrived, and the heat is awful. the cold is terrible, and then the heat is unbearable. You get everything related to heatstroke... EVERYTHING.
Hubby is trying to get the paperwork together to start classes in August, and baby has been misbehaving with the nurses (it is becoming quite obvious she wants just two people to take care of her: mommy and daddy... period).
Update over...
10-4
HARRY POTTER & the Half-Blood Prince: A bit dissapointing, I think this movie should not have been divided in two... It left it open to too much slow action. I almost fall asleep. I know, they are just focusing on the changes in the teens but come on... Love Snape, though. And hated seeing so little of Bellatrix.
KNOWING: Surprisingly one of the best movies of late... and still, it is just entertaining... not a wow... It has too much of scenes we have seen in many other movies. That ending reminded me of the big wave coming over the lady hugging her father in front of the lighthouse... after the asteroid crash... Same thing, different element (this time, a devastating sun beam).
ICE AGE 3: Amen. Smart & funny. A MUST see! Can you believe it, much better than anything else playing right now!
This summer has been awful for movies... Lack of "punch" and creativity. Well, what can you expect... If the masses acclaim awful mindless things as Transformers 2, of course there will be a long run with Twilight... Ugh! And no Bitch Slap on sight...
Classes began last week, so that explains my lack of writing everywhere. This is Flash2:Actionscript3.0. Although it doesn't seem too difficult, it is VERY time consuming and little things becomes a nightmare. Now starts week 2, and it means that this week we get to do everything we did in Flash1, in 7 days. Have mercy!
I keep sending out resumes... Up, up, and awayyyyy!!! Nothing so far. Frustrating. And thanks to no job, we couldnt even get to file the adoption papers for the training... So that project is also stuck. No job, everything is stuck... Everything.
Summer finally arrived, and the heat is awful. the cold is terrible, and then the heat is unbearable. You get everything related to heatstroke... EVERYTHING.
Hubby is trying to get the paperwork together to start classes in August, and baby has been misbehaving with the nurses (it is becoming quite obvious she wants just two people to take care of her: mommy and daddy... period).
Update over...
10-4
Wednesday, July 08, 2009
A WISH FADES AWAY
We LOVE our homeland. Yes, many people are VERY anoying, but we LOVE our homeland. I LOVE my little island of wonders and enchantment. I want to go back, so we can have a choice in our everyday life when it comes to having fun, leisure... beaches, forests, caverns... You name it, we have it. At an easy reach. Friends and family are there, good and bad... but they are there. We are tired and jaded and we really need to see familiar faces, and maybe even get into a familiar routine but more into our own 'coqui' tunes...
This weekend we realized we can't go back. Not a realization... Well, it is something that was in the back of our heads, and we were trying to accomodate, and make true... But we knew better, we had hypothesis of how we could cope, how we could make things happen... We have many plans, A-B-C, all leading towards our surprising and triumphant return. We were proven wrong. Everything collapsed.
During the weekend i was contacted by another SMA family, it was peculiar that they were from PR, and they are still there. They have a boy that has a tracheostomy, and for whom they are literally "pasando el Niagara en bicicleta". At least they accomplished one important thing: They took the kid to Santo Domingo and did phase 1 of a stem cells treatment (they are 3 phases). That was no easy task, as each treatment's phase is $30,000, out of pocket, as no insurance covers it. And they began witnessing the fast improvements in their kid thanks to the risk they took. This is uplifting and brings much needed hope.
Now, to the bad part of the story...
PR and it's stupid political/economical/health system. They have the same insurance I did when I worked in the government agency... They must pay deductible of 20% that makes monthly expenses reach $3,5000(equipment, mandatory maintenance supplies, special food, etc). Think about it... In my not so perfect job I earned $2500... which paid all debts leaving just $50 in my bank account. Yes, I foresee our situation really well... Forcing the kid off the plan so la Reforma covers it cuts all services in half, as la Reforma is not accepted everywhere and doesn't cover EVERYTHING. Right now if we go back, Deedee would have to go with it as no insurance will allow her in the plan because of SMA being a fatal congenital illness...
Plus there are NO doctors seeing these kids. The only pulmonologist involved with them is trying not to see them so he pushes the Health department to do something... Gee, that solves everything... Health department don't care about 300 expendable kids on vents. Service providers literally don't have a heart, and if you don't pay they take everything away (thus the cases of dead kids...).
Living off the system won't help either as you would be forced to keep the kid under the very basics, reusing all stuff you are supposed to dispose of, making the food last by thinning it... you name it. And we are talking helping the kid survive... If Deedee has no tracheostomy when we go back, at the first emergency they will do one. PR don't want to handle NIV (non-invasive) even if proof of its benefits is there. And it is funny, because they dont handle well kids with tracheostomy (most end up in eternal hospital stays, getting medicines given by nurses and not seeing by the doctors that prescribes them...)... Until they die.
And SSI seems to be a distant alternative for us too. We have it here, I wonder if they would take it away because they don't want to give it in the island. Disturbing, as last year if you read Social Security notices, SSI is mandatory and of fast processing when fatal cases come into play, and SMA is listed on those exceptional cases. But you must belong to a state... And PR is a commonwealth... Funny, because I know some people get SSI. It is all selective aid.
So... until there is Medicaid, a respiratory center, doctors willing to have these kids in their offices, an ER willing to work with NIV and emphatic medical supply business... there is no going back. No salty weather... no blissful wind... no mango trees... no winter sun... Because Deedee must be there, must live and grow... Must have a true chance... And who knows, maybe even the stem cells will work a miracle if they are finally made accessible... They work with Cerebral Palsy. Hopefully they will work with SMA. And so we must stay until then...
Now what.
10-4
This weekend we realized we can't go back. Not a realization... Well, it is something that was in the back of our heads, and we were trying to accomodate, and make true... But we knew better, we had hypothesis of how we could cope, how we could make things happen... We have many plans, A-B-C, all leading towards our surprising and triumphant return. We were proven wrong. Everything collapsed.
During the weekend i was contacted by another SMA family, it was peculiar that they were from PR, and they are still there. They have a boy that has a tracheostomy, and for whom they are literally "pasando el Niagara en bicicleta". At least they accomplished one important thing: They took the kid to Santo Domingo and did phase 1 of a stem cells treatment (they are 3 phases). That was no easy task, as each treatment's phase is $30,000, out of pocket, as no insurance covers it. And they began witnessing the fast improvements in their kid thanks to the risk they took. This is uplifting and brings much needed hope.
Now, to the bad part of the story...
PR and it's stupid political/economical/health system. They have the same insurance I did when I worked in the government agency... They must pay deductible of 20% that makes monthly expenses reach $3,5000(equipment, mandatory maintenance supplies, special food, etc). Think about it... In my not so perfect job I earned $2500... which paid all debts leaving just $50 in my bank account. Yes, I foresee our situation really well... Forcing the kid off the plan so la Reforma covers it cuts all services in half, as la Reforma is not accepted everywhere and doesn't cover EVERYTHING. Right now if we go back, Deedee would have to go with it as no insurance will allow her in the plan because of SMA being a fatal congenital illness...
Plus there are NO doctors seeing these kids. The only pulmonologist involved with them is trying not to see them so he pushes the Health department to do something... Gee, that solves everything... Health department don't care about 300 expendable kids on vents. Service providers literally don't have a heart, and if you don't pay they take everything away (thus the cases of dead kids...).
Living off the system won't help either as you would be forced to keep the kid under the very basics, reusing all stuff you are supposed to dispose of, making the food last by thinning it... you name it. And we are talking helping the kid survive... If Deedee has no tracheostomy when we go back, at the first emergency they will do one. PR don't want to handle NIV (non-invasive) even if proof of its benefits is there. And it is funny, because they dont handle well kids with tracheostomy (most end up in eternal hospital stays, getting medicines given by nurses and not seeing by the doctors that prescribes them...)... Until they die.
And SSI seems to be a distant alternative for us too. We have it here, I wonder if they would take it away because they don't want to give it in the island. Disturbing, as last year if you read Social Security notices, SSI is mandatory and of fast processing when fatal cases come into play, and SMA is listed on those exceptional cases. But you must belong to a state... And PR is a commonwealth... Funny, because I know some people get SSI. It is all selective aid.
So... until there is Medicaid, a respiratory center, doctors willing to have these kids in their offices, an ER willing to work with NIV and emphatic medical supply business... there is no going back. No salty weather... no blissful wind... no mango trees... no winter sun... Because Deedee must be there, must live and grow... Must have a true chance... And who knows, maybe even the stem cells will work a miracle if they are finally made accessible... They work with Cerebral Palsy. Hopefully they will work with SMA. And so we must stay until then...
Now what.
10-4
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