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Wednesday, April 14, 2010

A Good Cause...

Whenever a news story affects me emotionally, I feel the need to act upon it.

John and I registered to be bone marrow donors in 2007 when I learned about a bi-racial toddler from San Francisco who desperately needed a marrow match. A few weeks later, I learned about a 6 month old baby in Sacramento that desperately needed a donor as well. Both of these children inspired me to start my own efforts to get people to join the bone marrow registry. After a lot of guilt-tripping, I managed to successfully get 20 people to sign up. ;-) I wasn't much, but it was something.

When both of those babies died, it absolutely broke my heart. I couldn't begin to fathom what those poor mothers were going through...yet.

After Ethan passed away, I wanted his memory to live on somehow. People needed to know his story. After speaking with our social worker, I coordinated a soft blanket drive for the ICN babies as a show of gratitude for the staff. We wanted other parents to be able to hold their precious, dying babies in a "real blanket" instead of the one from the hospital. The ICN staff managed to warm and comfort our hearts despite the severe coldness that engulfed us as Ethan slowly slipped away. They took such good care of Ethan. We collected 27 blankets and those blankets were given to 27 families in situations similar to our own.

Now I understood the desperation and pain that my "sisters in grief" went through.

As Ethan's one year death anniversary loomed ahead, I felt compelled to do something to make sure that his death was not in vain. I must have had premonitions the year I got pregnant with Ethan because I actually promoted a local blood drive on my old blog. So, for his one year death anniversary, I decided to hold a blood drive in Ethan's honor. When Ethan was still alive he received two transfusions of O+ blood and fresh frozen plasma.

And those transfusions bought us more time with our son.

I coordinated a drive with Blood Centers of the Pacific because their organization provided the blood for Ethan's transfusions. The Ethan Nikolas de Leon Memorial Blood Drive was a huge success. Over 50 people tried to donate (some from off the street!) with a little over 30 people being accepted as successful donors. THREE lives are saved for every one pint that is donated.

A little over 90 lives were saved because of Ethan. Whatta kid. :)

My most recent charitable venture has been serving as a Team Captain for the 1st EVER Hemophilia Walk here in the Bay Area. I named our team "Lucky Factor Seven" (for reasons that should be obvious to you by!) and my team consists of the amazing group of people! We've got close to 60 people walking in memory of Ethan and in support of Niki. As of this date, Lucky Factor Seven has raised close to $9,000. (Thank you walkers, donors, and virtual walkers!)  Even Anthony and Kevin donated to the cause with their piggy banks money. The director of Hemophilia Foundation of Northern California wrote a comment on our team page calling us the "star" and I'm ecstatic that Niki's 1st Hemophilia Walk turned out to be such a success.

I wish Ethan were alive to see it.

There are over 300 people walking (60 are "Luckies") and Lucky Factor Seven is the TOP fundraising team! If you're free this Saturday, April 17th, please join us at Cesar Chavez park in Berkeley. The walk begins at 10am. If you're unable to participate in the walk, but you'd like to show your support, PLEASE donate to this wonderful cause. Even $7 helps. We really need to raise awareness for this disorder. :)

Click here if you want to donate. Only three days left until the walk! Check out our team shirt below.

These are Ethan's footprints. :)
The Back

Saturday, April 10, 2010

From X-Rays to X-Rated Pt II...

Even though I was very disappointed that I had to withdraw from the X-Ray Tech program this past October, my saving grace was the fact that I still had other ventures to look forward to. Sex Education has always been an interest of mine and I *thought* I was transitioning into that goal this past Fall.

And then, I wasn't selected. Boo!

So, I figured Sex Ed and I weren't ready for each other...yet. Just recently, I was even more disappointed when I had to permanently withdraw from the X-Ray Program because of the fight between "work=health insurance" vs. "school=financial security". Decision making time came and there was still no change in the work situation that forced me to withdraw in the first place.

So, "work=health insurance" won the final round for obvious reasons.

I felt like I hit a brick wall. I'm going to be completely honest and say that I was utterly unsatisfied with the direction my life was headed. My going to Rad Tech school was the whole reason why we sold our "Home Sweet Home"!!! So, I did all of those years of night school to get my Associates and sold my house...for nothing.

No upcoming career in Radiography so I could afford to go to school full time someday. No getting a Bachelors in Health Education within the next 5 years. No eventual Masters in Sex Ed.

Nope, my plan changed -- BIG TIME -- so my "goal map" had to be re-routed. "Real school" has to wait because it will always be there and good health insurance is hard to come by. I must temporarily "swallow my dreams" for the sake of my cubs. My friend B introduced the "dream swallowing" concept to me and I think it's absolutely brilliant. Despite all of the dream swallowing that woman must do so her offspring can achieve dreams of their own, what I've learned about motherhood is that our swallowed dreams can be regurgitated. Motherhood has been the most fulfilling experience that I've ever had, but I fully digest my dreams and discard them as waste, what will I have left once my cubs have left the den?
With time, we can and should regurgitate all of those dreams that we once swallowed.

Maybe we can't move to Hollywood to pursue an acting career or stop working completely to become a Sex Therapist,but we can still find ways to reclaim our old selves. There are always alternatives. :) Our kids come first, but us Moms need to remember about ourselves. God willing, I firmly believe that we can do anything that we put our minds to. Of course we must always stop short from putting our personal needs before our children, but having kids should not equal the end of life as we know it.

God didn't give us gag reflex for nothing. ;-)

Gagging hurts, but for us unconventional Moms who did things backwards, it takes a little more pain to make things happen. No worthwhile goal ever comes easily. And we have to work extra hard to be the women we once were. So, induce your metaphorical vomiting when you're able to deal with the mess. It may hurt, but you'll feel much better once you've gotten it out of your system and out in the open.

I'm in the midst of my regurgitation.

I've learned that I need to stop stressing about my mess and figure out how to clean it all up. It doesn't look like can't go to school full time anytime soon -- I may never be a Sex Therapist -- but I did find an alternative. I was so excited
about getting into the Sex Ed training before I got shot down. I remained reluctant about reapplying up until one week before the next orientation session. I sucked it up and I did not allow myself to become discouraged just because I wasn't chosen the first time around. I reapplied and attended orientation last week. Remember the class that I mentioned?

I just found out on Monday that I got in. :)

It so happened that I was going out with B for Happy Hour later that evening. And it was sooo nice to celebrate my mini-accomplishment with a fellow "dream swallower". My alternative will be just as satisfying as the "real thing".

So, say hello to SFSI's newest Sex Educator trainee. :)

Sunday, April 4, 2010

Happy Easter from the Cubs! :)

-- Posted From My iPhone using BlogPress

Little Lioness...

Did I mention that Niki had fever when I came home from work on Monday? No? Well here's the story...

John got home before I did so he was the first between the two of us to discover that Niki was sick. He checked her temp and it was 102.3 which meant we had to take Nikiface immediately to the ER for the 7th time in the past 6 months. Yes, I'm keeping a mental tally of our ER trips.

No passing go. No collecting $200. Just go directly to jail the ER.

I called the on-call Hematologist so the ER staff in SF would be prepared for Niki. I got home at 6:30 and we arrived in the ER by 7pm. Nurse Stat and Dr. Daddy (surprisingly) weren't there. After a tiny bit of head scratching on the ER staff's part (the MD even asked the nurses if they knew how to "draw blood from that thing") they performed the usual blood culture,abx infusion, medical jargon, blah blah blah yackety schamackety. I don't blame them for the head scratching though because my Nikiface is a rare case. In fact, I still learn something new from every ER visit. I'm sure you're sick of hearing about our ER trips just as I am sick of writing about them.

But, it's all about documentation folks! Niki needs to know her story. ;)

Every ER trip is simultaneously predictable and unpredictable. John and I have learned a lot from our trips so we've blossomed into great advocates for little Niki Boom-Boom. Some of these lessons we had to learn the hard way. I used to be meek, but now I have no problem speaking up for the best interest of my Baby Bruiser.

And at this particular visit, Niki was not a happy camper.

She was burning hot so they gave her a Tylenol suppository to bring her fever down. I learned that Niki cannot tolerate oral meds when she's feeling ill. I let this be known the minute they mentioned Tylenol lest someone try to convince me to "wait and see" if she vomits. I allowed another nurse to convince me to "wait and see" a few ER visits ago and she promptly puked. Thrice.

Uh, no. I've gotten the "mother knows best thing" down packed so get thee to the suppository supply please.

Working for Kaiser has been a plus because I can throw in pertinent medical terminology AND I use the same electronic charting system at my own job. I don't come off as a know-it-all (I know my manners) but, I also no longer accept the subtle laziness that Niki has been subjected to in the past. Everything is just an order away. I suppose I give off the illusion that I know what the f*ck I'm talking about because I've been asked many a time by different ER staff if I was a nurse (or "Nars" by my Filipino counterparts lol!)

Ha, I wish.

I don't think it's relevant for them to know my occupation--I could be a prostitute for Godsakes!-- but I keep it real and tell them I'm a Medical Assistant...Extraordinaire. And more importantly that I'm an expert on my daughter and her condition. That's usually enough to stop any further inquisition. Lol!

Better yet, I think I will say "prostitute" the next time someone asks me what I do for a living.

I loved the staff that was on that night. My "Plan A" (Nurse Stat and Dr. Daddy) wasn't there, but the staff that was on that night were the best "Plan B" we've had so far. I hate being second-guessed and they didn't question us at all. Even when I told them that we wouldn't be needing them to change her clave or Hep-Lock because we could do it ourselves. They  really trusted our ability to access her line. They didn't even question why she couldn't have a catheter for her urine sample. And that my friends was awesome.

Plan B really trusted our knowledge and personal experience as parents.

Niki didn't get her Ceftriaxone (antibiotic) infusion until close to 9pm. Plan B was a bit behind on the protocol (she should have got her infusion within an hour), but it was completely understandable. I really liked Plan B because they were efficient. Niki was discharged by 11:30pm. :)

She felt like sh*t. (Pre suppository)

After the Tylenol. She was still getting her infusion during all of this...

Niki had to get her 2nd abx infusion the following day. I went to work in the morning because I need to preserve my sick time for her surgery in August. Oh the joys of being the insurance provider. Nurse Richard tried his best to get Niki an appointment at the Pediatric Infusion Center in SF because it's closer to our house, but they were fully booked. Our options were to take her to see Dr. Sweetheart in my building for a PIV or to drive to Oakland to Dr. Awesome's office for the abx infusion through her Broviac.

We opted to drive to Dr. Awesome's office since it was a no factor day and we didn't want to risk any bleeding from a PIV. John and I left work early instead. Thank GOD for FMLA.

Going to Dr. Awesome's office is like going to the Ritz Carlton. They're the most knowledgeable on "all things Niki" so her infusion went smoothly. Niki was also given 200cc of fluid to keep her hydrated. Dr. Awesome even discovered that Niki was starting to develop mouth sores from the high fever that she had the day before. So, after playing a round of peek-a-boo with Niki, off she went to order some "magic mouth wash" for my baby girl. We got there at 2:00 and finished by 3:30 -- pure awesomeness at Dr. Awesome's. :)

The view from Dr. Awesome's office...

That night, Niki was in absolute pain from her mouth sores. They were full blown, raw, and kept her up all night. My poor baby would cover her mouth and cry because they hurt so much. It was painfully adorable. The sores bled so much that we ended up giving her factor at 4am.

Fun stuff, huh?

Niki is a tough little cub though because by Wednesday evening she was feeling much better. I even had time to partake in some "paganism" by making Easter baskets for my MIL's daycare kids.

Making this one was my favorite. Can you guess why?

Niki was eating and playing again so John's sisters had to tend to her while I erupted into full "crafting crackhead" mode. I really procrastinated on making the baskets. Thank goodness my MIL didn't need them yet or we would all be screwed. Lol! Believe it or not, I also attended a class that night. So much going on and so little time to do it all. What's my next project you say?

Coordinating the final details for the Hemophilia Walk, of course. Don't forget to donate! :)

I am pleased to report that Niki's mouth sores have completely disappeared. She's as happy as can be just in time to celebrate Easter. Now, we're back to dealing with the trivial stuff like mini nose and mouth bleeds. Whatta girl! :)

Just another day in the life of my special Little Lioness. :)