Keeping records...

This is the highlight of past week.

Posted in SMA forum, here for "record"purposes. Wouldnt post in baby's blog as this is not too happy. I've been wanting to make heads roll!
Posted on Tuesday night:
"I am beyond upset. Today it turns out that I was branded as a "mom in
denial" because apparently Albuterol is the Holy Grail and the non-
invasive way of dealing with SMA is wrong... the way we do it. Here is
the story:
Pulmonologist gave order for Xopenex & Robinul four weeks ago. Yipee.
Upon giving nebulizers with Xopenex for 3 minutes to Deedee, she
desats to the 50's. This happenned twice, in front of our old nurse,
so she saw that we were not making things up. We discarted the
nebulizer, did treatments each 4 hours for 5 days and Deedee did well
and got her bug off. Fine. This I had already posted here...

So, she gets her vaccines and flu shots, and ended up three days later
with fever and vomiting. So we went to ER, stayed overnight at PICU,
they found nothing of deep interest, BUT the RT, when she went to give
the night treatment, she was going to use Xopenex and we told her what
happenned. She said that then she would use Albuterol, to see if
Deedee did well with it. Three minutes later she had to turn it off as
Deedee's heart rate skyrockted, eyes sollen and she became cold and
pale. She said she would let the doctor make a note as it really seems
that Deedee has a bad reaction to Albuterol.


The week that followed we noticed that Deedee has been with distended
stomach, much constipation, too much gas... from almost no vents now
she needed constant venting and residuals checks... A new nurse
pointed out Rubinol gave gas, so I looked up the side effects and
seems they can be more than just that. Distended stomach,
constipation, dizziness, blurry vision... well, obviously the oh-so-
great benefits of the famed ani-drool somehow lost their luster. We
tested stopping it for a week. And so the problems with being bloaded
and distended like a balloon and with constipation were gone. Heart
rates became normal and baby seems happier. So... What did we learned?
No robinul is best. For us, drool is the same anyway. What's the point
of giving meds that actually works against your child?


So... Today had a cardiologist appointment (a waste of time as in
reality he didnt even did a EKG or check anything about Deedee...
didnt even knew what SMA is... Didnt even touch Deedee! I tell you,
not even 5 minutes after a 50 minutes wait) and also with the
pulmonologist to give Deedee a Synagis shot. I asked for a D/C for the
nurses orders on albuterol/xopenex and robinul, explained why... The
pulmonologist says she spoke with the doctor from Picu and he said
Deedee did fine, since the RT said nothing and put nothing in the
notes and she could not brand Deedee as allergic if she had not seen
any reaction at all. Then the new nurse buts in asking these questions
about oxigen use, about the way we attack desats, that Deedee is in
the 50's (She desated on Friday night because of a plug, a fast going
down and then fast going up to her normal 98, but she emphasized
Deedee stayed in the 50s which was not true). She was also complaining
I wanted to suction while it was her duty to use the ambu, and then
going on with her experience with SMA kids (tpes 2 and 3 and
trached,by the way), and that she felt uncomfortable with how we were
handling her. She went on with explaining we didnt want to use Xonopex/
Robinul, the doctor explained 5 times what a bronchodilator is since I
am stupid and I dont get what it does and the nurse emphasized I didnt
know what I was doing...


In the end I got a PRN for the Xopenex, less dosage, the pulmonologist
pissed at my attitude but giving me a referral to an allergist for
finding out about any allergies Deedee may have (which I had asked in
the first visit since I know I am very allergic to many things and
Deedee is very much like me)... We get home, the nurse keeps her talk
about how SMA kids should be handled, about the right way of handling
desats... you know, she is such and expert... When the shift changed
and the old nurse arrived, new nurse began pushing buttons the same
way she did with the pulmonologist. She started her drilling on the
what ifs, what would we do it Deedee needs a bronchodilator, what
woudl we do... if anything. To make a long story short, I finally
screamed at her and after whining to my husband about this kid "not
gonna become the first one she looses", followed on me being in
"denial" when in the end for the child safety she should be trached...
and then she goes. I made her feel so uncomfortable after all, doing
all these things and procedures that we came up with! Um-hum... The
old nurse told us that in the morning, the new one had called the
agency saying she would not be back in the case (seems that at the
moment we were in the pulmonologist office). So... End of story about
the new nurse that only lasted for 1 week... Still, it does nothing to
make me feel better...


My main upsetting/ pissing off factor is simple: Why is it no one
believes it when you say your child reacts to something? Even with
witnesses! Why it is wrong to follow Non-Invasive when Deedee's lungs
are clear, her stats are 97-100, heart rate is normal ( and we keep a
hourly log for both just in case, to show the doctors). If she doesnt
NEED a medication why should she have it. Even more, if she REACTS to
a medication, why should she have it even as a PRN?!!!!! I have a
manual that seems is made of thin air as nurses dont believe in it. I
have copies of the consensus, of all of Swoboda pages, of any
information RELEVANT to SMA Type 1, and repeat to them Type 2-3-4 is
NOT Type 1! Just because Deedee seems fine doesnt mean she is not
frail. Then we get the stories of rehab and therapy and how it all
worked... Do they get that Deedee's genetic disorder actually
progresses with time and that we must work to actually keep what she
has? It is all a constant fight, a constant questioning of everything
we do... Which is everything you all do... And it is all so
exhausting, unnerving, tiresome, frustrating and angering!!!! Even
more when so-called proffessionals do the oppossite of helping!


We will try getting a hold on DrBach and Lou tomorrow during the day,
to see if they can shed some light upon us if we are so wrong, or upon
them if they dont want to hear us because we dont have medical
degrees. I want to reach DrSchroth to get her opinion and actually get
an appointment (working on that), as I see that with this
pulmonologist we aint really heading anywhere as she follows "standard
rules" for these patients... You know, what I brand as "mass
syndrome". Why things have to be so difficult? Aint them
difficult enough?"

At least the night proved that I'm not alone in this psycho-world, and that exactly is something that SMA parents go through with professionals over and over and over...

The outcome:

Wednesday: We tried to get DrBach in the morning, good timing. He asked why give meds when baby's lungs are fine. Amen. He gave a discontinue to them. In the afternoon nursing company called, as PsychoNurse had stirred the beehive over there, but their tone settled when we simple said "talk to DrBach, his order is discontinue the meds and no O2 unless she's having a respiratory arrest". End of story. Suddenly we are back to being the parents who "care so much and know so much". Um-hm... That's as long as there is a medical order backing us up. Well, apparently everyone thought we just wrote Deedee's care handbook out of divine inspiration... What is there are the facts of what to do for her. We didnt invent it (even if we do have very creative imagination). Everything we do has been following the NIV suggested by DrBach and his books and followed by hundreds of parents that belong to FSMA and believe in the NIV as it does allow for better quality of life on such critical kids (Im talking about SMA Type1 especifically... People get biased by revious experiences with types 2 and 3 especially nurses that think that SMA is the same in all...).

Thursday: Still no afternoon nurse available, but at least the company is working with us again, and communicated with DrBach, and Neverland is happy again. After giving us almost a big heart attack. I was really bad for like 4 days in a row, with a pain in my chest because of the high stress... Felt just as helpless as when we were in our hometown's hospital... I'm very grateful for the SMA forum. Their insight is definitively what keeps us going.

Friday & Saturday: Back to daily routine, I guess... New nurse on Saturday was ok, both were like having Mary Poppins at work.

Me, I have a project semi-final for Sunday night (now) and class ends next Saturday so it is all high intensive work. Plus I must load the prospective boss website so there's something besides the construction warning and I actually get paid.

Will keep venting...

10-4

OVERRATED

Same old story...

Sleep? Resting? Quietness? Nah. I'll sleep when I die. So it seems... It's been quite busy the past three weeks. I wanted a job... so I got it. But the being jack-of-all-trades is a bit... tiresome? Being tired? Overrated too.

The projectname: Boss-In-Process Version 4.0
The tasks: Webdesign/CEO Assistant/Anything that comes to mind
The good news: Love it. Creative skills FINALLY put to use. Interesting projects within projects. Looks like my degrees in business can finally get out of the vault of the lost.
The bad news: I need time to do everything I must do, and my other boss is too needy (yup, remember I have Bossy Baby 1.0.2 Revised version. And it is her command that must be obeyed first... so imagine...

I am running towards the whim of Bossy Baby and BIP. And in between, I'm trying to complete a diploma on web design. Insanity rules. Sleeping 2-3 hours... What a waste of time, huh?

Well, I hope that one thing helps the other somehow. Will be using job site as project for my next class, so I will kill 2 birds with one shot. Cannot explore being too creative now, if I want to survive. Hopefully by the second week of December my dearly beloved hubby will be available 24/7 to obey BB and so I will be free to complete everything from Project BIP. Assuming I make it...

Until then... I will survive! (Sing along in a loop so I will believe it)

And in the meanwhile... Trying to get a certain apartment in a so-so place that is at least accessible to some key places for us. It would be good to get it as it would take a big stress off us... the bad thing is actually moving. But until things are really certain, that is just a tale of what if.

10-4

Pondering, pondering

... testing 123...

Let's see...

Housing woes: Well, money is very tight to nothing. Paperwork submitted to an organization that may be the key to finding a home for winter. Potential employer helped a bit, but his search lead to a handicap non-friendly place with tight doorways, so that's a no-no. We expect a call on Wednesday from the lady of the North, hopefully it will have good news... Maybe a senator will help with this quest as she deals with puertorrican affairs. We need a place that is rug free and with wide doors to maneuver Deedee (bath and bedroom).

Webdesign diploma: Hanging in there. Another A for the vault, new course just began. This one is Screen Graphic Design. Hope it helps with the prosective endeavour at hand. It all is going fast, and I am surprise at me actually learning something (and here i thought I knew everything)...

Jobhunt: Well... Prospective something in the air... Got a prospective boss for prospective webdesign and prospective virtual assistant thinguie. Using this month as trial to see where this can lead. No money discussion on the table yet, so testing waters to see if I actually take the plunge. Dont know... main problem is everything is safe until I do something and baby decides she wants more attention than usual, which leads to me with no time to spare as I am beyond tired... But wait! Tired is the new trend! Sleep? Overrated!

Nursing woes: Ok, so our day shift nurse is cooking. But she's having many personal issues so we are trying to be supportive with her (remember, we were born under that star, so it is a circle). Day shift is good, but I am actively involved in everything so I need hubby here at evening so I can study and do prospective experiment... Cannot deal with night therapy assitance, so the bright idea of night nurse comes back to the table. We began this today... goth the owl shift for a nurse, 10pm-6am. We will test this this week... Hubby is not liking it, and me... I dont know, I just know we need a bit of help. Day and me is ok, Night and him should do the trick. Its the only way to balance ourselves out. He's studing, I am too. Let's see how it all turns out. In the end, its the Deeva who decides our fate.

Daddy's affairs: School is working well, he's learned a lot and is putting it all to good use at home. He will begin his practice at a senior nursing home place next week. Hopefully at the end of this he will get a job there, if all starts align for that.

Deeva's will: Well, so far so good. Basically her doc says she is fine, its just that she cant cough. Is that good news? LOL Well... All in all, it is. She cannot move, but she can live with that. The lack of cough is the problem because thats how pneumonia strikes and destroys. So... We are doing a good job at keeping her lungs clean. Pat on the back. Teething woes in sesion but we are handling. The news about her being able to sit a bit is AWESOME. This changes many things in therapy. We'll see what's next... Switch and toy should be here within a week, so that part begins. And her cooing is getting better, as you can see she is actually trying to communicate her own way.

Life: Hectic. We go to bed at 2am most days... to get up at 8am... Not enough rest, not enough sleep, too much stress due to the famous housing/money/job issues tagged along the baby's illness issues. Awareness must be kept 24/7, ability to react 24/7, good disposition... ok, maybe 24/7 (I try, really)? But all in all, we KNOW that we ARE blessed. Someone is REALLY watching over us, over Deedee. We know somehow the way will be put before our eyes so we follow. This time we need to be helped. I cannot handle everything, so I will follow the lead. My energy is almost in zero... need to recharge.

10-4

Help us help Deedee

... Here's how

CURRENT FUNDRAISING CAMPAIGN FOR DEEDEE

SICK

...

Ugh! Hate this weather! It is too cold, period! I went on Friday to see the doctor, and all my results are fine. Sugar a bit high (not for my normal self... actually its in 165 so that was something good)... So he made some adjustments to the prescription, minor ones as he doesnt want to screw up anything else. :P Problem: Going there and coming back. Took the bus... transfer... and so so... The wind is too much. My sinus was hit right on target. Spent the weekend feeling miserable and sick... My head is still spinning, so I'll be back to bed if miss high maintenance allows for that...

Also, today starts the Fall session of AIO, so a new class starts. Screen graphics design. Hope to have fun.

Getting ball rolling about paperworks and stuff for Deedee. Hopefully things will look up. We have to stay here in NJ, so... to make lemonade from lemons... Hubby's Avon thinguie is taking wings.

And we have a newcomer in our family, a baby stray kitty that got lucky and found us. He was half dead, but has made a big comeback. He/she was named Ash. Let's see if he copes with us...

Frustrated...

to say the least...

It is the time to re-evaluate things and make big choices in what to do, what to do... Things are not so simple... Two choice: Moving to Fl, or staying in NJ.

Fl seems like the Holy Grail right now. With the menace of winter around the corner, it glows as it is an environment that is close to PR tropical feel. We are searching the ways to do the move... What about the SSI, Medicaid, Housing... We need to know everything before leaping... And it all has to be within the next two months. We should move by November if we are to do it. Later will be too late. Big problem is daddy taking CNA courses that end in December...

Newark... Ugh! I hate the place. Pollution is very high, and now with the ambience change I can really feel my sinus! Staying here would not make us happy because of snow... which we are not prepared for... The weather is bad for baby. We need to find a cheaper place, and a job (which keeps on an ongoing fruitless task). Money is very low, we are surviving, without much help.

We don't know what else to do... Its like being trapped between the wall and a sword.

10-4

Blah days

Blah... Because they have been draining, frustrating and tiresome.

These days have been something… And not something nice and sweet, mainly days full of disgusts and annoyances. I am tired of all the coming and going, of all the opinions and of all the events. This may be the last week of trial and error for nursing service. We will cut the hours. 16 hours is too much. We find that 8 hours are the best option, during daytime working hours. We will try to see if that could really work for us. We need to regain some of our privacy somehow… The circus must end. On weekends… we will see if something may be worked out, because no one actually complied to the hours we wanted. Honestly, just the three of us can do fine for quality family time. But we are trying to keep hours real, as well as allowing for life and whatever may happen.

Within this chaos I managed to have a striking 99.5 in my August class, which deserved a strawberry-banana pancake feast from Ihop. Yay! Just began the new class, and hopefully the work I will put in there will allow me to either update my professional website or create one for baby. So, whatever the choice, it will not be time wasted.

The mage is also having fun with his CAN (Certified Nurse Assistant) courses. He may like it enough to actually finish them in December. The good: a job in January. The bad: out of the house for 9 hours straight. We don’t like it, but it’s all for a good thing. Maybe he’ll get to find a weekend job in the meanwhile. At least that would help.

Baby has some doctors dates ahead between Sept and November… We’ll see how well that turns out. So far, she’s doing great. She’s very sociable. Nothing brings her down, she’s always smiling.

la-la-la

The BITCH is BACK

(and you thought I've gone soft)

Hmmm... Back to "being pissed off" days... I feel soooo at home!

Ever since Thursday things have been... hectic? Um, kinda... Not really... Stressful? Maybe... I'm looking for the right word to describe the chaotic impulse of just wanting to squeeze necks simply to see the blood coming out of the eyeballs... Ok, so this kind of squeezing will have to be done with a torture device, but hey... A girl can have dreams!

Things to make you go UGH! Starting Thursday:
#1 The middle men thast wont communicate to the employees and client... By now it is simple: I HATE NURSES. I hate even more the lack of communication between their company and them, and then their company and us, and then just between us all. What I see is that the people this company hires are just looking for a stable job with benefits(not this company). Some state their plans up-front. Others do their business and blows it all on your face without giving a fair notice first. So we are ending up with a nurse turnover that is draining, stupid, pointless, a waste of time, a waste of energy. Why? Each time a newbie arrives is the whole process og giving the tour, giving our handbook/booklet on Deedee's care (I made it, 42 pages), explaining what we do, why we do it, and walking through the whole DAY for at least the first 3 days. In the process everything also gets caught in trust issues, especially when one sees details that you know are unforgiveable... If us parents were not around, baby wouldn't be safe, period. So after a week you can get a feel of what you have in store with the nurse... But wait! Sometimes they don't come back. Or they are just doing a part-time for a day to cover another so they don't come back. It is a parade of nurses that is suppossed to be helping us... And it is all actually stressing us and disrupting our daily routine, and baby's routine... especially because everyone do things differently and I MEAN differently. We've had to fight all the styles that they have, and having people tell you "OMG! This is all so wrong! This is not sterile! I won't do this, I wont do that... How could they EVER let you go out of a hospital without a nurse!" and treat us as if we didn't knew what we are doing... It is all BEYOND taxing. Because, all in all, the ones that complaint the most know NOTHING of SMA. We know the details, we know what must be done... And they can't even identify when baby is choking in her own saliva. I am tired of being nice and polite. I am tired of the parade at home, 16 hours of absolutely no privacy and strangers that come in to help trying to manipulate what you do and ponder on your way/style of life. If I didnt knew that we will need them in the future, I would call them off. Really. We can manage baby on our own quite nicely and much safely. The arade can lead to germs getting into the house, brought from strangers and make baby sick. We are trying to make a point of that... Hopefully the newest ones do stay for at least a month... It all has been very disconcerting and a very... rough trip (to say the least). For first shift we now have one that has handled SMA type2, so has been the best so far... We know she is looking for an office job, so I see her going at least within a month. She started out on Monday and has been here 4 days. Wow! I'm amazed! Finally one that actually comes in in time and actually do PT/OT/RT, talks to baby and handles her well. But I don't expect this to last long. The company tells her she's gotta work some hours, then changes them without giving her a notice... Ugh! One will start for the second shift next Monday as the one we had simply decided to leave the company without any further notice. We'll see how it goes with that one... She was suppossed to pass by to meet Deedee, at midday... And it is midafternoon. Coocoo one is gone and she didn't knew about it, yesterday she was surprised as she said until next week and my hubby commented the company had said she was not going to be back. Both funny and unnerving. And still no nursing service for the weekends with the hours we requested... They are suppossed to tailor time to us, but that is NOT working.

#2 The familiar FAMILY cozy gatherings that ends up in a Quixtar demo. We are so stupid as to fall for the nice sitcom-like scene that family arrives and wanna see baby... delivered a package that was for me, yay! Deliver the news that they wont make it to DeeVa's special day... And deliver the news on the lates attempt to recruit moi to the Quixtar thinguie/pyramid/so-called-business oportunity/HEADACHE! Why FAMILY don't get that I am not interested, plus it was a really bad time to bring business into the table? I think that there is a moment for everything, pushing a business like you push an enema is NOT the right way! Especially given OUR situation. We are isolated, we see that FAMILY don't reach us to see us, or see how we are doing, or visit us for the sake of visiting... No. There is always one of two things: Either you are here because a favor is at stake, or you are here for business. People: We don't call to get money or to have you doing "FAVORS" to us. What you do with kindness we do appreciate. But what we get is that no one is around because of us. Family is suppossed to be for showing care, for lifting spirits... There are many things we NEED espiritually, in matters of support in matters of simply being there. Money doesnt cover that. Business proposals up my butt doesn't cover that. What Deedee needs is presence, to feel love. Not ghosts. We are sick and tired of ghosts.

#3 Fire down below... Well, more like fire across the street at 1am... So... Loud noises, buzzing alarms couold be heard as if in the living room, 3 fire trucks, police, ER... You name it. It all ended like in the SIMS... Everyone fades away and the owners or people living there are in front of the wet smelly bulding looking dazed and confuzed, then jumping up and down saying things that a Vodu Queen would love to decode. Lovely way to distress peace and quiet... Wait... What am I saying? peace and quiet is NOT in the vocabulary by now. It is an idea, just like Shangri-La! Sleep? Who needs sleep? This is the city that won't sleep, and won't let you... Period.


The saga continued on Friday...
#4 The therapist that knows it all. LKittle Miss Know-it-all shows up questioning baby's positioning issues and bringing her expertise to the table. She has this vast experience on kids, experience with so many conditions. And she wants baby to sit. And makes a case out of it. And repeats things 3 times because dumb me cannot get what she means. Normally I would let it go, but yesterday... Oh, NOT yesterday. I told her point blank that I am not dumb, then comes the '" no need to get defensive" speech... And then I really went ballistic. The nurse ended up having the professional peptalk with her since it seems I need a degree so I am taken seriously. They met an agreement, and we will have a gathering in September with all therapists to reevaluate where are we going. But really... My solution: Woman, get busy getting to know SMA on Types 1. It's the same mistake: just because you SEE a healthy baby, it doesn't MEAN it is. Just because you WANT baby to achieve milestones it doesn't mean she CAN. Each time baby gets seated, she desats... I'm talking MAYOR desat... Plunging from 98 to 70 or below is NOT acceptable. I know what baby can do or can't. If she is distressed, uncomfortable, things can't be done. I may be speaking chinese. Yup, it's all those asian horror movies' fault. Whatever. She's added to my black list. When she reads and gets the facts on SMA, then we'll have another talk. At least the other PTs are more involved and actually listen without insulting one's knowledge. And they admit they are learning as they've had no kid like Deedee. That's the RIGHT attitude. We are ALL learning. There is NO expert. But we ALL must know the basic facts.

And ends up today...
#5 It is 7am. You think that being Saturday at least you can actually catch up on the sleep that you dindt have... WRONG!!!!! At 7:05 government workers shows up and start drilling on the sidewalk right in front of our bedroom. This is the second time... The first one was last week, on Saturday at 7am as well. The heavy drilling is unbearable. Instant get up, get as far as you can... even if you know there is no escape... Get Tylenol for the headache, get earplugs, get baby away from the room (as her's is also facing the sidewalk)... And wait for 2 hours until they go away. And don't even try whining about it! The excuse is the city has this going on all around, so you are screwed... Government permits, so shut up, go back to your house and who cares about your migraine or an ill baby? This city really REALLY suck! Each day I hate it all more and more.

So... No... These have NOT been breezy days. On top of the stress of coping with all that, there is also the stress of deadlines of assignments for the courses I'm taking. And that adds to the quotation... I'm studying because THAT IS MY WAY OF VENTING. It keeps my mind from getting rusty. It gives me entertainment and drama and suspense. It allows my social score to go up. And these aleatory people that come in and out question why in blazes I got myself into that instead of trying to take it easy and rest, or look for a job... May I scream? Thank you...

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

I needed that... even if in cyberspace no one can hear me scream... Just let's get one thing straight: I HAVE BEEN TRYING TO GET A FUCKING JOB EVER SINCE I GOT HERE! Given my situation and my luck, THAT HAS NOT HAPPENNED. I do NOT NEED to get a FUCKING EDUCATION! I already have a BSBA and an MBA to wipe my ass with. I also have experience, plenty of it THANK YOU. I WILL NOT go to work to NY. My place right now is near Deedee, being available to her. I HAVE GOALS. Since I couldn't get a job nearby I know the best bet is to work from home. I know I can make good money with webdesign and it is something I have done in my past, so now I want to UPDATE MYSELF so I know the latest to make myself MARKETABLE and go slice throuats with my creativity. Guess what? To get that diploma I need to take classes for up to a year, not a bad deal. After that when I get asked that stupid question about not having a degree I can take the diploma and make people eat it, along with the rest, and get the job in the way. I

n the meantime, I don't know how it all will flow, but I trust things will flow because we are NOT sitting around just wishing. While I have this masterplan (which was landed on me in the worst way possible, as we NEVER expected baby to have a FATAL disease that would make us uproot the island so fast... Of all places, coming to NJ? We wanted to be in Fl, and were thinking about it... Moving because you HAVE to in the blink of an eye is NOT fun, it is NOT a vacation, and is VERY taxing), my hubby also has a Master Plan too. We are in the state program, and the state is paying his getting a certificate as Nursing Assistant. That is for the next 4 months. By January he will work using that. And later on he may get the license to be an RT or certified nurse and in the long run he can be the actual caregiver for Deedee (and get paid for it). Or later on he will actually get to put his Associate's degree and almost complete BA in computers to work.

His studying keeps us in good standing on the state program, so we get the help we need for food at least. We are worried about rent and utilities... We are doing our best to be savvy and spend just the right amount. Our resources are going low... But we must follow through these plans somehow. Right now there is no other way. With the recession and the elections being so near, no job has been available for any of us. So, these plans make sense. We are NOT rotting and wishing. We are trying our best to get answers, to actually DO something about the bills.

The hounding dogs from financial institutions within the isle are unforgiving and out for blood. I supposse that the mortgage will go into the pack soon, as the fucking house won't sell either. It's no win situations... Being trapped in finacial distress is NOT fun. Especially when you have been RESPONSIBLE your whole life, and then things like this happen, something that implies life or death, and then you find no cooperation... I want to pay... Hell, I will pay! When I am actually working!

I have nothing. I lost everything. Let me at least have the moments that are left to pull myself together, put my life back in track, so I am able to fullfill all obligations! Do I have a history of being irresponsible? NO. Have I ever been without a job? NO. I've been working since 1995, nonstop, making everyone happy. And after all the hard work, everything crumbles... Talk about STRESS!

And on top of it all, you have the ongoing uncertainty of being responsible for a life that needs you more than anything or anyone else!So... We are pushed to our limits of creativity to handle everything. Smile and wave... Follow a plan... And in the way try not to loose sanity. Try to create special moments. Try to remember the important things in life are NOT tangible. Believe in the goodness of people. Believe that God moves everything and allows things with a higher purpose in mind... Breathe in, breathe out, believe... And really LIVE.

I hate when people make me become a bitch out of their own stupidity. I wish things could be smoother... Fighting all the way to get the things baby needs and that we need to live is frustrating, is demanding, is taxing... You have to be in our shoes to understand everything, the bitter-sweet reality of it all.

And so we smile, even if our hearts are breaking. But I am not to smile to stupidity from strangers. Sorry, but I am baby's advocate. And my own. You don't know us. You don't know anything about who we are, our background, our lives... And you really don't care to know. If I am to face you being a bitch, then understand this: I don't care for you either. Go away. Think hard about why would I do such a thing. And if you can't take the heat, get off my kitchen.

10-4

Update 101

Me... Coping with courses, crammed in one room for almost a week and dealing with nurses coming in and out... Not so sure this can work, but trying to not think too much about it. Finance companies hounding, as usual, very agrressively. No work, no pay, can't do much... maybe go bankrupt... Any ideas?

The Mage... Will start courses next month, job hunting like me, no success yet, handling nurses and being very Mentos about not wanting them around.

Baby... Being her diva self, happy and chatty. If she is ine, everything is fine. That's what matters.

Hopefully things will change for the best somehow... I'm praying we get a job soon, we need it desperately.

10-4

Fish story...

This is hilarious!

New endeavour

Moving ahead... Because I can I can I can (just like the little train that could...)

Started a Web-Design diploma degree on AIO, it should take a year or less to complete. I want a work at home job that I like and that pays the bills, and I think I could try this. I actually do web-design but I need to know the new ways of doing things. I have gotten myself in a bad program rot, so I hope this takes care of the issue. I am creative and I just need to be polished. If this project goes well, I may start a media design and animation bachellors degree next year after I finish the diploma. For now, baby steps so I can actually take care of baby and keep on trying to find a part time online that will help until the process ends.

In the brainstorming process about oh-so-many-things, Deedee's 1st birthday comes to mind. August 17th is a very important date, and we hope to accomplish a video-conference birthday so family, friends and DeeVa can truly reunite. LS and Groundel will have some of the spoilers... Hope things pull through. Theme? Sure! Hint, hint... Sing along: Under the Sea...

Mage is battling off the Kirby wars and also heading towards the Cow business... Will explain later on... All in all, also taking care of his little wife as she spent 4 days being really REALLY sick. Awwwwwwwwwwwwww... Can you feel the looooove toooonight....

Baby is braving her new wagon, just watched Spy Kids and is getting ideas in her head... You know, world dominion and the like...

Groundel seems heavenly blessed by his peers, who are getting him moving ahead and at least having some heavenly fun. He got in charge of being the vigilante last week for a group of kids at a summer camp, and now may be venturng in training some people on how to use computers (and not for free). Heads up! Keep the good job, buddy!

Coriolis lost to WOW, yup, we lost him... the security cord was cut and now he ain't never coming back, never, NEVERRRRRRR!!!!! How dramatic! LOL Nah, every now and then he actually use his psionic powers to make contact so everyone knows he's alive and no, no heir to the throne yet.

Lightshadow is FINALLY posting on her blog! I'm fainting, I'm fainting! That one is always scheming something, so now that she's showing signs on being online I fear... Has her cloaking device being busted? Nah, her moves are always coldly calculated...

Facebook mania has gathered the old Redskins class on my profile, it's interesting how things changed... And now the mania is spreading to some workmates... We're allll connnnnneeeeccctttteeeeeddddddd...

Ok, I'm a bit hyper, a bit musicl, a bit out there... Guess I'm happy. Geesh, I am such a nerd that actually having a class makes me this happy... Get a grip, woman!

Now I desperately need to get the whole Adobe thinguie... next project...

10-4

Bussssy beeeee

o algo

Hmph... So... Been out of the apartment to go work... the work was not what I expected, but I beared with it. This week should be the main training... So I called up to get my schedule and I was booked from Tuesday to Saturday, from 12 to 9pm. Insane, since I am suppossed to be PT and they know why...

I can't stay away for that long. Some things can slide for a day, but that's too many days without being there for DeeVa. And that cannot be compromised.

I'll call tomorrow to quit. Better to end it now, not from a hospital on the weekend.

Today, filling up/making letters for my old job, one for a position that I wanted badly but I obviously cannot comply... And the other a thank-u letter for all the help the people gave me.

Job hunting... not that I ever stopped. last night sent for business cards, so I can go in person. They want agressive? Ok, I can play that game. Bitch-mode on!

Everything else... Slow but certain. DeeVa's 1st birthday is aproaching, so fasten your seatbelts for the joyride! You cannot miss it!

10-4

Damn if you do...

damn if you... do?

I was almost crying because I couldn’t get there… then I almost cried because I did. That summarizes Saturday’s ordeal to get to the new job gathering at a restaurant that is located in Hellville… To reach it, I had to take a bus… that left me at the right spot… then I had to walk for half an hour, not knowing if I was in the right track. I asked, but apparently the longer people are in a place the less they know it… Or simply they were not feeling too helpful. So I got to the restaurant… And I sighted thinking “Amen”. Not too much coordination, very relaxed atmosphere, bloopers and all… In the morning it bothered me to see so many people who should be showing excitement or at least some interest… simply seating there with long faces, not paying attention, looking at their cellphones, and then complaining about the lunch because it was cold. WTF? It is not an obligation to give a welcome meal at a restaurant, but they did to kick off the opening of the store… One guy in my table simply played with the food leaving everything. I noticed many did just that. I guess that living off ramen and the big red Chef is not so common in people’s lives. Well, since it is common in mine I did not complain at all about the meal. In fact I took the ribs in my hands and eat them up voraciously. Sue me for that. One or two were disgusted by my lack of table manners. And guess what? I didn’t give a damn. So much appearance… Such much snobbishness from kids who are still in college and know nothing of what a real job is… Gosh!

But after the meal everyone’s spirits went up. The room was divided and a game of Jeopardy began. Of all things, Jeopardy. Apparently that is a hit with almost everyone as soon it was evident they were enjoying… And how aggressive could they be just because of the “competitive vein”. Gimme a break… I got a big headache, I definitively dislikes those games… So the rest of the reunion was not my favorite deal… As it all closed, I ended up with heavy migraine, topped by the long half hour walk to get the bus, then the long wait for the bus who arrived an hour later. I arrived in time to take a bath and go straight to bed… I was drained, tired, beaten… And completely sad about it all.

Today was the meeting at ground-0, the store’s site. Checking the bus schedule shed some light into my morning… The bus began to pass by at 9:30… and I had to be at the store at 9:00am. So… Had to take the other bus, the one with a 15 minute walk included… a walk through a not so friendly neighborhood. So early in a Sunday morning you get to see a hooker walking by, drunk people sleeping it off in the floor… Lovely. Took the bus, arrived at the right point for another half an hour walk. And there it is, the store… Just getting there drained me. I was not feeling like smiling and I was definitively hot. Whatever. Training/orientation begins… Not too impressed by things… Quite the opposite of the younglings that kept the ohhs and ahhhs…

The day went by… I got migraine from not eating at the right time (gee, really?), but the afternoon was somewhat bearable… Until we got the department gathering so we would know our closest peers. How it all ends up, with my luck? The techie guys, and me. Again. I hope a girl arrives in the week to be with us, because if not I’m gonna scream. And while everyone presented themselves, I finally discover my new job as… counter girl, for my department. I’ll basically be the front face/phone answering/client-friendly face who also perform as secretary to everyone within the department. Yup, I should have a leash ready so everyone keeps things in its right place, and fill out the reports on time. A deep job for someone like me. Oh, but I should not worry, the boys said they would teach me about everything… so I shouldn’t feel overwhelmed. I am so grateful! …

As the supervisor talked to the techies about certain experiences he never looked at me… why should he? I certainly know nothing… Any similarities with old co-workers/supervisors is just a simple coincidence. A server… What’s that? I guess not the same as a waiter… So… The only girl is the client link… I don’t know what to think about it. I felt offended. The demeanor of my peers made me feel really bad, but what do they know? They haven’t read my resume… The hurtful thing is my supervisor had… And I pointed out that same scenario in the interview, that through the years what I disliked most was that whenever I got hired I had to prove to the guys that I knew what I was doing. It is ok, at first… but as years pass by and you are not so young… and that attitude doesn’t change… it becomes completely distressing, unnerving, tiresome… And I was supposed to learn so much… Right.

Part time with the warning of getting a hold on you completely for the Holidays… I m not sold. I will give it a shot to prove myself I at least tried… But it is a recipe for disaster. My mind and heart are with baby and I simply don’t feel right leaving her for more than 8 hours… I know that the now is precious, she may be gone anytime. I also know we need to get bacon to eat. I also know that the stupid part-time will also cut welfare and we’ll get even less than what we are getting if they don’t give me at least 35 hours a week… Which means staying all the time at the job site, getting in and out wasting two hours and half of my life per day just in commuting… to spend a bit of time with baby… at night… Not getting real benefits, trying to smile all the time and be nice and polite for more than 7 hours… What when snow comes in? And my shifts are until closing, then taking the bus. Somehow… I don’t think it is worth it. I will not be taking much part in baby’s life… which is completely wrong at this point.

I am going insane with this… But we need the money… And no other job appears… I have 11 yrs of IT experience and an MBA to wipe my ass with… All to be a counter girl. That’s the best I could do in this place… Lovely. Makes you put things in perspective… I had a not so bad job after all, earned a not so bad salary… Had no so bad things… But the medical care that baby needs cannot be done in the island… I hate this! I really hate this! But I will do as someone said… Just be Clark Kent. Pretend to be Clark Kent. The time for Superman will come. It always does. And I definitively hope that is true. I hope that September surprises me with good interviews for good interesting challenging positions. So I can do my dream career change… or at least put my degree to use… So I can spend more quality time with my greatest love… besides the mage, of course. I keep belief… It is just so frustrating, and so hard…

10-4

The GOOD & The BAD...

and Then SOME

Heat wave, melting us. Taking advantage of baby's magic spells. Surviving. Planning some future deeds for funraising for baby. I've notice most parents do a fundraise yearly to take care of the expenses. So, pondering, planning, scheduling... Hopefully I'll get some help from within the island. Will try the online way when all takes shape.

The ogre is going insane with some issues. I wish I could give some support, but nothing I say seems right. I hope it all turns for the best. I wish him happiness. He needs to develop patience and belief. When he least expects it, things will happen. But he needs to keep the faith. Somehow. Somewhere. Someway.

The mage keeps on with the job-hunting mandatory courses. I hope something comes out from it. He's been helping a lot taking care of baby. He is missed whenever he's not around.

Me, still job-hunting, although I have the Geek thinguie starting at end of month. Not happy about it, so I wont stand still. Something good MUST be out there.

I go insane because of debt and the endless calls. And because of the calls that people don't make. And because of so many things! But I keep the focus: We are here because of baby's needs NOT because we want to, not because it is a pleasure vacation, not because we like it. So many things we hate! But number one is providing baby with what she NEEDS. In the way we must meet a happy medium for everything.

I hope the house sells this month. That has me beyond stressed. I hope my clothing arrive anytime soon. Hello! I have almost nothing to wear! I hope my car doesnt get damage from not moving... it worries me that the tires may rot. The battery problem is not hard to fix, so I would expect some common sense. The wires to charge it from another car are in the back.

I talked with Grace and Carmen from ARV last week. That was refreshing. And encouraging. They keep pictures of Deedee in their cubicles, updated ones. The people of Aguadilla always have been very dear and very special to me. Last week I also found El Calvo(amen), so i got to vent some steam... Not having someone reasonable to talk to drives me insane. Yup, social points raise a bit... Now I need to find Coriolis, whom I've been trying to reach for almost 2 months.

Kitties misbehaving. Now Michita gets a kick from getting into the room behind Auntie's window and meouwing at 4am... LOL I love my cats!

10-4

Twinkling Razzle-Dazzle

...

Days are going by slowly. The chilly madness is suddenly replaced by hot days that are unnerving. Some help may come in disguise as we still quarrel for the neverending task of finding THE job… In the meantime, being minions will do… Baby is well, hubby is well. All alive and kicking, I think…

I’m increasingly sad. I dislike the current situation of nowhere to run to nowhere to hide, but much to face and conquer. Played the fight so well, but now the plateau denominated “waiting game”is driving me insane. Looking for something to keep the sanity check, finding solace in beloved Lady of Sorrows and journaling, but still… The uncertainty of it all is beyond frustrating. The living one day at a time means no real control lay in your hands, so you must outwit whatever is thrown your way… Oh, the thrill of the uncertain! For a while it’s nice, but it has its price…

The appreciation of what you have changes. The deliverance from the superfluous to the important is both intoxicating and chaotic. Each morning we face a sunrise hoping a miracle lives on. Each afternoon we guard the miracle and marvel in its radiance, in its defiant truth… Each sunset brings along the belief that must keep burning within our zenith… A belief that struggles against the enemies of despair, of destiny… It is a paradox to look into life and know the imminence of death, up close and personal! It is important the here and now, the making of… the journey. It all is in our face, it all brings the greatest of beauties, and the most terrible of pains. This is our daily truth, our daily conflict, our daily despair, our daily hope… To acknowledge a heart full of lovely sunrises and sunsets, to acknowledge a heart entwined in thorns.

I live the greatness of love. I live the greatest horror. Day by day the rose let go of a petal… One by one a lovely road towards oblivion takes shape… lovely shape, lovely perfumed shape wrapped by mystery and shadows. Nothing else to do, but to trust and go on… to believe and live for real. Fear is the greatest enemy of everything and everyone… Fear destroys hope, destroy possibilities, destroys what can be and has not been yet… It is fear we must battle so we can smile through it all, so the miracle keeps its beauty, so the meaning of life keeps on revealing itself to us. And it is not easy at all… Wondering why is a waste of time. Scheming the end is pointless. The goal must be ongoing, else everything could fall…

When there is too much time to actually think, you realize it is better not to… Because thinking will drive you mad. Sometimes it is better to keep doing… to keep swimming… So strength and will keep on being pillars in your heart. So the journey blinds you with its razzle-dazzle… So an alternate reality can be cast at will.

10-4

Update

...

Passed drug test so they'll call in the middle of June or something to take orientation thinguie... Should be working in July. Yipee, or something. Grateful about it, don't get me wrong, I just wished I could find something art related, not techie... Eeeeck! Good point: I'll get updated in matters of operating systems and software... which is good. I was in a rot for a while.

Finance places driving me crazy with their neverending calls! Geesh! I explain the same crap almost DAILY... Customer care, my ass! One out of three is trying to work things out... The other two... Not polite. They even mentioned using the fundraising money to pay them. Ok... Where the "it's not my money, and it is for medical baby emergencies" is completely ignored... (Sight) And I'm sorry, but we cannot touch Deedee's money because we KNOW she will need MORE than that!

No clothing yet... (Sight) At least I know I'll have to wear an uniform, which is GREAT! I'm all for uniforms. It makes things easier. Hubby left some laundry at the laundry place by mistake, so I've got even less clothing... I hop that the right boxes arrive soon. Three were delivered last Sunday, all of them by chance had Deedee's clothing and stuff. Nothing for me. Positive side: Deedee has enough until her birthday. Con: I am starting a Ferengi wife clothing line...

House, still an afterthought. The realtor has not moved much, the bank made my life miserable to send me the stupid cancelation balance, and the potential buyer may have changed his mind after a month and a half has passed... And I need to sell in less than a month, May is not paid. We all know what that can mean...

Groundel had an operation yesterday. The doctor cut some bone, did something to his Achiles heel and some insitions in his leg... Night of the Living Dead, take six? (Sight) Talked with him before midnight, he seemed to be bearing with it all... Send good vibes his way, please!

Baby is fine so far, hubby is fine so far, and the dark cold days have been replaced by sunny cold days... Wheeeeeeeeeeeeeeee...

10-4

At week's middleground...

Neverland still floats... just like sh...

FAMILY:
Baby doing just fine, with the mask and without it. Hubby behaving pleasantly and limiting his playing time...amen... plus looking for a job. Auntie alive and kicking, mommy as well. Maybe the Texas crew will be here next weekend, if it all goes as they planned. No news from the Olivieris, no new from the Florida Clan.

FRIENDS:
Groundel happily receiving the 5 star treatment at the hospital, as usual. He should ponder getting some shares in there... or getting a job in there... Who knows, since by now they know him so well... :P It all looked very bad the first days, but slightly it all is heading towards same infection he always gets because his half-foot is not sealed... Hopefully nothing new-er. Maybe he'll be out by Father's Day...

LightShadow getting around, doing the amazing things she does with the little time she has... Wow! Talk about magical abilities! (Or the abilities of the undead...

Coriolis still out there in the Twilight Zone... Hello? Echo!!!!!

Just found out about a very old friend that was lost in translation... but that is still alive and doing a very good job at surviving! :P Zolanch, glad to meet you again, and again, and again... It is funny that whenever a major change occurs, she appears. Imagine this: She was even there the day I was born! And she was not even born yet! Talk about synchronicity!

Recently added Lynnette's blog to the little witch's and mine... I always forgot to do so, but hey, FINALLY... And she is someone who always write something interesting! Alas!

ME:
Finally ventured out yesterday, took the bus on my own and didnt get lost. Finally got an interview... High odds that I'll be hired in a very ironic place (LS advises may be called upon)... Got chocolate cake and chocolate ice-cream for Mother's Day, a crystal base with magic beads and a baby going berserk with the diapers. What else could I ask for?

Actually, I could ask for a little more intervention from friendly neighbors... Yup, some interaction would be good... Oh, well. Just got 3 fine art posters that I ordered for the living room: Romeo&Juliet (as the one in my wedding invitations), The Accolade (lady knighting a squire) and The Crystall Ball (witchy fortune lady staring into crystal ball). These are classics paintings, should give some character to the place. Hopefully Lulu will be able to send me my posters from my ex-office, would love Vincent in the room's door... Yup, still a poster person...

Got some poster-papers so I will do some Ariel-Tinkerbell art for Deedee's room. Finally! Yup, it took long to simply find them! That should provide some entertainment for the next 2 days...

Also, got a scrapbooking program. Simple but it will help. La vena me la pide.

I just got very disturbed by Sora singing with Donald Duck and Ariel... I have seen everything now!

10-4

FREE at Last

I may have some strange powers, or something... but as I wrote the latest post, my grandfather died. So, finally he is at peace with his loved ones and without any hurt or pain... Free at last. Just as it was done with his wife, he wont be placed in a funeral place, but cremated today so he'll be taken to the grave in a small urn... No days for people to visit him and mourn him, no days to reminisce on his memory and life... I have nothing against cremation BUT I am completely against doing just that. I think a corpse should be placed in a chapel so family and friends can say goodbye, so prayers can be done properly... then cremation, then burying... ANd then the mandatory rosaries. That choice of simply paying for a mass dedicated to the memory of people is stupid. To me it has no value. To me, praying the rosary while guarding the corpse and afterwards is the real way of bringing light to the spirit. Paying for a mass has no real emotional value. That is my humble opinion, which no one has asked for, I know.

So... I am REALLY worried about Auntie now. I know she is alone over there in the island, and no one else really cares about it. To each with their contience...

Still no news about Steve. I am really worried about him. I hope that someone, ANYONE, is taking care of at least bringing some snacks to him... His " i dont want to bother anyone" themesong places him in the hospital... I know...

If I had the money to do so, I would solve everything. But I dont, so I cant... My thoughts and prayers are with all of those who need me.

10-4

AND NOW, A DEFINITE UPDATE

... amen...

FAMILY
In Puerto Rico noone can hear you scream… That should be the slogan for them. Ugh! Sheez! Why? Simple:

Grandfather is almost dying at that home in which he was placed. Not taken good care of. Not living just being barely kept alive. Not recognizing auntie, not opening much his eyes, and doctors are not optimistic about his future… A death foretold. But sincerely, THAT would be the best thing for him. Being forgotten in a home with onle a mandatory visit a month, a quick one, is not worth living. He needs to be with his wife and with his mother and father… Enough is enough.

Auntie: Noone visits her… Noone but LightShadow and Groundel when they go to check the cats, and once a month when my mother shows up to take her to the grocery store. Now she’s missing us. She thinks we’ll be over there soon… I wish. What Deedee needs is not in PR… It is the only thing that truly saddens me, not being able to be there for her as she deserves. Many times I wonder what to do, as I KNOW she needs me. We fight all the time, but we love each other the same way…

Uncle: Undergo an operation which was successful and is recovering in SJ. As usual, I know now but noone said anything about the operation, etc… Communication… None… Nothing changes…

Mother: Not so well, as she and her hubby are STILL with the skin illness, plus diabetic trademarks. But, since one tells them what to do and they don’t do it…

Florida Uncle: Has called various times to check up on Deedee’s status. My cousin has called him also trying to find out wherabouts. That’s surprising.

Everyone else: Haven’t heard much of anyone else. Maybe people got sucked into a black hole or something


FRIENDS
Groundel is in the hospital again. Well, he was off it for 4 months… So I guess it was due. Not taking his insulin and not telling people what he should… What to do, what to do… He’s at Perea, Room 308. Please call/visit him, he needs all the support he can get. And it drives me psycho not being able to be there….

LightShadow: Working/working/working/caring for her mom/ caring for everyone else/ working…

Coriolis: Missing in action. Don’t know what his problem is, and since he won’t tell or call back, I guess I’ll never know. I don’t get such behaviour from someone who used to call me “ best friend”… Guess that’s what happens when you are forced to live in someone’s house for 3 months…


CATS
Being kept plump and happy by auntie. The report from Groundel and LS is that they are ok. I wonder if they miss me… My Kyonene… My Isis, Crow, Set, Kali, Roxy, Michita, Cyric… What to do, what to do…

BABY
Happy, using nasal mask 20 hours a day, mask-free 4-5 hours a day, stable, plump and amazing us day by day

HUBBY
Taking care of baby, looking for a job, filling out forms for government aids, making things happen. I’m proud of my mage, he’s been growing up, coping with things, coping with demanding me. Always keeping the focus of us, of his beloved family, of what is best for Deedee. Circunstance has made a man out of him.

ME
Sometimes hopeful and happy, many times feeling isolated and lonely. Being confined to 4 walls with noone to talk to but baby and hubby… The help is getting here, but it is not the same… Psycho about getting a job, psycho about baby’s care. Hating the weather changes. Hating some people’s cold shoulder. But what doesn’t kill you makes you stronger, and this is not a picnic… There is purpose and goal, so the way will reveal itself in time. I wonder about the decisions, about if this was the best choice… But no question about one thing: Baby is better because of the care in here. True friends have been revealed, and hope keeps fueling my will.

Any questions?

Is this for real?

I just erased a long post... So I'll be back later with an update... Argh!!!

Burocratic Shit

...

I am so damn tired of all this shit about government agencies and their not doing what they should for the public that really needs it! I'm beyond upset with the latest news about Catastrophic Funds and what it said it would do and now seems to be trying to back away from doing! Everythig depends on their helping us jump to the other side... we trusted their word... so we get this... a re-submitting of a case to see if they can grant a yes... Grant? Yup... Grant... I pay taxes, right? I have busted my ass working for more than 13 years without help of anyone but my two hands... Because of that, and the fact that I studied and, OMG, I didnt have children as a rat would, I am sentenced to have no help at all from the government. I need to be jobless, mindless, and full of shit so I can get government aids. Thats this island's justice.

I am pissed. I am tired. I am unnerved. I am stressed. I am in a very bad mood. And I feel every effort no matter how fruitful has been futile... All because the friggin system that we have only do something for the corrupt, the political bitches and the "mantenios". Hope... So difficult to get a grasp of that small almost intangible thing... But I do have hope. And I hope it doesnt get killed next Wednesday.

Baby can die any minute, and the urgency about it is so baffling! It is true that the only belief we can have is in God. He is the only one that doesnt lie, ever. I know He will show us the way, somehow. I just wish that for once it didnt have to be the hard way... Someday the purpose will be revealed... but right now it is very taxing and draining... A break? Please? Is that so much to ask?

10-4

WINDS OF CHANGE

...

At hometown trying to sort things out, preparing luggage just in case, tying the loose ends... Status on everything? Here goes:

HOME: A big mess. Was trying to sell it asap, but seems it will have to wait a bit, just a bit... If I cant sell by end of March I will have to give up the house in April, period. Will not be in the island by then, anyway...

FAMILY: Auntie thinks just praying fix things, and I have nothing against prayers BUT they also need to be followed by action. God send the fishing but one must dig the bait. Some are helping out in their own special way. Let's see what comes out of everything...

FRIENDS: Strangers have been friendlier than friends, and this is not high school... That has been the big irony of it all... But all in all... We are grateful for the small details that people have done for us. We are grateful for LightShadow's diligence in fundraising for the baby, we we grateful for Coriolis's granting shelter under this big snowfall, we are grateful for Groundel's never-ending concern and love for Deedee, we are grateful for the people who dont know us and have move things so we can get Deedee to the US mainland, we are grateful for prayers from children and elders. And we are grateful to God that he has granted a longer stay for DeeVa in this world.

BABY: At the hospital, intensive care, intubated, waiting for the date of the big flight. We have an air ambulance (AMEN!) and will soon be taking her to the best p[lace to treat her disease. All this time she's been a trooper, showing love and will for living.

DADDY: Keeps on being his random crazy self, taking care of baby and of his mad witch. He has been a constant caregiver, completely giving himself to the cause... A constant support, a constant light in the darkness. He's never failed to keep the hope, the belief, the dream... Has been punched by reality too many times, but stills gives a smile and moves forward no matter what.

MOMMY: Keeps on being as bitchy as ever, pushing things so they get done. Keeping sanity in the midst of chaos. Keeping belief and faith, while fighting every odd. Very edgy, very stressed... But nothing will stop what needs to be done.

We are both sad that some people don't really understand what we've done, why we are doing everything... We are doing this because Deirdre Valeria is there. You just have to be with her to KNOW she is there. She reacts to everything, all the time. She is alive and aware, highly intelligent, and with deep desire to live. She deserves the chance. We are the only ones who can grant that wish.

Some people think it has been insane to leave everything, that our world has collapsed to the worst... Well, this is an eye openner for you: We hated our lived before Deedee was born. Nothing substancial ever happenned, nothing mattered. She brought us a reason to live on, to believe in goodness. Thanks to her we have seen the good that still exists in this crappy island, the people who don't turn away but give a helping hand without even knowing you. I will loose a house? Not that we liked it anyway... We have a home wherever we go. What about our jobs? We were angry at our jobs anyway. Now we have a reason to get out of our comfort zones and try something else. So life has been stirred upside down,... So what? We stand together no matter what. Deedee has given us many lessons in what is TRULY important in life. She has shown us how to REALLY LIVE. And that is... Do your very best to enjoy every little miracle around you, your family, your friends, your pets... a sunset, the rain... Every little thing matters, has a purpose, and can bring you happiness. Having everything means being able to say that you are at peace with yourself, that you reach out to others to help them grow, being able to smile because your heart dictates so.

For many, the Mage and the Witch have nothing... But we have everything. We have true love in our lives, and we have around us people who truly care for us. And most important of all, God smiles when he looks at us. I know it.

So, we are getting ready for a big change. We will leave the isle soon, seeking the best medical care for our DeeVa, so she has a chance for living life to the fullest. We love her, always have and always will. Whatever happens will be guided by God, as everything is in His hands. There is a big purpose for everything that has happenned... For us, for Groundel, for LightShadow, for Coriolis... God's chess game goes on. In the end... Everything will make sense, everything will awe us... for the best.

10-4

Looking things up

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Checking the cities of Madison and Newark so we get a feel of what is to come. Madison "Mad City" is very interesting. Low unemployment, highest people with doctoral degrees in the country, economic growth projects... Beautiful place, very liberal and varied... And right now very covered with snow. Temperature ranges from -XYZ to 87 in July... 87 is very hot... OMG!
Newark... Hectic. But has many aids for low income people. University Hospital has many financial aids. It was funny, on all 3 top doctors list DrBach is always there... And they havent heard of him in here... Right!

Traveling has become more of a burden because of the road accidents that keep being more frequent. Yesterday we managed to go to the Salvation Army so we could get winter coats just in case, and upon exit one of the tires had a big nail on it... We went to the auto service place, and they wanted to sell us a new tire... So basically we changed the tire for a spare and will see tomorrow at a tire place what can be done about it... It was a new tire! So this really bothers...

On Friday we visited the medical plan and then cathastrophic funds... There is a big difference between phone and in-person. Perhaps progress was achieved... We'll see.

Today... to see the Deeva, and to try sleeping at night... Tired, and drained.

10-4

Mad

... at all times, 24/7... And proud of it...

I don't know why I bother trying to gather as much information as I can to give to the right people... or at least to the people that must have the knowledge... I have been wasting my time. When I think I am doing some progress, it is the oppossite. What is the use of trying something when you don't really want it to work? That's basically what I should be asking the doctors... I feel cheated and offended. Trying things out to prove us wrong, just what is that.. People give swift punches with just words. We have been so naive as to believe that getting information from the experts would ease the whole picture... How wrong! We didn't count on a system that works layers within layers, where the patient is a number translated into an institution's desire... How wrong of us to try swimming against the stream... for the sake of belief in progress... Something not so new cannot be exposed simply because it is different. I forgot, doing things differently labels you as insane even if somewhere in the world it is the right thing to do...

I don't feel too rational right now. I have tried being polite and nice, I've been a "sport" and danced to the music played by the people in power. For what? This is not the era of chivalry, of values, of doing good deeds. In this era only the strongest, loudest, meanest, and irreverent survives and gets away with what they want. Why things must be this way? Why there is no thirst for knowledge, for learning, for solving problems putting yourself in the other person's shoes? UGH!!!!

Hospital staff... The doc who wants to try, the doc who desnt and the one who wants to prove us wrong. Lovely picture. Then the therapists that work... and the ones that wonder why the heck they give them more work... And so one wonders what are THEY up to... A HYBRID they say... They want to make a hybrid of their process (safe tracheotomy) and the NIV (too much work for them). It wont work. Really... I dont need an astrologist to tell me that future...

So... Only turn to take, sound prayers to the Allmighty... He knows our hearts, who's been good and who's been not so good... He knows which cause is worthy, and which isn't. So I let Him take charge... Do what You must... Nowhere to run to, nowhere to hide. Do Your magic, as You always do to those pure at heart.

10-4

We need help...

ASAP! Click on image to read the information on the ad.

Anniversary, Extubation, FundRaising

... the fun never stops...

Living as if being trapped in a long mini-series based on ER that turns into horror-drama each time the sun rises and each time the night falls...

DeeVa was extubated today to BiPap. Let's see if it works... Still, we need $27,000 to move her to US Mainland. Got help?

The Witch and the Mage turned One Year Old together. Seems no one cared much about it... Well, at least our DeeVa smiled about that, and decided to let the BiPap work as a nice little gift to us...

Groundel getting around, helping out for DeeVa's sake.

LightShadow becoming a DeeVa activist. There is no end to her ongoing quest! Yay! Next step: to rule the world!

Coriolis being a bit cryptic, a bit Ronald-Mc-D, and a bit psycho (now he's kitty hunting... what the world is turning into...)

So... Drama goes on, excitement and adventure goes on, DeeVa goes on... And the Story of Us goes on... Until the end of time.

La-la-la

10-4

Tournament of Basketball & Softball in Lajas

Pro-FONDOS DEIRDRE MEDINA RIVERA

Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!

HELP NEEDED

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5 months baby DEIRDRE V. MEDINA needs your help!
She has been diagnosed with Spinal Muscular Atrophy and needs to be taken to the United States for proper Non-Invasive treatment. The medical insurance does NOT cover any transfer or hospital expenses withing the US Mainland, so we need your help. The funding account is at Banco Popular of Puerto Rico, checking account # 041-473272

What is Spinal Muscular Atrophy (Werdning-Hoffman Disease)?

Werdnig Hoffmann disease is a type of spinal muscular atrophy. It is a rare, inherited progressive neuromuscular disorder of infancy characterized by degeneration of groups of nerve cells (motor nuclei) within the lowest region of the brain (lower brainstem) and certain motor neurons in the spinal cord (anterior horn cells). Motor neurons are nerve cells that transmit nerve impulses from the spinal cord or brain (central nervous system) to muscle or glandular tissue.

Approximately 80% of SMA falls into the severe category (SMA1). Infants with SMA1 experience severe weakness before 6 months of age, and the patient never achieves the ability to sit independently when placed. Muscle weakness, lack of motor development and poor muscle tone are the major clinical manifestations of SMA1. Infants with the gravest prognosis have problems sucking or swallowing. Some show abdominal breathing in the first few months of life. Muscle weakness occurs on both sides of the body and the ocular muscles are not affected. A twitching of the tongue is often seen. Intelligence is normal. Most affected children die before 2 years of age but survival may be dependent on the degree of respiratory function.

For infants who appear to develop normally during the first months of life, muscles of the pelvic, trunk, and shoulder areas may initially appear to be disproportionately affected. With disease progression, diminished muscle tone and weakness may gradually spread to affect almost all voluntary muscles, with the exception of certain muscles controlling movements of the eyes. Intelligence is NOT affected.

Infants with Werdnig Hoffmann disease may lack head control, may be unable to roll over or support their weight, and tend to lie relatively still, with little or no movement (flaccid paralysis). In addition, they may develop difficulties sucking, swallowing, and breathing; have an increased susceptibility to respiratory infections; or develop other complications that may lead to potentially life-threatening abnormalities within the first months or years of life. For infants who appear to have normal development for several months prior to the onset of muscle weakness, the disorder may tend to have a more slowly progressive course.

Werdnig Hoffmann disease is inherited as an autosomal recessive trait. Molecular genetic testing has revealed that all types of autosomal recessive SMA are caused by mutations in the SMN (survival motor neuron) gene on chromosome 5. Deletion of the NAIP (neuronal apoptosis inhibitory protein) gene that is close to the SMN gene is also associated with SMA. More patients with Werdnig Hoffman disease (SMA1) than other types of SMA have NAIP deletions. The relationship between specific mutations in the SMN gene and nearby genes and the severity of SMA is still being investigated so classification of SMA subdivisions is based on age of onset of symptoms as opposed to the genetic profile.

CLIMBING THE MOUNTAIN

...

Gosh, it all has turned beyond hectic, beyond tiresome... But hope and belief fuels our actions everyday. Our DeeVa is holding on at the hospital, had her Gtube-nissan wrap surgery, and is waiting for the cough assist to see if she gets extubated. Things are moving, slowly but certainly. We need to take her to the US mainland so SMA experts can actually customize the SMA NIV protocol for her...

Yesterday the bank account to gather funds towards this purpose was created. Banco Popular de Puerto Rico, fundraising account for Deirdre Medina is 041-473272. We will appreciate every cent. I will post the flyer as soon as I get it (LightShadow has been working on that, and many other things).

HOME: Home is where the heart is... So right now, home is the hospital.

FRIENDS: Well, they are all keeping themselves busy, and helping DeeVa one way or the other...

LightShadow drowned in work, helping Groundel, helping DeeVa... She's our spokesperson out there in the Wester area... Well, her hands are quite full, and she smiles anyway.

Coriolis, giving us shelter all this time that we've been stranded in Area Metro. He's provided technological assitance to moi so I can keep on in the Internet, as well as he is the co-founder of Deedee's benefit account.

Groundel is in Hormigueros, finally out of the hospital last Monday. He's been cleaning up and putting stuff together, and worrying about Deedee non-stop.

TheMAGE: Tired... Hopefu... He's been the driver all this long, the clown so Deedee laughs continuously, and as loving as ever. He is very tough underneath the soft mask he always wears. He has kept me strong, keeping me from collapsing or surrendering. I love him deeply, and soon our first anniversary will creep on us... A year that has passed changing our lives forever. And I would not have it any other way.

ME: Tired... Very tired. Sleeping 4-5 hours is not good for me. I NEED 9-10 hours to be fully functional... but the need to gather all the info I can so I have the tools to fight for Deedee forces the sacrifice. Hopeful. I truly believe that Deedee will prevail, I can feel it each time I look at her. She has a big purpose ahead of herself... And we are to facilitate the way...

10-4

UPDATE 2008

Well, some quick changes... So so far...
-Deedee was transferred to the Pediatric Hospital in San Juan... So far 2 thumbs up
-We will be able to be with her from 10am to 9pm... Another 2 thumbs up
-Called my boss and may be able to get work at our SJ office, Yay!
-The Mage and I are staying at Coriolis's Inn for a while
-Setting up my house for sale
-Some people setting up a " rifa" to get funding for Deedee's travel to US
-Some people checking up things for starting a fundraising for Deedee
-Life is definitively faster in this new lane... So keep tuned!
10-4