Wednesday, May 30, 2012

Just keep swimming...

Hey guys,
Sorry that it's been so long.....actually, I'm going to stop apologizing in every first sentence of my posts, you know that I want to update sooner and you most likely know why we don't have time usually, so I'm going to stop telling you every time.

Ok, now that that's out of the way, on to the updates!

Leah got a new medical bed, which was donated to us from MedLift, thanks to one of Leah's Angels group supporters, Phil Wilson. It is a fantastic bed, since it allows us to change the angle of the bed with the touch of a button. We typically had her on pillows so that when she was eating she was propped more upright. Since she has a trach, she can't lie flat when she eats because there could be reflux from the stomach that goes into her lungs and that would be really bad. The bed really makes it easy for us to adjust the angle to what we think would be most comfortable for her. It also doesn't strain her back like the pillows did and it vibrates, so when she is more restless than usual, we just turn it on and it helps her fall asleep. It's much bigger than her old bed, so now we can sleep next to her and cuddle without straining OUR backs either!It's been really great, we just got it on Friday, and we love it.

We also got some bad news from our Medi-cal office. It turns out that my income is a couple hundred dollars more than the threshold to qualify for free medi-cal, and now our share of cost is really high, like almost $3000 per month! We're in the process of talking to CCS (California Children's Services) so that they can fund the nursing hours that we need, so hopefully it will get resolved soon. It's just so stressful to navigate the whole medical system in this country. I wish I could just bring one of the people over to the house so they could see her and then tell me that she doesn't qualify for these programs. It's so ridiculous. Anyway, I'm trying not to let it bother me, and just continue with all the bureaucratic BS that I have to do.

We are talking to some people from Chai Lifeline Foundation to help get us in touch with this neurologist at CHLA called Dr. Richard Boles. He is a specialist in the mitochondrial disease field and we really want him to see Leah. We love our docs at UCLA, but we don't really feel like they have all the experience and expertise necessary to really give her the very best treatment for her disorder. We need to talk to someone who's seen hundreds of cases like hers and maybe re-asses the drugs she's on. Right now she's still on Topamax, Keppra, Clobazam, Clonazepam, Lasix and several vitamin supplements. But the problem is that she's not really getting any better and we know that it could just be the progression of her disease but I question the need to be on so many drugs when she's already on the Ketogenic diet for seizures too. I've noticed that since she had the big seizure in November (also when they started Topamax), she has stayed really puffy and she's been retaining her urine for very long periods. She still pees the right amount, but sometimes, like yesterday, she doesn't pee for 17 hours! Can you imagine holding your pee for that long? It must be super painful! And when she pees, she really struggles to get it out, and she's just miserable until she finally goes. The past few days she's been peeing every 12 hours on average. But that's still a really long time and even though the doctors say they think it's her neurological status (as in, her brain is not working well so her bladder doesn't get the message to pee), I have my concerns that it could be a side effect from some of the drugs she's on. She's also been on Lasix (a diuretic) since November for the puffiness but she isn't getting any less puffy. 

We thought that a way to help her pee, could be to use gravity since when she would sit in our laps, she would pee a little easier so we got her a potty chair. And funny enough, the potty has really helped her poo more, doesn't help as much for pee, but for poo it's great. the gravity really helps her get everything out. Sorry, it must be really gross hearing all this, but this is our lives. We celebrate every time she goes to the bathroom, because it's so hard for her to go. Here's a pic of her going potty with the help of Nurse Jill, haha (Leah's gonna hate me for this when she gets older). Jill has got to be really dedicated to put her face that close to the potty, she's really become part of the family, along with Betty.

Another cool thing that's going on are a lot of different grops from all over the Star Wars community have been doing fundraisers for her, including an art auction, selling pins and stickers and postcards and badges. They are promoting them on Facebook now,  and I'll ask that they post them on her Facebook page in case anyone wants to participate. 

In other news, we submitted her picture to the KOST 103.5 FM Cutest Baby in the Southland contest and the picture with the most votes wins $5000! So, I'll paste the link here, please share it with everyone you know! We could really use the money and i have no doubt she'll win since she has so many people out there praying for her
The entry with the most votes wins, but you can't cheat and use several emails to get more votes, because we'll get disqualified, so just share it with as many people as you can! and bookmark it so you can vote every day until June 14th

I think I'm gonna do a video post this week too, since it's been a while since we showed you how Leah is doing and it think it would be good for everyone to meet her on video, if they haven't before.

Even though our lives are really busy, I've been trying to exercise every other day with Zev in the mornings and mediating too. We've also started eating a lot healthier which has made a big difference in my mind at least. I sort of feel like the past year, we were taken out of our lives and placed in someone else's life for a while. So I felt like I was just artistically dead for a year, I didn't really draw or animate or do anything that creative. I made a painting while we were in the hospital, but that was it. So, now I feel like it's all coming back. I started drawing again; I suck of course since I haven't practiced, but I don't care, I know that if I do it every night, I will get better. We're also going to start doing family creative night! Nick is pursuing his acting career, and I love animation, and Zev loves music. So, we're going to do improv sessions at home after dinner, where Nick can practice acting scenes and so can I (since animators are actors too , you know), then we'll record it so that I can use it as reference later and animate the scene and Zev will make improv music to the scene. He's a voice actor too, so he'll be practicing acting as well. We haven't started yet, since Nick is in finals, but it's an exciting idea for a cool family project. 
I'm definitely going to be be posting in my art blog again (, but I think I'm going to just post all the drawings that I did in a week, once a week, since it's too much trouble to upload every day.

We also want to start working on a mini documentary, since I love editing too, about the impact that Leah has had all over the world. So, if you want to share a video with us about how/why you got involved or heard about Leah, we'd love to know and put it in there too! This is a longer term goal, of course, but I would like to have at least some of it done by the end of the year.

Well, I think that's about it, I'm sure I'll have more stuff to talk about next time. I wish you all the best and thank you for reading my super long post, I promise to make an effort to post more often!
Thank you for all your support! It really makes a difference!



  1. *hugs* to all of you guys <3 Still praying!

  2. Ok, I know this is random. BUT, you know the old joke of putting someone's hand in warm water while they sleep makes them pee in bed? Might be worth a try, putting her hand in warm water while she's relaxing. Who knows, it might work? Also, a friend of mine with urinary tract issues has a tiny fountain that runs water in her bathroom. She swears the suggestion of running water helps her. She's so attached to the belief that it helps her pee that she has an app loaded on her phone (Baby Soothe, I think) that has running water sounds and helps her go if she's not at home by her fountain.

    Positive vibes and love, love, love for the beautiful, wonderful Baby Leah!

  3. Happy to hear things are getting a little better :) I'm always praying for you guys ^_^