Wednesday, February 20, 2013

no night nurse tonight

hi peeps,
So, our wonderful night nurse Bianca had to cancel on us tonight her son was having breathing difficulties and she had to take him to the ER, he suffers from asthma, so it seems to have gotten really bad. Unfortunately, she didn't text me until 10 pm, an hour before her shift, so of course it was impossible to find a back up nurse. But it's ok, it's not like we haven't stayed up all night before. We decided to have me take the first shift (11pm-4 am) and Zev gets to sleep a little, then he takes over for the rest of the shift (4am-7am) that way, we both get some rest at least. I actually prefer to stay up late first, since it's harder for me to wake up in the middle of the night. Plus I had a nice warm cup of coffee from Trader Joe's (yummy) and that was more than enough to keep me awake for 5 hours.
Leah has been having a bit of a rough time these past couple of weeks. She has finally been weaned off of the afternoon dose of Onfi (Clobazam) and is only taking it twice a day now, 10 mg each dose. Since she's been on this particular drug for a long time, it's been rough for her and she's been having some withdrawals from the wean. We see more spasms come out, and a couple of seizures, though they didn't last very long and the neurologist said that this is common when weaning off seizure meds. We are going to go see her ketogenic nutrition team next month (they are always booked!), and hopefully they can see about adjusting her formula to make it a bit stronger to help with the breakout seizures as well. We've also noticed that she's been growing a lot lengthwise but her weight hasn't really moved above 22 lbs. in a few months, so it'll be good to see where she is on the growth chart and maybe increase her calories if needed. I think they just haven't wanted to make any drastic changed to her diet while she's been weaning off her meds too, which is why they haven't adjusted it sooner.
In other news, LEAH TURNED 2!!! I almost can't believe it, it doesn't feel that long, yet in a way it feels longer, lol. I'm sure you guys know what I mean. Time is a very funny thing, sometimes it feels like time stands still, and yet 2 years fly by and she's still here, fighting and growing and living. And to think that the doctors told us she wouldn't make it past 1. We continue to fight along side her and have hope that she will beat this disease.
We had a great time at her birthday party, which was hosted by our friend Rebekah and her daughter Miranda. We met her through Leah's facebook page last year, and she helped us get a space at UCLA for her first birthday and this year, she offered her house for the party, as well as got the cake, activities and food/drinks for our guests who were a small group of friends and family, since we couldn't impose on her and invite tons of people. Leah enjoyed it except for in the afternoon where she had a little tantrum because she had to pee, and was getting all worked up. After cathing her and having daddy hold her in his arms for a while, she was taking a nap, probably exhausted from the fit she had earlier, haha.
It was great because  a lot of the people I invited had kids and brought them along, so it was very fun to watch them interacting with each other and the other guests, as well as Leah. One of the kids of my friends Virginia and Brent was watching me as I fed Leah through her G-tube and couldn't stop staring, until she finally asked me what I was doing. "Leah eats through this tube that goes into her tummy. It's really hard for her to eat like you and me with her mouth so we help her by putting her milk in this tube and goes straight to her tummy, see?" I couldn't tell if she understood or was just more intrigued by that, then she asked me what the tube was that was coming from her neck and I told her that because Leah is weak, it's a machine that helps her breath. I don't know what might have been going through her head but I'm glad she got to meet Leah and learn that children who are differently abled exist. Not everyone can run and jump and skip around. I remember when Leah first got sick and I would cry whenever I saw a kid that was "normal", thinking why my baby couldn't be that way, that it wasn't fair, but it's funny, because now I don't think that at all. I don't feel sorry for Leah, I feel glad that I can teach kids that people like Leah are not weird, just different. They are still kids, they still can feel you, and Leah can hear and sense people, I know because I can tell that she is aware still. I think the more we teach them about tolerance and compassion, the better it will be for society in the future.

Oh, and we also posted about this on our FB page, but we are participating in an art auction for Leah next month. People have alrady started donating art pieces for auction with the intent to raise as many funds as possible. Zev and I are still trying to get the Princess Leah Foundation up and running but it will take some initial costs of setting up the business as a non-profit and legal fees, etc. So, we talked and thought that it would be great to also give back to those in need, since we've received so much. We are splitting all the funds 4 ways with 3 other families who have daughters with mito: Izzy, Autumn and Kylee. I've posted their pages here before, but there is a lot more info on our facebook page, so be sure to go there if you are interested in learning more about it. And feel free to message us through FB as well if you would like to donate an art piece to auction. I will probably be painting a few watercolor pieces as well, so be on the lookout for those ;)

Well, I have to feed Leah her 3am feeding now, so I will depart, but I will post again sometime this week. I forgot how good it felt to write
Much love and peace to you all,

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