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Sunday, November 29, 2009

Every Fiber...

Thanksgiving just passed and it was another holiday spent without my special boy. My holiday was happy, but not quite. It's the simple things I miss really. I wish he could have tasted turkey. I wish he could be stuck in traffic with us. I desperately wish our family could be "complete".

I miss him with every fiber of my being.

I still cannot believe it has been almost two years since he was....born. I hesitated when I wrote that last sentence. My first instinct was to type "passed", but I refuse to dwell on that part of his life. People have tried to console me by reminding me I should be glad he wasn't older when he passed away.

And to be honest, I can see the logic behind those comments.

It's true, I didn't get to "know" him. And yes, I never had the opportunity to witness what type of person he was going to become. I will never know if he be would an extrovert like Kevin, or headstrong like Anthony, or grouchy like John, or senstive like me. I will never know if he really was going to be Anthony's twin or Kevin's junior.

I can only speculate.

However, there are things I know. Things I remember and will never forget. Things I miss with every fiber of my being. He had a dimple. He liked his binky. He preferred to wear hats. He made me crave California Rolls and Hot Apple Cider.

And he was is mine.

So, if someone were to ask me what would hurt more...."one week" versus "nine months" versus "four years" versus "six years"....? They are all the same to me.

And, I still miss him with every fiber of my being.

Original Video - More videos at TinyPic

Saturday, November 28, 2009

Cliff Notes...

I'm seriously backlogged with my "daily documentation". I still have soooo many "saved as draft" entries it's not even funny. So, I've decided to compile everything into one blog entry for my own sanity. And so, without further ado, here's the Cliff Notes version of "November 2009 @ the Lion's Den". (Disclaimer: I didn't proof read, spell check, or edit this entire post. Please forgive any grammatical errors, typos, or any confusion this may have caused.)
Week 1 Highlights:

Thursday 11/5/2009
Boo and Niki had ear infections in the same ear. Kevin was sent home with a note from school. His teacher said he "lied" about finishing his word contractions classwork. Kevin admitted to me the he didn't finish his work, but he also told me that it was "too easy". The KID thought he could finish it quickly so he opted to draw instead! I informed him that he needed to be diligent about completing his work on time always. While we are discussing his behavior, he mentioned to me that his teacher yelled at him and smacked the back of her hand into the palm of her other one. It appeared to me that she was attempting to intimidate my son into doing his work. Not cool. I tested Kev to see if he was paying attention to the lesson and of course, Kev passed with flying colors. I wrote a note back to his teacher informing her that I'd appreciate it if she didn't yell at him if he makes a mistake. I also advised her that Kev was paying attention to her lesson.

Friday 11/6/09 Boo and Niki's ear infections appeared to be improving with the antibiotics. Their low grade fevers were gone by morning. No response from Kev's teacher. The note I sent to her never came back to me. I figured she didn't respond because of the weekend. I left her a message Friday night and reminded her of the note I sent. The weekend was completely uneventful.

Week 2 Highlights:

Monday 11/9/09 Still no response from Kevin's teacher. No phone call or note from school! I started to grow impatient.

Tuesday 11/10/09 STILL no response from his teacher! While I waited for Kevin to finish his dental appointment, I placed another phone call. It was 5pm and she answered. She seemed surprised that I called. I asked her about the note and she denied ever seeing it. (Yeah right!) Then I proceeded to tell her about the discussion Kevin and I had. She denied ever yelling at him and she even tried to imply that Kevin was embellishing. Total lies, but I let it go. I told her that I wanted to PREVENT Kevin from getting in trouble and asked her what game plan she had in place to combat the issue on hand. I reminded her that I was doing my part at home. Kevin doesn't watch TV, go on the computer, or play video games on week days. (Barely on weekends.) I even told her that Kev (and Anthony) have "class time" with me at home every night. She said she would "try" to keep him on task and "try" to send me a daily report about his activities (my suggestion), but nothing was set in stone. Meanwhile, she suggested MORE stuff for me to do at home to combat the issue. Basically, she implied that something that needed to be changed at home and NOT in class. Keep in mind that the only problems he has are IN CLASS and I can't be there with him!Nevertheless, I let it go. I even wrote a little motivational note for him (on a baseball) to remind him to "score a home run" and finish all his work. It was my attempt to "be there" in class. Positive reinforcement right?

Wednesday 11/11/2009 Kev came home and told me that he "scored a home run". Progress!

Thursday 11/12/2009 I went to visit Ethan when I got off from work and had a very negative encounter with the security guard there. The guard pulled up very quickly (from out of no where) and sped up to my car with his while I was entering the gate! I was already in, but he honked very loudly at me so I rolled down the window to see what the problem was. He was yelling at me and told me that cemetery closed at 5pm. It was 4:50pm. I told him I understood that, but I also told him that there was no need to be rude. He yelled "Why?!" back at me and I reminded him that we were at THE CEMETERY and that I was there to visit my loved one. I told him again that there was no need to be rude because Holy Cross is a sensitive place. He told me that if I didn't like it that I could complain to the cemetery office. I reminded him that it wasn't 5pm and I asked him to stop yelling and being rude. Yes, I told him to watch his rudeness that many times and he didn't let up. Then, he told me "You can leave." I was beyond shocked. I asked him if he was kicking me out. He must have realized that he was wrong so he told me "Go, hurry up!" Nice, huh? I went and visited Ethan (there were still plenty of cars parked throughout the cemetery), but I was still shaken up by the encounter I had. I stayed for a brief moment and when I drove back the gate was locked. The guard was standing there. I pulled up next to him and told him that there were still plenty of people inside. The guard then proceeded to talk over me so I interrupted him. I told him that he need to listen to what I had to say. I reminded him AGAIN that there was no need for him to be rude. I also reminded him that it was not 5pm when I got there. Actually, I almost started to cry because he was being so horrible. I told him that I've been coming to visit Ethan almost every day for nearly two years and I had been there past 5pm plenty of times. He shook his head as if I were lying and then said, "I've been doing this for 20 years and you've only been here for two...". He let his voice trail off. Then a woman (maybe his wife) who was sitting in the guard's car, came out of the vehicle and started yelling something in Hindi. He yelled back at her so she went in the car again. Right after that exchange a car from another "mourner" pulled up behind me so I had to leave. The whole experience made me want to disintern Ethan to put him somewhere else! I left there crying and upset with the negative energy that would NOW be associated with visiting Ethan. As if visiting him weren't hard enough....

Friday 11/13/2009 I spoke with the general manager for Holy Cross. I told him all about what happened between the guard and I the night before. It appeared that the guard got to the manager before I did. The manager apologized, but also covered up for the guard. He insisted that they set this new rule for safety. The manager also said he saw the whole encounter and insisted that it was 5pm when I got there. (It totally wasn't.) There wasn't anyone one outside of the office when the guard and I were at the gate! I let it go because I figured there was no use in arguing with him. The whole meeting I had with the manager went no where. I've switched my visiting hours instead. It's a shame really. I hope I never have to see that guard again.

Saturday 11/14/2009 Party at my MIL's house. Manny Pacquiao proceeds to kick the living crap out of Miguel Cotto. And the crowd goes wild! Another lazy Sunday, Monday, and Tuesday followed...

Week 3 Highlights:

Wednesday 11/18/2009 I received a phone call from Kevin's teacher right before my lunch hour. She sounded irritated and advised me that she sent him to the Principal's office for lying about finishing his work again! I informed her that I was getting equally tired of addressing this issue almost daily. I asked her AGAIN what her game plan was to prevent the problem and she responded "I honestly don't know. Hopefully the trip to the Principal's office will help." She's been teaching for almost 30 years and it seemed to me that she gave up! She's setting him up for failure by carrying on this way. She even had the audacity to suggest MORE change at home, but I'm convinced that she's the problem. I reminded her that I can't be in class with him and we do plenty of enrichment and reinforcement at home. I asked her if she saw the baseball note. She said yes, but she proceeded to inform me that it was a distraction! Then, it finally dawned on me that Kev probably lied to her because he's scared. Kevin is not the type of kid that belongs in the Principal's office. He isn't rebellious, unruly, or defiant. He does not respond well to yelling or intimidation (which this teacher is known for). I made a point to call Kevin's PIP teacher to see what she noticed. Kevin did better on Thursday because he was so terrified of getting in trouble again.

Friday 11/20/2009 It was John's 27th birthday, but he had work. :( I already had the afternoon off so I got a much needed haircut. I ONLY wanted a trim, but she hacked off 6 inches and I was absolutely depressed afterwards. I was trying to grow my hair so I could donate it to Locks of Love. I tried to plan a last minute celebration for John, but the weather sucked (thank you rain!) so he didn't feel like going out. We went to Akagi and purchased "UP" on Blu-ray instead. Happy 27th Birthday John!

Saturday 11/21/2009 John was supposed to get a tattoo, but the artist cancelled. We went to a birthday party in Tracy. It was the cutest little pajama party ever!!! I wish I took a picture of the cake because it was totally cute! I saw Niki crawl for the first time. John and I were so proud! I called my MIL into the room to show her that Niki was crawling and she told me that Niki started crawling last week! Bummer. I guess that goes to show how overprotective we are. Nevertheless, John and I only count what WE saw as Niki's "1st". :)

Sunday 11/22/2009 Tattoo time! Kevin went to a basketball game with my niece Demi so it was just John, Niki, Boo, and myself. We spent the afternoon shopping on Haight while John got his tattoo. Walking Haight with two kids is tough! Boo decided to have a mini-tantrum (of course, I took pics!) and Niki was the one that was an angel. When we got back to the shop, John was almost done. Apparently, it hurt like hell right over his sternum. I wish I was there to see him squirm!

Week 4 Highlights:

Monday 11/23 - 11/25/2009 Just another boring ass work week. As always, I continued to be annoyed with the MD I work for. She's nice, but so utterly helpless. And don't even get me started on all the crappy stuff I see her do and say on an almost daily basis....

Thursday 11/26/2009 Niki's first Thanksgiving! Our little family matched which is admittedly lame and awesome at the same time. I desperately wished Ethan was there with us. My camera decided to crap out on me so I didn't get to document the holiday accordingly. Thank goodness for the Canon Loyalty Program. (Big shout out to my big sister for telling me about it!) My new and upgraded Canon is expected to arrive by Wednesday. I'm hoping this new camera will outshine by beloved (but sometimes grainy picture quality) PowerShot. I can't wait to start pointing and shooting again. I'll upload pics soon! :)

Till next time folks...

Monday, November 23, 2009

More Catching Up...

All Souls Day 11/1/2009
The Four Little Lions...
Caught on Candid Camera: Kevin praying over his brother...

Our Halloween was followed by an equally awesome All Souls Day. We went to church and spent some time with Ethan at the cemetery. The weather gorgeous so we decided to head on over to the city for some Sunday afternoon randomness. We ended up at Fisherman's Wharf and stumbled upon pretty cool FREE stuff to do. :) SF was unusually quiet thanks to the Bay Bridge closure. Parking was phenomenal that weekend. It was such a good day! We went to Musee Mechanique and an exhibit called Plastiki. Naturally, I played paparazzi and took tons of pictures...

The "Ghost Bridge"... Toothpick Ferris Wheel @ Musee Mechanique... One of JD's rare smiles...Random Photo by yours truly...
The 2/3 of the boy cubs @ Plastiki
Another random photo taken by yours truly at Plastiki...

I love unplanned outings! You never quite know where the day will take you. Weekends like this make me wonder how the hell I managed to work seven days a week all those years! I missed out on so many opportunities to do cool stuff with the kids. Even though it I hate NOT being in school (and not raking in the dough by working weekends), I'm glad that I finally have the chance to make up for lost time. Family time rocks. :)

The rest of the week dragged on. I loathe going back to work when the weekend is so super awesome. Excitement returned back into my life by Thursday (11/5). Niki woke up with a fever (99.5) and Anthony was complaining of "ears herding". I HAD to go to work, but managed to get an appointment for the kids pretty damn close to my lunch hour. Thankfully, Niki's fever never reached 101.5. It turns out that Niki and Anthony had infections in the same ear. (The right one.) Amoxcillin was set to be our "best friend" twice a day for 10 days. Whoopie! Anthony also appeared to have the early signs of "viral conjunctivitis" so, because their Pediatrician is super awesome, she decided to send both kids home with eye drops "just in case".
For the record, I *totally* thought the "same ear infection debacle" was the cutest thing ever since Anthony and Annika BFF.

Hey....when life gives you lemons, you make lemonade right? ;-)

I work two floors up from Pediatrics. Lugging around the two kids by my lonesome triggered my asthma so I had to go to my desk (with the sick kids in tow) to pick up my inhaler. Bad decision on my part. Apparently, I caused tiny panic with a few unnamed co-workers who freaked out from being around my kids. Their ear infections and *possible* eye infections made one of my co-workers uneasy. I felt like such an ass. I honestly didn't think anything of it when I brought them upstairs with me, ya know? I figured that we see sicker people (see: H1N1 cases) on a daily basis. Nevertheless, after I got my breathing back in order, my manager nicely advised me to get my germ-spreading children home...stat!

Ugh, so embarrassing.

When I got back to work I apologized to my co-workers. Really, I felt like such a dork. Thank goodness it was Thursday when this happened! That meant I didn't have to feel uncomfortable for much longer. As it turned out, my germ-spreading fiasco was quickly overshadowed by the afternoon anyway. There was a HUGE departmental change (see: drama) that affected some of my own interpersonal relationships. After everything that happened with Ethan (and the support they gave me) I look at my co-workers as my friends too. Needless to say, I was pretty bummed for the rest of the day.

Friday ended up totally sucking too thanks to said "co-worker drama".

On the upside, I spent my weekend indoors just being lazy. I needed to recuperate from the week's events anyway. And, the kids needed some rest too. Meanwhile...the Amoxicillin worked its magic. Boo and Niki were much better by the end of the weekend.

More "catching up" to come...

Sunday, November 22, 2009

Catching up...


Welcome to The Wizard of Oz...

I hate playing catch up. I always have so much to blog about, but so little time to blog about it. So, in lieu of typing up a super duper long entry, here is a synopsis of what happened that the conference. ;-)

If you read my last blog entry, then you may remember that Niki was better just in time for the National Hemophilia Foundation's "Building Bridges" Conference at the SF Marriott. It was a three day conference that was held from 10/29-10/31. NHF said over 2,000 people would attend and they did not lie. The conference hasn't been held in SF in a long so we felt super fortunate that we could attend our first conference in our own stomping grounds. We felt even more fortunate when we learned that an expert on Factor VII Deficiency would be speaking at one of the sessions.

Some highlights from the conference:

- Finally had the opportunity to meet all of the "Sevens" I've been corresponding with via e-mail. Niki had a special bond with all of them. She liked her "seven family" immediately which is amazing because she doesn't typically "like" strangers. (She's a diva like that.) I finally met Niki's sweet "Grandma B" at the "Women with Bleeding Disorders" session. Grandma B is the reason why Niki is LadyBug. We also saw an "old Seven friend" there too! I also so happy to finally meet the veteran "Mom of two Sevens". She and her boys are absolutely wonderful people! They even gave Niki some gifts. :)

A "7" so she always remembers that she isn't alone...
The Bruzer Bunny. It's used to teach young children about hemophilia...

- John and I did some serious networking and met tons of people heavily involved in the community. We attended lots of educational sessions too. And don't even get me started on the free stuff!!! (Seriously, everyone was treated like royalty there!) Each and every person we met was positive and friendly. I even met two more "Sevens" by chance while I waited for an elevator. The networking must have worked because when they approached us they told me that they "heard about" Niki. I suppose we weren't too hard to spot since there weren't too many Asians there anyway. ;)

- I attended a "Parents of Infants and Toddlers" session and the moderator was a doctor I met from Stanford back in March. He knows about our family because Dr. Awesome called to consult with him when Ethan and Niki were both diagnosed. He was so surprised to see us there that he took a moment to talk about Niki and how she & Ethan were both interesting cases. He emphasized how neither one of them should have even survived in utero because their FVII severity is typically  "incompatible with life". After the session, he talked to me privately and marveled at how well Niki was doing. He told me that he thought of her sometimes and that says a lot about his compassion as a Hematologist.

- John and I stumbled upon an awesome local Filipino woman (around our age) who is heavily involved in the local hemophilia chapter in Emeryville. She approached us immediately. Asians are already rare in the bleeding disorders community, but Filipinos are even rarer. Of course, she bonded with Niki immediately. (Lol...what's not to love, right?) In fact, my baby girl's new "Ate" plans on taking her under her wing. She says she's going to make Niki her protégé. :)

- On Saturday, I participated in something called the "ClotNot Doll Project". I made two dolls for a traveling exhibit that helps raise awareness for women in the bleeding disorders community. Naturally, I made a doll for Ethan and Niki. I tried to get John to make one but he was "too cool". Lol! I must say it was very therapeutic to make those dolls. (Ya'll know I'm a sucker for "crafty stuff".) After I finished making the dolls, a very nice lady from NHF approached me and asked to take my picture. She also asked me a few questions about "my story" and the link I had to the community. I really didn't really think anything of it until the next day. John opened up NHF's newspaper and there was my picture! It's an awful picture, but nevertheless it was pretty cool and humbling to be in the newspaper. :)

The Newspaper...

You can SERIOUSLY tell that I didn't think my photo was going anywhere special.

- The Final Night Halloween Event was a blast. I even threw together an impromptu Wicked Witch of the East costume to match the kids. (Being the "cool guy" that he is, John opted to attend sans costume.) Anyway, there was a carnival, live music, dancing, free grub, tons of dessert, Starbucks!, buckets and buckets of candy, professional photographers, a "make your own hat table", and tons-o-fun! The boys even went stage (with a bunch of other kids) to sing YMCA in front of at least a 1,000 people. They were loving every minute of it! There was a costume contest too. The contest participants were picked during the "kiddie costume parade", but the kids didn't get selected. In fact, we were merely watching the costume contest take place when one of the announcers noticed us standing on the side of the stage. They called us on stage in the middle of the contest! And the kids won the grand prize! Our Borders "swag bag" had a Wizard of Oz DVD in it so I guess it was fate! :) Even though he was there in spirit, I still wish the "Scarecrow" was there to complete the moment.

Right before the kids won the contest...

All in all, the conference was an awesome experience. John and I were glad the boys had as much fun as they did. We all had the opportunity to see the positive side of being part of the community. Here's a plus: The boys think it's "so cool" that their sister has a bleeding disorder. They're already looking forward to next year's conference in New Orleans. John and I are too! I'll write more "catch-up" entries soon. In the meantime, here are some pics for your viewing pleasure... :)

Me and the kids: "The Oz Family"

Dorothy and her Daddy..The "Wicked Witch of the East" and "Dorothy"...
The Tin Man and the Lion singing "YMCA"
John and the "Oz kids"...
"The Oz Kids" were a hit that night. :)
The BEST Halloween ever!
Carnival Games Galore!
Our family picture....