SLEEP KEEPS ON BEING OVERRATED

For some days now it's like I go to sleep at 5am and wake up around 10am... If it's not one thing it's the other... Monday baby had an appointment, Tue & Wed had class mean assignments, today baby had another appointment... Weekend and afternoons have been nurse-less, and Wed&Thu hubby sent day nurse home as she seemed sick... as in ill, people. So... The sleepless drama keeps on. Happy happy joy joy...

Class is ok... could be better if it actually felt there is further interest from the teacher to teach... (what a concept!) The comments made to my classmates and myself are very simple and do not add much to the learning process... Come on, there's only so much you can actually discuss in a forum! What happens when everyone is stuck? And... joys of joys... next course is about db... I need to find out with the counselor if I really have to keep this track courses, as there is another track focused on design and I dont know if in the end we have to take 2 tracks or a choice between them... I didn't get to choose, so... So far, yes, I'm pretty miserable. I hate programming. I'll whine about it through it, and after its over. I HATE PROGRAMMING. I'll get over it, but... I HATE PROGRAMMING. 'nuff said.

I hope this will be all over in August. I want the diploma to actually go in-depth into job search, working at home version... or a hybrid of 2 days in the workplace and the rest at home. I know the right job fit is for me out there. But I need a focus that with classes and baby I simply can't have.

Seacacus was a fiasco. they have same issues as here: Housing list is closed and overcrowded, so we can't get in the waiting list, so our contact can't help us getting priority, so it's all stuck.

The wheelchair and medical bed drama continues... I hope it all can get a happy resolution tomorrow... erm... today?

I FINALLY filed up my Income Tax 2008. Yes, I'm VERY late, especially for someone who doesn't have to pay... I completely forgot about it, the pressure to fill it up in here is not a constant bombardment as in Puerto Rico. But, finally filled it up and will send Saturday. Cannot say Friday as I have a nasty class assignment for Friday...

So this is it for now.

10-4

What's going on so far

It's Star Wars weekend, and so we are chained to re-runs of the first 3 movies and then the three real movies of the 6-part saga. It's both good and bad. Hate the newest version... What were they thinking? Such a character like Darth Vader with such a lame background... ugh!

Well, back to me.

Home: For now things are on track. Some expenses will still be covered by gov aids (amen) and so we can keep focus on caring for baby. Besides that, looking for housing options to see if we can actually qualify somewhere else for Section 8.

Class: Second week of sucky PHP course, almost over! I don't see any learning experience here... all I see is loud mouth people and no comments from the teacher... Don't know what else to expect. Will try to keep on reading and keep on trying to learn by myself. Did I mention I hate programming? Just checking.

Well... building up a class site for my dream of doing a SMA chapter in Puerto Rico. You may go there and browse and critique if you feel like it (it is a work in progress, made the basics in CSS and must apply some php to the forms... This is the 2nd week, so don't expect fireworks... It was a "design a site"week... Next week real programming begins. Wish me good luck).Anyway, hope that this truly ends in August. After getting the diploma I may go forth and do a bachelors in multimedia or graphic design. But that is another story... One thing is certain, so far this was a really good idea. Besides keeping me "sharp" it has also validated my desire for a career change. I REALLY like webdesign. And if I am able to do something about Motion Animation I will be in heaven. I REALLY like motion animation... Hopefully the stars will align and I will be able to get into that trail, follow it, and succeed. I have wasted so many years doing network work... But maybe now the new era has begun.

Friends: Groundel has been busy straightening up parts of his life (yay), Coriolis has been busy with animals and plants and then some computers... (yay?), and Carlos managed calling up and saying hello (yay!). To the surprise of everyone I keep up with everything about beloved little Paradise City, and even got to find this lovely link to savor Puerto Rico in all its splendor! Visit Eye Tour Puerto Rico and you'll see what I'm talking about. They even have a video of my favorite place, Los Morrillos Lighthouse!

Life: Getting summer clothing for little miss D., trying to keep up with the class, caring for miss D., and job hunting, house hunting, services hunting. There's never a dull moment.

10-4

Weird Groundel Post below

Since videos did not show in his site, I posted them here just so they are there. Enjoy or something. :P

HAPPY BIRTHDAY TO MEEE!!!

Yup, on April 8th I turned a year older... and somewhat wiser... The day was not so bad at all. Got phone calls from the right people, and hubby hit jackpot with a lovely victorian-goth dress that really surprised me. And the cherry on top of the sunday: Deedee has been doing great so far, so the three of us were at home. It's as good as it can get. :)

This week my new course began... Introduction to Programming. Not so thrilled about it, as I'm trying to actually run away from programming, but I know it is a necessary evil. This course teaches PHP, which seems to be in vogue. We'll see what happens... I should do good, it is not my first programming course and I dealt with some Oracle and ASP.net... It's just annoying.

And that's what sums all up, for now. I'm feeling very tired and sleepy... Ge, I wonder why...
10-4

CLASSES OVER, AMEN!

This was torture! But finally made it... Created Deirdre's Official website. Visit it and spread the word!

Busy, busy

One site down, one to go... Just 2 more days for this to be over... Gosh, no more double classes, no more!

TIRED

Stressed, tired, overworked, tired, many things to do, tired... Tired, tired, tired...
Back at home, after a whole month... Tired... And Deeva beeping all the time... No rest for the wicked.

SURVIVING WITH FLYING COLORS!

(exhausted? well... duh!)

Classes: Made it to my second week, keeping all my grades at a 100. Yes, people, I am very picky with my grades, especially in the starting weeks (those points will be needed when you are reaching the end). So far, LOVE the Flash course. The manual is refresing the little things I never understood well (hey, I took a Flash4 5-day training back in 2002, bear with me!). Who knows, maybe Foamy will have a competitor soon... LOL For the Dreamweaver course, the dice were rolled, and I will try to build Deedee's website in 4 weeks. If that turns out (I know it will, I have been postponing that project for long), I will get a domain so she has her own adress, to make things even better.

Deeva: Infection out, antibiotics ended today, and plans to come back home stand for tomorrow (today) at 2pm. YAY!!!!! Daddy is in the hospital in double duty, as he has been very supportive of me getting the assignments done. Yeah, we all know the classes are fun but they cost and I better take full advantage of them. Deedee will have her share of fame when I am done with both. After all, this is all for her. Anyway, fingers crossed that we all will finally be together soon. Being in the hospital for so long really sucks!

Everything else has been on hold. Family, friends, postings... I've been in working-production mode and I am really tired and need lots of catching Zs. We'll see how that turns out... Got assignments for everyday, and I dont foresee we will have nurses for the weekend. Well, at least Daddy takes care of business really well. He's been rising SMA awareness at the hospital among the nursing students telling them about it, what to do, and what a client expects. Fun stuff. They also liked our manual, they say we should publish it. Who knows... Maybe when we are extremely desperate?

Running out of fuel...

10-4

BETWEEN HOSPITAL & CLASSES

... ermmm... Can I sleep?

So... February has been an interesting mess so far. Never a moment to catch your breath! No way! Action!

Deeva: Got pneumonia and gave us quite a scare early in the week. We had to take her to the hospital on Tuesday, and so far she has been responding to the antibiotics. From dark green brownish icky mucus to crystal clear alien acid, baby improved a lot in just 4 days. Hopefully we'll be home by next Friday. Fingers crossed.

Classes: Well, since I couldnt take Flash in January, now i have to take Flash and Dreamweaver. Got the two hit combo, smashing 5 weeks that will definitively take a lot from me. But since I have so much masochism in me, I know that I will enjoy the high stress. Just for today I need to complete a storyboard, blueprint, two questions... all for one class... and a tutorial and questions for another class. And need to start a gif for tomorrow when I'm done with that, and a storyboard for the other class... All smashed into a nice long night that is just ahead of me. Gotta do that, so I can go take care of my hospital shift tomorrow in the afternoon. Wish me luck.

I was actually gona leave the classes, thinking I couldnt handle that and the hospitalization of baby... Slept on that decision and woke up with the right energy to say "Fuck it, I'm doing it". Reality is that baby will be in the hospital many times, and we need to accept that as our daily bread. We have to adjust things, being positive about it, believing she will respond and be better. There is no space for thinking negative, as those what if's do not improve any situation and actually simply drown us in sadness and depression. We cannot let ourselves drown. We have many things to do, many plans ahead of us, and we must believe that things happen because in a way they fascilitate other roads and makes us stronger.

We travel daily through the road less taken, discovering many paths that have not been walked before. Definitively not the easy road... But you know what? It is the most fullfilling.

So... Just taking a break between assignments to let the world know that yes, I'm alive... I'm still kicking... I've not given up... And the best is yet to come.

Now... Remember Legend of the Seeker...9pm, PIX (Ch11). Hey, it's the only interesting thing on TV right now, gotta milk it!

And kids: I'm not a caller. You wanna talk to me, you gotta call or drop an email. Moodiness keeping the people skills away, focusing on production line mode... Nothing personal. Ok?

10-4

Plans...

of action, of inaction, of thought, of not...

Finally found a dentist on Saturday (AMEN!). Had a cavity digged under a silver plate, so that's what the problem was. It was a funny visit,well... seems the whole day was about "amateurs". The doctor is an "amatuer"painting artist, and has a fruit bowl painted in a canvas, in the client service room. I asked why the painting had no signature. Then he asked what I thought of it... I just thought it was something done by a daughter, so I said it's good for a beginner. Oh, dear... He smiled and said he had done it, but he didnt like the outcome so he didn't signed it. Umm... I kept thinking of that and it just tickles me. Gosh, at least I didnt say it was crap! He went on to say he used to have a mountains painting that became the topic of conversation with a client... who later on he married, and that it's been 10 years since then. That was a nice Valentine's story. Still, on my way back to the apartment, I kept giggling at my response of "Not bag for an amateur". Artists...

I arrived home, and after a while the girl who took Deedee's pics arrived. I was telling the tale of the dentist and the painting, and we were all merry (mostly my dear hubby and her were merry and baffled because I had a laughing spell). Funny thing is that the girl ended up joking that the pictures were "not bad for an amateur". God, it kinda make me burst even further in laughter... Sometimes truth is weirder and funnier than fiction. Especially when it comes out innocently, and somehow without notice. Oh, the laughing episode grew worst after she went away because... well... in Deedee's case... It is kinda true... I have taken baffling pictures of her spellbinding eyes (which somehow didn't came out in the pictures the girl took... Baby didn't smile and didn't cooperate with her at all).

That's the merry part of it all. The down part: I REALLY felt that drill in my tooth. It was awful. It's been 3 days and I still have the sore side. And I have another appointment for the tooth with temporary filling... Ugh!

A family gave the idea of considering moving to another state. We can't go down as services are absent there... We thought about Madison, isconsin. It had been our first choice when we were to transfer but we had to surrender to NJ due to lack of Medicaid. Perhaps now it would be more feasible... I know that's a very cold place, but quality of life and employment is more than 50% better than Newark. So we will try to see the options over there, and it it all points that way then we will go ahead and do it. We are also finding out of how things are in Secaucus and Jersey City as it seems there are more job offers over there that could mean opportunity for me in particular... So, still in hunting mode.

Courses begin in Thursday, this time will be 2: Dreamweaver and Flash, together. Hopefully won't be a hassle, after all I know the old ways with both. Crossing fingers on not going nuts with so many assignments!

And that is how things are in the land of Far Far Away.

10-4

HAPPY VALENTINE's DAY!!!

Friendship day, lovers day... o algo...

Me, I have a terrible tooth pain that is driving me insane. Since things are not so easy in this lovely place, I got a date for March 20th... WTF? What am I suppossed to do in the meanwhile? Well... Gotta get some diabetic pills before I actually go to emergency and try solving the issue... I can't wait so long.

Just saw some kitty videos. THANK YOU GROUNDEL!!! I see my babies are big and gorgeous! Prrrrrr!!!

Happy happy joy joy!

Dissapointed...

One more time? Yup... Actually several times...

As usual, maybe our expectations go beyond the capabilities of the popele around us, or around our little one. Today it was a vendor-show-fitting to select a stupid wheelchair. We took the time to do the proper research, as usual, and had our preferred choice based on Deeva's necessities... The vendor's first attitude was frowning followed by a comment of how we went straight for the best. What? Our baby doesn't deserve the best? What's up with this guy? We'll see about the outcome. The chair is not what we expect, and only do tilting/reclining. The padding should allow her to be straight at least fro an hour. Besides the chair we had the stander info, but that won't be touched until we have an actual hip x-ray that tells them Deeva can use it. Contrary to the doc who just said "have them call me". Whatever...

What bothers? Attitude, attitude, attitude. The people explaining things as if we didn't understand, as if we didn't know implications, and worst: not taking into account Deeva's needs and growth for the next 8 months. Insistence on ordering without taking into account the next 8 months can lead to trouble, as the chair will actually arrive within 7 months... (Next Christmas?)... We will see how useful can that be for her by then... Another thing is the stander thing that is not taken too seriously and other SMA kids have as important part of their thrapy. That and aqwua therapy. They have started as early as 9-10 months. Deeva is 1.5 yrs old, and I dont see why the insistence on putting boundaries that we know she don't have. We have a staff filled with "low impact" people that is NOT cutting edge, dont really think outside the box, and honestly are not doing their job properly or as I expect. And of all people, I can expect because I witness services where i used to work, Vocational Rehabilitation Admin... So I know what is out there, what can be done. And it is the main factor that is so frustrating. If I were an imbecile or ignorant I would be dazzled by everything because everything would seem so magical and right. But I'm not, because of my witnessing things, because of my research on what to do to make Deeva reach her full potential... because we are not average, I am not average... Ugh! And getting comments that leads you to get the point of "why bother? they dont have the money, and is not like the kid can do much" is beyond enraging.

That's about the wheelchair fitting... Now about the nursing company. We are wondering which other company is out there can actully do the job... If that is actually a human target. I mean, we have a stupid manual of care for our baby, we explain everything in a heartbeat, her care is more about being consistent, follow a routine and be aware. No hocus-pocus, no hidden surprises... Well, now we have a star nurse that wont knock and wont call when she arrives because I guess she fears she would break the force field around our house or that it will desintegrate her. Its a big WTF. She comes, ists closed (duh) so she goes. WTF!!! Last week she was annoyed because we sent her home as she was coughing all morning and she seemed sick (gee, excuse us for looking towards Deeva's health). Besides her, no other nurse for no other shift appeared, even if they were scheduled for Friday, Sat and Sun... So, what's up with service? What's up with everything? We asked for our old reliable nurse, and they just did what they wanted (putting her into a case for the night shift) as the opportunity for that came when Deeva fell in the hospital... So they took our nurse to put her in another case... Lovely... I guess they pay more. Its the only reasonable explanation I can think of. They tell us she doesnt want our case anymore. Funny, because I talked to her last week and she sounded quite the opposite when I asked her why she had not come back, that we missed her. The company sucks. That's all i can say about it. They lie to their teeth. And we are getting to the fed-up part. So the drama of the nurses from hell continues... We asked for something, they seemed to hear, and today in the night we have a "meet and greet"with a nurse that, ok at least she showed up, but she is the same as the others that didnt work out... And we wonder, is this it? Its horrible. Its unnerving. Its stressing.

Wheelchair done, nurses done... Getting to the services in matters of therapy. Everything sucks about it. We get the "we will show so you do"and what we think it should be is consistent 3 times a week of coming and doing the actual therapy. We do our part, but somehow we are not impress with the services as it were things we have been done ever since we got all the info and the what to do back a year ago. The only one that contributes something is the communications specialist and we suspect it is because since she works in cerebral parlsey she is exposed to more things related to Deeva's condition... Everyone else is a supporting cast that is good only for keeping us a bit sane with social face to face interaction, that is all. But who knows... Maybe I'm wrong. Maybe they DO something, it is just that I'm so used to things (one of my friends is a top physical rehab therapist and she couched me since this started..., maybe that's why I dont see the razzle-dazzle about them.

Maybe it's me, maybe it's us... I keep thinking it must be us, it cannot be that everything is so lame. It cannot be that we actually do a better job at everything we do. We dont have a certificate for the skills as PT, RT, OT, speech, communications, or as doctors... But we DO have beyond the skill and knowledge of these so called professionals, and somehow instead of boosting our confidence it actually depresses us. Yipeee, we know and can do everything... So... How can others help if they suck at everything they are suppossed to be specialized into?

Tonight, after the morning arguing with the nurse agency, after the afternoon at the stupid fitting, after the dumb meet and greet, after having to take a long nap as I was completely out and drained... I woke up, it's 1am, and I just wrote all this... How I feel? Honestly I feel defeated. I feel depressed. I feel sad. I feel we are wasting out time, our lives. Deeva dont have the quality of service we expect, and seems that no matter what we do if we dont do things ourselves it all just sucks. We dont really have a professional supporting staff that is actually interested in going the extra mile and actually tailoring things for Deeva's skill improvement. There are no friends or family to rely on, at least to give us a bit of energy or just to listen to us. No friendly faces at any given moment of the day. It's just us: mommy, daddy, baby. Oh, and kitty. And it is alright, we accept our fate... But when you see goals and purpose bent towards the will of a flaw system and stupid people serving in the system, you start to wonder what is best.

How can we move on to a level where we can actually make our own decisions if we dont get a job? And gosh, NO ONE would hire us! We have tried EVERYTHING! And then when we think we can balance outside job with Deeva's caring, something happens that requires both of us juggling life. And the more days that passes the more certain it is that raising Deeva requires both of us simply because services are there but are just a mirage, a mental placebo. Sure, a helper may appear, but we actually do all the job so it is done RIGHT.

Somehow the opportunities are faded, the outlook on where to go from here is tied up to getting a job, moving where the job is, getting a new supporting cast for services. Problem: It goes in that order, days keep passing and it all seems a neverending story. Staying here in NJ was imposed on us, and we hate it. We want to go back home and we cant. And the ease of people being two face all around us is really heart-breaking... whoever is nice to you has an alterior motive.

Dissapointed... There are no other words to put how we are, how we feel, how things are turning out. In our microcosmos, we stand and we prevail... The trouble is the rest of the world.

HAPPY 2nd ANNIVERSARY to US!!!!

Just a reminder to the world: Two years ago the Witch and the Mage said "I DO"... And for so many non-believers, well, here we are. The amazing journey has taken many unexpected turns, but still has been the best thing in both our lives.
I LOVE YOU, ZORDAK! "til the end of time.
XOXOXO

LEGEND OF THE SEEKER

magic-fights-more magic
Ok, Last week I was obssessed with Michael Hurst, finding all the info I could about his wherabouts... Well, he directed episode 10 of this series. Looked it up, HULU-ed it... Well... If you thirst for something reminiscing of Xena and Herc, look no further. Filmed in NewZealand and featuring a cast that you will recognized for those old series, you will enjoy this new series. Finally, a breath of old-fresh air! Music by LoDuca, of course, and executive producers RobTapert and SamReimi. A nice break from so much TV trash! (You know, the only watchable thing right now is House... so this gives another selection to the daily menu). So... Go check out Legend of the Seeker. It's worth it.

VISUALS 101

Well, not that I have changed alot. Still the same old twisted happy goth. Loved my layout, but since I was forced to update decided to change from all red/black to a bit of purrrrrrrrrrple in the mix.

Anyway... Found many unexpected things today, 70s and 80s of course. At least today I was not doing anything sewious. Just strangling time.

Don't Ask...

LOL

Glamour & Glitter, Fashion and Fame!

And then some...


Gotta get me the complete series... Hmph!

Just for some kicks...

So many losses...

what a way to start the new year...

I just read that an SMA baby, Cornelious, died on Saturday... He was 10 months and 10 days. Many SMA kids have been VERY sick, and when we got to PICU we found Israel, who has been there for 3 weeks and counting. The weather takes no one for granted.

Last week a friend who was to turn 21 on Jan 13 died, after she was healing and doing well from her transplant the doctor arranged a liver check up, which ended up in malpractice as an artery was broken and no one noticed until everything inside her got paralized. Imagine that...

We are sad. Nothing you do can change the fact that the only ones who take good care of SMA kids are their parents. Everyone else makes stupid mistakes out of carelessness and stupidity. It is so unnerving, as whenever you meet people or doctors, they say "oh, but you have nursing care, right?". Like that settles the issue of bein stress free, free to work, free to do whatever... How? The high anxiety and stress of what a stranger can or cant do is beyond belief. If I count all emergencies that have happened... all have been due to a small stupidity moment of someone else... not us, not our baby... To top things, you go to a hospital and there you find the same... nurses and RTs that shouldn't be there because they barely do their jobs and are lazy... and still getting paid. What is the difference from here and our island? The doctors having a broader knowledge, and more availability of services. Everything else is the same crap: malpractice due to stupidity, malpractice due to laziness, malpractice due to overwork (most work 2 shifts, not that it includes quality of service!).

Its all tiresome, and very very draining. We have no one to turn to, and we know that situation would be the same for us anywhere in the planet... due to our limited family and our limited friends. Groundel,LS and Coriolis are always there, and have been of BIG support, but beyond them... Well, beyond them is all the perfect beautiful familiar strangers on the SMA Support group that have been "virtually" there all the way... and they know how things are and why we have this ongoing desire to live each second to the fullest. Without them, I dont think we would be here at all... I dont think Deedee would be here, period.

Besides this, both Mark & me had to cancel our classes, as they started yesterday and obviously we wont be able to attend until Deedee is back home... which may take up to 2 more weeks if things go well. A small drawback, but our main reason for being here is Deedee, so she is the priority. Mark is more obligued, as he must get a RN (registered nurse) degree for Deedee's own well being. Me, the diploma I'm completing is for keeping sanity and having a real world stress, I need it so I wont go insane being between 4 walls all of the time, and it is not so critical. I'll take classes next month, no problem.

Mark may have a prospect job, but as every other offer it is far... We will see if it is worth it or not. But that has to wait until Deedee is home as well, and they may fill the spot by then... Whatever happens, hope things will fall in place little by little.

Me... I'm fed up with some people, both friends and foes. I'm making sure they get their own "mandá pal carajo" at the right time. I'm tired of bearing the sign of "Pendeja a bordo" or something... That's how it feels. Being good and nice doesnt mean being "pendeja". High stress, high anxiety, high everything... Including high belief in things working out and getting better.

Sing along:
"You take the good, you take the bad,
you mix them both and then you have
the Facts of Life, the Facts of Life..."

10-4

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