Monday, August 8, 2011

Life goes on...

Hey Everyone,
It's been a while since I posted anything, I thought it would be good to give an update on how Leah is doing. We've been home for about a little over a week now, and it has been really great. The incident last weekend at the ER for the G-tube, was a rocky start, but she's been doing great since then. I've started going back to work full-time, a bittersweet experience. I didn't realize how much I missed working (if you can believe that). I guess it shows how much I love my job, and the company I work for. The environment and people are great, so it's nice to be back in the swing of things, even though things seem to be more hectic than when I left. On the other hand, I miss Leah so much, it's almost painful to leave her everyday. I cherish the few hours I get to spend with her when I get home, and feel guilty sometimes when I take a while to decompress and have a moment to myself. Luckily, the workday goes by very fast for me, so it's not too too bad. I feel bad for poor Zev since he stays at home with Leah all day and has spent the past week unpacking mostly on his own. I helped him over the weekend, but it doesn't compare with the work that he's put into the apartment while I'm away. I'm sort of glad it's him and not me, just because he's so much better at decorating than I am, but I try my best to help in what I can.
We had a pretty good weekend, although the nurse that we got to cover the days off of our usual nurses was not the best. I don't know if he was new or just in it for the money, but he was making all sorts of mistakes, messing up the g-tube, mixing up med schedules, and leaving a mess everywhere. I had to ask the guy 3 times (3!!) to leave the toilet seat down when he went to the bathroom. I mean, come on, that's just common sense, right?Anyway, luckily, my mom came over on Saturday and watched Leah with Mr. Incompetent Nurse and Zev and I headed to the store to get stuff we were missing for the new apartment.
We went over to the mall we would frequent before Leah was born, and when she was a few weeks old. It has a Best Buy, Target, and lots of other shops. Going without her was really hard. Of course on the weekend is when most families go out to the mall, so I shouldn't have been so surprised to see so many kids. It was torture to go and see all these families with their kids, running around, carefree and healthy. And the babies! There were babies everywhere you looked. I know I shouldn't feel this way, but every time I see someone with their baby in a stroller, I feel angry and sad. Why is it that these kids are perfectly fine? I know I shouldn't be bitter, but I still get depressed seeing other people's babies, even our friend's kids, growing and developing at what seems like light speed. It's normal for them to do so, and I don't resent them for it, it was normal for us too, a few months ago. But now, everything is uncertain; a question mark, a fog.

Even so, Leah is doing remarkably well. She's been doing her tummy time and trying really hard to hold her head up. She still has a ways to go, but today she was doing really great, she held her head up on her own for a few seconds. She has also been tolerating her glasses a little more. She had them on most of the day, and was smiling and laughing at Zev when he'd play with her. She was paying attention to the book Zev and Betty (her nurse) were reading to her, and it seems like she was really liking them. She also has been steadily gaining weight. I have seen a huge improvement, just in the past few days. Her little arms and legs are getting chubbier by the day! It's great to finally see some rolls on those little spaghetti arms of hers. I can also tell that her muscle tone is improving. You can actually feel her little muscles in her arms, where as before it felt a bit doughy. I think it may be attributed to the new formula she's been getting. I am still pumping breast milk for her, but I'm not getting as much as before. So, we have to supplement it with formula. She's getting Enfacare, which has an extra 2 calories per serving, and I think it's been helping her gain more weight too.

She is going to see her ophthalmologist next week, and they are trying to get her a pair of baby goggles instead of the glasses, so that they don't move out of place on her face. Her head movements are so extreme sometimes that her glasses end up poking her eyes and she gets even more upset. Hopefully the googles will work better. I also contacted this great doctor called Dr. Bill Takeshita at the Center for the Partially Sighted. I was just reading this great book by Rabbi Naomi Levy where she talks about how her daughter needed to see Dr. Bill and how he just disappeared one day and retired. It turns out that he had one blind himself, and he took a leave of absence for a couple years because it was such a blow. But he's back at his center working and continuing to help kids with poor eyesight. He's only in the Culver City office once a month, so she won't have her appointment with him until Sept. 28th, but at least she's been scheduled for it.

She also had her occupational therapy assessment last week, from one of the therapists who works with Regional center. They are meeting tomorrow to determine is she is elegible to receive benefits from Regional Center or not. I am pretty confident that she will, I mean it's pretty obvious that she is lacking a lot of development just from being in the hospital. I can't wait for her weekly sessions of occupational and physical therapy to begin. I am confident that she is going to develop so much with them.

Well, it's getting pretty late, so I'll sign off, but I will be posting again this week. We have lots of photos to share that I don't have on this computer so I can't now, but I will soon!

Good night and thanks for keeping Leah and our family in your thoughts


Tuesday, August 2, 2011

The World is waiting.

So it's my turn to write, says my wife just before I left her at work. Again? Oh yeah, last time I wrote was a month or so ago...the only time I wrote. I just went back to read my post too...Oy--I was stressed and I had a dash of I.C.U. psychosis to add. This post will be different. No really. I mean that. :)

No Longer Alone in this...

Almost 4,000 followers on her Facebook page at May The Force Be With Princess Leah.

2 Support groups

Over one hundred TV stations; both here in the U.S.A. and around the Globe like Croatia, Italy, France, Spain, Peru, Ecuador to name a few.

Radio Stations and PODcasts

This blog alone gets close to 3000 visits a day on a good day.

International Costuming clubs from around the world like the 501st Legion, Rebel Alliance, Saber Guild, and a few Sith's too, have been and will be raising money for Leah. So far, a joint
effort spear-headed by two great and amazing gentlemen (and my buddies) Jason Watson and PJ Raines have been able to raise over $30, 000.00!

A proactive support group called Princess Leah's Angels that come up with smart unique ways to gain attention for our cause and raise money for her.

Hundreds of emails a week and letters sent the old fashion way, have managed to reach us from all over. We love getting them and especially the ones that are written by children who tell us Leah is in their prayers.

Gifts like quilts, teddy bears, clothing, toys, and even a Faberge' egg from abroad, made it to our
hospital room.

And best of all, we were contacted by an attorney and an accountant here in L.A. that want to start a Foundation in her name that will help aid children just like her. It will be called The Princess Leah Foundation or "PLF" for short.

We don't feel so alone anymore. Princess Leah is no longer invisible to the world.
We also know that it is NOT about her either. It is about all the thousands of children that are STILL undiagnosed. It is about the children that cannot get the adequate care they need because of our current health care system. It is about the children that have passed away because they were not blessed being born to a family that could afford medical coverage.
Indeed, we are very lucky. And very, very blessed.

So before I go on I have to say THANK YOU WORLD for finding us. And God Bless you ALL!


Well, let's see, 60 plus days in the Intensive Care Unit and the rest on the "regular" floor at U.C.L.A. medical center, A car breaking down, an apartment on fire, finding a new place in a few days, was very stressful too. Not to mention, a couple of return visits (yes again) to the E.R.! Luckily, we can still find the light at the end of the tunnel and our immense sense of humor and our faith is allowing us to survive.

The latest "drama" with Leah was a recent visit to the E.R.. This time, it was due to the fact that her G-Tube (the feeding tube that comes out of her tummy) was clogged up. Luckily, it only took 8 hours for the team at U.C.L.A's ER to get that taken care of. Other than that, we were able to
resolve the air conditioning problem we had at the new apartment...or should I say lack of air conditioning. We had to use some of her charity funds to pay for an air conditioner for Leah's room at the apartment. $475 dollars later (OUCH), she is now the coolest kid on the block (literally).

People keep telling us the saying "God only gives you that which you can handle." Okay, I can now say in all honesty, I know I can handle a lot. How 'bout a break? Just one, so I can take a breath in-between our latest "adventure". One of my friends told me that God is giving me all this for a reason...that he is making me do some spiritual bench pressing. If that's the case, then I have developed bigger muscles than Arnold Schwarzenegger! Speaking of AH-noll, the governator himself was also at U.C.L.A. taking care of his child who was unfortunately in an accident recently. We passed each other at the cafeteria and sort of acknowledged each's a guy thing. I have to say, he is a lot shorter than he looks on the widescreen.

My wife calls me the mayor of the hospital. I tend to make friends fast and easily, and despite having issues with names, I do my best to say hello to everyone I know. Mama raised me well. When you've been this long in the hospital you get to know everyone.
I remember when I first arrived in Los Angeles, times were really rough. This was before I met Frani. Or as I call it BF. I couldn't find a decent job but I eventually found one as a gardener. Not what I came out here to do, but it was a job. The owner of the business was very good to me. But, it was rough. I remember how "invisible" I was to the people back then, so I make it a point to say hello to EVERYONE involved in the maintenance of her majesty. Whether they are doctors or the clean up crew. They are all equal in my book.

As many of you have read, we were finally home...but it was for a short while. It seems Leah had contracted Tracheitis at the hospital and it began to show the moment we got to the house. She had a high fever, and wasn't responding with her melting baby smiles. So, off we went back to the E.R. and then we were admitted for around a week. Her stay coincided with the Check presentation from the recent Charity Raffle P.J. Raines (as mentioned above) had started.
It was such a great event. The press was there too. It was amazing seeing Darth Vader, Obi Wan Kenobi, Yoda, Stormtroopers, Clonetroopers, and Mandalorian Mercenaries from the Star Wars universe there. The Mando Mercs club, even made Leah an honorary member! They even gave her a name in Mando'a SOLUS ANTINIIR -the one who unites and has enduring strength! Nerdy I know, but you have to admit, it's still pretty awesome.

Speaking of awesome, my son was able to come and visit and meet his half sister for the first time (yes, I had him young).It was a little overwhelming since Leah was having some pretty extreme movements--her movements get a little worse when high fevers hit. He wasn't used to that. Hell, when does anyone get use to seeing an infant have seizure-like movements. I never will. He asked to step outside.I could tell he needed a moment. Later, he confessed that seeing his step-moms strength and mine was good for him and eventually, he was helping me change her diapers and entertaining her. My teenager was now a young man. I want to thank his mom for allowing him to come and visit too. Despite being here for only a week, I felt we really bonded. It was the quality of the visit that I was happy about rather than the time. He even got
to see a few celebs out and about. He'll always be my baby, no matter how monsterously tall he gets. I wanted to make sure to mention him as well, because I realized that I hadn't, and it made me feel really bad. I didn't want him to feel I was "editing" him out of this. He's part of the family and he's going through the same pain. It can be tough for him too since he lives a few states away. I LOVE YOU SON!

A group called PRINCESS LEAH's ANGEL's have certainly become that to our daughter. They have become more than just a support group...they are now family as well. It is an invite only group that was started by a wonderful Brazilian woman (also a member of the Mando Mercs Star Wars club). Her name is Mary. Within a few weeks, members, and some celebrities as well, joined this pro-active invite only group. They screen all who want to join. As Mary told me "I
want only people that are going to make a difference and not just reply to my posts...I want do-ers not readers." Crack that whip girl. The others in the group (now 200 or so), have managed to keep me sane, by providing a private place where I can whine and bitch about things and not feel bad about it. LOL They have developed strategies and products to help us out with all the overwhelming costs we are having to deal with. I will post the links below to all the "PFL" approved items at the end of this blog. They have wristbands that read MTFBW LEAH...ALWAYS, a collectors challenge coin approved by George Lucas with Leah on it,info fliers, and buttons to name a few of their amazing feats. We owe a lot to our friend and Leah's Angel's member David S. for telling KTLA about our little Leah. If it wasn't for his initial phone
call, we would probably be out living in the street somewhere.

We owe a lot to Leah's new family. If it wasn't for the Charity Raffle and Donation page they set up for her, we wouldn't have been able to afford the bigger place. We needed a bigger place for all her equipment. The poor kid needs more than a few to keep her going. Still, she's a fighter, and hopefully one day she'll be able to get off of those machines. And now, that my car is dying, we're going to need a dependable car or van (we have to transport her portable machines with us). Hopefully, with some of the money raised, we'll be able to get something we can afford and that won't break down like my current vehicle. It's got over 200,000 plus miles...but it's been as good as it could be for all the wear and tear it's been through. Keep rolling baby, I need ya for a few more miles. My friend told me about a Police Auction where you can get a great deal on a car. We're talking $500 for a 2006 van. That's the kind of deal I'm looking for. Dependable and affordable.

Leah's doing really well as she is now back in her own room. The past few nights, she has been sleeping through the night with no real issues. You are going to laugh, but at first, I thought there was something wrong with her. I know, I know, I'm paranoid. Hey, do ya blame me?

We finally came across some great nurses that the insurance is proving us with (at least for now). They have admitting to falling for Leah's wonderful aura of strength and triumph. It's good to have people like them on our side. I'm glad they love my baby too.

She's doing okay with her new glasses too. She really hated them at first, but eventually she "tolerated" them. I'm not sure how long that will last but I'm hoping she'll love them because if she doesn't, her eyes will forget how to see. If a baby that young doesn't see for a few months they'll lose their ability to see. NOT GOOD. It's hard enough having what she seeing has to happen.
The other day we went to get her new contacts too. Yes, contacts! To be honest with you, it's a little tough trying to stick contacts into an infant with a moving disorder. It was a challenge but I passed the test! It was the most incredibly moving moment, when she realized she could see me and she gave me her little smile. YEY! My baby can see me! A BIG THANK YOU also to Doctor Pineles, Dr. Woo, Dr. Velez as well. They are doing a great job keeping us on track with her eyesight. Let's just keep our fingers crossed (and prayers) that she develops her sight well.

As far as her movement disorder...well, we now know that it has to do with the neurotransmitter. We also know that she can function a little with the Tegretol drug. Her movements are not completely gone but they are much better. There is still many risks for her. But she's a little fighter. Each day we count our blessings and thank THE FORCE that she is with us. She's still not at the point where we don't have to worry much. Let's say we're at a 7 on the worry scale. It seems that her mind is where it should be but her body will have to do some major work with Physical and Occupational therapists. One day, we hope she'll be able to breath on her own and eat on her own. For now, she's tied up to a few machines that keep her going.

She recently went to see her Pediatric Doctor. He's a great guy and has been a lot of help. His staff is also amazing. They actually give hugs as well. LOL I know it's been hard on him as well.
Everything went fine.We talked about fine tuning Leah's medication and talking to the Neuro doctors some more on what we can do to eventually get rid of most of the movements so that hopefully in the future she'll be able to walk and talk like normal kids. He also reminded us about some other programs we can try to get to help us with all this medical fiasco. I'm glad he is also getting us a handicap tag for the car. It's a pain trying to juggle the baby, the oxygen tank, and the rest of her equipment. Luckily, we have a nurse (for now) that helps me out with that. Still, it's a mission.

Over all, our morale is reasonably high despite all the crazy things that happened within the last week or so. Frani is back to work and is surrounded by many positive people there. In fact, she moved to the art department, where she wanted to be! Hurray Frani!!! I'm having to play the role of stay-at-home dad since her job is what allows us to have the medical insurance. I can still work from the house when I am not running around taking the Princess to see one of her doctors. I'd be lying if I told you I wasn't nervous about being alone with Leah and the nurse. Frani has been there since the beginning by my side. But, I have no choice but to do my best.

I try to do my best to keep Leah in my most positive thoughts, but sometimes it hits me that we really don't know what her future will be like. Sadness, tries to take over me, but when that happens, I turn on my computer, and read all the wonderful emails and letters sent to our Princess Leah. As I said, we are no longer alone. I'm also very lucky to have the best wife in the world! Without her I'm nothing.

Thanks for taking the time to read my side of things.

Much love to all Princess Leah's supporters!
May The Force Be With YOU...Always!


Below are the links for the

There is also a new Raffle going on that another friend of ours is doing. You can read more on Facebook about it. Here is the link. They have awesome collectibles on there! Thank you Soaring Hammer!

The Donation link is on the Right of this blog in a widget. Or click here.

All of the above have been approved by us. If you ever run across anyone who you doubt is affiliated with our cause and helping Princess Leah feel free to write us. Most if not all of the proceeds go to help our baby.

Special thanks to Michael Stanton II for making the coins. Gingersnap and Jessica Painter for making the wristbands a reality. Of course, all of Princess Leah's Angels as well! Thank you Angels for being in our lives.